Cockroach cafe - Spring in autumn

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A new thread for those of us dealing with elderly family members. All welcome.

A place to rant, discuss, vent, decompress. No judgement just solidarity.

@watfordmummy sounds tough but believe me a straw poll amongst my friends shows there is no optimum distance. Friends who live very close are required to resolve absolutely everything because of course they can just “nip in”. I am an hour away which means each visit takes up a good percentage of the day and expected to go often, friend who lives further away has to go for longer. It’s all fairly rubbish wherever you are.

I often wonder how many very elderly people, especially those with dementia, have only lived to old age/frailty because without modern medicine they would have died of something else at an earlier age.

I’m in my late 50s and although I’ve still to put it formally in writing, do not wish to receive any life-extending treatment should I be diagnosed with dementia or lose capacity. That includes vaccines, antibiotics etc. I also do not want to be coaxed to eat or drink or given calories dense foods or drinks to extend a miserable existence. DS is my POA and is very well aware of and fully understands my wishes.

There’s a very good reason that pneumonia was long considered the old (wo)man’s friend. But these days medical professionals and carers see it as their calling to keep that friend at bay for as long as possible.

I must get my wishes written down!

My mum is one who would still be around in the olden days. She's never had anything other than Alzheimer's. Rarely even gets a slight cold and how she doesn't get stomach upsets with her complete lack of food hygiene and appalling cooking skills would be worthy of study. But she's definitely the exception.

Mine is the same @countrygirl99. Never had anything really serious. She does have hydrocephalus but it just complements the Alzheimer’s. Bodily, she is fine.
Given the nightmare we had when she had a two month stay in the hospital rehab ward after she fell last year, I dread to think how she’d be in a care home. She was packing her bags to go home on a daily basis and telling everyone who would listen, and writing notes to say she was being held prisoner against her will. It will probably have to happen though.

My mother, now 86 , did spend a lot of her late 40’s and 50’s in the 1980’s/early 1990’s sorting out care for my grandmother, who had dementia and lived a good 3 hour drive away. At one point she and my aunt were spending alternate weekends going down to sort things out, including throwing out the uneaten food the other had put in the fridge the previous weekend. She was working full time, and in the early part still had my brother and I around. When my grandmother finally went into a home I remember a conversation with my mother who was feeling v guilty about it, and me having saying to her that she couldn’t have provided the level of care needed, and she couldn’t have given up work to do it, and that my grandmother would not have wanted her to do that if she was still herself.

All of that has meant we’ve had clear conversations about care and end of life decisions. She used to always say that we should look at care homes for her, rather than taking it on ourselves when the time came. However what happened during Covid with carehomes has made her v scared about them, esp the lack of visitors, and I think it may be different when the time comes. I also think I’m likely to have a goldenballs situation with my brother, there are already signs….

I'm not sure that previous experience makes much difference to expectations once dementia comes into play. My DM and her sister had to look after their mother because she wouldn't have strangers in the house. My grandmother lived to just before her 95th birthday. Granny didn't have dementia she was just massively self-entitled. It was particularly tough on DM because my DF was terminally ill with cancer (as well as hard to control diabetes, heart issues and kidney failure needing dialysis), and he eventually died two years after my grandmother.

At the time DM said that she wouldn't make DB and me solely responsible for her care and she had notional and quite sensible plans of how she would cope with old age. But now that her brain is failing it's the familiar pattern of denying she needs help combined with not wanting strangers in the house leading to multiple phone calls starting with "could you just ..." or "I need someone to ...". She's 84 so she could potentially have another decade of life if she lives as long as Granny did, and she doesn't have much physically wrong with her, so she might.

I agree with @rookiemere, @watfordmummy there is no optimum distance.

We live 10 mins from DF, this means that we end up having to sort everything as DB is 2.5hrs away and will not share the burden. We also get unreasonable expectations from DF that we will just pop in whenever he needs something.

Case in point being a phonecall 10 minutes ago, he wants someone to come up because he is cold and wants another layer on, but refused to put on his fleece himself which is right there on his chair because he doesn't want to wear a fleece or turn up his heating or turn on his gas fire. All of which he is perfectly capable of doing himself.

DF's mother had Parkinson's, he paid his ex girlfriend to care for her and then put her in a care home once it all got too much. He barely saw her as we lived 3.5hrs away, he could have seen her more (we only saw him every other weekend as kids, on his other weekend he didn't have childcare responsibilities), he chose not to. Now he expects me to prioritise him above my kids and family life.

Sadly I agree with @BlackAmericanoNoSugar. I have said to my DPs over the last few years that I didn’t want to end up like my friend who moved in with her DF as he refused to move into a care home, and DM always said to throw her them in a home when they became a burden, but unfortunately DFs desire to stay at home outstrips his actual cognitive ability so DM is effectively propping him up ( despite or maybe because of her own diminishing faculties) so I can’t see them moving until the inevitable crisis forces it to happen.

We live half an hour away, cross country drive, not much fun in the dark with all the floods and potholes at the moment. Unfortunately that's close enough for me to get the "could you just come back again" phone calls when I've just got home, far enough to be really tiring after a day at work (unfortunately work is half an hour in the opposite direction) and so I try to only go at weekends, but then that puts a cloud over the weekends. DB is the other way round, his work is halfway between his house and Dparents, so he does prefer to go after work but then he only stays for a short visit and doesn't do any of the endless list of jobs I get stuck with at the weekends because I've got the whole day. And while it is easier that DF is in a very nearby carehome, it means each visit has to be split between two locations which again severely limits what DB does on a weeknight visit.

