Dementia - also a bastard

[Kevin S]

Sadly there's always a reason for starting a thread like this.

[Redacted]

Generally, it's a terrifying thing. Not only do you know that things are only going to get worse, the lifespan from diagnosis really isn't all that long. Whilst I have some hope that there is some other explanation, there are quite a lot of signs (including a serious head trauma from a cycling accident - his helmet saved his life - in his forties) that are making us mentally prepare for the worst.

I may be back to rant into the ether at some other point.

[Wouter D]

Sorry that your family is in this situation, Kevin. It's a bastard alright.

My grandfather lived with it for about* two decades. The doctors that treated him were amazed at the slowness of the (still, sadly, irreversible and inevitable) progression of his disease. Things that probably helped include:
- music. He played the organ and sang in a choir. The mental gymnastics required for creating music keep the brain limber;
- a very active social life. My grandparents knew everyone in the village, and my grandfather used to craft all kinds of stuff for all kinds of people and taxi the elderly around in his car;
- loads of family interaction. By the time my granddad passed away, they had 25 grandchildren and 26 great-grandchildren. In his final years, when his disease had progressed such that he was rather a shell of a man, you could still see him perk up and return mentally to the land of the living when the youngest kids would come to visit.

We could be all wrong about this. Dementia is not understood well enough to conclusively connect cause and effect, so for all we know it might as well have been the humongous dairy intake or the living below sea level that slowed down the disease. We can only guess. But my guess is that having a grandchild on the way could be a blessing in more than one way.

All the best to you and your family in dealing with this difficult situation.

*it's hard to pinpoint the exact start, of course, but this is the time span between formal diagnosis and death.

[Nocturnal Submission]

Have you contacted any of the dementia charities, Kev? They might be able to provide some useful advice as regards next steps.

[Hot Pepsi]

Sorry to hear about this. I know from my family’s experience that this is especially hard to handle because the diagnoses are often unclear and the person with the ailment is not, or cannot be, cooperative with the necessary interventions.

[gjw100]

I had a similar experience with my mother. My brothers and I, as well as our wives, had noted some odd behaviours but it wasn't until we all started comparing notes as it were, that we realised something more serious was going on. I wrote to her GP outlining our concerns and that was sufficient to get the ball rolling. Its important to get social services involved as soon as possible as that's your best route for practical assistance and once you are on their radar it saves time when (and it will almost certainly be when) things deteriorate to the point where home help and respite care are required as well as, eventually, a care home placement.
My mother declined over about three years until her eventual death (she had Parkinsons as well) and her last 18 months were spent in care. My sympathies to you and your family - it's a fucking horrible thing to go through.

[Patrick Thistle]

My dad was always terrified of getting dementia, having seen his dad succumb to it. One thing about my dad's sudden death on March was at least he avoided dementia. It would have been awful for him to know he had it. (Until the point he didn't)

The cartoonist Tony Husband wrote a book about his experience caring for his Dad. It's very moving and one of thd most human things I've seen about it.

The Alzheimers Society advise on all types of dementia. I had a friend working for them for a while. Worth getting in touch with them.

[Sits]

Best wishes Kev, it is indeed a bastard.

[willie1foot]

Nothing I can say that hasn't been said above. Best wishes and I hope you find help for your Dad and support for your Mum soon.

[Third rate Leszno]

Kev - about 7 years ago I could've started a thread just like this about my FiL, but Mrs TrL is quite a private person and it wasn't really my story to tell. Everyone's experience of dementia or Alzheimer's is different, of course, but some of the things you've said are identical to what we experienced - the difference being that my FiL had been diagnosed two or three years previously and had already been on pills to slow down the onset during that time. Try to get him to a doctors as soon as you can - it's not the work of a moment to get meds that work, especially if he has other ailments (my FiL had a heart condition so some anti-Alzheimer's meds worked against his heart drugs) - but anything you can do to slow things down and keep as much of him intact for just a bit longer will feel worthwhile in the end.

I could say more but it's not going to be very cheery, so all the very best to you and Mrs Kev - and please do come back on here and rant whenever you need to.

