Ship of Fools: Dementia in friends and relations

Thread: Dementia in friends and relations Board: Oblivion / Ship of Fools.

To visit this thread, use this URL:
http://forum.ship-of-fools.com/cgi-bin/ultimatebb.cgi?ubb=get_topic;f=70;t=030588

Posted by Lothlorien (# 4927) on :

There has been quite a bit of discussion on dementia on the thread for aging parents. We hosts have decided on a thread specifically for dementia as the thread was heading off into tangents about the condition with friends and families. We will keep also to the problems aging parents can have because of age.

The parents' thread can return to discussion of more than just dementias, but to other problems to which age can contribute.

A group of six of us is currently dealing with problems of both dementia and Alzheimers in another long time friend of each of us. Sorry, I do not currently know the specific dementia. Two of us hold enduring guardianship and power of attorney for him. He has no family, was adopted as a toddler and has never married.

He has held high teaching positions and was active in St John Ambulance, both in first aid and positions associated with this and then as a chaplain when they were set up. He is musical, plays several instruments well ( or well once). He has now lost the ability to transpose so no longer plays in small groups or at studies. He always had the newest thing in technology, recording, computers etc.

Paranoia is a symptom of many dementias and also of developing Alzheimers. He is convinced we are stealing from him when his place which was filthy was cleaned and tidied. We have stolen his silver, taken a French polished cabinet and much more.

He agrees that his friends would never do such things, then the next day we start all over again.

Lots more I could write but this is enough. Feel free to join the thread with examples of problems or discussion of ways of dealing.

As with all such threads on board, please remember no medical advice or theories.

Thanks.

[ 06. September 2016, 02:47: Message edited by: Lothlorien ]

Posted by Ariel (# 58) on :

Almost everyone I’ve spoken to in the past two years turns out to have had a relative with the condition. It’s life-changing for everybody involved, and heartbreaking to watch someone slide into becoming the opposite of the person they used to be (not that this happens to everybody). This isn’t made any easier by their flashes of lucidity when they’re pretty much their old self for a few brief minutes, and you have to remind yourself: this isn’t remission, this is not a sign they’re getting better, it won’t last. The next minute it shifts back again, and you find you’re looking at a stranger in a familiar body, saying bizarre things in a familiar voice. Each person with dementia is different but the personality changes can be really hard to cope with. You think you’re getting to know this new person, but they keep changing.

It’s particularly hard, and cruel, on elderly couples when one elderly person who may have health problems of their own is forced into the role of carer for their spouse. A friend’s husband has gone from being a kindly family man, practical, outgoing and generous to violent and incontinent, and no longer able to distinguish reality from fantasy (or recognize the toilet).

There can be lighter moments in looking after people with dementia, but by and large this disease belongs in Hell and should never be let out.

[ 06. September 2016, 07:59: Message edited by: Ariel ]

Posted by Lothlorien (# 4927) on :

Ariel, your first paragraph rings true for so many. Fortunately my dad did not become violet but therewere distinct changes inhis personality. My friend, recently diagnosed has those lucid moments but also many times where I cannot recognise the prejudices expressed by him ot the difficulties he has in ordinary living. I also see him when lucid, deperately trying to have some control over his life.

We have put his medications into Webster packs. Often taken on wrong day but at least taken as he was missing vital tablets before. No sense of time at all. He realises he will have to move and not live by himself so tries to cook but can go all day with a slice of toast being all that is eaten. My DIL takes him shopping. His licence was cancelled on diagnosis by gerontologist. He will not use a list nor accept her suggestions so buys things he does not need which we have to throw out down the track.

When we first started care, we found eggs over a year old in his fridge. He does not believe us. He believes he always took meds both through knowledge and inclination and St John training. We found a veritable pharmacy in his cupboard from which he had been self medicating. Everything was past date. Then a week later we found another stash. That almost broke hisheart when we got rid of all that. He was taking tablets ,eg Stemetil for nausea, when he was constipated. It made it worse.

Posted by Boogie (# 13538) on :

Mum had it for six years.

For three of them my family took it in turns to live with her in her spare bedroom. She forgot we were there and when we came in to her room or the lounge, wherever she was, she thought we were visiting, bless her.

She'd say things like " I've made the potato pie for tea". She hadn't, she was no longer capable.

After that we had her at my brother's farm and still took it in turns to be there while my brother took breaks on his boat. They were the hardest two years of my life. All was so much better for us all, including Mum, when we eventually gave in and she went to a nursing home. Looking a back, we should have done it much earlier. We visited every day, but the burden of feeding and keeping her clean was no longer ours.

I tried, whenever possible to live on the same planet as her and agree with everything she said. It didn't matter it was nonsense, she'd forgotten what she'd said a moment later.

