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Annabox Asked October 2020

Dad diagnosed with dementia. Has anyone though maybe that's not the right diagnosis?

My father is 79. He’s always been difficult. He's lived alone for 45 years and always was extremely set in his ways. Two years ago, he ended up in the hospital (back issues) which ended up being bladder cancer. He had surgeries, treatment, and then rehab. The rehab told me he has dementia (and although I know there is some), most of the time he’s fine (well, I should say he’s socially like he’s been all his life). He can carry on a conversation, he can have a discussion, and he can joke. There are some things he’s not good at - like technology. He’s never been a tv watcher, so he barely turned his on, he’s not used to ordering food for a week off of a paper menu (so I do it), and he’s never been good at following directions. There are times (like when he’s anxious, angry, or embarrassed about being “him) or when his dementia shows. He could be talking to a doctor, a family member, or someone he doesnt know, and he may say he’s fine and happy! He will lie about walking (he doesn’t walk alone), or he may say he’s working in the yard (when he’s not - obviously), but those times are few and far between. Keep in mind though...., dad was never like most dads. I don't even know if he’s been telling me the truth for the last 20 years about what he does in a day. He’s sort of like someone that was frozen in 1970 and thawed out today.
After rehab he couldnt go back to his house. He didn’t want to move in with my husband and I (because he’s headstrong and insisted he’s fine and can manage) but he no way couldn’t. So after rehab, he transitioned into LTC until I could think about what to do (that was a year and a half ago). During this time, I tried to get him into the AL where he is, but they said he has some physical issues that prevent him from going there. We (he and I pre-Covid) looked at other AL’s for him (and he was as cordial as one could be while we talked to the administrator), but when we got in the car, all bets were off. He did not want to move into any of them. He didnt want to stay where he was either. He kept saying he wanted to go home (but even with an aide, there’s no way he could manage in a wheelchair in his house).
It has truly been my mission for the last year and a half to make him content, because he’s not. I used to visit The LTC place every day but now because of lockdown, I can go inside only 2 days a week for 2 hrs each time. I love my dad but I have so much anxiety going to visit him because even though 99% of our visit is normal, the minute I have to leave, he starts to explain to me (in the most logical way) that he doesn’t like it there and wants to leave.
For a while now, everyone has made me believe that because of the dementia, I should comfort him, get in his world, and do what I have to do to get through the day. But for me, it seems like dads feelings are genuine. What if he truly doesn’t like it? What if he’s truly unhappy? I don’t want to pray he’ll forget about it “tomorrow” because sometimes he does and sometimes he doesn’t. He has been talking about leaving (in some fashion) for as long as he’s been there, but he doesn’t want to live anywhere else but home. I know if I took him to his home (with an aide) he’d be a mess (and the aide would most likely leave on the first day)! If it was truly JUST dementia, wouldn’t he be settled in by now? I’m just afraid that maybe my dad has some other mental conditions going on that just were never diagnosed, but no one understands because they didn’t know him when he was younger. I’m so lost and this whole life I’m living is just co aiming the life I used to have.

AlvaDeer Oct 2020
Rehabs are capable of doing the the tests for Alzheimer's. Are you his POA for health care. Can you access his records to see what test were run. And I agree with others, be certain all of his paperwork is done for POA, wills, etc and then go for diagnosis recommended through his Doctor.
Not everything can be fixed when we head into age, losses of physical ability and mental dementia. Balance is the problem that sent my bro into ALF. Diagnosed with probable early Lewy's dementia by symptoms during hospitalization following car accident.
You say Dad isn't happy there. I would venture to say that fully 97% of those there feel the same. Happiness is not an option when it comes to a loss. It is just getting through, and almost all dealing with it feel lost, more or less on any given day. Whatever your Dad's mental status is, balance is not good for living independently at home and taking care of yourself.
I hope you find some peace. It is about the best that can be hoped for on this long slow slide down.

sjplegacy Oct 2020
A rehab facility "diagnosing" dementia. Never heard of it. Unless they've gathered his family and medical history and administered a battery of cognitive tests they're off base in even suggesting dementia much less saying he has it. Dementia can manifest itself in many ways- confusion, memory loss, difficulty with language. These are ALWAYS accompanied with some problems with daily living activites like dressing, forgetting how to do familiar tasks, getting lost driving, etc. A PCP can suggest dementia after some basic tests, but a neurologist can definitely provide the proper diagnosis (95% of the time). Determining he has dementia is just step one. Determining what's causing it is next. Dementia has over 70 different causes so it's important to see a physician who is trained in dementia and its causes. I don't know if anything you've described could even be called dementia or mental illness. Make a drs appointment for him and explain to the doc your concerns.

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JoAnn29 Oct 2020
I would have not excepted a diagnoses from a rehab. The doctor's affiliated are just GPs unless Dad had a neurological evaluation from a neurologist. And even then, the neurologist would have had to do some testing that can't be done in rehab.

We had another poster who felt dementia was the wrong diagnoses. She talked about him having problems in some areas but a wiz in others.

"He’s never been a tv watcher, so he barely turned his on, he’s not used to ordering food for a week off of a paper menu (so I do it), and he’s never been good at following directions."

The never been "good at directions hit me". Could your Dad be autistic? There are high functioning autistic people like Aspergers.

IMO, Dad needs a good physical and labs. A neurological work up. Then you can make better decisions concerning his care. And know that you have made the correct decisions.

Daughterof1930 Oct 2020
It does sound like your dad has had long term mental illness. No one here can say specifically what that might be, but you know it’s always been there. And now it seems those issues are being complicated by both physical health problems and the onset of dementia. The unfortunate reality is that often we’re left with the least rotten choice to make for our loved ones. When my mom was in an impossibly difficult situation our family placed her in a nursing home with heavy hearts. Though we knew there was no other choice, the feeling of wanting something better, or wanting to fix it never went away. Your dad, whether it’s mostly mental illness or mostly dementia, is getting the care that professionals have found will be most appropriate for him. Both issues may seem to wax and wane at times, but the dementia will march forward. Dementia is never settled, and happy is over for your dad, sorry to sound harsh, those are hard truths. You have an important role now, to be your dad’s advocate and cheerleader. Don’t attempt to make him happy, see that his care is good, discuss positive things with him, and practice self care. I wish you peace in such a hard time

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