[Balderdasha]

My grandmother had Alzheimer's for most of my life. She was only diagnosed when I was about 8, but it was obvious long before then. My grandfather had to empty her handbag once a week and return all the things she'd pocketed, forks from restaurants, prayer books from church, pieces of food wrapped up in napkins (those got binned, obviously).

My grandparents regularly looked after us before the diagnosis, which was not a great idea. My sister protected me from the worst of it. She'd make sure I stayed upstairs reading or playing with toys. My grandfather would fall asleep on the sofa and then my grandmother would spend hours berating my sister, lecturing her about how all men were bastards who were only after one thing (and she described that thing very graphically).

My grandfather cared for my grandmother for many years after the diagnosis. He was very proud that he kept her out of a care home for as long as he did. He would make sure she was dressed immaculately and had her hair set every week. It was his way of paying her back for everything she'd done during their long life together (they met at church age 14).

For me, it shaped my ideas about life and death and personality and religion and the afterlife. I watched her die very slowly over the course of several years. By the end she couldn't speak or recognise anyone. She very obviously wasn't the same person any more. So, I wondered, which version of her would go to a theoretical heaven? There is no fixed version of self. Your self as a child is very different from you as a teenager or you as a young adult or a parent or an elderly person. The various versions of yourself probably wouldn't even like each other. So how could anyone pick one version of yourself to live forever? My experience with my grandmother pushed me towards atheism. No compassionate God would invent something like that, that struck at random regardless of the life you've lived.

My aunt (my grandmother's second daughter) has dementia now. She can still contribute to conversation at the moment, but I doubt she'll be able to for long. It's a brutal disease. My uncle is doing a stellar job. He possibly has Asperger's so he approaches everything by reading as many scientific papers about it as possible. So he's been taking her to memory cafes and feeding her omega 3 oil and doing anything else that science suggests might slow the decline. He's a good man doing a very difficult job.

My thoughts are with anyone else who's experiencing this with their family members. It really sucks. There's not much else to say.

[Amor de Cosmos]

My biggest fear is dementia. My mother and her three sisters all suffered. As mentioned in threads passim my sister and I did our best to help my Dad through the latter stages. We each visited a couple of times a year, to give him what support we could, and her social services aide was brilliant. But living with her wandering, violence, double incontinence and all the rest just wore my Dad out. We finally persuaded him to take some respite care for both their sakes. After she'd "been incarcerated," as he put it, he sat down in the living room and didn't move for three days. A friend found him, and he was moved to hospital where he died two weeks later.

My mother lived, in the same care home, for another four years until pneumonia finally claimed her. I saw her about a month or so prior to her death. I think she knew me, but can't be absolutely sure. She was clean, and smiled a lot. I held her hand for about half an hour, then she released her grip. "Sticky" she said. It was the only word she uttered during my visit, and the last I ever heard from her.

[Kevin S]

Thanks to all for these replies and sharing. TrL, I probably should've taken your advice before starting the thread... I've redacted the more personal details from the OP.

[Duncan Gardner]

Nothing new to add but wishing everyone affected all the best

[Sporting]

I have personal experience of a family member with Alzheimer's,. Here is something I wrote some time ago. It is probably not of any practical use but is simply a snapshot of someone in the earlier stages of one of these horrible conditions. I've redacted parts so it may not run so smoothly as a text.



S sits with the Panini cards in front of him and slowly places one next to another, and so on. From time to time he picks up a card for a longer period and stares at it for some time, as if something about it is familiar, but mostly he's occupied with placing, meticulously, one card adjacent to the next. D wants his cards back and tentatively reaches to nudge a couple of them across the table. "Nein!" his grandfather suddenly bursts into life, "nein!".And D, who doesn't understand why his grandpa is suddenly so unfriendly and selfish (the latter a characteristic he's been known to show himself, though) begins to throw a tantrum of his own.

At other times S looks on as D completes a jigsaw, laughing like a kid each time a new piece is fitted. All the older man can do himself is pick up a piece at a time and vaguely place a jagged part next to an indented one. It's apparent that he has no idea ( his brain can't cope any more) about matching colours, nor if the piece might vaguely fit, or if the images on the two pieces are at all complementary. But neither is he bothered by his failure. When D takes a piece from his hand he's happy to watch it being slotted into the ongoing puzzle, and laughs again like a five-year old.

