DisabilityInfo.org - Resource Database
1:1 Specializing
Personal Touch Home Aides
697 Cambridge ST
Suite 204
Brighton, MA
(617) 783-0700
Program Type(s):Home Health/Personal Care, Respite
Record last updated on:3/19/2012
Adult Day Services
Gardner Visiting Nursing Association
34 Pearly Lane
Gardner, MA
(978) 632-1230
Program Type(s):Outpatient Medical/Allied Health
Record last updated on:3/30/2009
Adult Family Care
Franklin County Home Care Corporation
330 Montague City Road
Suite 1
Turners Falls, MA
(413) 773-5555 - 255
Program Type(s):Adoption/Foster Care, Adult Family Care/Adult Foster Care, Aging, Community Based Residential Services, Day Care, Housing, Information/Referral, Legal/Advocacy, Options Counseling, Outpatient Medical/Allied Health, Respite, Support Groups-Networks, Transportation, Vocational
Record last updated on:5/30/2008
Aging Service Access Point
Boston Senior Home Care
99 South Street
# 500
Boston, MA
(617) 451-6400
Program Type(s):Aging, Options Counseling
Record last updated on:3/25/2009
Aging Service Access Point
Old Colony Elder Services
144 Main Street
Brockton, MA
(508) 584-1561
Program Type(s):Adult Family Care/Adult Foster Care, Aging, Case Management, Food and Nutrition, Home Health/Personal Care, Housing, Information/Referral, Options Counseling, Respite
Record last updated on:7/12/2012
Aging Service Access Point
Elder Services of Worcester Area, Inc.
67 Millbrook Street
100
Worcester, MA
(508) 756-1545
Program Type(s):Aging, Case Management, Community Based Residential Services, Consulting/Training, Day Care, Family Support, Food and Nutrition, Health Insurance, Home Health/Personal Care, Information/Referral, Options Counseling, Respite, Support Groups-Networks
Record last updated on:3/7/2014
Aging Service Access Point
Tri-Valley, Inc.
10 Mill ST
Dudley, MA
(508) 949-6640
Program Type(s):Adult Family Care/Adult Foster Care, Aging, Case Management, Family Support, Food and Nutrition, Home Health/Personal Care, Information/Referral, Options Counseling, Respite
Record last updated on:8/23/2013
Aging Service Access Point
Montachusett Home Care Corporation
680 Mechanic Street
Suite 120
Leominster, MA
(978) 537-7411
Program Type(s):Adult Family Care/Adult Foster Care, Aging, Case Management, Group Adult Foster Care, Information/Referral, Options Counseling, Respite, Support Groups-Networks
Record last updated on:3/7/2014
Aging Service Access Point / Area Agency on Aging
Minuteman Senior Services
26 Crosby Drive
Bedford, MA
(781) 272-7177 - x7064
Program Type(s):Aging, Case Management, Home Health/Personal Care, Information/Referral, Options Counseling
Record last updated on:3/17/2014
Aging Service Access Point / Area Agency On Aging
Springwell
307 Waverley Oaks Road
Suite 205
Waltham, MA
(617) 926-4100
Program Type(s):Aging, Case Management, Family Support, Food and Nutrition, Group Adult Foster Care, Home Health/Personal Care, Independent Living, Information/Referral, Options Counseling, Respite, Transportation
Record last updated on:2/15/2013
Aging Service Access Point / Area Agency on Aging
Elder Services of Berkshire County, Inc.
66 Wendell Avenue
Pittsfield, MA
(413) 499-0524
Program Type(s):Adult Family Care/Adult Foster Care, Aging, Case Management, Food and Nutrition, Group Adult Foster Care, Home Health/Personal Care, Housing, Independent Living, Information/Referral, Options Counseling, Respite, Support Groups-Networks, Transportation
Record last updated on:3/12/2013
Aging Service Access Point / Area Agency on Aging
SeniorCare Inc.
49 Blackburn Center
Gloucester, MA
(978) 281-1750 - (866) 927-1050
Program Type(s):Aging, Case Management, Family Support, Food and Nutrition, Group Adult Foster Care, Home Health/Personal Care, Independent Living, Information/Referral, Options Counseling, Respite, Support Groups-Networks, Transportation
Record last updated on:6/6/2012
Aging Service Access Point / Area Agency on Aging
WestMass ElderCare, Inc.
4 Valley Mill Road
Holyoke, MA
(413) 538-9020
Program Type(s):Adult Family Care/Adult Foster Care, Aging, Home Health/Personal Care, Information/Referral, Options Counseling, Respite
Record last updated on:7/9/2012
Aging Service Access Point / Area Agency on Aging
Mystic Valley Elder Services, Inc.
300 Commercial St.
Suite 19
Malden, MA
(781) 324-7705
Program Type(s):Aging, Case Management, Home Health/Personal Care, Information/Referral, Options Counseling
Record last updated on:3/30/2009
Aging Service Access Point / Area Agency on Aging
Greater Lynn Senior Services
8 Silbee Street
Lynn, MA
(781) 599-0110
Program Type(s):Aging, Information/Referral, Options Counseling, Transportation
Record last updated on:5/17/2012
Aging Service Access Point / Area Agency on Aging
North Shore Elder Services
152 Sylvan St
Danvers, MA
(978) 750-4540
Program Type(s):Case Management, Information/Referral, Options Counseling, Respite, Support Groups-Networks
Record last updated on:6/19/2012
Aging Service Access Point / Area Agency on Aging
South Shore Elder Services
1515 Washington Street
Braintree, MA
(781) 848-3910
Program Type(s):Aging, Case Management, Consulting/Training, Family Support, Home Health/Personal Care, Housing, Information/Referral, Options Counseling, Respite, Support Groups-Networks
Record last updated on:4/4/2014
Aging Service Access Point / Area Council on Aging
Franklin County Home Care Corporation
330 Montague City Road
Suite 1
Turners Falls, MA
(413) 773-5555
Program Type(s):Aging, Case Management, Day Care, Financial Assistance/Planning, Home Health/Personal Care, Housing, Information/Referral, Legal/Advocacy, Respite, Support Groups-Networks, Transitional/Supported Employment, Transportation, Vocational
Record last updated on:5/17/2011
Aging Service Access Point / Home Care / Area Agency on Aging
HESSCO Elder Services
One Merchant Street
Sharon, MA
(781) 784-4944
Program Type(s):Home Health/Personal Care, Options Counseling
Record last updated on:5/17/2012
All Care Resources, Inc.
210 Market St.
Lynn, MA
(781) 586-1610
Program Type(s):Case Management, Home Health/Personal Care, Respite, Transportation
Record last updated on:8/28/2013
All Care Visiting Nurse Association and Hospice
16 City Hall Square
Lynn, MA
(781) 598-2454
Program Type(s):Home Health/Personal Care, Respite
Record last updated on:4/21/2009
AlphaCare Home Health Agency
214 Lincoln St
Ste. 202
Allston, MA
617-600-4547
Program Type(s):Case Management, Group Adult Foster Care, Home Health/Personal Care
Record last updated on:1/3/2013
Always On Call Health Services, Inc.
285 Central Street
Suite 214
Leominster, MA
(978) 537-9900
Program Type(s):Home Health/Personal Care, Respite
Record last updated on:9/4/2012
Ameriken Caring Services Inc
199 Revere Street
001
Revere, MA
781-286-6916
Program Type(s):Adult Family Care/Adult Foster Care, After School Program, Consulting/Training, Counseling, Day Care, Day/Work Activity, Early Intervention, Group Adult Foster Care, Home Health/Personal Care, Independent Living, Information/Referral, Mental Health, Transportation
Record last updated on:5/6/2013
Beverly Outpatient Clinic
800 Cummings Center
Suite 266T
Beverly, MA
(978) 921-1190
Program Type(s):Mental Health
Record last updated on:7/7/2011
Beyond Healthcare
Beyond Healthcare Agency
136 Treble Cove Rd
North Billerica, MA
978-930-9410
Program Type(s):Home Health/Personal Care
Record last updated on:5/18/2012
Braintree Access Center
Habilitation Assistance Corporation
30 Foster Road
Braintree, MA
(781) 848-6466
Program Type(s):Day/Work Activity, Home Health/Personal Care, Social/Leisure, Transportation
Record last updated on:10/24/2011
Bright Care, Inc.
90 Madison Street
303
Worcester, MA
508-796-5302
Program Type(s):Home Health/Personal Care, Independent Living, Respite
Record last updated on:6/13/2013
Caring for the Elderly and Disabled
Griswold Special Care
490 Shrewsbury St.
Piccadilly Plaza Suite F
Worcester, MA
(508) 797-0400
Program Type(s):Home Health/Personal Care
Record last updated on:3/9/2012
Caring for the Elderly and Disabled
Griswold Special Care
124 Crescent Road
Needham, MA
(781) 449-0402
Program Type(s):Home Health/Personal Care
Record last updated on:7/20/2010
Community Based Day Program
Triangle, Inc
420 Pearl Street
Malden, MA
(781) 322-0400
Program Type(s):Community Based Residential Services, Day/Work Activity, Transitional/Supported Employment, Vocational
Record last updated on:8/13/2013
Community Services Department
Franklin County Home Care Corporation / Area Agency on Aging
330 Montague City Road/ Suite 1
Turners Falls, MA
(413) 773-5555 - x2215
Program Type(s):Adult Family Care/Adult Foster Care, Aging, Case Management, Community Based Residential Services, Counseling, Day Care, Equipment Funding Assist/Consult, Equipment Loan, Equipment Technical Assistance, Family Support, Financial Assistance/Planning, Food and Nutrition, Group Adult Foster Care, Health Insurance, Home Health/Personal Care, Home Modification, Housing, Independent Living, Information/Referral, Legal, Legal/Advocacy, Options Counseling, Outpatient Medical/Allied Health, Relationships/Friendships, Respite, Support Groups-Networks, Transportation
Record last updated on:8/23/2013
Congregate Housing
Franklin County Home Care Corporation
330 Montagne City Road
Turners Falls, MA
(413) 773-5555
Program Type(s):Housing
Record last updated on:9/4/2012
Coolidge Program
ServiceNet, Inc.
129 King Street
Northampton, MA
(413) 586-6432
Program Type(s):Housing
Record last updated on:4/7/2008
DPH Northeast Regional Health Office
Massachusetts Department Public Health
365 East Street
Tewksbury, MA
(978) 851-7261 - 4011
Program Type(s):Advocacy, Case Management, Community Based Residential Services, Diagnosis/Evaluation, DPH Certified Early Intervention, Early Intervention, Family Support, Family Support birth to 3, Food and Nutrition, Outpatient Medical/Allied Health, Respite
Record last updated on:9/19/2011
Family Home Visiting Program
Pernet Family Health Service
237 Millbury Street
Worcester, MA
(508) 755-1228
Program Type(s):After School Program, Case Management, DPH Certified Early Intervention, Early Intervention, Family Support, Family Support birth to 3, Food and Nutrition, Home Health/Personal Care, Information/Referral, Social/Leisure, Support Groups-Networks
Record last updated on:8/23/2013
Family Support Program
Bay Cove Human Services, Inc.
66 Canal Street
2nd Floor
Boston, MA
(617) 371-3000
Program Type(s):Community Based Residential Services, Family Support, Housing
Record last updated on:11/27/2007
Family Support/PCA Services
Toward Independent Living & Learning
20 Eastbrook Road
Suite 201
Dedham, MA
(781) 302-4600
Program Type(s):Mental Health, Respite, Support Groups-Networks
Record last updated on:10/24/2012
HHA & PC/HM Services
VNA of the Berkshires
165 Tor Court
Pittsfield, MA
(413) 447-2862
Program Type(s):Home Health/Personal Care, Respite
Record last updated on:11/8/2011
Home Care Assistance Program
Massachusetts Rehabilitation Commission
600 Washington St.
Boston, MA
(617) 204-3853
Program Type(s):Home Health/Personal Care
Record last updated on:5/16/2013
Home Care Program
Gentiva Health Services
1 Arch Place
Greenfield, MA
(413) 774-7045
Program Type(s):Home Health/Personal Care, Respite
Record last updated on:2/26/2009
Home Care Program
Ethos
555 Amory Street
Jamaica Plain, MA
(617) 522-6700 - ext 341
Program Type(s):Aging, Case Management, Food and Nutrition, Home Health/Personal Care, Independent Living, Integrated Community Program, Options Counseling
Record last updated on:11/13/2012
Home Care Services
Family Services of Central Massachusetts
31 Harvard Street
Worcester, MA
(508) 756-4696
Program Type(s):Home Health/Personal Care
Record last updated on:8/17/2010
Home Care Services/Elder Protective Services
Franklin County Home Care Corporation
330 Montague City Road
Suite 1
Turners Falls, MA
(413) 773-5555
Program Type(s):Aging, Information/Referral, Legal/Advocacy
Record last updated on:9/6/2013
Home Care, Inc.
360 Merrimack Street
Bldg 9
Lawrence, MA
(978) 552-4701
Program Type(s):Home Health/Personal Care
Record last updated on:9/6/2013
Home Health / Personal Care
Griswold Special Care
490 Shrewsbury ST
#F
Worcester, MA
(508) 797-0400
Program Type(s):Home Health/Personal Care
Record last updated on:3/6/2012
Home Health Care
Partners Private Care
70 Everett Ave. Suite 505
Chelsea, MA
508-879-7070
Program Type(s):Home Health/Personal Care
Record last updated on:6/22/2012
Home Health Care Program
Gardner Visiting Nursing Association
34 Pearly Lane
Gardner, MA
(978) 632-1230 - x3044
Program Type(s):Home Health/Personal Care, Support Groups-Networks
Record last updated on:3/15/2011
Home Health Care Program
Visiting Nurses Association of the Berkshires
75 South Church Street
Pittsfield, MA
(413) 447-2862
Program Type(s):Home Health/Personal Care
Record last updated on:5/29/2013
Home Health Care Services
Home Staff
40 Millbrook St
Ste 1
Worcester, MA
(508) 755-4600
Program Type(s):Home Health/Personal Care, Respite
Record last updated on:8/16/2013
Home Health Care Services / Youth and Family Support
Supportive Care
15 Union Street
#410
Lawrence, MA
(978) 686-1300
Program Type(s):Advocacy, Case Management, Home Health/Personal Care, Respite, Support Groups-Networks
Record last updated on:11/8/2011
Home Health Services
Chicopee Visting Nurses Association, Inc.