[Frown]

Posted by Sarasa (# 12271) on :

My mother and a friend of hers were discussing people they knew with dementia last week, and my mum mentioned the hardest thing being that the person wasn't the person you thought you knew before the illness struck. My immediate thought was that that is what i think about my mum, though I'm not at all sure where the line between problems associated with old age and dementia is.
Mum would pass tests of concrete knowledge, like what year it is with ease, but other things worry me. Take the fact that she is in love with a tour rep she met on holiday four years ago. Any subject you care to name can be brought round to what he thought, did, and said and until we talked her out of it she was going on a holiday this year on the off chance she might meet him again. He was getting on for sixty years younger than her, married with a young family and I'm sure a lovely person who was kind to her, but romance I hope not. She's always had a romantic streak but I'm not sure how much she sees this as a total fantasy that's pleasant to day dream about and how much she thinks she could have actually had a relationship with him. .

Posted by Schroedinger's cat (# 64) on :

Apologies for taking the Dementia track - but it is the first real problem I have had with my ageing parent (my other parent didn't age so much [Frown]

).

I will be talking to my brother this evening about her.

Posted by Ferijen (# 4719) on :

Visited Grandmother in law last week. See her only once or twice a year, we live the other end of the country.

Ten years ago she was put into a home with a secure floor for dementia patients. When she was transferred living in her own world and becoming nasty with it and not able to cope.

I guess its about ?seven years since she last uttered any word whatsoever (never mind anything lucid. I think my last conversation with her was on a Christmas day when, out of nowhere, a christmas carol triggered a comment about 'going on the mothers union trip'). About eighteen months ago it looked like she was nearing the end, with an inability to swallow solid food, but she hung on again. recently has gone back to just able to swallow liquids, but she's having just enough nutrition to survive. But there is nothing there... a very small body, eyes which open but don't see, ears which don't appear to hear, a mouth which says nothing.

Bastard, bastard disease.

Posted by Brenda Clough (# 18061) on :

My brother gave me a report over the weekend on my aunt, who lives with her daughter my cousin. She has a particularly cruel dementia -- it has stolen almost her entire vocabulary. (I am horrified to even know such a thing is possible; I can imagine nothing more fearful.) She has only a half-dozen words now, which my cousin can interpret like Spock doing a mind-meld. One of my aunt's few remaining words is 'candy,' and she uses this for everything. She will say 'candy?' and my cousin replies, "No, dinner isn't ready yet." Another 'candy?' and my cousin knows to reply, "Tomorrow we'll go to the store." It is amazing, and frightening.

Posted by Piglet (# 11803) on :

Ferijen, your granny-in-law's situation sounds very similar to my mum's, except for the "nasty" bit - AFAIK Mum never uttered any objections to the geriatric ward in which she spent the last ten years of her life.

When she went in, she was still capable of holding a conversation, joining in doing cryptic crossword puzzles (which she had loved, and been good at) and cracking jokes, but it really didn't take very long for her to become "institutionalised" (horrible word). Not by any means the fault of the staff there - they were utterly wonderful, but obviously could only devote a limited amount of time to each patient, and visiting time was more-or-less limited to an hour in the afternoon and one in the evening, which Dad followed with almost religious zeal, even when he knew he'd get very little response from her.

18 months later, we moved to Canada, and although we tried several times to explain that we were moving, I don't think she ever really understood.

For the last few years of her life, Dad regarded it as a little victory if she opened her eyes and looked at him; she was long past being able to communicate verbally.

Ariel's right - whatever it is that causes dementia, there's a particularly hot circle of Hell reserved for it.

Posted by Banner Lady (# 10505) on :

One recent development is "The Butterfly Program" - it has been used successfully in the UK with dementia patients and has just come to Australia. I know this because it is being trialled in the Aged Care Facility where my mother lives. One of the aims of the program is to provide safe and supportive contact times with patients. The anger and the violence can stem from being treated as an object or a naughty child rather than accorded the dignity of personhood. Mind you, I suspect most of us would become angry at losing so much control.

A common grief amongst dementia sufferers is that no-one wants to visit them any more, and so the program tries to offer ways of being community too. I am watching the outcome with interest.

Posted by Lothlorien (# 4927) on :

I will look this up, BL and let friends know about it too. We are garnering info from our experiences and from other sources too and storing it up in case we think it may help.. Thanks for the idea.

At the moment we are dealing with a stolen car. Not really, he had his licence cancelled by gerontologist when she received diagnosis of both alzheimers and dementia. We took the car which he would have driven anyway. DIL runs him around, takes him to medical appointments, shopping etc. He does not realise it is his car, except occasionally and is upset we do not let police know it is stolen.

