Dealing with relatives with dementia

[Aussie Willy]

There is a discussion going about Trump and dementia in the Political forum. However not sure if there is another discussion about it here.

I know there are probably lots of people here who have had to deal with a relative with dementia. My father got diagnosed in March this year so I have to deal with him from afar because he is in another state in Australia and I can't leave mine. Still try to talk to him a couple of times a week by phone.

However it probably became a problem after his wife passed away last year in October. I got his power of attorney straight away because he had no clue about their finances (she did it all). He kind of went along for months until his sold his house. The day of settlement he had a mini stroke and went to hospital. When there he went through delirium and hallucinations. They had to put him in ICU because he got so aggressive. Immediately flew up to see him for a week. He was in hospital for about 6 weeks after which we found him nursing home respite care and he now has a permanent placement.

Thankfully he still knows who I am. I also have step brothers who live nearby to him who go and visit him so at least there are family members to keep watch over him. But you wonder how long it is going to take for him to get to a place where he will need full on care. Also he hates being in the nursing home. And being honest you know he just wants to die. He never wanted to go into a home so he is in the last place he wants to be. But he never planned for anything in his life, gambled a lot of money away on pokie machines and horses, had a shocking diet and took very little responsibility for his future. So it is frustrating and you know his situation is kind of his own doing. I suppose the only thing I can do is make sure I don't make the same mistake he did.

Please share your stories. It would be a good to have a place where we can talk about this.

 

[Prancer]

First of all, I am so sorry you are going through this, and sorry that your dad is, too, as it's very stressful for all concerned.

Both of my in-laws had dementia. My MIL lived with it for several years; my FIL was diagnosed about a week before she died and lived for another five years or so. My husband had POA for both medical and financial for both all those years.

Some thing to know--there are more than 70 types of dementia and they are all a little different, so what happens with one person will not necessarily happen with another. Most people (including doctors) use Alzheimers as kind of a generic, catchall term, but it's just one of many. Some people suffer from more than one kind at the same time.

My FIL always knew who we were, right up until the end. My MIL, not so much, although I don't think she ever completely stopped recognizing us; sometimes it would take her a while, but she always got there if we hung around enough. My friend's mother, however, stopped recognizing my friend years before she passed away, but she had early-onset dementia and lived a very long time with it. Neither of my in-laws were ever bedridden until the very end. In fact, my MIL was dancing around singing in French (her first language) in the activity room in her unit when she just kind of keeled over and died. My FIL had trouble getting around, but he still got himself to meals every day until right at the end. FIL hallucinated quite a bit the last couple of years and couldn't remember what he did five minutes ago, but he remembered the past pretty well and still had some grasp of reality to the end; MIL never hallucinated but her memories of the past were and she had little awareness of reality, past or present, for quite some time. FIL was always a very kind man and he remained so his entire life; MIL was rather, um, not so kind, but actually got nicer with dementia. A friend of mine is going through this with his wife now, and her dementia is making her mean as a snake.

In short, it's hard to predict what will happen with your dad.

Things that helped a lot:

Memory care. Both did much better in a memory care program than in a regular assisted living program (not sure what is available in AU).

Not correcting them when they got names or events or memories wrong. It's hard to not do this, but when you correct them, you're basically telling them that their perceptions of reality are not to be trusted--and while that's true (and they know it to some degree), it's absolutely terrifying to be told that something you are sure is true isn't, especially when you suspect that it isn't, even though it seems sure that it is.

Reducing fear. Which is often related to the above. It's really common for people with dementia to think that people are stealing from them, for example; instead of telling them no one is stealing from them, you tell them things like you will speak to someone about this immediately and have it investigated. This will calm them down and then they will forget about it all for a while. Distraction and redirection are also good for dealing with fears. My FIL could always be distracted by food ("Husband will go talk to the nurse about that and get to the bottom of it, but in the meantime, what are you planning to have for lunch?"). MIL liked to talk about the past (which often wasn't the past at all), so you could usually distract her by asking if she remembered something like living in Washington DC. Or you could ask her when she last saw her grandchildren and off she would go, even if she hadn't seen them in months.

I know there are several posters on the board who have been and are still going through this, so I hope you find a lot of support here. All the best to you. This is a hard thing to go through.