S is 75. He worked in an engineering company for most of his working life, was a solid, hardworking employee, saved and used his money well, but also had the good fortune to marry a woman who came from a richer family and who was able to put money into the house that he himself half-built. Plumbing, electrics, landscaping, bricklaying, tiling, graft on top of planning. They had the land for a long time before work could start on the actual construction, but a legal dispute held work up for 6 years. The mayor of a nearby village owned a house on slightly higher land and if S built his then the mayor's view of "his" village would be blocked. But eventually the courts gave him the go-ahead and the house was built.

S never goes upstairs now, nor downstairs, from where there is access to the three garages. He only ever ventures outside by means of the main entrance, and then only to say goodbye to his grandson, who for him has given him great pleasure over the course of a week, but of whom he commented to his wife when we first arrived, "You didn't tell me that K had a son." This was the fourth time we had been there with D,

Today P (his wife) is scared and stressed. Her days are spent trying to deal with her husband, and attempting to cope with her own reaction to his illness. In the morning she retains as much routine as possible. The electric blinds are not drawn up until 8 o'clock, as he's capable of getting up too early if he hears them before, and so bothering her while she prepares breakfast. This is always the same: coffee, toast, butter and jam, with half a grapefruit each on Sunday. S still manages to spread the butter on his bread, though he's beginning to suffer with this as well, and he knows where the milk is on the table. He's not always the best at wiping his face after eating, though, and so P has to do the job with a serviette. Then it's a question to seeing if he will go to the toilet, because he's prone to forgetting these days and so pissing himself.

P used to be able to depend on him for most about everything: minor household repairs, the bulk of the gardening, carrying the heavy shopping, helping with the washing up, mending tiles on the roof. Now this is all her responsibility, and though she gets help from her older daughter who comes when she can to help out in the garden and allow her mother to go to town for longer than an hour without dreading that her husband is going to wander too near the high upstairs windows, open the dishwasher while it's on, or even worse to go out to the street and reveal his mental state to the neighbours..For P is terrified about people finding out how S is these days. Quite simply, she's ashamed, and this is why it's taken her so long to find external help and support, not because they're short of the euros needed to pay for such assistance (and in any case the German health system is pretty useful in this area), but because this is something new and shocking for her, and so as far as possible she's attempted to deny the existence of the illness from friends, neighbours but also, in some ways, from herself.

This may be why she hasn't been able up to now to offer him the kind of stimulation which, why not being a cure for the disease (there isn't one, at least known, yet) would allow him to spend his waking hours occupied in some way. Instead, the TV is turned on, and S mostly stares uncomprehending at it, zapping from time to time, occasionally making connections between what he sees and events from his own life (for example, a family member recently died ,and P went to the funeral. So when S sees people singing and dancing on one programme he suddenly gets very angry and asks why they are behaving in such a disrespectful way.)

Speaking of this, S has got it in his head that each time P goes out it's to a funeral. When we were there, she went out to a coffee afternoon with friends, and when she returned he demanded to know why she had come back drunk when she was attending this funeral. P wasn't drunk, she hardly ever touches alcohol. Somehow his anger at having been left alone by her for longer than an hour or two had brought him to this conclusion.

D, during our visit, teaches himself via the rapid drinking of his apple juice to burp on demand. He does this at the table at just about every meal.K is horrified, remembering the strict table manners insisted upon by her parents when she was a kid, but S suddenly bursts into delighted laughter, which he repeats every time D belches. D has an audience, S is momentarily "alive" again, P is resigned to this rather unwelcome incursion into her own appreciation of what is appropriate behaviour...

On another occasion, however, something slightly different happens. D decides to place a toy of his on the breakfast table. He's been playing with it while waiting. does his nut. "Nein! Nein! Nein!" over and over again, and refuses to start breakfast until the offending toy is removed. D now throws a tantrum of his own and refuses to eat unless the toy remains. It takes a lot of parental skill and patience for order to be restored.