He refused to stop driving before this. He had driven for years and was very skilled. For a year I have made excuses not to be driven by him. At my sons' request. He dislodged passenger side mirror which was difficult to fix. He told me a tree fell on it.. When I queried this he said he might have driven into a tree. More likely but perhaps it was something else. He had a flat tire and rang one of the group as he did not know what to do. This fellow lives in Blue Mountains, miles away, so managed to get the street and called NRMA.

When DIL took the car, she found he had been driving on another flat tire which he knew nothing of and had ruinned both tire and wheel.

Posted by Lyda*Rose (# 4544) on :

Since I moved into my dad's house, I am living across the street from my old neighbors. The husband has dementia, but amazingly it has actually improved his personality- so far. He used to be rather difficult and bossy to his family. Now he smiles a lot and is quite friendly. His short term memory is crap, but he watches the news and takes evening walks up and down our quiet street. I'll sometimes come out and chat with him. I'm not sure if he remembers exactly who I am, but we talk for a few minutes about the weather and the seasons. I know his wife is worried about what the future will bring, but her son gives them a lot of support. And she knows us neighbors are ready to lend a hand if needed.

Posted by Lothlorien (# 4927) on :

I am sure your support, even just having a chat is valued and worth much more than you may imagine.

Posted by Lyda*Rose (# 4544) on :

At this point he seems somewhat aware of his loss of memory and depends on his wife to keep up the daily routines, and he patiently asks for updates on stuff he can't remember. And she patiently answers many times a day. She is a very kind person.

I'm happy to talk to him. We all really have only the now. That's much more stark when you have dementia. But minutes of talking to an old friend on a nice afternoon is not wasted just because he won't remember ten minutes later.

Posted by Brenda Clough (# 18061) on :

My uncle lived in New York City, and so he gave his son the family car. The son moved to Maryland, and when my uncle came down to visit he could not resist getting behind the wheel again. Alas, he had completely lost his sense of geography and direction, and immediately got lost among the strange streets.
His granddaughter, an intelligent child, was the only one at home. When her father my cousin came home she immediately cried, "Pop-pop drove away and hasn't come back! We have to save him!" And my cousin leaped into the other car and, luckily, found the old gentleman pulled over three streets away.
After that they hid all the car keys.

Posted by sabine (# 3861) on :

My father had Lewy Body Dementia and he suffered greatly with the worst of the symptoms (especially the disturbing hallucinations--e.g., the house was ablaze, etc. ).

When he died, we all considered it a blessing for him.

It is not something to handle on your own, IMO.

sabine

Posted by Ariel (# 58) on :

My mother had hallucinations from the start. I did wonder whether she had Lewy Body but we were never able to get her to consent to a brain scan so I never knew what version she had. They often took the form of sinister men. Sometimes they just whispered under her window, sometimes they pushed her around or beat her up.

At times like this you feel completely helpless - you can't protect someone from the power of their own mind. They never came while I was there, but it wasn't possible to be there all the time.

[ 07. September 2016, 19:51: Message edited by: Ariel ]

Posted by St. Gwladys (# 14504) on :

Has anyone made fiddle blankets or muffs? It seems cto be something quite recent in the care of dementia patients - basically like a child's activity mat with things for the person to "twiddle" or otherwise fiddle with. Our craft group is hoping to make some, I'm trying to crochet a "fiddle muff".
There has been a big push in our area regarding dementia awareness, and the staff at our church hall are now "dementia champions" and are going to be offering training to our congregation - unfortunately one of our members is in the early stages.
Regarding the Butterfly program - I heard about this at a conference on dementia that I attended from work. One thing that stood out was that staff at Butterfly homes wear nightclothes over their clothes at night, so that if a resident wanders, they are reassured it is night and are more likely to go back to bed. Logical, really.

Posted by Lothlorien (# 4927) on :

St Gwladys, I am still searching for what I saw a few days ago on these. If I ever find it, I will send you the link.

I passed on the link on Butterfly program to my friends in the group seeking to care for a friend in early stages.. They were thankful for it.

He also has had hallucinations, doing craft with his pastor, speaking to his parents, long dead, and more. Sometimes the hallucinations seem to be how his brain makes sense, (or not) of changes in his life. He went for a walk the other day and told me that two formerly corner shops in a street near him had both suddenly become barbers' premises. They are residences.

He is developing a paranoia which is typical, Lots of things raise this now but he was convinced he was being stalked to have his car stolen, that "things" never specified, were being taken from his house, that he would be kidnapped and put in a home if he visited a certain old friend and more.

Posted by St. Gwladys (# 14504) on :

I bought a pile of bits and pieces to include on my muff - "jingle" bells, feather boa trim, pop Pom trim, and my order of lurex and "fur" yarn arrived. I realised I had been just playing with yarn and stitches - I'm now thinking that it could be my friend in church who ends up using one, which is quite an incentive to do a good job.

UBB.classic^TM 6.5.0