2024 Westover Road
Chicopee, MA
(413) 533-6733
Program Type(s):Home Health/Personal Care
Record last updated on:4/6/2009
Home Health Services
Partners Homecare
200 Ledgewood PL
Rockland, MA
(781) 290-4000
Program Type(s):Home Health/Personal Care
Record last updated on:3/15/2011
Home Health/Personal Care/Home Modification/Heavy Cleaning
HouseWorks
One Gateway Center
Suite 902
Newton, MA
(617) 928-1010
Program Type(s):Aging, Case Management, Equipment, Family Support, Home Health/Personal Care, Home Modification, Information/Referral, Respite, Support Groups-Networks, Transportation
Record last updated on:9/28/2011
Home Hospice Care
Gardner Visiting Nursing Association
34 Pearly Lane
Gardner, MA
(978) 632-1230
Program Type(s):Home Health/Personal Care, Support Groups-Networks
Record last updated on:7/10/2012
Home Instead Senior Care
440 Totten Pond Road
Suite 300
Waltham, MA
617-229-7962
Program Type(s):Home Health/Personal Care, Respite, Transportation
Record last updated on:5/17/2012
Home Modifications
Building Matters Inc.
563 Mammoth Road
Pelham, NH
978-490-9966
Program Type(s):Home Modification
Record last updated on:1/10/2014
Homemaker/Personal Care/Home Health Aide
Home Staff
40 Millbrook Street
Worcester, MA
(508) 755-4600
Program Type(s):Home Health/Personal Care, Respite
Record last updated on:4/2/2012
In Home Care Services
Griswold Special Care
24 Adam ST
Quincy, MA
(617) 770-0707
Program Type(s):Home Health/Personal Care
Record last updated on:7/2/2009
Independence Health Care
100 Grove Street
Worcester, MA
(508) 767-1776
Program Type(s):Home Health/Personal Care, Respite, Transportation
Record last updated on:3/9/2012
Independent Living Social Services
Massachusetts Commission for the Blind - Region II
390 Main Street
Suite 620
Worcester, MA
(508) 754-1148 - V/TTY
Program Type(s):Home Health/Personal Care, Information/Referral, Support Groups-Networks
Record last updated on:3/9/2012
Individual Support Services
Cooperative for Human Services, Inc.
17 New England Executive Park
3rd Floor
Burlington, MA
(781) 273-2123 - x 230
Program Type(s):Advocacy, Aging, Case Management, Club Houses, Communication, Community Based Residential Services, Consulting/Training, Counseling, Equipment Funding Assist/Consult, Family Support, Financial Assistance/Planning, Food and Nutrition, Home Health/Personal Care, Home Modification, Housing, Independent Living, Information/Referral, Legal/Advocacy, Mental Health, Relationships/Friendships, Respite, Social/Leisure, Support Groups-Networks, Transportation, Travel
Record last updated on:11/19/2012
Inhome Care
Comfort Keepers
67 Federal Ave
Quincy, MA
617-890-1075
Program Type(s):Aging, Day Care, Home Health/Personal Care, Respite, Transportation
Record last updated on:12/9/2009
Intercity Home Health Care, Inc.
11 Dartmouth Street
Malden, MA
(781) 321-6300
Program Type(s):Home Health/Personal Care, Respite
Record last updated on:8/19/2009
Juniper House Community Residence
Newton Wellesley Weston Committee
1301 Centre ST
Newton, MA
(617) 964-6860
Program Type(s):Advocacy, Aging, Case Management, Community Based Residential Services, Consulting/Training, Counseling, Family Support, Food and Nutrition, Home Health/Personal Care, Housing, Independent Living, Information/Referral, Integrated Community Program
Record last updated on:7/18/2011
Living Assistance Services
Visiting Angels of the South Shore
475 School ST
Marshfield, MA
(781) 834-6355
Program Type(s):Aging, Home Health/Personal Care, Respite
Record last updated on:11/17/2011
Movement Disorders Clinic
University of Massachusetts Medical Center
55 Lake Avenue N
Worcester, MA
(508) 334-2527
Program Type(s):Diagnosis/Evaluation, Outpatient Medical/Allied Health
Record last updated on:5/23/2012
Multicultural Home Care
599 Canal St.
Lawrence, MA
978-689-8666
Program Type(s):
Record last updated on:2/24/2010
Nashoba Nursing Service & Hospice
Nashoba Nursing Service &Hospice
2 Shaker Rd
Suite D225
Shirley, MA
(978) 425-6675
Program Type(s):Home Health/Personal Care, Respite
Record last updated on:8/3/2010
Partners HealthCare at Home
281 Winter Street
Suite 240
Waltham, MA
(781) 290-4000
Program Type(s):Home Health/Personal Care
Record last updated on:9/10/2012
Pediatric/Parent Child Health Program
VNA of Eastern MA
259 Lowell ST
Somerville, MA
(617) 776-9800
Program Type(s):Home Health/Personal Care, Respite
Record last updated on:5/6/2008
Personal Care Assistance
Franklin County Home Care Corporation
330 Montague City Road
Suite 1
Turners Falls, MA
(413) 773-5555
Program Type(s):Aging, Home Health/Personal Care, Independent Living, Information/Referral
Record last updated on:4/2/2010
Personal Care Attendant Services
Boston Center for Independent Living
60 Temple Place
5th Floor
Boston, MA
(617) 338-6665
Program Type(s):Home Health/Personal Care
Record last updated on:3/6/2012
Premier Home Health
657 Quarry St
Ste 107
Fall River, MA
(508) 679-8796
Program Type(s):Home Health/Personal Care, Respite
Record last updated on:7/5/2011
Premier Home Health Care of Massachusetts
Premier Home Health Care of Massachusetts, Inc.
300 W Main Street
St 5
Northborough, MA
(508) 393-8570
Program Type(s):Home Health/Personal Care, Respite
Record last updated on:9/30/2011
Private Duty Nursing, Nursing Services
Centrus Premier Home Care
770 W Boylston Street.
#A
Worcester, MA
(508) 754-8205
Program Type(s):Home Health/Personal Care
Record last updated on:3/26/2009
Programs, Services,Information, and Referrals
Charles River Center
59 East Militia Heights Road
Needham, MA
(781) 972-1000
Program Type(s):After School Program, Case Management, Community Based Residential Services, Day/Work Activity, Family Support, Independent Living, Information/Referral, Respite, Social/Leisure, Support Groups-Networks, Transitional/Supported Employment, Vocational
Record last updated on:7/10/2012
Rehabilitation Teaching
Massachusetts Commission for the Blind - Region I
436 Dwight ST
Springfield, MA
(413) 781-1290
Program Type(s):Home Health/Personal Care
Record last updated on:12/8/2011
Rehabilitation Teaching
Massachusetts Commission for the Blind - Region II
390 Main Street
Ste 620
Worcester, MA
(508) 754-1148
Program Type(s):Home Health/Personal Care
Record last updated on:10/27/2011
Rehabilitation Teaching
Massachusetts Commission for the Blind
48 Boylston Street
Boston, MA
(617) 626-7579
Program Type(s):Home Health/Personal Care
Record last updated on:12/13/2007
Residential Programs
Newton Wellesley Weston Committee For Community Living, Inc.
1301 Centre Street
Newton, MA
(617) 964-6860
Program Type(s):Community Based Residential Services, Housing, Independent Living, Information/Referral, Social/Leisure, Transportation
Record last updated on:2/24/2012
Residential Programs ID/DD
Bay Cove Human Services, Inc.
66 Canal Street
Boston, MA
(617) 371-3000
Program Type(s):Community Based Residential Services, Housing
Record last updated on:9/21/2010
Respite Care
Molari Health Care
80 Center Street
Pittsfield, MA
(413) 499-4562
Program Type(s):Home Health/Personal Care, Respite
Record last updated on:2/17/2012
Respite Care Program
Personal Touch Home Aides
697 Cambridge Street
Suite 204
Brighton, MA
(617) 783-0700
Program Type(s):Respite
Record last updated on:8/19/2009
Respite Care Program/Private Duty Agency
Home Staff
40 Milbrook Street
Ste 1
Worcester, MA
(508) 755-4600
Program Type(s):Respite
Record last updated on:5/3/2012
Right At Home
19 Front Street
Ste 301
Salem, MA
(978) 744-5151
Program Type(s):Aging, Home Health/Personal Care, Information/Referral, Respite, Transportation
Record last updated on:7/6/2009
Roxbury Comprehensive Community Health Center, Inc.
435 Warren Street
Roxbury, MA
(617) 442-7400 - x 228
Program Type(s):Adult Family Care/Adult Foster Care, After School Program, Case Management, Outpatient Medical/Allied Health
Record last updated on:8/25/2008
Social Rehabilitation
Massachusetts Commission for the Blind
48 Boylston Street
Boston, MA
(617) 626-7579
Program Type(s):Home Health/Personal Care, Support Groups-Networks
Record last updated on:12/13/2007
Social Rehabilitation & Vocational Rehab
Massachusetts Commission for the Blind - Region I
436 Dwight ST
Room 109
Springfield, MA
(413) 781-1290
Program Type(s):Advocacy, Case Management, Information/Referral, Vocational
Record last updated on:10/9/2012
South Bay Early Intervention
1563 N Main ST
Ste 202
Fall River, MA
(508) 324-1060
Program Type(s):Diagnosis/Evaluation, DPH Certified Early Intervention, Family Support birth to 3
Record last updated on:7/24/2009
Support Services Programs
Massachusetts Commission for the Blind - Region I
436 Dwight ST
Room 109
Springfield, MA
(413) 781-1290
Program Type(s):Respite
Record last updated on:5/29/2012
Support Services Programs
Massachusetts Commission for the Blind - Region II
390 Main St
# 620
Worcester, MA
(508) 754-1148
Program Type(s):Respite
Record last updated on:10/6/2011
Supportive Community Living & Shared Living
The Arc of Opportunity
564 Main St.
Fitchburg, MA
(978) 345-6301
Program Type(s):Case Management, Community Based Residential Services, Housing, Independent Living
Record last updated on:2/3/2012
The Ledges, Inc.
PO Box 38
Hopedale, MA
(508) 473-6520
Program Type(s):Aging, Case Management, Community Based Residential Services, Consulting/Training, Counseling, Day/Work Activity, Employment, Holistic Health, Housing, Independent Living, Integrated Community Program, Respite, Social/Leisure, Transitional/Supported Employment, Travel, Vocational
Record last updated on:3/30/2012
Transportation Program
John F. Kennedy Family Services
10 City Square
Ste 4
Charlestown, MA
(617) 241-8866
Program Type(s):Transportation
Record last updated on:3/6/2009
Upper Cape Access Center
Habilitation Assistance Corporation
25 Barlows Landing Road
Pocasset, MA
(508) 564-5101
Program Type(s):Day/Work Activity, Home Health/Personal Care, Social/Leisure, Transportation
Record last updated on:10/24/2011
Visiting Angels, Living Assistance Services
34 Robbvins Road
Springfield, MA
413-733-6900
Program Type(s):Home Health/Personal Care, Respite
Record last updated on:6/15/2010
VNA Care Network
120 Thomas Street
Worcester, MA
(508) 751-6860
Program Type(s):Home Health/Personal Care, Respite, Support Groups-Networks
Record last updated on:7/15/2011
VNA of Cape Cod, Inc.
255 Independence Drive
Hyannis, MA
(800) 631-3900
Program Type(s):Home Health/Personal Care
Record last updated on:8/10/2010
Vocational Rehabilitation
Massachusetts Commission for the Blind
48 Boylston Street
Boston, MA
(617) 727-5550
Program Type(s):Vocational
Record last updated on:12/13/2007
Welch Home Health, Inc.
52 Accord Park Drive
Norwell, MA
(781) 878-5020
Program Type(s):Home Health/Personal Care, Respite
Record last updated on:11/8/2011
WestMass Elder Care State Homecare
WestMass Elder Care
4 Valley Mill RD
Holyoke, MA
(800) 875-0287 - TTY
Program Type(s):Adult Family Care/Adult Foster Care, Aging, Case Management, Information/Referral, Options Counseling, Respite
Record last updated on:7/16/2012
Dave Mainwaring's Knowledge Network. Includes a more inclusive newsbasket: Mainzone Knowledge Network http://mainzoneknowledgenetwork.blogspot.com/
A newsbasket is on-line Internet publication containing comprehensive aggregated collections of information.
Coordinating Care on the Rise | Federal Telemedicine News
Coordinating Care on the Rise
Apr.9,2014
Telehealth is enabling improved patient care transitions, care coordination, and chronic disease management to take place in many communities. This can take place when a patient leaves the hospital to go home or to a skilled nursing facility and sometimes even back to the hospital. Poorly managed transitions can affect the patient’s health and at the same time increase costs that can result in billions of dollars in wasteful spending.