D's German improved no end and he was even beginning to understand the somewhat difficult Swäbisch dialect. And when we left, S was like a kid as he hugged and waved goodbye to us, but especially to his grandson. A grandson who said at one point during our visit, "When Opa [grandfather] is better, can he come to visit us in Spain?"

[Sporting]

A year later:

S moved, or was moved, into a nursing home a few months ago. He lives in bed and in a wheelchair, and has to be fed, washed, changed and, well, more or less everything you can think of, has to be done to and for him. Visiting time is, with exceptions, between 3 and 5 each day. I was there on four occasions during the week. Seated at various tables are about 9 or 10 patients/residents, mostly with Alzheimer's or other dementia-related illnesses, a couple with heart problems, including one chap who has a motor-assistant wheelchair which is great for his regular escapes to the local bar. He's German, and so beer is never far from his grasp. He's cutting his lifespan with each litre, but he doesn't give a damn. There's a woman with half her false teeth missing who regularly breaks into a wail which, we are told, is her attempt at singing. Nobody seems to mind the noise, or nobody hears it or is aware of it. The carers do a sterling job all round, but on more than one occasion I ask myself about the futility of it, the pointlessness of it, the uselessness of it. When a man can no longer recognize his own daughter, what is the sense of his life?

And yet there is still dignity to be maintained, love to be given, respect to be held. P, his wife, cleans her husband's already spotless wheelchair in the same way as she has cleaned for half a century, decorates his room with photos he surely can no longer distinguish from one another, tells him all the news that the fog enveloping his mind cannot hope to let him understand. It's like speaking to a baby but you know the baby will grow and mature, whereas with S....Occasionally, he will come up with a coherent phrase or two, but how much is he conscious of what he's saying? (How can we know these things in any case?) And how I can speak this way when I know full well that if it was a member of my family involved, I'd be showing the same care and attention, bordering on the ridiculous perhaps, but nonetheless given without undue reflection or ideas to the contrary.

Back at home, P continues as before, living in a house now far too big for her (but she needs the space, the garden...downsizing would be the logical step, but not necessarily the right one). On Sunday, she still eats her half grapefruit as she always did, every Sunday, for years, with her husband. I had the other half last Sunday. I wonder what happens to it when I'm not there.

[Paul S]

I have thought long and hard about how to contribute to this thread because my experiences of dementia are very different but....try to get few the first few lines of what I am about to say.

About 20 years ago officials in Whitehall sat there talking about the Mountain Rescue services in the UK and the fantastic voluntary resource they have. Aren't they brilliant they said, they go up and do technical rescues of climbers, they carry injured hill-walkers off the hillsides and if we ask them to look for a dementia patient in Perth or Carlisle they quite happily do that as well. I wish we had them in the rest of the country. It was from that conversation that they set up Lowland Search and Rescue and now every county in Britain has its own search and rescue team. There is a team in Nottinghamshire, Lincolnshire, Norfolk, Suffolk, Essex, Kent, Sussex, Hampshire and yes there is now also a London Search and Rescue (SAR) team. Based on last years call out numbers - which I can only roughly remember (it is Christmas Day after all) - the busiest teams were as follows:

(approximate values only)

Northern Ireland SAR - 100 call outs
Surrey SAR - 95 call outs
Essex SAR - 92 call outs.

Nothern Ireland are top due to the large area they cover; Surrey are second due to the large population; Essex are third due to the the large population and long coastline. Those three teams had more call outs last year than any of the the busiest lifeboat station or the busiest mountain rescue station. But it is lies, damned lies and statistics because there are 5 lifeboat stations in Essex and they collectively have more call outs than Essex SAR. But I hope you get the picture.

