Do you ever have families of patients who are in denial over the Alzheimer’s diagnosis? How do you deal with that? The reason I ask is that my father-in-law very obviously has some sort of dementia, but no one wants to admit it. They say things like, “oh, he’s not the sort who would get Alzheimer’s.”
Oh, this is VERY common. Not where I work, although it still happens a bit, but by the time your parent/spouse is admitted to a psychiatric hospital (until 6 years ago it was a Provincial Hospital, akin to the “State Hospitals” in the USA, with all the social stigma attatched…it might be run by someone else now but it is still…THAT BUILDING) usually the denial is gone. I say usually because we still encounter that.
When I worked at a private LTC centre (in British Columbia) we had four sections of the building, and sometimes a patient was admitted to one section when he or she needed to be on the locked Dementia Unit. (In the interest of pronouns I will now call the patient a “he” or Paul for the rest of this section) One patient, Paul, was admitted to a sort of general care area where most of the patients had a few little medical problems, just needed some looking in on, were basically independant. The daughters, especially one of the two, were insistant that Paul was fine, just a bit mixed up after his wife’s death and didn’t cope very well at home, but there was nothing wrong with his brain.
As time went by and it became more and more clear that Paul was NOT fine, but had a dementing illness, it became a blame game for the daughters. (Again, one was lead prosecutor and the other may have had more understanding but she had never in her life stood up to her sister, so why would she start now?) It must be the medications Paul is on. Consent for the medications was withdrawn and suddenly some of the medications that were helping to stabilize his condition were removed. (Thank goodness nothing of the opiate or benzodiazapine classes were withdrawn, or he might have had worse problems, the drugs stopped on a dime, no tapering) Maybe the food was causing the problems, suddenly Paul had to have a selection of fresh fruits with every meal, and salads and special health foods the daughter brought in. (Nothing against fresh food, but the endless accomodating we did at this facility reached absurd proportions…special meals, nurses giving Ginko Bilboa tablets as ordered, patients wearing magnetic bracelets and so forth, because we “listened to families” Paul was a 70 year old meat and potatoes kind of guy, he didn’t want alfalfa sprout juice with his meals.
The daughters were in a world of hurt and denial and they would not accept that Paul had dementing illness, most likely of the Alzheimers type. Probably because of the difficulty in obtaining a diagnosis (basically when you rule out every other cause of memory loss, apathy, neurological changes, etc then it is probably Alzheimers. Or let Quasimodem describe the ruling out everything else here
It took over a year to get them to move their dad within the facility, the same social workers, management, nursing staff and so forth just to the dementia unit. A situation where he actually left the building and wandered across a busy street was the turning point, and they realized it was for Dad’s safety he needed to be moved. Once he was there, they decided it was the BEST PLACE EVER, and really got involved in the Alzheimers family group. They were still strident and annoying though, but at least Dad was not the lonely guy in the corner wetting himself, but actually fitting in to the unit and one of the higher functioning people there.
Sadly, its hard to make family recognize it. I have two grandparents who had a form of dementia, and several great aunts. I know in one case the denial went on for years although I clued in years before most, and I rarely see that aunt. The best I can suggest is that someone who thinks dementia is a problem, go see the father in law’s family doctor. There are medications that slow the progress, there are things that can be done if it is caught in time. Pretending Dad isn’t hiding lemons in the book case* doesn’t help anyone.
*Canadian Dopers – does anyone have a link for a youtube or similar of that Alz Society commercial where the daughter brings her dad lemons? I couldnt find it anywhere on line.
Kansas Beekeeper, I hope I answered your question, on re read it seems like I have rambled on with anecdote. To sum up: Yes denial exists, but it puts the client at risk in many different ways. Not knowing the way your system works in your community I don’t know how to direct you, but family doctor is usually the first point of entry. Then if you have something like aCommunity Care Access Centre where you are, referrals can go through there. It doesn’t necessarily mean long term care right away, but it can give the family some resources and strategies.
Yes, thank you for the response. Unfortunately, there’s little that I or my wife can do. FIL lives out of state, and is dominated by his wife. There’s no going around her. I feel sorry for him. He would be much happier if she would admit the problem and deal with him with sympathy and get help. Instead, she yells and nags. He can’t function at all without her, but is obviously miserable in his current situation. My guess is the family doctor has aleady told her he has dementia, but she’s good at only hearing what she wants from doctors.
That is perfect. Thank you so much.
Kansas - can you report it as elder abuse?
I don’t think it’s gone that far.