--
Vickie O. Morgan, RN, Clinical Director of Operations for the Home Care Division within the Riverside Health System at www.riversideonline.com
works mainly with older adult patients unable to access regular medical
care. Physicians and nurse practitioners trained in primary care are
working together to develop and design a plan for the care. They are
determining if telemonitoring can be used effectively so that a smooth
transition from the hospital to the home can be achieved.
“Technology used such as a watch device or a tablet can acquire
health data by the minute”, notes Loretta Schlachta-Fairchild, PhD, RN,
retired U.S Army and now President and CEO of iTelehealth Inc. at www.itelehealthinc.com
Apr.9,2014
Telehealth is enabling improved patient care transitions, care coordination, and chronic disease management to take place in many communities. This can take place when a patient leaves the hospital to go home or to a skilled nursing facility and sometimes even back to the hospital. Poorly managed transitions can affect the patient’s health and at the same time increase costs that can result in billions of dollars in wasteful spending.
--
Vickie O. Morgan, RN, Clinical Director of Operations for the Home Care Division within the Riverside Health System at www.riversideonline.com
works mainly with older adult patients unable to access regular medical
care. Physicians and nurse practitioners trained in primary care are
working together to develop and design a plan for the care. They are
determining if telemonitoring can be used effectively so that a smooth
transition from the hospital to the home can be achieved.
“Technology used such as a watch device or a tablet can acquire
health data by the minute”, notes Loretta Schlachta-Fairchild, PhD, RN,
retired U.S Army and now President and CEO of iTelehealth Inc. at www.itelehealthinc.com
To Flush or Not to Flush: How Do You Dispose of Expired Drugs
Tips for Safe Drug Disposal By Lynda Shrager
For the medications you are going to toss, follow these guidelines:
First, organize your medicines, and gather all of the expired drugs (prescriptions have dates on the labels; over-the-counter bottles and boxes are stamped with expiration dates).
Remove identifying information from the prescription label to help maintain your privacy and protect your personal health information. You don’t need the world to know you have acid reflux or are depressed, psychotic, or on birth control
If available, follow specific disposal guidelines noted on the bottle or patient information sheet.
Don’t flush prescription drugs unless the bottle or info sheet says to.
Crush pills or capsules or dissolve them in water.
Before throwing drugs in the trash, take them out of their containers and mix them with an “undesirable substance” such as coffee grounds or kitty litter. To avoid leakage or breakage out of the main garbage bag, put the mixture in a sealed plastic bag before placing it in the trash. The sealed bags will be less appealing to curious children or pets or anyone else who might go through your trash.
---
Lynda combines her expertise as an occupational therapist, master’s level social worker, professional organizer and aging in place specialist to pursue her passion of providing therapeutic care in the patient’s home environment and in educating their caregivers. To that end she is eagerly launching a new initiative called “At Home for Life” to facilitate a senior’s desire to remain in their own home as they face the crossroads of diminished physical and cognitive abilities. Lynda will provide residential assessments and make recommendations to enable people to safely access and navigate their own homes, thereby allowing them to age in place.
Published Apr 1, 2014 everydayhealth.com
First, organize your medicines, and gather all of the expired drugs (prescriptions have dates on the labels; over-the-counter bottles and boxes are stamped with expiration dates).
Remove identifying information from the prescription label to help maintain your privacy and protect your personal health information. You don’t need the world to know you have acid reflux or are depressed, psychotic, or on birth control
If available, follow specific disposal guidelines noted on the bottle or patient information sheet.
Don’t flush prescription drugs unless the bottle or info sheet says to.
Crush pills or capsules or dissolve them in water.
Before throwing drugs in the trash, take them out of their containers and mix them with an “undesirable substance” such as coffee grounds or kitty litter. To avoid leakage or breakage out of the main garbage bag, put the mixture in a sealed plastic bag before placing it in the trash. The sealed bags will be less appealing to curious children or pets or anyone else who might go through your trash.
---
Lynda combines her expertise as an occupational therapist, master’s level social worker, professional organizer and aging in place specialist to pursue her passion of providing therapeutic care in the patient’s home environment and in educating their caregivers. To that end she is eagerly launching a new initiative called “At Home for Life” to facilitate a senior’s desire to remain in their own home as they face the crossroads of diminished physical and cognitive abilities. Lynda will provide residential assessments and make recommendations to enable people to safely access and navigate their own homes, thereby allowing them to age in place.
In Home Care Program Allows AD Dementia Patients to Stay Home Longer | Alzheimer's Reading Room
In Home Care Program Allows AD Dementia Patients to Stay Home Longer | Alzheimer's Reading Room: Dementia and the Eight Types of Dementia
Learning How to Communicate with Someone Suffering From Alzheimer's Disease
Ten Tips for Communicating with an Alzheimer’s Patient
Alzheimer's, Urinary Incontinence, Urinary Tract Infections
Alzheimer's Caregiving Dealing with Behavior
Rewiring My Brain and Stepping into Alzheimer's World
Original content Bob DeMarco, the Alzheimer's Reading Room
Learning How to Communicate with Someone Suffering From Alzheimer's Disease
Ten Tips for Communicating with an Alzheimer’s Patient
Alzheimer's, Urinary Incontinence, Urinary Tract Infections
Alzheimer's Caregiving Dealing with Behavior
Rewiring My Brain and Stepping into Alzheimer's World
Original content Bob DeMarco, the Alzheimer's Reading Room
The 3 P’s of Reducing Elopement Risk: Prevention -
The 3 P’s of Reducing Elopement Risk: Prevention -: The 3 P’s of Reducing Elopement Risk:
http://www.seniorlivingsmart.com/
Wandering and elopement are common behaviors seen in Alzheimer’s and
other types of dementia. Due to the nature of the disease process, often
judgment and reasoning are impaired, making it critical that the
environment meet the needs of the resident by providing a safe and
secure setting that allows for the residents independent mobility.
http://www.seniorlivingsmart.com/
Wandering and elopement are common behaviors seen in Alzheimer’s and
other types of dementia. Due to the nature of the disease process, often
judgment and reasoning are impaired, making it critical that the
environment meet the needs of the resident by providing a safe and
secure setting that allows for the residents independent mobility.
Did You Know?
- Nationwide, researchers estimate that 34,000 Alzheimer’s patients wander each year.
- Thirty percent made it more than two miles before they were found, with 15 percent wandering more than 20 miles.
- In 80% of cases, the resident was a known wanderer with prior elopements.
HHS releases security risk assessment tool to help providers with HIPAA compliance
security risk assessment tool to help providers with HIPAA compliance:
A new security risk assessment (SRA) tool to help guide health care
providers in small to medium sized offices conduct risk assessments of
their organizations is now available from HHS.
The SRA tool is the result of a collaborative effort by the HHS Office of the National
Coordinator for Health Information Technology (ONC) and Office for Civil
Rights (OCR). The tool is designed to help practices conduct and
document a risk assessment in a thorough, organized fashion at their own
pace by allowing them to assess the information security risks in their
organizations under the Health Insurance Portability and Accountability
Act (HIPAA) Security Rule.
The application, available for downloading
at www.HealthIT.gov/security-risk-assessment also produces a report that can be provided to auditors.
HIPAA requires organizations that handle protected health information to
regularly review the administrative, physical and technical safeguards
they have in place to protect the security of the information. By
conducting these risk assessments, health care providers can uncover
potential weaknesses in their security policies, processes and systems.
Risk assessments also help providers address vulnerabilities,
potentially preventing health data breaches or other adverse security
events. A vigorous risk assessment process supports improved security of
patient health data.
Conducting a security risk assessment is a
key requirement of the HIPAA Security Rule and a core requirement for
providers seeking payment through the Medicare and Medicaid EHR
Incentive Program, commonly known as the Meaningful Use Program.
“Protecting patients’ protected health information is important to all health care
providers and the new tool we are releasing today will help them assess
the security of their organizations,” said Karen DeSalvo, M.D., national
coordinator for health information technology. “The SRA tool and its
additional resources have been designed to help health care providers
conduct a risk assessment to support better security for patient health
data.”
“We are pleased to have collaborated with the ONC on this
project,” said Susan McAndrew, deputy director of OCR’s Division of
Health Information Privacy. “We believe this tool will greatly assist
providers in performing a risk assessment to meet their obligations
under the HIPAA Security Rule.”
The SRA tool’s website contains a User Guide and Tutorial video to help providers begin using
the tool. Videos on risk analysis and contingency planning are available
at the website to provide further context.
The tool is available for both Windows operating systems and iOS iPads. Download the Windows version at http://www.HealthIT.gov/security-risk-assessment. The iOS iPad version is available from the Apple App Store (search under “HHS SRA tool”).
HHS releases security risk assessment tool to help providers with HIPAA compliance:
A new security risk assessment (SRA) tool to help guide health care
providers in small to medium sized offices conduct risk assessments of
their organizations is now available from HHS.
The SRA tool is the result of a collaborative effort by the HHS Office of the National
Coordinator for Health Information Technology (ONC) and Office for Civil
Rights (OCR). The tool is designed to help practices conduct and
document a risk assessment in a thorough, organized fashion at their own
pace by allowing them to assess the information security risks in their
organizations under the Health Insurance Portability and Accountability
Act (HIPAA) Security Rule.
The application, available for downloading
at www.HealthIT.gov/security-risk-assessment also produces a report that can be provided to auditors.
HIPAA requires organizations that handle protected health information to
regularly review the administrative, physical and technical safeguards
they have in place to protect the security of the information. By
conducting these risk assessments, health care providers can uncover
potential weaknesses in their security policies, processes and systems.
Risk assessments also help providers address vulnerabilities,
potentially preventing health data breaches or other adverse security
events. A vigorous risk assessment process supports improved security of
patient health data.
Conducting a security risk assessment is a
key requirement of the HIPAA Security Rule and a core requirement for
providers seeking payment through the Medicare and Medicaid EHR
Incentive Program, commonly known as the Meaningful Use Program.
“Protecting patients’ protected health information is important to all health care
providers and the new tool we are releasing today will help them assess
the security of their organizations,” said Karen DeSalvo, M.D., national
coordinator for health information technology. “The SRA tool and its
additional resources have been designed to help health care providers
conduct a risk assessment to support better security for patient health
data.”
“We are pleased to have collaborated with the ONC on this
project,” said Susan McAndrew, deputy director of OCR’s Division of
Health Information Privacy. “We believe this tool will greatly assist
providers in performing a risk assessment to meet their obligations
under the HIPAA Security Rule.”
The SRA tool’s website contains a User Guide and Tutorial video to help providers begin using
the tool. Videos on risk analysis and contingency planning are available
at the website to provide further context.
The tool is available for both Windows operating systems and iOS iPads. Download the Windows version at http://www.HealthIT.gov/security-risk-assessment. The iOS iPad version is available from the Apple App Store (search under “HHS SRA tool”).
HHS releases security risk assessment tool to help providers with HIPAA compliance:
If You Don't Listen to Others, Don't Read This | LinkedIn
{adapted on a post on Linkedin by Bruce Kasanoff offering advice to entrepreneurs}
Do not formulate your answer while the other person is talking.
People who don't listen decide how they are going to respond before you even stop talking. ........
Don't be afraid to pause for five or ten seconds to consider the question. Doing so demonstrates that you listened carefully and that you are giving them the courtesy of a thoughtful reply.
If you actually give a thoughtful reply, no one will remember that it took you nine seconds to start talking.
Repeat each question before you answer it.
Never make the mistake of taking five minutes of time answering a question s/he did not ask. First, paraphrase the question by saying,
"If I understand you correctly, you want to know (how we are going to ...........) Is that right?"
If necessary,
allow the other person to clarify their question. Only start your answer
when you are 100% certain you understand the question.
It may seem like a waste of time to do this, but you will be demonstrating your ability to obtain and understand feedback.
Do not formulate your answer while the other person is talking.
People who don't listen decide how they are going to respond before you even stop talking. ........
Don't be afraid to pause for five or ten seconds to consider the question. Doing so demonstrates that you listened carefully and that you are giving them the courtesy of a thoughtful reply.
If you actually give a thoughtful reply, no one will remember that it took you nine seconds to start talking.
Repeat each question before you answer it.
Never make the mistake of taking five minutes of time answering a question s/he did not ask. First, paraphrase the question by saying,
"If I understand you correctly, you want to know (how we are going to ...........) Is that right?"
If necessary,
allow the other person to clarify their question. Only start your answer
when you are 100% certain you understand the question.
It may seem like a waste of time to do this, but you will be demonstrating your ability to obtain and understand feedback.
Searching Dr. Google: How to Talk to Your Doc About Online Health Info
Searching Dr. Google: How to Talk to Your Doc About Online Health Info:
{Q}
Many current-generation patients prefer to collaborate with their doctors.
The minute we have an ache or a pain or are given a new diagnosis, many of us turn to Dr. Google. Unfortunately the Internet is littered with people and companies that may improperly interpret or manipulate research and lead us to useless or harmful remedies. I am a huge proponent of arming yourself with as much knowledge as possible, which a huge part of the caregiver role.{EQ}
{Q}
You might try to send this new information to the doctor in advance
of your next appointment. Since no one can be expected to be current on
every last piece of research, this approach should allow the doctor
time to discern whether the information is relevant to your particular
case.
Here are tips for engaging your doctor:
disease in question and run by nonprofits, such as those of the
Arthritis Foundation or the American Heart Association, tend to be
accurate and informative; I recommend you start with those.{EQ}
{Q}
Many current-generation patients prefer to collaborate with their doctors.
The minute we have an ache or a pain or are given a new diagnosis, many of us turn to Dr. Google. Unfortunately the Internet is littered with people and companies that may improperly interpret or manipulate research and lead us to useless or harmful remedies. I am a huge proponent of arming yourself with as much knowledge as possible, which a huge part of the caregiver role.{EQ}
{Q}
You might try to send this new information to the doctor in advance
of your next appointment. Since no one can be expected to be current on
every last piece of research, this approach should allow the doctor
time to discern whether the information is relevant to your particular
case.
