My 84-yr-old cousin's dementia is getting worse

[TerryJ2]

I was hoping she had a Urinary Tract Infection (UTI), but the results came back normal. I didn't see the actual numbers, but I spoke with-a nurse a few min ago. She is going to fax the results to the dr to make sure.
(by the way, rant here: It took 10 days to get this done!!!! Long story. End of rant.)

So, P has been talking to herself in the bathroom, and also, insisting that she spoke on the phone to my grandmother, who has been dead for 30 yrs. They did not get along at all, and my grandmother's marriage to P's stepfather (Loooonnnng story, enough for a feature film) send my cousin over the edge. Judging from her medication records and letters from relatives that I have found (and P does not know I have) I think that P had at least two nervous breakdowns, and this person, K, is one of the catalysts. Anyway, you'd think they were best friends now, because P wants to write her a letter and get in touch, because K called her and didn't give her current address. (You don't really need a mailing address when you're channelling someone but P won't understand that ... )
This is about where my dad was 5 yrs ago. Except that instead of talking to dead ancestors, he was telling us about his adventures on other planets. Mars was fine, but he only stayed for a few min. and he can't remember whether he had an oxygen mask; Venus was a h*ll-hole, Pluto was way too far away and not worth the trip.
At least he was interesting and easy to get along with.
P likes to argue and get dramatic. Nothing new there, though.

I think it's hitting S, her caregiver, really hard. She wants to argue with-P and bring her back to reality. I told S that it's not going to work. Even P told me that they'd had a disagreement the other day, and what S doesn't understand, is that P will remember the disagreement, and the next one and the next, and eventually not want to be around S at all, even though right now she is totally dependent upon her.

So sad.

 

[hearts and roses]

That is really sad, Terry, I'm so sorry. My mother's dementia is moving along as well. She has become meaner and nasty and if someone tries to speak with her, just being friendly, she will tell them to F off. It's lovely to witness, let me tell you. Oy. Hugs.

 

[TerryJ2]

Oh, dear, I'm so sorry, Jo. It is so painful to watch.

 

[Marcie Mac]

SO's mom just turned 80, and she is having the same problem. Funny enough the doctor said it is Sundowners Syndrome. Apparently when they go to nursing homes or assisted care facilities, because they no longer (or hardly ever) go outside, it contributes to their confusion seeing the same ole,same ole every day.

My mother was apparently having long conversations with my father, and was miffed he kept ignoring her. They divorced in 1961 and she kept a burning hatred for the man ever since the papers were signed and did what she could to make his life miserable. So I can totally understand him ignoring her LOL

Marcie

 

[Hound dog]

Hmm. They actually might be talking with those who have crossed over. I'm sure docs wouldn't agree with me, but I've spent my entire life with the elderly........and until raising a family of my own, a lot of years in nursing homes as well. (mom had sitter issues and took us along, she worked and I went visiting lol ) Now I offer no opinion on the other planets deal........but the dead relatives, I've just always as long as I could remember just accepted they'd come to visit them. Makes sense in an odd way because a nursing home environment is a rather obvious last step in most cases.......and dementia removes most inhibitions about such things.

mother in law was sharp as a tack up until the last day she was able to be verbal (medications kept her sedated after that) and she often told father in law to step closer she couldn't hear him, and would ask us if we could see him too. She'd just smile and say he looked so very handsome. And I knew he'd come to wait with her, not to just visit, but to be there to take her hand when she crossed over. mother in law was not confused even at that point, lemme tell you.

And over the years, I've seen many many more of such things. Now I dunno with your aunt wanting her address and such, that might just be forgetting her mom had passed which would be just dementia.

It is hard to watch though.

((hugs))

 

[pasajes4]

Heartbreaking. My mother is starting to show signs of dementia. She is 89 and talking about seeing people who have passed away years ago.

 

[TerryJ2]

From what I know, it's typical of dementia, with-the exception that if the person is dying, they either see people who have already passed, or they talk about going on a trip. It is VERY typical. I have no idea how we humans "know" in that sense of the word, but when death is near, on some level, we have it figured out. It helps our minds to think of it as a passage, with familiar faces and shared histories, and takes away the fear and anxiety.
I'm sorry about your mom, Pasajes4. It truly is heartbreaking. I'm sure you know enough not to argue with her. Ask her questions. You may just learn something about your mother or other family members that you never knew before!
MarcieMac, yes, I completely agree that the same day-in-day-out thing can contribute. That's why we try to take my cousin out to eat, or shop, or go for rides as much as possible. It helps, but the inevitability is that the dementia still sets in.

 

[InsaneCdn]

Once dementia becomes severe, to whatever extent possible, it seems to work better if there is some way to play along with the situation rather than trying to set them right. Like Lisa, I could tell you a book of stories.

 

[DDD]

I understand that dementia runs in families. Fortunately we have not had the experience. Much to my alarm, however, my husband is becoming increasingly forgetful, is back smoking cigars (knowing full well that second hand smoke is a danger to my health, sigh) and TA DA slipping in a drink or two when I'm not home. Yikes!

As you guys know I am a good problem solver. This sequence of events does not have a solution. He's 80. He is a good caring man. I don't know if I'm dealing with very early dementia or if it is a manifestation of his fears knowing that I must be careful and not feeling up to the job of being a supportive spouse. Yikes. Only time will tell.

I admire you all for being patient, supportive and loving. by the way, I sure hope that a bunch of fun family and friends will escort me to the other side when the time comes. I'm a believer. DDD

 

[buddy]

Oh it is just so tough. We went through that last year with my grandma and it is sad to see, esp if they are mostly pretty with-it until the end. Take care of yourself Terry, you have so much on your plate.