Kansas Beekeeper, this REALLY bothers me, not just because FIL isn’t getting care, but MIL will burn out from the stress, and one day every issue under the sun will come out all at once. Does your wife have other siblings or maybe a close cousin who could have influence? What does the FIL say?
I bet he stays home more and more, because wife doesn’t want too much attention to the “odd things” that he is doing. Do they have wills and POAs in place?
I do believe you when you say you are pretty powerless over the situation, in some cases the best you can hope for is FIL ends up in hospital for some other reason and the situation can be brought to the attention of social workers and discharge planners there. (Yes it is a terrible waste of resources for someone with pneumonia to be in hospital mainly because they need case management. But, at least there something will get done, especially if family members get involved.)
Although a longtime lurker, I have rarely posted, but this thread seemed like a godsend when I stumbled across it. I work fulltime at a demanding job and am the primary caregiver for my 97-year-old mother-in-law and 76-year-old husband. Mom has mild dementia but is still ambulatory, continent and understands simple instructions. My husband is slowly dying of severe emphysema and COPD. He uses a walker and is on oxygen 24/7. Both of these people have always had difficult, demanding, self-centered personalities that have not mellowed with age. The stress of the abusive bullying, constant demands and unpleasant personalities is really taking a toll. Do you have any advice for a caretaker for whom duty, rather than affection, is the only motivation? Assisted living is not a possibility; there are no other family members who can help. Thanks–it’s been a difficult day.
Yes, they have wills in place; I’m not sure about POAs. In a way that’s foreign to me, all the siblings are so deferential to their parents that while they have private discussions about there being a problem, they won’t do anything about it or put a name to it. It’s only in the last year or two that my wife has been willing to admit that he has dementia, although it’s been obvious longer.
It’s not like FIL isn’t eating or getting physical care he needs. Yes, MIL’s fuse is getting increasingly short. FIL doesn’t say much about his life because increasingly he doesn’t say much about anything that makes sense. When he does make sense, he’s often just parroting what MIL just said.
You are quite right about them staying home more and more. There have been increasing “incidents” with him and friends and family that I think embarrass her. To some degree it’s a blessing for me that they don’t come and visit because MIL would dump FIL on me when they were here. I think he’s been a chore for MIL for a number of years and visiting here was something of a vacation for her. I finally started making excuses to avoid him when they came, because I couldn’t manage him and because it was giving my wife a way to ignore the problem.
FIL has health problems that bring him to doctors. MIL, however, always goes to doctors appointments with him, and I’m suspicious she does all the talking or guides him in his answers.
I’m sensitive to all this because one of my aunts died of Alzheimer’s. She was in a skilled care unit at nursing home that was pretty grim. I’ve never seen anyone so unhappy. She obviously sensed that something was terribly wrong, but she didn’t have the capacity to understand what.
I’m glad there are people like you who can give care to Alzheimer’s patients. I don’t mean to hijack your thread with my family’s problems.
I would find dealing with Alzheimer’s patients extremely frustrating. How do you manage?
First of all, La Beldame, your story horrifies me and you have my sympathy and respect. I don’t know where you are, (I’m really really hoping Canada, or somewhere that has good health care coverage, and you aren’t also struggling financially with the financial costs of your situation.) so I can’t begin to try to tell you where to start, except of course with family doctors.
Who looks after them when you are at work? Do you have home health aides come in? Are there any societies, or churches, or anything that offer some kind of respite care for you? Try your local Alzheimers Society, I know they usually have caregiver support meetings, and they will have suggestions on how you can get some help.
Does the MIL live with you? Does anyone else do the cooking/cleaning? Can you get Meals on Wheels or similar to at least deliver lunchtime meals to them so that part is taken care of.
Are there Adult daycares that your MIL could go to during the day, so she gets out, sees new people, and gives you a break? Also that would mean that social workers, etc would be more aware of your situation, and they would know more of who and what programmes to contact in your locale.
I know I am suggesting you do some more research, calling, etc that you don’t necessarily have time for, but caregiver stress is real and if you fall apart, then who is going to hold the family together?
I feel really helpless, I wish I had a big roldex of who to contact in every city in the world to help the people who are asking the questions. I wish I had a magic wand to wave and make everything better. I am sorry for your sake that assisted living is not an option for either one of them. Is it due to financial reasons or more social/emotional reasons?
I know its not much but hug to you, and a big glass of wine, because you sure sound like you need it.
I am going to think more about your case and post more later, I just wanted to write you something right now.
Do you mean that assisted living is not an option because of money? If they are indigent, they may qualify for Medicaid which would pay for assisted living. If that’s the issue, your local legal aid society would help you. If you can’t find a legal aid phone number, call your state’s bar association and they will give it to you. If they are not totally indigent, it may be possible for them to “spend down” so they are Medicaid eligible, but it’s got to be done right with the assistance of someone who knows the legal requirements.