Here are tips for engaging your doctor:
- Rather than challenging him, explain that you found something
interesting online and wondered what he thinks about it. Your tone
should impart respect for his expertise - If you can’t get the information to your doctor ahead of time, bring it with you and make a follow-up appointment to discuss it.
disease in question and run by nonprofits, such as those of the
Arthritis Foundation or the American Heart Association, tend to be
accurate and informative; I recommend you start with those.{EQ}
Care Consultation | Alzheimer's Association, Massachusetts/New Hampshire Chapter
Care Consultation | Alzheimer's Association:
Care Consultation in person, by phone, or e-mail
Care Consultation is an in-depth, personalized service for individuals and families who are facing many decisions and challenges associated with Alzheimer’s disease and related disorders. The goal is for each family to develop a better understanding of the disease, make a plan to secure needed care, and develop strategies for the best possible symptom management and communication. Consultations are provided in person and by phone. Consultants are also available to answer questions by email.
Care Consultation may be the lifeline that can make a difference.
Care Consultation in person, by phone, or e-mail
Care Consultation is an in-depth, personalized service for individuals and families who are facing many decisions and challenges associated with Alzheimer’s disease and related disorders. The goal is for each family to develop a better understanding of the disease, make a plan to secure needed care, and develop strategies for the best possible symptom management and communication. Consultations are provided in person and by phone. Consultants are also available to answer questions by email.
Care Consultation may be the lifeline that can make a difference.
When Alzheimer’s Hits Home: Six Ways to Help Kids and Teens By Carrie Steckl (a.k.a. Dr. Chill)
{Q}We often talk about the impact of Alzheimer’s on the person with the
disease, on the caregiver, and on “family members.” But couched within
that language is the assumption that we’re only talking about adults.
What about the kids and teens who have a parent, grandparent, or other relative with Alzheimer’s disease? They are likely scared, confused, and perhaps angry or sad about the situation. And don’t forget the kids and teens who have a friend who is dealing with this challenge, which may bring up feelings of helplessness about how to be supportive or what to say{EQ}
{Q}If you are a parent with a child or teenager who is struggling to understand or cope with Alzheimer’s, you may have wondered if there are any good resources out there that you can trust. Fortunately, there are.
Here are six ways to help kids and teens learn more about Alzheimer’s and develop coping strategies. (Note: I was not asked to write about any of these resources, and I am not receiving any compensation for mentioning any of them.) {EQ}
Want to receive notices of new "Ask Dr. Chill" posts? Just type your email address in the box and click the "Create Subscription" button. The list is completely spam free, and you can opt out at any time.
What about the kids and teens who have a parent, grandparent, or other relative with Alzheimer’s disease? They are likely scared, confused, and perhaps angry or sad about the situation. And don’t forget the kids and teens who have a friend who is dealing with this challenge, which may bring up feelings of helplessness about how to be supportive or what to say{EQ}
{Q}If you are a parent with a child or teenager who is struggling to understand or cope with Alzheimer’s, you may have wondered if there are any good resources out there that you can trust. Fortunately, there are.
Here are six ways to help kids and teens learn more about Alzheimer’s and develop coping strategies. (Note: I was not asked to write about any of these resources, and I am not receiving any compensation for mentioning any of them.) {EQ}
Want to receive notices of new "Ask Dr. Chill" posts? Just type your email address in the box and click the "Create Subscription" button. The list is completely spam free, and you can opt out at any time.
Dementia Behavior Can Seem Like Manipulation - AgingCare.com
Dementia Behavior Can Seem Like Manipulation - AgingCare.com:
"Sometimes caregivers assume that (their loved ones) are being manipulative because they just can't believe their behavior," she explains. But in reality, people with dementia aren't able to think through the process of manipulation.
"Sometimes caregivers assume that (their loved ones) are being manipulative because they just can't believe their behavior," she explains. But in reality, people with dementia aren't able to think through the process of manipulation.
Alzheimer's {A CareGiver's compilation} Goods and Services Blog
Alzheimer's {A CareGiver's compilation} Goods and Services | Things To Do Together, Safety Devices & related Equipment, On-line Discussions – Forums and support sites, caregivers' Organizations, Associations | Government: Local, State, Federal, International; Medical Centers, Hospitals, Schools and University's
Aging in Place, Home Modifications, Retrofitting: Can Be Foreign to Many | Endless Legacy
Aging in Place, Home Modifications, Retrofitting: Can Be Foreign to Many | Endless Legacy: Aging in Place, Home Modifications, Retrofitting: Can Be Foreign to Many
By Rhonda Caudell on March 6, 2014 in Caregiving, General Information
Aging in Place is mostly referred to as when someone desires to stay in their existing home as they age, along with a desire to remain there until the end of their life. To determine if this is possible allowing for safety and continued function to the highest level is the challenge.
By Rhonda Caudell on March 6, 2014 in Caregiving, General Information
Aging in Place is mostly referred to as when someone desires to stay in their existing home as they age, along with a desire to remain there until the end of their life. To determine if this is possible allowing for safety and continued function to the highest level is the challenge.
Individual's HEALTH ASSESSMENT for HEALTH CARE PROVIDER
Individual's HEALTH ASSESSMENT for
HEALTH CARE PROVIDER
TO BE COMPLETED BY HEALTH CARE PROVIDER
Individual's Name and DOB:
Known Allergies: Height: Weight:
Medical history and diagnoses:
Physical or sensory limitations:
Cognitive or behavioral status:
Nursing/treatment/therapy service
requirements:
Special precautions:
A. To what extent does the individual
need supervision or
assistance with the following?
S=Needs Supervision I= Independent A=
Needs Assistance
Indicate the extent to which the
individuals is able to
perform each of the activities of daily
living.
Ambulation
Bathing
Dressing
Eating
Self Care (grooming)
Toileting
Transferring
Special Diet Instructions
Regular Calorie Controlled No Added
Salt Low Fat/Low
Cholesterol
Does the individual have any of the
following
conditions/requirements? Please include
an explanation
- 1. A communicable disease, which could be transmitted to
- others
- 2. Bedridden?
- 3. Any stage 2, 3, or 4 pressure sores?
- Pose a danger to self or others
- Require 24-hour nursing or psychiatric care?'
- In your opinion,
- can this individual's needs be met by this caregiver
ABILITY TO PERFORM SELF-CARE TASKS:
Preparing Meals
Shopping
Making and Receiving Phone Calls
Handling Personal Affairs
Handling Financial Affairs
GENERAL OVERSIGHT:
Observing Well-being
Observing Whereabouts
Reminders for Important Tasks
ADDITIONAL COMMENTS/OBSERVATIONS (Use
additional page if
necessary):
list all current medications prescribed
below
MEDICATION DOSAGE DIRECTIONS FOR
USE ROUTE
1.
2.
Does the individual need help with
taking his or her
medications
=
PLEASE RETURN TO: CARE PROVIDER NAME:
CARE PROVIDER ADDRESS:
TELEPHONE NUMBER: CONTACT PERSON:
Advice from Caregivers when asked “What have you learned from your journey that you think every caregiver should know?”
ALZ Connected - Alzheimer's Association: This is a compilation of the advice from previous threads. dj okay has eliminated the replies that did not relate directly to the subject.
Advice from Caregivers when asked “What have you learned from your journey that you think every caregiver should know?” DJ attempted to categorize their responses. These are their words. Multiple statements in parentheses are further comments from subsequent responders.
Advice from Caregivers when asked “What have you learned from your journey that you think every caregiver should know?” DJ attempted to categorize their responses. These are their words. Multiple statements in parentheses are further comments from subsequent responders.
Book list, this information and all links were active 8/20/2013
"A
Common Sense Guide to Alzheimer's Care Kisses for Elizabeth is
written for both family and professional caregivers of people with
Alzheimer's disease and other dementia’s. It is a practical
resource for anyone experiencing difficulty with significant
behavioral issues but is also helpful to caregivers who simply want
to provide the best possible care.
The
author has developed 15 common sense guidelines which address a wide
variety of concerns by helping caregivers to solve problems or even
prevent them. The guidelines also address negative behaviors such as
wandering, combativeness, paranoia and sundowning. The book explains
what dementia is, how it affects people who suffer from it and why
these behaviors occur.
Stephanie
D Zeman MSN RN has included over 40 true heartwarming stories about
her patients with dementia and ways in which the guidelines were
applied to help resolve their problems and enhance the individuals
quality of life
Since
one of the best ways to learn is by example, Stephanie D Zeman MSN RN
has included over 40 true heartwarming stories about her patients
with dementia and ways in which the guidelines were applied to help
resolve their problems and enhance the individuals quality of life."
FYI ,,,,,,,,,,,,,,,,,,,,,,
Stephanie
is one of my on-line friends.
We are both active on
http://www.alzconnected.org/discussion.aspx
Stephanie
on abuse: READ TODAY
http://www.alzconnected.org/discussion.aspx?tid=2147495522&g=posts&t=2147495517
Another
excellent book I quote from often:
Jolene
Brackey "Creating Moments of Joy" Perdue University Press.
Stephanie
offerred this list, his information and all links are active
8/20/2013
This
is a list of links about information you will need. Most helpful for
you right now will be "Understanding the dementia experience"
which will give you an idea of what your LO is going through; and
"Communication skills" Which will help you to
communicate in ways which will avoid or decrease your LO
negative behaviors.
Understandingthe dementia experience:
https://www.smashwords.com/books/view/210580
Anosognosiaexplains why dementia patients are unaware of their problem
http://alzonline.phhp.ufl.edu/en/reading/Anosognosia.pdf
Communicationtechniques for dementia caregivers:
http://www.alzconnected.org/discussion.aspx?g=posts&t=2147497924
Guideto diagnosing and treating dementia: What your doctor should do:http://dementia.americangeriatrics.org/
Bathingand Showering
http://www.alzconnected.org/discussion.aspx?g=posts&t=2147491802
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=138
http://www.disabled-world.com/health/aging/uti.php
Pickingat skin/scabs: http://www.alzcompend.info/?p=233
http://prc.coh.org/PainNOA/Abbey_Tool.pdf
http://www.alzconnected.org/discussion.aspx?g=posts&t=2147489263
Caregiverkitchen http://caregiver.com/kitchen/index.htm
What causes olfactory hallucinations (phantosmia)? smelling non existent oders
Mayo Clinic
Answers from Jerry W. Swanson, M.D.The odors detected in phantosmia vary from person to person and may be foul or pleasant. They can occur in one or both nostrils and usually can't be masked by food.
Phantosmia most often occurs as a result of a head injury or upper respiratory infection. It can also be caused by temporal lobe seizures, sinusitis, brain tumors, migraine, Parkinson's disease and stroke.
Because phantosmia can in rare cases be an indication of a serious underlying disorder, consult your doctor if you experience such symptoms.
Search Senior Housing Forum - Senior Living Industry Information & Commentary
Why We Voluntary Blue Ribbon Industry Standards: Sunrise Assisted Living Attacked ProPublica Style - Senior Living Industry Information & Commentary: February 26, 2014 by Steve Moran
Steve's recommended Gold Standard
He is convinced that ALFA, LeadingAge and AHCA need to convene a blue
ribbon panel of large, medium and small operators to create some
guidelines (maybe even a certification process like The Eden Alternative
has) for assisted living. It should include things like:
will be more lawsuits, more regulations and the whole industry will be
damaged.
Steve's recommended Gold Standard
He is convinced that ALFA, LeadingAge and AHCA need to convene a blue
ribbon panel of large, medium and small operators to create some
guidelines (maybe even a certification process like The Eden Alternative
has) for assisted living. It should include things like:
- Initial training
- On-going training
- Staffing ratios
- Medication guidelines
- Satisfaction surveys
- Emergency call response times
will be more lawsuits, more regulations and the whole industry will be
damaged.
Seniors Helping Seniors - in-home care services.
Seniors Helping Seniors - Home
Seniors Helping Seniors in-home care services.We make life a little easier for you or someone you love by providing services in the home — companionship, light housekeeping, cooking, gardening, transportation and more.
All of our helpers are seniors themselves. They have a warmth and understanding that comes from experience and wisdom gained over the years. They are all loving, caring compassionate people who bring joy and companionship to everyone with whom they work. That’s why our seniors often become life-long friends with those who receive our services.
We can help out with as much or as little support as you need. Use this web site to find out about our services, delivered to you in your home from seniors who understand you, anytime you need them — day or night.
http://www.seniorshelpingseniors.com/metrowest/
We offer help in many non-medical capacities, including:
Cooking
Light housekeeping
Companionship
Personal grooming and dressing
Shopping
Doctor visits
Transportation
Yard work
Mobility assistance
House maintenance/repairs
Overnight stays (24-hour care)
Long-distance check-ins
Respite care
metrowest/ call us at 508-485-1765 or cell 508-808-1090 or e-mail us at kindnessworksllc@gmail.com to schedule a FREE consultation at your home.
On Wed, Feb 26, 2014 at 11:43 AM, Doug Peck, CSA <kindnessworksllc@gmail.com> wrote:
people are W2 employees, fully insured and CORI background checked.
I have 30 years prior experience in human resources and recruiting
I do all the interviews and references myself. I also do all the client
assessments and scheduling so I can carefully match caregivers with
clients.
We do not do drug screening.
All of my employees are local seniors, many have lived in the area their whole lives and many of their references are ministers, pastors, etc. They are very reliable and do
what they do because they really do want to work with other seniors.