I started to get involved with Lowland SAR about two years ago and I am now a fully qualified Search Technician and Bank Searcher. I have never mentioned this on OTF before because when we get called out we are party to information which - if made public - may cause the missing person to take their own life. So my mouth stays firmly shut on searches I have done and things I have seen. But what I will say is this. Whilst 80% of searches for Cairngorm MRT are injured walkers and climbers, for us in my Lowland team 80% of the people we look for have illnesses such as dementia or alzheimers. In two of the searches I have been involved with this year, the missing person ("Misper" for short) had dementia and died after entering the water. Bear in mind that in Essex we have the longest coastline of any English county - longer even than Cornwall - and these are just two of the many instances of mispers with dementia we have dealt with this year. A while ago I was called out to search in the north of the county (near Clacton). We deployed foot teams, two dogs teams (trail and air scenting dogs), the RNLI were out and a coastguard helicopter hovered over us looking for signs of life. We were stood down at 4am and the misper was found deceased later that morning by the RNLI scouring the creeks.

So, why do I do it?


I look at my phone when I get a text calling me out and I think about my grandparents 16-18 years ago. My grandfather went to the doctors around that time and forgot why he had gone there and was terribly embarrassed about it. At that point a load of relatives sewed name badges into all his clothes with name address and telephone numbers in it....but it was the start. This is the problem, it has affected my relatives and I know how I would feel if it was one of my own who had gone missing, this is why I go out and search. I'm not a hero. I don't get to wear my underpants on the outside of my trousers and wear a cape. I do it because it could quite easily be one of us. One of me, you, my mum, your dad my sister and that isn't enough reason to do it then what is?

We are always on call, 24/7, Christmas Day, Boxing Day every day, always there if you need us.

[Sporting]

I have thought long and hard about how to contribute to this thread because my experiences of dementia are very different but....try to get few the first few lines of what I am about to say.

About 20 years ago officials in Whitehall sat there talking about the Mountain Rescue services in the UK and the fantastic voluntary resource they have. Aren't they brilliant they said, they go up and do technical rescues of climbers, they carry injured hill-walkers off the hillsides and if we ask them to look for a dementia patient in Perth or Carlisle they quite happily do that as well. I wish we had them in the rest of the country. It was from that conversation that they set up Lowland Search and Rescue and now every county in Britain has its own search and rescue team. There is a team in Nottinghamshire, Lincolnshire, Norfolk, Suffolk, Essex, Kent, Sussex, Hampshire and yes there is now also a London Search and Rescue (SAR) team. Based on last years call out numbers - which I can only roughly remember (it is Christmas Day after all) - the busiest teams were as follows:

(approximate values only)

Northern Ireland SAR - 100 call outs
Surrey SAR - 95 call outs
Essex SAR - 92 call outs.

Nother Ireland are top due to the large are they cover; Surrey are second due to the large population; Essex are third due to the the large population and long coastline. Those three teams had more call outs last year than any of the the busiest lifeboat station or the busiest mountain rescue station. But it is lies, damned lies and statistics because there are 5 lifeboat stations in Essex and they collectively have more call outs than Essex SAR. But I hope you get the picture.

I started to get involved with Lowland SAR about two years ago and I am now a fully qualified Search Technician and Bank Searcher. I have never mentioned this on OTF before because when we get called out we are party to information which - if made public - may cause the missing person to take their own life. So my mouth stays firmly shut on searches I have done and things I have seen. But what I will say is this. Whilst 80% of searches for Cairngorm MRT are injured walkers and climbers, for us in my Lowland team 80% of the people we look for have illnesses such as dementia or alzheimers. In two of the searches I have been involved with this year, the missing person ("Misper" for short) had dementia and died after entering the water. Bear in mind that in Essex we have the longest coastline of any English county - longer even than Cornwall - and these are just two of the many instances of mispers with dementia we have dealt with this year. A while ago I was called out to search in the north of the county (near Clacton). We deployed foot teams, two dogs teams (trail and air scenting dogs), the RNLI were out and a coastguard helicopter hovered over us looking for signs of life. We were stood down at 4am and the misper was found deceased later that morning by the RNLI scouring the creeks.

So, why do I do it?


I look at my phone when I get a text calling me out and I think about my grandparents 16-18 years ago. My grandfather went to the doctors around that time and forgot why he had gone there and was terribly embarrassed about it. At that point a load of relatives sewed name badges into all his clothes with name address and telephone numbers in it....but it was the start. This is the problem, it has affected my relatives and I know how I would feel if it was one of my own who had gone missing, this is why I go out and search. I'm not a hero. I don't get to wear my underpants on the outside of my trousers and wear a cape. I do it because it could quite easily be one of us. One of me, you, my mum, your dad my sister and that isn't enough reason to do it then what is?