Mona Lisa Simpson, thank you for doing what you do. My mom was in a LTC facility, and the nurses and staff were the best I have ever met. She was in the dementia wing of a nursing home. I think there were maybe 25 residents in that wing. You (and all the staff) give the families peace of mind.
Oh, thank you so much, Mona Lisa–it does help to have a comforting word from someone who understands how difficult it can be. I find blogs and support groups that emphasize how rewarding being a caregiver can be pretty tedious, as you can imagine. Unfortunately, I’m in the United States–so not a lot of resources. Assisted living costs about $4,000/month locally (Did I mention that, along with some Social Security, I’m the sole support of the household, in addition to a college student who’s going to Oxford next year?)
Right now, I have a cobbled together a support network consisting of my own aging parents and a neighbor who check in, pick up prescriptions and make sure no one is in trouble. I am trying to arrange for a home health aide to come in but my understanding is that Medicare will only pay for medically necessary, part-time assistance (wound care or PT, not help with errands or bathing, etc.) And my state, along with many others in this economy, has cut funding to social services.
I think we’ll muddle through–I’ve been taking it one day at a time, but I know I’m not alone–this situation reflects a huge problem with the American healthcare system. I, for one would welcome Obama’s death panels. Go ahead, pull the plug on granny! (Kidding, of course.) On my second big glass of wine–The next challenge will be figuring out how to pay for my rehab!
There’s the rub:my husband and I own our home jointly. In order for him to be indigent, we would have to sell it and spend down every asset we have and I would have to divorce him, because of my income. Penury in my own old age is already a pretty frightening prospect (I’m 52) because the house is my primary asset for my own retirement. Yikes! May be time for a third glass of wine.
If he served in the military, he may qualify for the Aid & Assistance benefit (depending on when he served). I’m working on this right now to help our family pay for my parents’ in-home care.
Check with your local Office on Aging. There may be in-home programs you may qualify for that can help with the burden. The Eastern Nebraska Office on Aging sends someone out once a week to bathe and shave my dad.
Definitely look at Adult Daycare.
I thought that Medicaid could not consider your home when figuring your eligibility?
ETA: I understand the Alzheimers Association support groups can be a godsend.
Oh lord.
Beldame I really, really don’t know what to say. I have heard of situations like yours where the spouses do divorce, “for health purposes”, but I am not sure how you would do that and hold on to the house. But I suspect you have already batted around all the alternatives.
52 is young to be burdened with all that, plus a son going to a very expensive university, overseas.
Is there no pension from MIL or husband? Can your son not pay his own tuition and expenses? Or part of them? Do your husband and MIL not realize how drianing this is to you?
Kansas Beekeeper and others, I will respond soon, it is time for books, bedtime and snuggles with my five year old son. Who is a large part of my sanity on days when work drains me. My job gives me the means to support the awesomest kid in the world* and there is nothing sad about him.
*[bragging mom] Last year on his birthday he blew out his birthday candles and told me that he wished he could be the “awesomest kid in the world”. What he didn’t know is he’s already there. [/bragging mom]
I may be confused about the house (og knows it’s likely), but there are other jointly owned assets, plus he owns his mother’s condominium (she has a life estate) which means it can’t be sold without her consent as long as she’s alive. They’re both stubborn and insist the will live for ever, so refuse to do any estate planning. Tried adult daycare–granny won’t go because she hates “old people.” Wants to go to Vegas, instead. Yes, really. I really didn’t mean to thread-hijack with my own personal stuff. For someone who never posts, I seem to be doing a lot of talking on this thread.
It’s no worry. This is the best aspect of this community, that you are most certainly not alone. Is it possible to hire someone to come in for at least a few hours a day maybe a few days a week? It’s vital for everyone that you get some time to yourself as often as you can. What you’re doing right now is just more that one person can bear, IMO. I don’t have it here at home, but I have a book to recommend that has some good resources in it. I’ll get you the title tomorrow.
ETA: Dangit. You mentioned having someone come in. But I do urge you to check around and see on assistance that’s not necessarily medically necessary. Every little bit helps.
La Beldame, have you checked into your local hospice organization? We were astonished to discover that my husband’s 93-y-o mother was eligible for hospice elder care services. She did not require a terminal diagnosis to receive them.
Thanks all. I’ve been reading this thread for years and often envied the comradarie that existed among the posters, but was hesitant to post myself. Glad I did. Snuggle that boy, Mona Lisa, they grow up fast!