🪳 Cockroach Café Spring 2024 🪳 🪳

Huge thanks, all, for the kind replies and understanding, and I have a great deal of sympathy for many of the situations I'm reading in this thread.

Having lost a father to what I now see as a fairly "straightforward" experience of cancer, then a brother to several awful years of cruel illness with a fight for care provision, I think that dreading a long and messy (emotional, logistical, as well as physical!) decline of a loved one is totally understandable!

@Juneday your post reminded me of what a friend of mine recently discovered, that objectively severe elements of her disabled daughter's condition were being classed as 'moderate' in the care provision guidelines. No one wants this care but it is desperately necessary and the care assessment guidelines can be pretty sickening.

I posted a while ago about how my mum was determinedly ploughing through the proceeds of her downsizing and I was a bit concerned about future care needs. I was robustly told, by about 90% of posters, that it was outrageous of me to judge her, I was only worried about her inheritance, and we should all live for the day and let the state pay for our future care needs. I think most people have no idea what future care needs can involve. She has started saying things like "I wouldn't have let your grandad go into care" and is also convinced that it was the move to a care home which killed my dad - though in fact he was only moved there for respite because he was so far beyond what anyone could manage at home. So I think she is assuming her daughters will look after her. My heart goes out to those of you in the middle of the intense phase of caring. We have experience of it with both dads and it was exhausting and distressing.

I am trying very hard to not cross that bridge before we come to it with my mum, and am pleased she is active and enjoying life - and getting a lot of pleasure from spending her downsizing money. But it is a nagging doubt.

The bigger nagging doubt about MIL is perhaps slightly eased by the fact she did the memory assessment (alone) and reported back that she could do it all, though slowly. So I think the assumption is that she is acting eccentrically with very high anxiety, but has not got dementia. A diagnosis would have prompted discussions about the next phase, but no diagnosis means we are back to watch and wait and deal with the regular crises.

I sat in (via teams) on DST meeting today for MiL at nursing home. In essence SS hoping to get full NHS funding. 20 years ago she may not have lived until 91, or if she had might never have been sent home …. Instead was sent home with multiple issues before SS said she needed better care and nursing care. Which one would think is same as hospital care in many ways. Each area gets a score from no needs to severe needs and those scores and how they interact determines who pays (in her case they take all her income and a chunk of her savings) which is affordable …

what was interesting was needs that for anyone having to care for a relative would feel that most of her needs are high. But most were classed as moderate. She can’t feed herself without help, she can’t walk, she needs full personal care, has nights without sleeping, skin cancer, kidney disease, depression, blood pressure issues, double incontinent - all considered moderate needs!! Not sure what that would mean if she was at home?

she weighs 4 stone less than 2 years ago, but because they give her supplements she is putting on a bit of weight - so moderate to low nutrition needs? She may live a year or more with no cognition, and SS services likely paying the extra £5k pcm and only DH sees her most weeks - not that she knows 🙁

I have to say the care is great but …. In the meantime her grandchildren are paying for transport and prescriptions and student debt etc

I have to force myself not to think about it too much. I’m 48, mum is 84 and the thought of another 10 or more years being hamstrung by caring responsibilities that get steadily more complex is terrifying.

After what we went through with Dad I think a repeat performance would finish me off.

Had a call out from the alarm company at 4am this morning to say it had activated but they couldn’t get a response. Went round and she was fast asleep with her head laying on the bloody wristband.

MIL is 103. Blind, deaf, hallucinating, suffering from vascular dementia and desperately unhappy. She could go on like this for years as there’s nothing physically wrong with her that might lead to her death. She started going seriously downhill five years ago and has just been moved into a care home. I really think DH and BIL (both in their seventies) will die before she does, and I have visions of being on my own deathbed and worrying about leaving DD to cope with her. I’m afraid I have very bad dead parent envy.

@FiveFoxes & @lucycoco you both are in tough situations. Just mind yourselves xxx

Our generation of parents are living longer due to better medical care and health services.

My mother s parents had both passed away by the time she was 34.
My dad s parents had both passed away by the time he was 44.
Neither of them did any caring even though female members of both families did help out but they all were living independently, help was not to the extent that a lot of us are doing today.

My Mum's Mum lived to 100 ... gulp!!! (Although she didn't have dementia or leukemia).

My mum comes from.a very long lived family and is 86 with alzheimer's that seems to be progressing fairly slowly and is physically quite fit. Currently at the needs a lot of support and sorting out of disasters caused because she thinks she can still do stuff rather than personal care. I can easily imagine her still living at home in her 90s with me, by then in my 70s, been driven insane.

I think about life expectancy as well. DM is 88 and DF is 95; both still mobile, just, and living at home in a 4 bed semi with a stair lift and walk in shower. It’s the inevitable decline I dread. Should think about healthspan I suppose not lifespan. I hope the end is quick when it comes. I know my DF thinks the same.

Welcome @lucycoco I must say that I identify with all the moaning. The ironic thing is that the younger version of my mother really hated it when people moaned and complained all the time and went to great lengths to avoid such people.

Welcome @lucycoco and @FiveFoxes, plenty of tea/gin/chocolate/cake in the corner, make yourselves at home.

I have to say @lucycoco I think you are enormously brave for moving your mum to another country to live with you and I cross all my digits that it works out for you.