We are always on call, 24/7, Christmas Day, Boxing Day every day. Anyone interested, PM me.

Fantastic post.

[Sits]

Good on you Paul, for the work and the post.

[Balderdasha]

I am very glad that someone does this work. 25ish years ago when my grandmother, who had Alzheimer's, went missing, there was no-one to call except the police, who didn't do much. My grandmother had had an argument with my grandfather and marched out of their house. It was winter and cold and she wasn't properly dressed. Many hours later, but still the same day, she turned up at my dad's workplace, 14 miles from her home. To this day, nobody knows if she walked the whole 14 miles or hitched a lift or how she survived the journey there. She hated my father, but she asked for him by name at the factory gate and told him she was very tired and wanted to go home.

Many more similar stories would not end happily if there weren't people willing to search. Thank you for what you do.

[Amor de Cosmos]

The world needs more people like yourself Paul. Thanks.

My parents lived in a small town in the lake district, people in general were very good. My Mum had a wandering phase that lasted for several months. My Dad locked the doors, so she climbed out of the windows. He put locks on the windows so she began banging on them to attract passers-by. She claimed "Ma was expecting her home for dinner so she mustn't be late." She'd walk for hours often turning up in a village miles away. Some of the locals knew her and would call my Dad, or the police, who were also excellent. They'd stop by every couple of weeks to see how things were going and chat with my Dad. It would certainly have been worse if they lived in a more urban environment.

Beyond a certain point dementia is far harder on carers than patients. Latterly, my Mum and Dad would go out for lunch almost everyday — my Dad didn't cook, and wouldn't accept meals-on-wheels ("we're not taking charity.") — but It soon became impossible as all my Mother's social barriers were gone. They'd be in a pub and, in a loud voice, she'd begin criticising other diners "Look at her over there, she's got gravy on her chin," or "hasn't he got a big nose." Pretty soon they'd get kicked out. My Dad was a beacon of respectability, it wounded him profoundly. By the end they were living on sandwiches from the local mini-mart.

[Eggchaser]

Capacity issues suck balls and on a professional basis, I am glad I can hand the worst cases off to my colleagues who deal with it regularly because I can't deal with it.

All I can say is, for UK posters, make sure you and your loved ones have Lasting Powers of Attorney in place for both Finances and Health and Welfare so that if the worst happens, at least you don't have to worry about the legal side of things.

[Paul S]

I lost my beloved grandmother to this illness three weeks ago. It's dreadful watching people go downhill. First they become forgetful, silly things then they forget, then they've started a meal and you find half prepared meals all over the place. Then they sit down and have a sherry but after one they forget they've had it so have another one and drink the bottle. It sounds funny until the carer who comes in three times a week to clean finds your relative lying in their own mess with a broken hip after a fall 36 hours earlier. After the hospital it's into a care home for 9 years. The last two years of her life she was in bed, cleaned and tidied everyday by carer home staff. I will say now how amazing the staff have been at looking after my grandmother during this time. They locked down early, didn't run out of PPE and during her two years bed-bound she didn't get a single pressure sore.

A chap I know had his mother live until she was 101. He said that when the time comes and they pass away, there is nothing wrong with breathing a sigh of relief and saying thank goodness it's over. The Vicar summed it up, she's now free of the illness that took her. From the women's land army to head teacher of a primary school in Tipton for 22 years it was quite a life. RIP Grandma.

[Balderdasha]

Sorry to hear that. The last three sentences in particular are a lovely eulogy. Condolences Paul S.

I also lost my grandmother to Alzheimer's, but 23 years ago. She ran a home for 40 evacuee children during the war and was a trained nurse and special needs teacher. A very formidable woman who I sadly wasn't old enough to know in her prime.

[Nocturnal Submission]

My sincere condolences, Paul.

[Sits]

Echoing that Paul.