I saw this today and it set me off, 10 mins of yoga in a green space is lovely, but I doesn't fix the problem of entitled, recalcitrant elderly with unrealistic expectations nor the issue of lack of support for carers from social care/NHS/DWP etc..

Also they have a massive 'wellbeing' programme at my work, but all of the sessions are during my work time and I only get 30 mins for lunch. Many employers are the same. Any days off end up full of jobs/appointments for elderly or kids. Is it any wonder that I am off work again due to illness/stress/carer burnout?

www.bbc.co.uk/news/articles/cy05091e1x7o

Good grief @Choconuttolata thats unbelievably entitled of your DF! I hope you’re not going…

I remember back when I was effectively dh’s carer (his needs fluctuated) seeing a cheery news story about a carer who was pleased ‘to get an hour a week to myself’. Made me realise that the Selfish Pig’s Guide to Caring was going to be more my line.

I have been left the task of dealing with my BILs possessions as he sadly died last year. One of these is a car. I have offered it to one of BILs friends, for only the cost of getting it on the road as quite frankly that is more than I can deal with.
This was all done with MILs approval…till today. She phones up and says it cost BIL such a lot, she hates to see it going for nothing. I asked if she wanted money for it, she said no. I don’t want money for it, so where’s the problem? Just that it cost so much etc. So I said she could either now tell friend she wanted money or arrange to sell it herself.

She is now vv cross with me.
I know I have not heard the last of this one!

So true @rookiemere about no ideal distance. i'm theoretically one hour away but for it usually works out as two or three due to traffic, floods, roadworks, flood prevention schemes...

@ElderlyDilemmas the issue of having to effectively double visits is one of the reasons we’re not pushing the issue of DM moving into a care home at the moment.

It sounds horrible, but when we’re ( DH and I) considering any actions, as well as trying to work out the best option for DPs - which mostly translates to the least worst option as nothing will solve the core problem of them both having dementia and being elderly - we also consider what the impact will be on us.

I guess I am also waiting for the inevitable crisis to force the decision so we don’t have to make it.

@Choconuttolata I am so sorry that you’re off work with stress. The situation with your F sounds intolerable, especially now you’ve shared what an uncaring arse of a person he is.

Hi everyone. New here. Does anyone have any experience of catatonic dementia? It's been clear that my mum has memory problems for a long time and has become more and more anxious. She also suffers from heart failure and her mobility is limited. Despite this she was lucid and would engage with chatting to family.
Over the last 48 hours she has stopped talking, won't eat or drink or take any medication, just stares and looks terrified. She doesn't move much, resists any attempts to help her, pushing us away.
This was an extremely sudden deterioration and she is now on her third day in Accident and Emergency where she is having some treatment for heart failure but no obvious cause for very rapid deterioration has been found.
I just wonder whether this is catatonic dementia resulting from extreme anxiety and being overwhelmed by everything, with the realisation of her declining memory.
I would be grateful if anyone has any experience and whether treatment was successful. Thanks.

@rookiemere we were forced by a crisis, this time last year they were living fully independently then DF had a fall and was so seriously disabled that he had to go straight from hospital to nursing home. But yes, it is definitely good to take everyone's needs into account including your own and siblings when deciding what path to take.

@Ferns26 I'm sorry, no experience but I am worried my DM is heading in that direction, her anxiety is really severe at times and memory is all over the place.

How old is she? Has she been living independently up until now? And, please take care of yourself through all of this -- make sure you are eating and sleeping. Dementia is really hard (M doesn't have it but DAunt who I cared for did).

I spent half the night lying awake trying to resolve the latest problem with mum and clean forgot I needed to get up early to go to view a house with DS1 and his partner 😔. Gutted, couldn't get there in time once I remembered.

@countrygirl99 I really feel for you. This is exactly the sort of thing that keep happening with me- even when you are not actively dealing with the elderly relative's care, the constant stream of problems (or sometimes just being on edge waiting for the next problem) takes over your brain space.

I’m sorry, no experience of catatonic dementia. The nearest we’ve got is mums Parkinson’s before she was diagnosed and started medication. She stopped responding to us talking to her and had moments I could only describe as the lights on but no one home. Not quite catatonic but well on the way. Her medication brought her personality back for a while.

I hope you get some answers for your mum soon.

Similar here, my mum is taking up so much of my brainspace that I am dropping balls in other aspects of my life. Even when I'm not actually doing anything it is all on my mind and the to do list never gets any shorter.

@Ferns26Have they checked for UTI? Turned my mum from a placid sweet old lady into a manic, terrified, hyperactive psychotic. She thought we were out to kill her, had vivid hallucinations. Complete change in personality. She spent a week or two in hospital but took several courses of antibiotics and about 3 months to return to normal. It was horrific for her and for us.

The thing that really pisses me off is when it was obvious mum needed a cleaner I found someone who would clean, do light gardening, help with admin shopping etc but goldenballs, who is the only one with access to mum's money, insisted only a "proper cleaner" would do. Basically a bad case of "not invented here". Now , of course, the gardening, admin and shopping are big issues which was totally predictable.

Thats really interesting Ferns. I’m not a doctor but I am an HCP. I’d be less surprised at a diagnosis of hypoactive delirium by those symptoms, but I’m certainly no expert. I think don’t be afraid to ask what they think it is, how they plant to treat it and whether they’ve considered catatonic dementia as a differential diagnosis if recovery isn’t as they expect. I think a medical psychiatric review would be worth asking for but can be gold dust.