 

[once_upon]

I'm sorry. The dementia road is so hard. Mom had alzheimers and died 2 years ago. Like Prancer said it affects people differently.

My mom had my dad, he moved with her to assisted living which I think gave her a few more months of living. When she could no longer be cared for by dad and the staff at assisted living we moved her to memory care. I think if we had moved her earlier she might have adjusted. But as it was she died within 6 weeks of being without dad.

Mom wandered. Even with locked outer doors at night, the staff and dad would find her in the hallway from their apartment trying to leave. Some days she would be naked. She was unsteady, fell a lot and didnt use the walker that PT wanted her to use.

Towards the end I was Connie - none of us knew who Connie was, several times i was her sister. When i would say no mom it's me, she would get angry and say I KNOW THAT. Then she would have really lucid periods, and although it would take me a little bit to figure out what she was talking about, we carried on conversation very sad ones, but lucid. Like the time she told me she knew what was happening she just couldnt change it (the disease).

She had been diagnosed about 10 years before they moved to assisted living. At least that's when I think her doctor told her because she started all the preplanning for the eventuality of not being able to make decisions. Strange stuff - like telling she was going to be cremated when we were in a theater. Giving me all her picture albums. Spent months calling me at least three times a week doing funeral planning. Like I said in the PI thread, some of the small physical things like using two hands to steady drinking glasses, unsteady walking I never put together until much later.

Like Prancer said. Redirecting when someone is confused/frustrated works. When mom would get agitated I would bring my phone out and show her pictures of my grandchildren. Towards the end, my grandsons would be my sons in her mind. It got too frustrating to tell her no, they were my grandchildren so I let it go.

 

[Simone411]

Towards the end I was Connie - none of us knew who Connie was, several times i was her sister. When i would say no mom it's me, she would get angry and say I KNOW THAT. Then she would have really lucid periods, and although it would take me a little bit to figure out what she was talking about, we carried on conversation very sad ones, but lucid. Like the time she told me she knew what was happening she just couldnt change it (the disease).

This reminds me of what happened with Sue (my stepmom). About a month before she passed away, she woke up one morning, got her a cup of coffee, and then looked around for my dad. She told my stepsister (Tonya) that Dad must have went to Dairy Queen to have a cup of coffee with his friends.

Way before my dad passed away in 2012, he would sometimes go to Dairy Queen where a lot of his friends went. He and his friends met at Dairy Queen usually on Mondays.

It surprised Tonya, and she didn't know what to say at first. Then Sue suddenly gained her senses realizing that Dad was no longer around. She started crying and told Tonya that she knew what was happening but didn't have any control over it.

@Aussie Willy, I'm so sorry you're having to go through this also. I'm keeping you in my thoughts and prayers, and also praying you have the strength to get through this.

 

[annie720]

I have a close family member with Lewy body dementia (LBD). It started several years ago with confusion regarding appointments and dates and a once meticulous home becoming very disorganized, progressed to hallucinations, acting out dreams, and occasional aggression, from someone who had never before shown any aggression. We first noticed the symptoms when he was in his mid-60's, but looking back, we can see there were earlier signs, the kind of thing where you think you noticed something but would then shrug it off as something you must have imagined, because there was no known family history of memory issues. He's now in a memory care facility where he seems to be doing fairly well. Declining cognitively, but in good shape physically. LBD can be very difficult to diagnose. Many changes of doctors, all of whom had differing opinions. LBD is the type of dementia that Robin Williams had.

And as a first-line family member, you can't help but wonder if the same thing will happen to you. It's scary that it can happen at such a relatively young age in an otherwise healthy person.

{{{hugs}}} to everyone dealing with these issues.

 

[Simone411]

@annie720, thank you so much for posting about your family member. I read some articles about LBD after discovering that Robin Williams had it.

I've also learned that a person can have Alzheimer's and dementia for several years, and then in some patients like my stepmom, it can progress really fast. I'm thankful in a way that the Alzheimer's did progress really fast, and that my stepmom didn't have to suffer very long. It's still very hard because at the same time, my family and I was praying for a miracle and that the Alzheimer's would just go away.

I pray that someday soon there will be a cure for it.