My basic rate is $25 per hour with a 2 hour per day minimum.
There are no minimum days and I have clients that I work with only once a
week.
I do charge $.50 for mileage should they drive and pass that
completely through to the driver. I have a copy of the drivers
insurance and their driving record.
Personally I am a Certified Senior Adviser, a board member of
the Marlborough Chamber of Commerce
Please feel free to give me a call if you would like additional information or you would like to meet at some point.
There are many resources for older adults and those who care for them.
Doug Peck, CSA
Seniors Helping Seniors in-home care services.We make life a little easier for you or someone you love by providing services in the home — companionship, light housekeeping, cooking, gardening, transportation and more.
All of our helpers are seniors themselves. They have a warmth and understanding that comes from experience and wisdom gained over the years. They are all loving, caring compassionate people who bring joy and companionship to everyone with whom they work. That’s why our seniors often become life-long friends with those who receive our services.
We can help out with as much or as little support as you need. Use this web site to find out about our services, delivered to you in your home from seniors who understand you, anytime you need them — day or night.
http://www.seniorshelpingseniors.com/metrowest/
We offer help in many non-medical capacities, including:
Cooking
Light housekeeping
Companionship
Personal grooming and dressing
Shopping
Doctor visits
Transportation
Yard work
Mobility assistance
House maintenance/repairs
Overnight stays (24-hour care)
Long-distance check-ins
Respite care
metrowest/ call us at 508-485-1765 or cell 508-808-1090 or e-mail us at kindnessworksllc@gmail.com to schedule a FREE consultation at your home.
On Wed, Feb 26, 2014 at 11:43 AM, Doug Peck, CSA <kindnessworksllc@gmail.com> wrote:
Thanks for contacting us.
I have attached some information that I think you will
find helpful. We do have a new website that is coming online in the
next few weeks that should be easier to navigate.
To answer your questions, I am licensed by the state so all myI have attached some information that I think you will
find helpful. We do have a new website that is coming online in the
next few weeks that should be easier to navigate.
people are W2 employees, fully insured and CORI background checked.
I have 30 years prior experience in human resources and recruiting
I do all the interviews and references myself. I also do all the client
assessments and scheduling so I can carefully match caregivers with
clients.
All of my employees are local seniors, many have lived in the area their whole lives and many of their references are ministers, pastors, etc. They are very reliable and do
what they do because they really do want to work with other seniors.
There are no minimum days and I have clients that I work with only once a
week.
I do charge $.50 for mileage should they drive and pass that
completely through to the driver. I have a copy of the drivers
insurance and their driving record.
the Marlborough Chamber of Commerce
There are many resources for older adults and those who care for them.
Ask Me 3 | National Patient Safety Foundation
Ask Me 3 | National Patient Safety Foundation:
Ask Me 3 is a patient education program designed to improve communication between patients and health care providers, encourage patients to become active members of their health care team, and promote improved health outcomes. The program encourages patients to ask their health care providers three questions:
What is my main problem?
What do I need to do?
Why is it important for me to do this?
Ask Me 3 Resources
AskMe3_logoHealth Literacy Reference Resources
The materials shown on this page http://tinyurl.com/kw82a8s are available to download free of charge in PDF format.
Note: Organizations that are members of the Stand Up
for Patient Safety Program can receive complimentary, production-ready
Ask Me 3 materials and have permission to cobrand them with their
organization’s logo. For more information, contact standup@npsf.org or visit the Stand Up Member section of the website to learn more [login required].
Ask Me 3 is a registered trademark licensed to the National Patient Safety Foundation.
Ask Me 3 is a patient education program designed to improve communication between patients and health care providers, encourage patients to become active members of their health care team, and promote improved health outcomes. The program encourages patients to ask their health care providers three questions:
What is my main problem?
What do I need to do?
Why is it important for me to do this?
Ask Me 3 Resources
AskMe3_logoHealth Literacy Reference Resources
The materials shown on this page http://tinyurl.com/kw82a8s are available to download free of charge in PDF format.
Note: Organizations that are members of the Stand Up
for Patient Safety Program can receive complimentary, production-ready
Ask Me 3 materials and have permission to cobrand them with their
organization’s logo. For more information, contact standup@npsf.org or visit the Stand Up Member section of the website to learn more [login required].
Ask Me 3 is a registered trademark licensed to the National Patient Safety Foundation.
When Medicare Will Pay for Skilled Nursing or Physical Therapy - Howard Gleckman
When Medicare Will Pay for Skilled Nursing or Physical Therapy - Howard Gleckman:
http://howardgleckman.com/author/hgleckman/
Two weeks ago, the government updated the Medicare manual—the
official guidelines for providers. And it has begun an extensive
educational campaign to help them understand the rules. Yet, it is
important that consumers know about this new interpretation as well.
What does this mean? Imagine you have a severe stroke. Before Jimmo,
most people thought Medicare would pay for physical therapy only as
long as that PT was helping you get better. For instance, Medicare would
pay if therapy helped increase the number of steps you could walk
without assistance. Now, Medicare will pay for PT even if it only helps
you maintain your current ability to walk
other restrictions still apply. For instance, Medicare will only pay for skilled nursing care after a patient has been hospitalized for at least three days. And, at least for now, a patient who is in a hospital for observation but has not been formally admitted does not qualify. Medicare will pay for no more than 100 days of skilled care after a hospitalization. And Medicare will not pay for skilled care if needed services can be provided by the patient herself, her family, or by home health aides.
http://howardgleckman.com/author/hgleckman/
Two weeks ago, the government updated the Medicare manual—the
official guidelines for providers. And it has begun an extensive
educational campaign to help them understand the rules. Yet, it is
important that consumers know about this new interpretation as well.
What does this mean? Imagine you have a severe stroke. Before Jimmo,
most people thought Medicare would pay for physical therapy only as
long as that PT was helping you get better. For instance, Medicare would
pay if therapy helped increase the number of steps you could walk
without assistance. Now, Medicare will pay for PT even if it only helps
you maintain your current ability to walk
other restrictions still apply. For instance, Medicare will only pay for skilled nursing care after a patient has been hospitalized for at least three days. And, at least for now, a patient who is in a hospital for observation but has not been formally admitted does not qualify. Medicare will pay for no more than 100 days of skilled care after a hospitalization. And Medicare will not pay for skilled care if needed services can be provided by the patient herself, her family, or by home health aides.
scribes have entered the scene in hundreds of clinics and emergency rooms - NYTimes.com
A Busy Doctor’s Right Hand, Ever Ready to Type - NYTimes.com: Without much fanfare or planning, scribes have entered the scene in hundreds of clinics and emergency rooms. Physicians who use them say they feel liberated from the constant note-taking that modern electronic health records systems demand.
A study
published jointly in October by the American Medical Association and
RAND Corporation found that electronic health records were a major
contributor to physician dissatisfaction, as doctors negotiate a cranky
truce between talking to and examining the patient, and the ceaseless
demands of the computer. And a recent article
in the journal Health Affairs concluded that two-thirds of a primary
care physician’s day was spent on clerical work that could be done by
someone else; among the recommended solutions was the hiring of scribes
A study
published jointly in October by the American Medical Association and
RAND Corporation found that electronic health records were a major
contributor to physician dissatisfaction, as doctors negotiate a cranky
truce between talking to and examining the patient, and the ceaseless
demands of the computer. And a recent article
in the journal Health Affairs concluded that two-thirds of a primary
care physician’s day was spent on clerical work that could be done by
someone else; among the recommended solutions was the hiring of scribes
Hallucinations vs. Delusions , & Confabulations
Hallucinations vs. Delusions in Alzheimer's from http://www.everydayhealth.com/alzheimers/alzheimers-hallucinations-and-delusions.aspx
It is important that Alzheimer's caregivers understand the difference between a hallucination and a delusion. Each of these symptoms can affect your loved one in different ways:
Delusions. Delusions are false beliefs caused by the deterioration of cognitive processes in the brain of the Alzheimer's patient, and are often influenced by misunderstandings or misinterpretations. Patients might think they are being followed, or might accuse a family member of stealing from them or plotting against them.
Hallucinations. These involve false perceptions, and are also caused by changes in the brain due to Alzheimer's. Patients can literally “sense” — see, hear, smell, taste, or feel — something that isn't there. They might see and talk with old friends who aren't there, or watch ships floating through the sky outside the window, or smell foods they enjoyed as a child.
Confabulations are a major annoyance — when listeners take everything at face value, no matter how false their statements. The danger is when banks, adult protective services, police, friends, family, and other listeners take everything our loved ones say at face value and react based on the statements. Know that confabulating is distinct from lying because there is no intent to deceive. The statements can be coherent, internally consistent, and reasonable.
Be aware there are similarities between confabulation and delusions; e.g., both involve unintentional false statements. Realize delusions are frequently observed in Alzheimer’s patients may include beliefs about theft, the patient’s house not being his home, a spouse, is an impostor, belief an intruder is in the house, abandonment, spousal infidelity, and paranoia. visit http://en.wikipedia.org/wiki/Confabulation
Confabulating is distinct from lying because first there is no intent to deceive, second the person being unaware that the information is blatantly false. Confabulating can be coherent, internally consistent, and reasonable...despite clearly contradicting evidence. Your challenge: is what they say true?
we all Confabulate [http://en.wikipedia.org/wiki/Confabulation]. We make..verbal statements and/or actions that inaccurately describe history, background and present situations... {Confabulating is distinct from lying because there is typically no intent to deceive...} being unaware that the information is false... blatantly false information can also be coherent, internally consistent, and relatively normal...despite evidence contradicting it...
IMHO we all Confabulate make..verbal statements and/or actions that inaccurately describe history, background and present situations... {is distinct from lying because there is typically no intent to deceive ...} the source is unaware that the information is false... Blatantly false information can also be coherent, internally consistent, and relatively normal...despite evidence contradicting it...
How do Alzheimer’s and dementia cue cards help communication? Video content included. « Caregiver Cards Caregiver Cards
How do Alzheimer’s and dementia cue cards help communication? Video content included. « Caregiver Cards Caregiver Cards: Caregiver Cards Communication Cues for Alzheimer's & Dementia Care
"Let's Continue the Communication"
"Let's Continue the Communication"
Advice from Caregivers when asked “What have you learned from your journey that you think every caregiver should know?”
Advice from Caregivers when asked “What have you learned from your journey that you think every caregiver should know?” I have attempted to categorize their responses. These are their words. Multiple statements in parentheses are further comments from subsequent responders.
http://www.alzconnected.org/discussion.aspx?g=posts&t=2147501102
DJ OK posted
Communication I learned early in her dementia that logic and reason were no longer my friends. She couldn't understand my reasoning and it only succeeded in frustrating both of us.
A caregiver must understand that their loved one cannot reason any longer. They cannot keep themselves safe, make rational decisions, and they cannot understand the word "no". You cannot argue with your loved one because it will only accomplish making your loved one angry and confused.
I learned the value of "loving lies". (“Learn to lie. It's good for their soul.”) (The best answer is the one that brings comfort and accomplishes the goals of keeping them as safe and well as possible. It doesn't have to be the truth.)
Be prepared to answer the same question a million times. In fifteen minutes. Develop strategies for dealing with this, because it WILL wear you down.
Learn to listen to what your loved one means, not what they say. Very often their halting or mixed-up or confabulated words are actually trying to communicate something that is important to them. Don't take it lightly. That said; don't take everything your loved one says personally. They don't really hate you. They don't really think you are trying to steal everything. They don't really wish they were dead.
Remember, they are doing the best they can.
Later on, I learned that my mother was still present at all times, although in a diminished way. Just when I thought that I had lost all of her personality and that she was just a shell of the mother I had known, her spirit would shine through in an instant to restore my faith and encourage me for the rest of my journey. (So important and I think most often overlooked. I think this is because caregivers often don't slow down often enough to notice.) (I'd like to second the fact that our loved ones are still present, even in stage 7. We can reach them ... and if we try and are patient, they can communicate with us.)
Philosophical First and foremost, non-professional caregivers need to understand that a person with AD has a terminal illness. They will never get better and will certainly get worse.
Second, they need to prepare for many, many years of caregiving whether in the home or in a facility. No one, not even any of mom's docs, expected her to live with AD as long as she has.
Take care of your loved one the way you would want to be taken care of and treated.
Realize that everyone's journey is different, and what is right for someone else may not be right for you. In other words, if placement is the option that will work best for everyone, there's no shame in that. If you have the time, energy, skills and desire to devote yourself to in-home caregiving, then do so. But don't judge yourself by what others have done.
When you have a bad day with your loved one, don't stew about it. Had a bad day or a bad visit? This too shall pass. Did you do your best today? That's all anyone can ask.
Promise only that you will always love them and do your best to keep them comfortable and safe. Your love will always be there but promising to keep them in their own home or to always care for them cannot always happen. This disease often needs professionals in controlled settings to keep your loved one safe and comfortable.
The disease often takes "happy" away and the caregiver needs to realize that this cannot be on their "to do" list.
Our loved ones do not regress to childhood. They simply have a greater tendency to pull up memories from an earlier time and to be unable tell that the memories are "old". They are still adults, with the memories of adults, and should be treated with the respect and consideration due to adults. They still do have recent memories. And the more an event carries strong emotions -- of joy, of fear, of sorrow -- the more likely our loved ones will retain the memory of it.
You will need to step into a parental role far sooner than you realize; intentions to "respect" your parents’ old role and decision making puts them at risk.
I feel I have learned to live in the moment...and not take one day for granted.
And, at the end of the day, when you are stressed out and exhausted, say a prayer for those Alzheimer patients in facilities that have nobody that visits or cares. It will make you grateful that you are who you are - one that cares.
