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.
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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.
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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.
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Forums Team
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