 

[quartz]

When my mom was about 80-81, I started to realize that her normal weird behaviour was becoming abnormal and probably the beginnings of dementia. But she was still living in her own apartment, paying her bills, going grocery shopping, driving about town, getting her hair done, going to church, and volunteering with her beloved Animal Aide. I did manage to get her in to her doctor for a memory test which she passed, but it wasn’t great, and so it was advised to keep a closer eye on her. For another year or so, she needed a little more help, some prompting, and was more forgetful, but was still managing to mostly look after herself. Then she went to visit our family in Iowa, a trip she had done yearly for several years, and when there, experienced several very bizarre episodes. When she got home I took her back to the doctor, she failed the memory test, and I was advised to get some home-care put into place, and to start thinking about LTC within the next couple of years.

She rebounded a bit, and the next few months were a bit of a yo-yo, she had really good days, but I still got home-care put into place. Then she got a UTI, ended up in the hospital because she was hallucinating, and went downhill mentally, shockingly fast. It had been a slow steady decline for a few years, and then all of a sudden it was like she went over a cliff. The hospital social worker helped me get her on a waiting list for a nursing home, expected wait was at least a year. I was freaking out because it was quite apparent that home-care was not going to be enough and I didn’t know what I was going to do with her while waiting a year for a LTC bed. Then, only three days later, there was a LTC spot for her, and she went straight there.

At the age of 83, in only two weeks time, she went from living on her own, to hospital, to nursing home. She is now 92 and has zero quality of life, merely existing, totally helpless, and has shown no signs of being cognitively aware of anything for the last 3 years.
If she knew what the last 8 years of her life were going to be, she would have chosen to die instead. I will be relieved when she passes and her suffering is over.

(((Hugs))) to all who have to watch their loved ones go through this.

 

[overedge]

My dad had vascular dementia (caused by small strokes) when he passed away. The gerontologist who saw him explained to us that this kind of dementia has particular challenges, because the brain is trying to repair the damage from the strokes. So some days are really good and others less so - it's not a steady decline as with some other forms of dementia.

He was living on his own and was very stubborn about not going into some sort of care. But he was getting less and less capable of taking care of himself, despite what he claimed. He also had glaucoma and his vision was becoming a problem. He was in denial about that too. We saw a lot of what @Prancer has described, with the fear that someone was stealing things, fear that doctors, home assessors, etc. were looking for reasons to put him "in a home", and so on. It took us the better part of a year to persuade him to have a cleaner come in every two weeks, but oddly, once it started he just loved being fussed over by the cleaners.

Our local public health agency has a special unit for adults with mental health issues, and the RN assigned to his case was fantastic. We were referred to her by a triage team for older adults that works out of our hospital's emergency department. It took Dad having a fall for that team to become involved and to refer us to the public health agency, but they were great and gave us a lot of really practical assistance.

I think one of the hardest things, and something we are still struggling with even now that he's passed, was letting him choose his own path even though he had a disease that affected his cognition and decision-making abilities. @Aussie Willy I hear what you are saying about frustration, and about bad habits in the past leading to the current situation. My dad made some really bad choices in his life, and in retrospect we now are wondering whether maybe he had earlier mental health issues that weren't diagnosed, because they weren't understood or because people didn't talk about such things in those times.

For us (primarily Mr. Overedge, my brother, and myself) we kept thinking of the in-flight oxygen principle - take care of yourself first so that you are able to take care of others. Sometimes this meant setting boundaries as to how we would deal with some kinds of behaviour. For example, Dad was really freaked out by appointments and would get really forgetful as a result, and e.g. would phone multiple times asking when we were coming to pick him up. After the third or fourth phone call in a row, we would let the calls go to voice mail, and then call him back a few hours later (unless the calls were really panicky). By then he had usually calmed down and would understand what we told him, and the repeated calls would stop.

Sometimes doing things like this was really scary. We would always be wondering, what if he needs help right now and we're ignoring him? But it was really important for our own mental health and our ability to deal with him that we kept our own needs in mind as well as his. Sometimes it felt selfish, but when I think about it now, I honestly don't feel that there was ever a situation where we should have stepped in but we didn't. As others have said, you have to figure it out as you go along, but you have to keep yourself as healthy and as sane as possible as well.

 

[missing]

My father was declining at the time of his death (82). My mother lived to be 102, and the last 8 or so years she suffered from dementia. It was never truly awful. She always knew who she was, who we were, where she was, etc. It was more like a depression. She ate less and less, she was increasingly unhappy, she lost interest in things she loved (like watching skating and tennis). She shrank, both physically and emotionally.