Practical Take the time to find an AMAZING Certified Elder Law Attorney (CELA), and a primary care geriatrician. We must delegate and pay for professional expertise for the well-being of our ALZ loved ones. We are nearing the end of our journey with this disease, and the one thing I would add looking back, is don't be afraid to jump in and take charge of the situation early. It’s hard, and we want to be mindful of our loved ones feelings, but when it comes to financial matters, wills, POA's, etc.(and even living arrangements), you simply have to take charge. It may be rough in the moment, but you will save yourself so much worry and grief down the road.
Start gathering information on resources and help before you actually need it. Get a notebook; it can be a small steno notebook. Keep it with you at all times and right down names, phone numbers of EVERYONE you speak with, the agency or group they are with. Take it to all medical appointments and note date, doc's name, take notes of what s/he says. Doctors, dentist, specialists, ALL of it. Need a repair to an appliance in the home (whether loved one's home or yours if loved one lives with you) put all the info in the notebook. This book will become your chronological list of everything that happens, and you will find it highly valuable when you need to go back and call someone to ask them about . . . whatever. Monitor your loved one closely, watch for things they are having difficulty with and make modifications where you can, i.e. difficulty with eating or remembering to eat, dressing, hygiene, driving, handling finances, difficulty with walking, using the phone. Looking around their environment and making safety modifications for them.
By far, the most serious danger posed in the earlier stages of the Alzheimer's disease is when the individual may decide they want to go for a walk, go searching for "home," or maybe just walk outside to get the paper. In a restaurant they may go to a rest-room. When they turn around, the place they expect to see is gone and they find themselves standing helplessly confused what they see is totally unfamiliar to them. Get to know your local police. Take them a picture of your loved one, explain his/her dementia. Even if they have a Safe Return bracelet, if your local police are aware of the issue, they are better prepared.
When visiting your local police, ask if you can add your loved one's dementia to your 9-1-1 record, in case something happens to YOU.
Be persistent and proactive in dealing with medical professionals, care facilities, anyone and any place that is providing care to your loved one. If you are not satisfied with the care, say something and insist on getting answers and getting concerns resolved. Don't be afraid to ask questions, don't be afraid or hesitant to ask for something you want done for your loved one. Go with your loved ones to doctor appointments always.
If you have concerns regarding your loved ones, fax or email the health professional a written list of your concerns days before the appointment, this helps give the health professional a heads-up, saves you from having to bring up sensitive issues in front of your loved one.
Get your loved one started in Adult Daycare while they are still "with it" enough to appreciate it. If you wait too long, the sensory stimulation will overload them. (This was a big mistake I made.)
Be very careful about Board & Care facilities, aka Adult Foster Homes. They usually cannot provide the medical care your loved one will need, and they are not held to the same standards as nursing homes or SNFs.
Support your loved one with memory crutches in the early and mid-stages. Label things, write down phone numbers and leave in multiple places. Assist with meds. Recognize that in later phases, those crutches will be useless. Avoid insisting that your loved one recognize the crutch; realize that they haven't got a clue what the crutch is supposed to mean.
Leave out plenty of paper and pens in your loved one’s room. You never know what sweet notes you will find once they have died. You will find that they probably have tried to create their own crutches, and those self-made crutches will move you to tears when they are no longer around.
Financial Get a file cabinet / drawer ready, and buy a box of file folders. The amount of paperwork that comes with loved one (unless you are dealing with Early Onset, then I don't know about that) is astounding. Medicare, Social Security, Pension, bank statements, credit accounts, VA benefits statements, reports from the lab, DMV notices for license, motor vehicle tax, if loved one has own home all the things that go with a house, real estate taxes, home owners insurance, electric and phone bills, cable bill, the paper alone will overwhelm you!!
And as time goes on, for Caregivers to come in while you go out for a once every 3 months night out, for Rehab stays, for ER visits, ambulance rides, hospital stays. Be very, very, very careful and watch for Medicare fraud. Read all those statements you receive, as dull and boring as they may be!
Support Join a support group.
Find a Caregiver Support Group near you, and GO, every meeting. Remember to take care of yourselves as well in the process. Do not be ashamed or hesitant to ask for help. And again, gather as much help as you can get in caring for your loved one, whether it's family, friends, or hired.
Seek information and support during all stages of caregiving. Try your best to cultivate good relationships with family and hold them close. Do all you can to engage them in the care of your loved one. That said, be prepared to lose siblings and other "close" family members over this awful disease.
I've learned, and I think all caregivers should learn, that you shouldn't count on family for help, especially other siblings. Even if they say they will help, remember that they won't. Always rely on yourself to make the decisions because nobody else will do it.
Also, a lot of friends and family will become scarce. You will hardly ever see anybody for a visit and when they do visit, it will be very short. It's kind of a lonely process. Lean heavily on the Alzconnected.org forum for advice, counsel, and a shoulder to cry on. And yet, don't rely solely on this forum. Caregivers tend to become too isolated and we all need real humans for real hugs and real shoulders to cry on.
Medical Make a list of all the medications your loved one is taking, the dosages, when they take it and the prescription number and carry that list with you at all times. You never know when you need to call for an ambulance or meet your loved one at the ER, this list comes in handy and the emergency personnel always appreciate it.
Prepare a Go-Bag for the days you have to take your loved one to the ER. In addition to a book for you to read, make sure you have the following: Current list of meds, and fifteen million jillion copies of the AHCD, DPOA, and the (red or hot pink) POLST. No matter how many times you give these documents to a hospital, they will ignore them or lose them or forget to consult them.
Never assume that any new symptom is "just" due to the dementia. It could be due to a medicine (either an acute or a chronic side effect), drug interactions, an infection, dehydration, an injury, undiagnosed and/or under-treated pain, sensory deprivation, sensory overload, etc. When in doubt, talk to the doctor.
Hundreds of different factors can cause symptoms that mimic Alzheimer's. Most of them can be treated if caught soon enough. It is essential to have our loved ones thoroughly evaluated by a knowledgeable team of doctors. Don't assume it's Alzheimer's just because someone is older and/or close relatives were diagnosed with AD.
Keep a journal of symptoms, of treatments (prescription and OTC drugs, natural supplements, etc), and of anything that could affect symptoms, especially anything that can cause stress. Symptoms and behaviors are affected by all sorts of different factors, and the only way to tell whether, e.g., a new drug is helping or causing a side effect is by keeping daily track of what's going on in our loved ones' lives.
Many doctors are unfamiliar with the disorders that cause dementia, don't know how to diagnose them, don't know how to treat them ... and often don't like working with dementia patients, which is understandable because there is so little that can be done for them.
Caregivers need to keep searching until they find qualified doctors who want to work with and are capable of helping their loved ones.
Buy a Physician's Desk Reference and learn what the meds do that your doctor prescribes. Don't be shy about challenging them on meds that are too dangerous or ineffective.
Watch for UTIs. If you live a good distance from a hospital, buy the self-test strips (Target carries them). Any sudden change in behavior, test for a UTI.
Planning Even if you plan to keep your loved one at home for as long as possible, start researching nursing homes, Skilled Nursing Facilities, and assisted living facilities *now*. The wait list for the good ones can be two years long.
Make sure to make arrangements for some kind of outside help as soon as you can, such as respite care or something similar. You may think you can do it alone, but I'm here to say that nobody can do it all by themselves. You will need someone else reliable to step in for you and it certainly won't be family. If your loved one relies on Medicaid other state equivalents, meet with someone (e.g. Area Council on Aging) who can explain the ins and outs of the system thoroughly, especially your rights.
Many hospitals and nursing homes ignore patients' rights unless you are armed with knowledge. Anticipate the needs of your loved one and put a plan together to meet those needs.
Understand that no matter how well-prepared you are for this disease, you will hit the inevitable brick wall where all your preparedness means absolutely, positively nothing. What works today is guaranteed not to work tomorrow.
Plan, but try and put your energy into "Now." Things can change on a dime, and your journey can be anywhere from a few months to decades.
Education It is never too early to gather information on adult daycare centers, different types of care facilities, caregiving agencies, etc., advance directives, power of attorney, eldercare attorneys, VA benefits.
I second the idea of gathering as much information as you can as soon as you can!!! For many of us we may not be the primary caregiver from the beginning. In our case my FIL took care of MIL and really hid as much as he could from everyone so when he got sick and all of a sudden DH and I were thrown into caring for both we had to get a very crash course indeed!!! Also make sure your loved one has their Will in order including a living Will so you know their wishes. Also, we were not able to find out exactly my MIL's wishes for funeral, burial, etc. So we are doing the best we know how. If you can have a conversation about this while your loved one is still able it takes pressure off worrying if you are doing right by them.
Learn all you can about the specific form of dementia your loved one has. Each type requires a unique strategy, tweaked to unique progression.
Emotional Try not to feel guilty. When your loved one loses independence or abilities, it is not YOUR fault -- it is the disease's fault.
You're trying to do your best to help keep that person safe, and they may not always like it. But they are past the point of understanding/comprehending your true intentions. If your loved one relies on Medicaid etc., be prepared for denigrating statements directed at you the caregiver or your loved one about lack of preparedness, laziness, blah blah blah. Develop a thick skin and anticipate this lack of caring. Those people are not worth the time of day.
Be prepared for disappointments in your circle of friends, people who say they will help who never do. One negative/positive aspect of being a caregiver for someone with dementia: You learn who your true friends are (and it isn't always the people you'd expect).
Be careful not to antagonize your immediate family (spouse, children, grandchildren) over care of your loved one. While your loved one's needs are important, the needs of the not-terminal living trump their needs.
Prepare yourself for the long haul. This is not a short terminal disease, twelve months and funeral. It can be painfully, excruciatingly long. That said, if you are NOT prepared for this disease, you will lose your mind.
Grow a backbone. (This is intended for those who are prone to accept everything a professional says, whether it’s a doctor, nurse, or professional caregiver. Only you know your loved one intimately, and you have to be the best advocate for them possible. This requires finding a new strength within yourself.)
End-of-life Decisions
For a dementia patient, quality of life can be far more important than quantity of life. Our loved ones can go on palliative care whenever they, or we, feel it is time to focus on quality of life.
Self-Care
The Primary Caregiver should not devote so much of their own time and energy to the demented patient that the Caregiver wakes up one day to realize that they have no life of their own.
For a Caregiver to give up their life in order to offer care and loyalty to the demented patient is destroying two people at once. The patient will progress in dementia anyway, no matter. The Caregiver should reserve part of their private life for their own tasks and savors. [ And by the way, I am most guilty of the latter by offering so much of my being to my wife's Dementia that I gave my life away, only to realize my mistake in my 8th year of Caregiving, then taking two years to retrieve even part of the life I had destroyed.]
Try and pace yourself as best you can, it's a long journey and by pacing, I mean using as many resources as possible that you can find to help care for your loved one. Take good care of yourself. You're no good to your loved one if they outlive you.
-----------------------------------------------------------------------------
Trust your gut! If you’re asking yourself “Is it time…?” …to take away the car keys, …to get more help, …to move loved one to memory care, It probably IS time. We tend to put off making these important decisions too long. -------------------------------------------------------------------------------
In addition to all these great comments, here is a wonderful list from a very experienced nurse that went through the dementia journey with her mother and then again with her step-dad. I feel I need to include it in its entirety, as it contains so many relevant subjects.
1. Try to remember, if your Loved One is driving you to absolute distraction; imagine what it must be like to live inside their heads, FEELING all that agitation, upset and fury and believing all those horrible delusions (rigid false beliefs) as truth. It is a hellish existence for them and unconscionable to let it continue when there is help to be had. Getting a dementia expert early in the course of the disease is a necessity on several fronts.
2. Always have a, "Plan B;" that is, a well-researched and well thought out plan of what you will do IF something unforeseen abruptly happens. This can happen and does happen. So; if you have researched local assisted living facilities as well as local nursing homes and Care Agencies prior to need, then if the abrupt unforeseen event arises, physical or dementia, you will be prepared and not have to run hither and thither under tremendous pressure and time constraints. It will also help you to know the quality of such facilities and that will benefit your loved one.
3. The person with dementia is MORE than their dementia. They, just like us, have multiple body systems. They, just like us, will develop illnesses and conditions totally unconnected to their dementia. Always honor this and ensure that the loved one is screened for other conditions outside the dementia when they begin to exhibit symptoms. Do not ascribe, or permit doctors to ascribe all changes and symptoms to dementia alone.
4. When our loved ones have delusions and confabulate making up so many stories; it can be exhausting and a bit unnerving; BUT always err on the side of caution and check things out that they tell you, because there will be times when what they are saying is not a delusion, but actual truth. Respect this and do your due diligence and check things out. I learned this the hard way.
5. If your loved one is alert, and their friends (and even relatives) no longer call or send cards; buy a stack of "thinking of you" cards and mail a couple now and then, and sign someone else's name to it. On birthdays, send six or eight birthday cards sent from other friends or relatives (who you know will not do this), and you will find your loved one so delighted and happy. If in the nursing home, put the cards on the bulletin board or tape them to the closet door, so your loved one can see the bright colors and if capable of doing it, can show others what they have.
6. Try to remember, that if your loved one who verbally abuses you was in her/his "right mind," they would be horrified to see how they were behaving and that they do love you; so try and forgive the dread behaviors and verbal abuse they may demonstrate toward you now that their brains are, "broken" and severely compromised. They cannot help what they do.
7. Therapeutic fibs, (fiblets) are indeed ethical. They are an honorable and respected tool in the caregiver's tool box. Using such fiblets is an actual kindness that permits us to provide care, get them to medical care, dispense medication and get things done without causing them to have meltdowns, upset and agitation.