@Sittingontheporch I am so glad you said that about googling life expectancy. I thought I was the only one.

@catndogslife @Abra1t Thank you. I will call up the consultant's secretary nearer the next appointment when treatment will be discussed and let them know. I will leave it until then so I can be accurate regarding her current condition.

@lucycoco I just wanted to say that I quite often think, oh god, is my mother going to be one of those that lives to their mid-nineties and the prospect is horrifying. I've googled life expectancy with her condition (dementia, very limited mobility) so many times that it now auto fills for me.

The world seems to divide into those that would say, how horrible, I'd do anything to have another day with my late mum, looking after a parent is the greatest privilege you can be lucky enough to experience. Etc, etc.

Or, and that covers people on this board and others, you will get a nod of recognition and reassurance that what you think is completely understandable and normal. There's even, whisper, the use of the expression 'dead parent envy' - where a friend loses their parent to a painless mid-eighties, living independently and healthily, nocturnal heart attack and you, yes, envy them.

I’m so sorry.
My mum has both multiple myeloma and now acute myeloid leukaemia—probably not long to live. The load is heavy even when they have mental capacity. I used to darkly joke to my husband that I would predecease her with the strain. Not now, of course.

Do have a word with the haematology team. There might be a good specialist nurse there too.

@FiveFoxes I would recommend you contacting the consultants secretary and letting them know about the Alzheimers diagnosis and why you didn't mention it at the appointment. Consultants are specialists within their field, but wouldn't necessarily know what the medication mentioned was.

I just need to get this out somewhere as no one in real life understands. The consultant has told us that my Mum's Chronic Lymphatic Leukemia (CLL) is getting to a stage where treatment will be needed later this year. She has Alzheimer's and lives alone, without carers apart from me at the moment as she is just about managing.

I am worried about the effect the treatment will have on her- side effects etc- and how she will cope with this. I am also (selfishly) worried about the massive additional load on me. I am not sure her consultant knows she has Alzheimer's. I couldn't tell her as Mum was with me and doesn't 'know' her diagnosis as she got very very upset last time it was mentioned. I did tell the consultant about the Donepezil in the hope she'd know what it's for!

It was bad enough when Mum had treatment last time round and my Dad was still alive. Even then I was involved in late night hospital trips because she'd got a temperature. Now I don't even know how I'll know.

Also there's a part of me, having seen the latter stages of Alzheimer's and care homes with FIL, that wishes this would be the end for her and wonders if treatment is the right option. But I don't want her to suffer. I never thought I'd look back on my Dad's heart attack and be glad that he died so suddenly, but I do now.

Also the GP told me when I first took Mum in with memory issues that it could have been caused by CLL/ the treatment for CLL. I am worried that the worsening condition and then the treatment will accelerate the Alzheimer's.

Sorry just feeling quite down about it all today!

I've just found this thread, feeling a bit desperate to talk to people who understand, and it looks like I might have found the right place! My mother is 81 and after my brother died, she was on her own with no family or anyone nearby to help, getting steadily less able, so we spent a year arranging for her to move out to live with us abroad. She asked to, for years she's said she wanted to, and the support from another country was just unfeasible and getting worse.

So now we are living together and due to move into a house where she will have her own little house, separate but together. But fuck me, it's hard. She has been unhappy, well, forever, but the last year or so was convinced she would be happy once she was out with us because she was alone and she couldn't cope. And now she's here and of course, she's not happy. And I need to build some personal boundaries to deal with it - the passive aggression, the resentment she now feels, I've been dealing with everything on her behalf for some time but now she's having everything from dinner cooked, life admin dealt with, washing done, suddenly she says she's bored and can't believe she left her friends and home town. She lived a VERY solitary life so I thought that having a similar set up (little house, garden, her cat) but right next to us would be better, but now she has those basic requirements taken care of, she is acting as if she's a different person, needing more stimulation, hobbies and outings than she wanted before. She keeps saying 'we never talk any more, just you and me' because of course now we live together, with my partner and son, whereas before I would call her every day.

There's so much to say, and to moan about, but for now I'm just looking forward to popping in to this thread and letting go of some of the guilt. And seeing other people deal with the combination of becoming a parent to someone, and still feeling like their child. I hear of people reaching a 'ripe old age' into their nineties and currently feel terrified that she might. I haven't articulated that before, but hopefully you understand!

Forgot to say thank you 😁!

@TeenDivided ...that is interesting 🤔.

... for standing in the shower we can still use the pre-existing shower curtain inside the half height surround. But for DM's carers, the half height surround means they can assist easily without getting wet.

My DM's new walk in shower is very good.

The shower was already there, they took the bath out, put in a 2/3rd length shower tray, very low level a half height walk in shower surround (Impey, would def recommend), a fold up decent chair with proper legs and arms.

But DM is 87 and has enjoyed her baths up to now. I wouldn't have wanted to do this 15 years before it was needed. As it was it was completed the day after she came home from 4 weeks in hospital.

We’re in the middle of planning to replace the bath with a walk in shower here - in our own house - I like a bath but the only shower is currently over the bath and I recognise that will get more difficult. More and more friends are doing the same and replacing baths with showers - according to the bathroom planner it’s getting more common so I wouldn’t worry overly about it devaluing the house.