Hallucinations were invariably byproducts of UTIs. They ranged from distressing to entertaining to positively pleasant. The one time I remember her truly being upset she "knew" the hospital she was in was going to be invaded, and she urged me to leave before the invaders came to kill everyone.

My brother handled it perfectly. He called my mother and said he'd spoken to a friend of his in the FBI and the FBI knew about the invaders and had already installed undercover officers to protect everyone and my mother shouldn't worry.

She immediately stopped worrying and gave no thought to the fact my brother knew nobody in the FBI.

I always knew how easy I had things but I have a natural gift for self-pity and can feel sorry for myself and resentful with very little provocation. So I taught myself one thing and it's a lesson I've passed along to many of my friends as they've dealt with aging parents (my parents were in their late 30s when I was born, so I got to the aging parent part of life earlier than most of my friends did).

The lesson goes as follows: It is perfectly all right to think whatever you think. My thoughts ranged from I wish she would die to I wish I would die. Thoughts aren't deeds. Anger, resentment, self-pity, exhaustion-they're all part of reality and any thoughts you have are valid and should never be guilt provoking.

And don't underestimate the exhaustion. My mother spent her last 15 years in an excellent facility, first in an independent living apartment and then in the nursing home. People cared for her and about her, and there were a ton of issues I didn't have to worry about.

But I still felt as though I were living in permanent orange alert zone. I never knew when there'd be a call saying my mother had lost her hearing aid or had set the microwave on fire yet again or needed to go to the emergency room and I should meet her there.

My mother has been dead now for over 5 years, and I go on occasion to the cemetery where she and my father are buried. I tell them that things in the U.S. have been so awful for the past 4 years, they should consider themselves very lucky to be dead.

So far, neither one has contradicted me about that.

 

[Aussie Willy]

Thank you for all your stories. It does help to read what others have gone through. Really appreciate it.

My mother went through what I am dealing with at the moment with her own mother so even though my parents separated over 40 years ago, she has been a really good support. My sisters who have had nothing to do with my father (the relationship I have with them is another story) I haven't told them. My mother mentioned it to one of my sisters what is happening but got no response. They can find out when he passes away.

I have seen the hallucinations. Back in December he had a bowel infection and was going through delirium then. I just so happened to be visiting him and he started having pains which I called the ambulance for and was admitted to hospital. He had a court case for driving an unregistered vehicle so I had gone up for that because I knew he would probably forget about it. Thankfully it got dismissed.

Then in February when he had the mini stroke, he had full on hallucinations. He was concreting the floor of the hospital and asking me to get a trowel for him. I just went along with it. But things escalated by him trying to go into other people's rooms in the ICU. It was pretty scary because he got cornered and very upset. But like @quartz said. It was like he jumped off a cliff and never went back to what he was.

What has been worse is all this has happened during the virus. And unfortunately I have not been able to go and visit him. Also my step brothers could only visit him for 15 minutes at a time. Thankfully one of the step brothers has been able to take him out fishing recently so that is good. As soon as I can I will be over to the mainland and go and see him.

In Tasmania they are doing a long term study about dementia which I am involved with. One of the things that I have learnt is dementia can be determined by early life and education. Which makes sense. Dad probably left school when he was 13-14 (got expelled) and always did manual work.

 

[AxelAnnie]

Oh so sorry Aussie. This is not a fun road to travel. My husband (before he was my X) was diagnosed with Dementia and Parkinsons. He was such a joy. He fought to the end (of our marriage) saying no doctors diagnosed him with anything like that. I would pull out the medical reports. And around we would go.
Had to hide the car keys, and the car (he also thought he should be able to drive).
Eventually we were able to have him move to a fabulous facility across the street from the beach in Santa Monica.
That worked for a while, until he decided that some dr. had told him he did not have dementia. (They did not)
The most fun was that he became angry and aggressive with me (nice thank you).

One of the things he is is MSA - multi-system atrophy. Which means, literally, he has a hole in his brain. The life expectancy is predicted at 5 years max. And, this was 15 years ago. He lives near one of his sons. One day, he packed a suitcase to strike out for greener pastures. Steve caught up with him, his father called the police and told them that Steve was trying to kidnap him.

I don't wish this journey on anyone.