8. ALWAYS go the doctor's office and into the exam room with your loved one; they will be poor historians, minimize their conditions and never accurately report what the doctor said. In order not to have to talk about your loved one in front of them about their behaviors, you can write a detailed memo outlining changes and concerns and either fax it to the doctor a couple days prior to the appointment, or bring it with you and have staff give it to the doctor and ask him/her to read it BEFORE he/she goes into the exam room.
9. And as others here have said, get those DPOAs for Healthcare and for Finance. Get a HIPAA Waiver signed so the doctor can share medical information with you, and most of all; get your name on all your loved ones bank and financial accounts. This will save you from severe problems as the disease moves forward. Banks do not always honor the Financial DPOA, and it is best to get this done as early as possible. You will then be a co-owner on the account and an make adjustments, etc. as the need arises without hours of difficulty.
10. Get organized with files. Make new files for each calendar year. File ALL loved one related receipts, bills, etc., that you have paid. Make a file for each item or category that you paid on behalf of your loved one including household items, doctors, hospital, ambulance, nursing home, medications, etc. Then each and every month, use the checkbook register and bank statements to put together a Financial Accounting Report. You will be able to then find everything at a moment's notice and if you are ever questioned, you will have the files and reports to back yourself up. I also sent a copy of each month's Financial Accounting Report to each adult sibling to keep everything transparent and for them to see the cost of living items.
1l. Learn to stand up to doctors and other healthcare professionals when they are either inappropriate or non-caring, ignoring or shirking. They are just people and if you feel their services are not in-line with your loved ones symptoms or needs, speak up . . . you are now the advocate and the voice of your loved one who can no longer speak for themselves.
12. If your loved one is developing a fixation on wearing certain clothing items, catch on early and from then on, buy two of everything. That way, you can sneak the dirty garment for the wash and leave the second clean matching garment. This will avoid many meltdowns in such a situation. AND do buy a spare pair of eyeglasses to keep on hand. I found this valuable as glasses get lost in the hospital and in the nursing homes. Better safe than sorry on that front.
13. Learn early, that it costs you absolutely nothing to bite your tongue and agree with your loved one or not challenge your loved one no matter how wrong they are about something. Learn to never, ever argue, never to try and explain their incorrectness, you cannot educate . . . just validate their FEELINGS and not their words and then refocus them . . . you will both be better for it.
14. When there is a sudden moment of clearing of dementia, or a sudden loving moment or a moment of re-connection; take this as a gift, because it IS a gift.
15. Incontinence is the primary reason most loved ones are placed in a facility. Try to get a handle on this issue early and set up the incontinence supplies, do the every two hours in the bathroom training and getting things set up to deal with this as easily as possible and it will benefit both of you.
16. Remember that medications can act alone or in concert with another to cause problems both physical or psychological. This can happen when first starting a drug or can happen after taking the drug for a long while. Drugs need to be screened by the doctors each visit and at each problem. Acquaint yourself with each and every prescription and all side effects by going to a valid site like, www.rxlist.com and reading the side effects.
17. If your loved one suddenly has profound behavioral issues and heightened irritability and even agitation, you may want to have her/him checked for a "silent" urinary tract infection. These UTIs are called, "silent," because they have no physical symptoms; what often happens, is a sudden ramping up of profoundly negative behaviors and they are really problematic. Once the infection is treated, the person usually returns to baseline function. This is a frequent issue for many caregivers loved ones and in some, happens often.
18. Take care of yourself. Develop a relationship with a "companion" person or aide who can come in either routinely or when you call so you can get some breaks for yourself. This is a necessity and will serve you well.
19. Keep a log on the computer or in writing. It is astonishing how often we must remember things that happened, outcomes of doctor's visits, onset of change in condition or behavioral issues, etc. and having a dated log will really help. This is another one of those things I learned to do the hard way. On financial:
When conducting financial business for your loved one, NEVER,EVER co-mingle you checking and savings with theirs.
Your loved one should have their own checking and savings, etc. and you can be co-owner on it; but you should never put their money in your account or yours in theirs.
Also, try not to use a credit card, but if you must such a for mail order prescriptions or online purchase of incontinent supplies, try and use your parent's credit card and never, ever use it for your own personal use.
Be sure and keep the credit card statements in that file system we have discussed.
If you co-mingle funds, and then you are being questioned, you will not be able to easily demonstrate or defend what you have been doing.
Oh yes; though it sounds rather odd, do run a credit check on your loved one at all three credit bureaus. I was amazed to find out my mother had SIXTEEN credit accounts open, plus some errors on the report.
You can "freeze" the accounts for a small fee in that no one can go in and open an account, etc.; so that is a good thing to do.
Also, when I closed the accounts, I was told by each account company, that I would need to send a full copy of my DPOA for Finance to each one of them and it would take two months or so to completely process the account - SO; what I did was to call the accounts back at a later time and used my mother's name and said I wanted to close the accounts . . . . of course I had her social security number, her mother's maiden name and the account number and they closed the accounts right on the spot; no fuss no muss.
I also requested of the bank and ALL account companies - Mom's credit card as well as the accounts I was closing NOT to send any applications for future accounts nor any advertising whatsoever. To my surprise, this was honored.
dj okay posted a What every caregiver needs to know.....
I have no special claim to this document, it is simply a compilation of many, many words of wisdom from many of our members here in this forum.
As long as no one else has any objections, I see no reason not to share it with anyone who can make use of it.
*************** Forums Team **********************************************
Communication I learned early in her dementia that logic and reason were no longer my friends. She couldn't understand my reasoning and it only succeeded in frustrating both of us.
A caregiver must understand that their loved one cannot reason any longer. They cannot keep themselves safe, make rational decisions, and they cannot understand the word "no". You cannot argue with your loved one because it will only accomplish making your loved one angry and confused.
I learned the value of "loving lies". (“Learn to lie. It's good for their soul.”) (The best answer is the one that brings comfort and accomplishes the goals of keeping them as safe and well as possible. It doesn't have to be the truth.)
Be prepared to answer the same question a million times. In fifteen minutes. Develop strategies for dealing with this, because it WILL wear you down.
Learn to listen to what your loved one means, not what they say. Very often their halting or mixed-up or confabulated words are actually trying to communicate something that is important to them. Don't take it lightly. That said; don't take everything your loved one says personally. They don't really hate you. They don't really think you are trying to steal everything. They don't really wish they were dead.
Remember, they are doing the best they can.
Later on, I learned that my mother was still present at all times, although in a diminished way. Just when I thought that I had lost all of her personality and that she was just a shell of the mother I had known, her spirit would shine through in an instant to restore my faith and encourage me for the rest of my journey. (So important and I think most often overlooked. I think this is because caregivers often don't slow down often enough to notice.) (I'd like to second the fact that our loved ones are still present, even in stage 7. We can reach them ... and if we try and are patient, they can communicate with us.)
Philosophical First and foremost, non-professional caregivers need to understand that a person with AD has a terminal illness. They will never get better and will certainly get worse.
Second, they need to prepare for many, many years of caregiving whether in the home or in a facility. No one, not even any of mom's docs, expected her to live with AD as long as she has.
Take care of your loved one the way you would want to be taken care of and treated.
Realize that everyone's journey is different, and what is right for someone else may not be right for you. In other words, if placement is the option that will work best for everyone, there's no shame in that. If you have the time, energy, skills and desire to devote yourself to in-home caregiving, then do so. But don't judge yourself by what others have done.
When you have a bad day with your loved one, don't stew about it. Had a bad day or a bad visit? This too shall pass. Did you do your best today? That's all anyone can ask.
Promise only that you will always love them and do your best to keep them comfortable and safe. Your love will always be there but promising to keep them in their own home or to always care for them cannot always happen. This disease often needs professionals in controlled settings to keep your loved one safe and comfortable.
The disease often takes "happy" away and the caregiver needs to realize that this cannot be on their "to do" list.
Our loved ones do not regress to childhood. They simply have a greater tendency to pull up memories from an earlier time and to be unable tell that the memories are "old". They are still adults, with the memories of adults, and should be treated with the respect and consideration due to adults. They still do have recent memories. And the more an event carries strong emotions -- of joy, of fear, of sorrow -- the more likely our loved ones will retain the memory of it.
You will need to step into a parental role far sooner than you realize; intentions to "respect" your parents’ old role and decision making puts them at risk.
I feel I have learned to live in the moment...and not take one day for granted.
And, at the end of the day, when you are stressed out and exhausted, say a prayer for those Alzheimer patients in facilities that have nobody that visits or cares. It will make you grateful that you are who you are - one that cares.
Practical Take the time to find an AMAZING Certified Elder Law Attorney (CELA), and a primary care geriatrician. We must delegate and pay for professional expertise for the well-being of our ALZ loved ones. We are nearing the end of our journey with this disease, and the one thing I would add looking back, is don't be afraid to jump in and take charge of the situation early. It’s hard, and we want to be mindful of our loved ones feelings, but when it comes to financial matters, wills, POA's, etc.(and even living arrangements), you simply have to take charge. It may be rough in the moment, but you will save yourself so much worry and grief down the road.
Start gathering information on resources and help before you actually need it. Get a notebook; it can be a small steno notebook. Keep it with you at all times and right down names, phone numbers of EVERYONE you speak with, the agency or group they are with. Take it to all medical appointments and note date, doc's name, take notes of what s/he says. Doctors, dentist, specialists, ALL of it. Need a repair to an appliance in the home (whether loved one's home or yours if loved one lives with you) put all the info in the notebook. This book will become your chronological list of everything that happens, and you will find it highly valuable when you need to go back and call someone to ask them about . . . whatever. Monitor your loved one closely, watch for things they are having difficulty with and make modifications where you can, i.e. difficulty with eating or remembering to eat, dressing, hygiene, driving, handling finances, difficulty with walking, using the phone. Looking around their environment and making safety modifications for them.
By far, the most serious danger posed in the earlier stages of the Alzheimer's disease is when the individual may decide they want to go for a walk, go searching for "home," or maybe just walk outside to get the paper. In a restaurant they may go to a rest-room. When they turn around, the place they expect to see is gone and they find themselves standing helplessly confused what they see is totally unfamiliar to them. Get to know your local police. Take them a picture of your loved one, explain his/her dementia. Even if they have a Safe Return bracelet, if your local police are aware of the issue, they are better prepared.
When visiting your local police, ask if you can add your loved one's dementia to your 9-1-1 record, in case something happens to YOU.
Be persistent and proactive in dealing with medical professionals, care facilities, anyone and any place that is providing care to your loved one. If you are not satisfied with the care, say something and insist on getting answers and getting concerns resolved. Don't be afraid to ask questions, don't be afraid or hesitant to ask for something you want done for your loved one. Go with your loved ones to doctor appointments always.
If you have concerns regarding your loved ones, fax or email the health professional a written list of your concerns days before the appointment, this helps give the health professional a heads-up, saves you from having to bring up sensitive issues in front of your loved one.
Get your loved one started in Adult Daycare while they are still "with it" enough to appreciate it. If you wait too long, the sensory stimulation will overload them. (This was a big mistake I made.)
Be very careful about Board & Care facilities, aka Adult Foster Homes. They usually cannot provide the medical care your loved one will need, and they are not held to the same standards as nursing homes or SNFs.
Support your loved one with memory crutches in the early and mid-stages. Label things, write down phone numbers and leave in multiple places. Assist with meds. Recognize that in later phases, those crutches will be useless. Avoid insisting that your loved one recognize the crutch; realize that they haven't got a clue what the crutch is supposed to mean.
Leave out plenty of paper and pens in your loved one’s room. You never know what sweet notes you will find once they have died. You will find that they probably have tried to create their own crutches, and those self-made crutches will move you to tears when they are no longer around.
Financial Get a file cabinet / drawer ready, and buy a box of file folders. The amount of paperwork that comes with loved one (unless you are dealing with Early Onset, then I don't know about that) is astounding. Medicare, Social Security, Pension, bank statements, credit accounts, VA benefits statements, reports from the lab, DMV notices for license, motor vehicle tax, if loved one has own home all the things that go with a house, real estate taxes, home owners insurance, electric and phone bills, cable bill, the paper alone will overwhelm you!!
And as time goes on, for Caregivers to come in while you go out for a once every 3 months night out, for Rehab stays, for ER visits, ambulance rides, hospital stays. Be very, very, very careful and watch for Medicare fraud. Read all those statements you receive, as dull and boring as they may be!
Support Join a support group.
Find a Caregiver Support Group near you, and GO, every meeting. Remember to take care of yourselves as well in the process. Do not be ashamed or hesitant to ask for help. And again, gather as much help as you can get in caring for your loved one, whether it's family, friends, or hired.
Seek information and support during all stages of caregiving. Try your best to cultivate good relationships with family and hold them close. Do all you can to engage them in the care of your loved one. That said, be prepared to lose siblings and other "close" family members over this awful disease.
I've learned, and I think all caregivers should learn, that you shouldn't count on family for help, especially other siblings. Even if they say they will help, remember that they won't. Always rely on yourself to make the decisions because nobody else will do it.
Also, a lot of friends and family will become scarce. You will hardly ever see anybody for a visit and when they do visit, it will be very short. It's kind of a lonely process. Lean heavily on the Alzconnected.org forum for advice, counsel, and a shoulder to cry on. And yet, don't rely solely on this forum. Caregivers tend to become too isolated and we all need real humans for real hugs and real shoulders to cry on.
Medical Make a list of all the medications your loved one is taking, the dosages, when they take it and the prescription number and carry that list with you at all times. You never know when you need to call for an ambulance or meet your loved one at the ER, this list comes in handy and the emergency personnel always appreciate it.