 

[DammitJanet]

I think alzheimers and dementia have an opposite effect on people. Those who are really nice and pleasant people when they were normal end up demanding and rude. On the other hand, my mom was a horrible monster and she ended up being the nicest and calmest person on the planet. In fact the first symptom we had that something was going on with her was when she looked at me one day and told me "You know honey, you really were such a pleasure for me to have in my life. I am so lucky to have had you." Now this woman had never said anything like that to me in my life. I turned to look at her and smelled her breath to see if she had been hitting the sauce. This happened at the Thanksgiving before I got the call the following April. By that summer she didnt know who I was or that she had even had a baby ever. I would show her my baby pictures and she was adamant that she had never given birth. I would wonder if I didnt look so much like her...lol.

She had some very strange behaviors for sure but she was so much more laid back with dementia than when she had her mind about her. I could have never taken care of her if she had become physically disabled but kept her mind alert. She wouldnt have let me. We would have fought over everything constantly. As it was, I was so desperately hurt by the things she had done to me and the more I learned as I unpacked her belongings I just got more and more upset because she kept copies of things she had done that I didnt know about. It took me months before I could actually do the caregiving myself. Tony and the boys stepped up to the plate and did most of it for quite awhile. Oh I cooked her meals and washed her clothes but they watched her, fed her and made sure she was bathed and changed. I simply couldnt look at her because she had done some very awful things to me and I had to see the evidence up close and personal as soon as I took her in. I still havent gone through everything because I am afraid of what else I am going to find.

 

[TerryJ2]

Janet, you made me laugh!
Still, it's got such poignancy...

DDD, speaking of supportive families, husband and I got into a fight last night. Just before we went to bed (poor timing on my part) I said, "P told me today that her brother died six months ago." (He died 30 yrs ago.) husband said something like, "You have got to let go of that. I see crazy people all day and I just have to let it go. It's in the past."
I said, "I just saw her today! Fine. I won't tell you anything else about her until the day she dies."

He blew up and said that was mean, and I should apologize. I told him no, I will not, because he has no clue as to the connection between P and me, and him and his pts. NO comparison. He also said that the reason I had hired Visiting Angels and placed P in assisted living was so that I wouldn't have to deal with it. Huh? I did those things because they are supports that she needs. If I didn't want to deal with-her, I would have never moved her to VA, and I would have changed my ph #. He is so clueless.

I also told him that if he had simply said something like, "I'm sorry to hear that. I know it bothers you," it would have been enough. But not only was he not supportive, he made the whole thing about him and how *I'm* being mean to him.

He said it was ruining our relationship and we can't have it in our house with-the other issues with-difficult child.
Ooookay. I said that's why I said I won't tell you anything about her any more.
He explained that it was the way I said it and the definite, decisiveness that he was talking about.

We finally reached a semi-agreement before we went to sleep but I learned my lesson. 1) never make a statement about P or difficult child before bed; 2) do not expect husband to be supportive of anything regarding P (this is long-standing and I have not typed a lot about it here; he just tolerates stuff but is not overtly supportive).

It is so hard, because it really does bother me. At this point, I'm closest to her caregiver, and we text one another about issues, and then husband wants to know why I'm texting at night and talking to S when she's supposed to take over with-P and get her off my mind.

 

[Star*]

I'm sorry to hear this Terry. Sending hugs.

 

[DDD]

Terry, you have my sympathy. People just don't understand that you can be married for decades and circumstances come about that mess with your relationship. If you can't "talk it out" then you either "stifle" like Edith Bunker or you carry a burden that you shouldn't have to carry alone. Man.......life is too blankin' complicated. I understand.Hugs DDD

 

[witzend]

That is really hard for the caregiver, Terry. My good friend from home recently had to put her husband in a home with early onset dementia. He's only 59. Chuck owned his own seasonal business, and when he still had it together he knew it had to end. Then when they closed it down, and the next season came along, Chuck was so agitated. He couldn't figure out his phone, he couldn't figure out how to send an email, the most basic things frustrated him. He'd ask about tax filings and lines of credit... Beth always tried to explain to him why she didn't file a business return or why they didn't have a line of credit statement. I told her, "Beth, just tell him 'I put that in the mail yesterday, it should be back by the end of the week.' then offer him some ice cream or to watch a favorite film together." Every time, she'd see the wisdom in that, and every time she'd try to explain it to him again anyway. And every time she'd end up in tears because he was bullying her.

If your aunt wants to write a letter to someone who's dead, it's not going to harm anyone. If she needs help writing it - and I bet she will - her caretaker can help her. She could even put it in the mail for all it's worth. That person is dead. It will come back undeliverable, but the caretaker can get to the mailbox and your aunt never needs to know.

They get so agitated about past wrongs. My grandma was the same way, as was her sister. We'd just tell them, "Sure we can go see your (dead) brother Darrow, right after dinner." By the time dinner is over, she's forgotten because she hasn't been trying to convince us about it for the last 5 hours. If she mentions it again, "We're going tomorrow after you get your hair done, remember? You want to look pretty for him. It's time for ice cream before bed!" It puts them at ease.

I do hope that your aunt's doctor will check her medications. There may be something that she can take that will ease her anxiety. But you have to be careful with dementia patients. Some medications can make them much worse.

 

[TerryJ2]

Wow, witz, that's so young. And so sad.

Yes, P is already on Ativan and Namenda, and I have a call in to both the regular dr and the neuropsychologist, to see if they can get together and come up with-something different. Sigh. The chances of that happening are very slim. So I will have to talk to each one separately, and then work it all out. But the time it gets worked out, *I'll* need Ativan and Namenda!