Prepare a Go-Bag for the days you have to take your loved one to the ER. In addition to a book for you to read, make sure you have the following: Current list of meds, and fifteen million jillion copies of the AHCD, DPOA, and the (red or hot pink) POLST. No matter how many times you give these documents to a hospital, they will ignore them or lose them or forget to consult them.
Never assume that any new symptom is "just" due to the dementia. It could be due to a medicine (either an acute or a chronic side effect), drug interactions, an infection, dehydration, an injury, undiagnosed and/or under-treated pain, sensory deprivation, sensory overload, etc. When in doubt, talk to the doctor.
Hundreds of different factors can cause symptoms that mimic Alzheimer's. Most of them can be treated if caught soon enough. It is essential to have our loved ones thoroughly evaluated by a knowledgeable team of doctors. Don't assume it's Alzheimer's just because someone is older and/or close relatives were diagnosed with AD.
Keep a journal of symptoms, of treatments (prescription and OTC drugs, natural supplements, etc), and of anything that could affect symptoms, especially anything that can cause stress. Symptoms and behaviors are affected by all sorts of different factors, and the only way to tell whether, e.g., a new drug is helping or causing a side effect is by keeping daily track of what's going on in our loved ones' lives.
Many doctors are unfamiliar with the disorders that cause dementia, don't know how to diagnose them, don't know how to treat them ... and often don't like working with dementia patients, which is understandable because there is so little that can be done for them.
Caregivers need to keep searching until they find qualified doctors who want to work with and are capable of helping their loved ones.
Buy a Physician's Desk Reference and learn what the meds do that your doctor prescribes. Don't be shy about challenging them on meds that are too dangerous or ineffective.
Watch for UTIs. If you live a good distance from a hospital, buy the self-test strips (Target carries them). Any sudden change in behavior, test for a UTI.
Planning Even if you plan to keep your loved one at home for as long as possible, start researching nursing homes, Skilled Nursing Facilities, and assisted living facilities *now*. The wait list for the good ones can be two years long.
Make sure to make arrangements for some kind of outside help as soon as you can, such as respite care or something similar. You may think you can do it alone, but I'm here to say that nobody can do it all by themselves. You will need someone else reliable to step in for you and it certainly won't be family. If your loved one relies on Medicaid other state equivalents, meet with someone (e.g. Area Council on Aging) who can explain the ins and outs of the system thoroughly, especially your rights.
Many hospitals and nursing homes ignore patients' rights unless you are armed with knowledge. Anticipate the needs of your loved one and put a plan together to meet those needs.
Understand that no matter how well-prepared you are for this disease, you will hit the inevitable brick wall where all your preparedness means absolutely, positively nothing. What works today is guaranteed not to work tomorrow.
Plan, but try and put your energy into "Now." Things can change on a dime, and your journey can be anywhere from a few months to decades.
Education It is never too early to gather information on adult daycare centers, different types of care facilities, caregiving agencies, etc., advance directives, power of attorney, eldercare attorneys, VA benefits.
I second the idea of gathering as much information as you can as soon as you can!!! For many of us we may not be the primary caregiver from the beginning. In our case my FIL took care of MIL and really hid as much as he could from everyone so when he got sick and all of a sudden DH and I were thrown into caring for both we had to get a very crash course indeed!!! Also make sure your loved one has their Will in order including a living Will so you know their wishes. Also, we were not able to find out exactly my MIL's wishes for funeral, burial, etc. So we are doing the best we know how. If you can have a conversation about this while your loved one is still able it takes pressure off worrying if you are doing right by them.
Learn all you can about the specific form of dementia your loved one has. Each type requires a unique strategy, tweaked to unique progression.
Emotional Try not to feel guilty. When your loved one loses independence or abilities, it is not YOUR fault -- it is the disease's fault.
You're trying to do your best to help keep that person safe, and they may not always like it. But they are past the point of understanding/comprehending your true intentions. If your loved one relies on Medicaid etc., be prepared for denigrating statements directed at you the caregiver or your loved one about lack of preparedness, laziness, blah blah blah. Develop a thick skin and anticipate this lack of caring. Those people are not worth the time of day.
Be prepared for disappointments in your circle of friends, people who say they will help who never do. One negative/positive aspect of being a caregiver for someone with dementia: You learn who your true friends are (and it isn't always the people you'd expect).
Be careful not to antagonize your immediate family (spouse, children, grandchildren) over care of your loved one. While your loved one's needs are important, the needs of the not-terminal living trump their needs.
Prepare yourself for the long haul. This is not a short terminal disease, twelve months and funeral. It can be painfully, excruciatingly long. That said, if you are NOT prepared for this disease, you will lose your mind.
Grow a backbone. (This is intended for those who are prone to accept everything a professional says, whether it’s a doctor, nurse, or professional caregiver. Only you know your loved one intimately, and you have to be the best advocate for them possible. This requires finding a new strength within yourself.)
End-of-life Decisions
For a dementia patient, quality of life can be far more important than quantity of life. Our loved ones can go on palliative care whenever they, or we, feel it is time to focus on quality of life.
Self-Care
The Primary Caregiver should not devote so much of their own time and energy to the demented patient that the Caregiver wakes up one day to realize that they have no life of their own.
For a Caregiver to give up their life in order to offer care and loyalty to the demented patient is destroying two people at once. The patient will progress in dementia anyway, no matter. The Caregiver should reserve part of their private life for their own tasks and savors. [ And by the way, I am most guilty of the latter by offering so much of my being to my wife's Dementia that I gave my life away, only to realize my mistake in my 8th year of Caregiving, then taking two years to retrieve even part of the life I had destroyed.]
Try and pace yourself as best you can, it's a long journey and by pacing, I mean using as many resources as possible that you can find to help care for your loved one. Take good care of yourself. You're no good to your loved one if they outlive you.
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Trust your gut! If you’re asking yourself “Is it time…?” …to take away the car keys, …to get more help, …to move loved one to memory care, It probably IS time. We tend to put off making these important decisions too long. -------------------------------------------------------------------------------
In addition to all these great comments, here is a wonderful list from a very experienced nurse that went through the dementia journey with her mother and then again with her step-dad. I feel I need to include it in its entirety, as it contains so many relevant subjects.
1. Try to remember, if your Loved One is driving you to absolute distraction; imagine what it must be like to live inside their heads, FEELING all that agitation, upset and fury and believing all those horrible delusions (rigid false beliefs) as truth. It is a hellish existence for them and unconscionable to let it continue when there is help to be had. Getting a dementia expert early in the course of the disease is a necessity on several fronts.
2. Always have a, "Plan B;" that is, a well-researched and well thought out plan of what you will do IF something unforeseen abruptly happens. This can happen and does happen. So; if you have researched local assisted living facilities as well as local nursing homes and Care Agencies prior to need, then if the abrupt unforeseen event arises, physical or dementia, you will be prepared and not have to run hither and thither under tremendous pressure and time constraints. It will also help you to know the quality of such facilities and that will benefit your loved one.
3. The person with dementia is MORE than their dementia. They, just like us, have multiple body systems. They, just like us, will develop illnesses and conditions totally unconnected to their dementia. Always honor this and ensure that the loved one is screened for other conditions outside the dementia when they begin to exhibit symptoms. Do not ascribe, or permit doctors to ascribe all changes and symptoms to dementia alone.
4. When our loved ones have delusions and confabulate making up so many stories; it can be exhausting and a bit unnerving; BUT always err on the side of caution and check things out that they tell you, because there will be times when what they are saying is not a delusion, but actual truth. Respect this and do your due diligence and check things out. I learned this the hard way.
5. If your loved one is alert, and their friends (and even relatives) no longer call or send cards; buy a stack of "thinking of you" cards and mail a couple now and then, and sign someone else's name to it. On birthdays, send six or eight birthday cards sent from other friends or relatives (who you know will not do this), and you will find your loved one so delighted and happy. If in the nursing home, put the cards on the bulletin board or tape them to the closet door, so your loved one can see the bright colors and if capable of doing it, can show others what they have.
6. Try to remember, that if your loved one who verbally abuses you was in her/his "right mind," they would be horrified to see how they were behaving and that they do love you; so try and forgive the dread behaviors and verbal abuse they may demonstrate toward you now that their brains are, "broken" and severely compromised. They cannot help what they do.
7. Therapeutic fibs, (fiblets) are indeed ethical. They are an honorable and respected tool in the caregiver's tool box. Using such fiblets is an actual kindness that permits us to provide care, get them to medical care, dispense medication and get things done without causing them to have meltdowns, upset and agitation.
8. ALWAYS go the doctor's office and into the exam room with your loved one; they will be poor historians, minimize their conditions and never accurately report what the doctor said. In order not to have to talk about your loved one in front of them about their behaviors, you can write a detailed memo outlining changes and concerns and either fax it to the doctor a couple days prior to the appointment, or bring it with you and have staff give it to the doctor and ask him/her to read it BEFORE he/she goes into the exam room.
9. And as others here have said, get those DPOAs for Healthcare and for Finance. Get a HIPAA Waiver signed so the doctor can share medical information with you, and most of all; get your name on all your loved ones bank and financial accounts. This will save you from severe problems as the disease moves forward. Banks do not always honor the Financial DPOA, and it is best to get this done as early as possible. You will then be a co-owner on the account and an make adjustments, etc. as the need arises without hours of difficulty.
10. Get organized with files. Make new files for each calendar year. File ALL loved one related receipts, bills, etc., that you have paid. Make a file for each item or category that you paid on behalf of your loved one including household items, doctors, hospital, ambulance, nursing home, medications, etc. Then each and every month, use the checkbook register and bank statements to put together a Financial Accounting Report. You will be able to then find everything at a moment's notice and if you are ever questioned, you will have the files and reports to back yourself up. I also sent a copy of each month's Financial Accounting Report to each adult sibling to keep everything transparent and for them to see the cost of living items.
1l. Learn to stand up to doctors and other healthcare professionals when they are either inappropriate or non-caring, ignoring or shirking. They are just people and if you feel their services are not in-line with your loved ones symptoms or needs, speak up . . . you are now the advocate and the voice of your loved one who can no longer speak for themselves.
12. If your loved one is developing a fixation on wearing certain clothing items, catch on early and from then on, buy two of everything. That way, you can sneak the dirty garment for the wash and leave the second clean matching garment. This will avoid many meltdowns in such a situation. AND do buy a spare pair of eyeglasses to keep on hand. I found this valuable as glasses get lost in the hospital and in the nursing homes. Better safe than sorry on that front.
13. Learn early, that it costs you absolutely nothing to bite your tongue and agree with your loved one or not challenge your loved one no matter how wrong they are about something. Learn to never, ever argue, never to try and explain their incorrectness, you cannot educate . . . just validate their FEELINGS and not their words and then refocus them . . . you will both be better for it.
14. When there is a sudden moment of clearing of dementia, or a sudden loving moment or a moment of re-connection; take this as a gift, because it IS a gift.
15. Incontinence is the primary reason most loved ones are placed in a facility. Try to get a handle on this issue early and set up the incontinence supplies, do the every two hours in the bathroom training and getting things set up to deal with this as easily as possible and it will benefit both of you.
16. Remember that medications can act alone or in concert with another to cause problems both physical or psychological. This can happen when first starting a drug or can happen after taking the drug for a long while. Drugs need to be screened by the doctors each visit and at each problem. Acquaint yourself with each and every prescription and all side effects by going to a valid site like, www.rxlist.com and reading the side effects.
17. If your loved one suddenly has profound behavioral issues and heightened irritability and even agitation, you may want to have her/him checked for a "silent" urinary tract infection. These UTIs are called, "silent," because they have no physical symptoms; what often happens, is a sudden ramping up of profoundly negative behaviors and they are really problematic. Once the infection is treated, the person usually returns to baseline function. This is a frequent issue for many caregivers loved ones and in some, happens often.
18. Take care of yourself. Develop a relationship with a "companion" person or aide who can come in either routinely or when you call so you can get some breaks for yourself. This is a necessity and will serve you well.
19. Keep a log on the computer or in writing. It is astonishing how often we must remember things that happened, outcomes of doctor's visits, onset of change in condition or behavioral issues, etc. and having a dated log will really help. This is another one of those things I learned to do the hard way. On financial:
When conducting financial business for your loved one, NEVER,EVER co-mingle you checking and savings with theirs.
Your loved one should have their own checking and savings, etc. and you can be co-owner on it; but you should never put their money in your account or yours in theirs.
Also, try not to use a credit card, but if you must such a for mail order prescriptions or online purchase of incontinent supplies, try and use your parent's credit card and never, ever use it for your own personal use.
Be sure and keep the credit card statements in that file system we have discussed.
If you co-mingle funds, and then you are being questioned, you will not be able to easily demonstrate or defend what you have been doing.
Oh yes; though it sounds rather odd, do run a credit check on your loved one at all three credit bureaus. I was amazed to find out my mother had SIXTEEN credit accounts open, plus some errors on the report.
You can "freeze" the accounts for a small fee in that no one can go in and open an account, etc.; so that is a good thing to do.
Also, when I closed the accounts, I was told by each account company, that I would need to send a full copy of my DPOA for Finance to each one of them and it would take two months or so to completely process the account - SO; what I did was to call the accounts back at a later time and used my mother's name and said I wanted to close the accounts . . . . of course I had her social security number, her mother's maiden name and the account number and they closed the accounts right on the spot; no fuss no muss.
I also requested of the bank and ALL account companies - Mom's credit card as well as the accounts I was closing NOT to send any applications for future accounts nor any advertising whatsoever. To my surprise, this was honored.
dj okay posted a What every caregiver needs to know.....
I have no special claim to this document, it is simply a compilation of many, many words of wisdom from many of our members here in this forum.
As long as no one else has any objections, I see no reason not to share it with anyone who can make use of it.
*************** Forums Team **********************************************
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