Cockroach Cafe 🪳Autumn 2022 🪳

[MereDintofPandiculation]

Welcome! I’ve taken advantage of the relative quietness recently to have a good “spring” clean. And also install solar panels and get in a good supply of logs for the stove.

Come in when you want to share good news, or to rant, or to ask a small question that doesn't warrant its own thread. Or just to hang out with others who understand what you're going through.

For newbies: why cockroach? Previous long term resident of "Elderly Parents" Yolo's DM attended a 'small animal event' in a nursing home, and was presented with a "small animal with a hard back" the name of which species she couldn't remember. Her ever helpful DB suggested cockroach, and it has become a toast on here. So 🪳 mes amis/amies, and may you all live to fight another day.

There are! When I spoke to social care and explained their reluctance to accept any help I emphasised I was worried about the effect on my mum as she just can't go out and meet friends for a coffee and leave him as he is not safe. They did suggest day centres for dad but she is not keen as she seems to think they are for people who are a lot "worse". Alzheimers Scotland has an active centre where they are with LOTS of groups going on - coffee mornings, pub lunches, bowling etc - and by sibling and I are doing what we can to encourage her along. Cost is not an issue for them accessing these sorts of things. What's the old saying - you can lead a horse to water...

She minimises a lot too which worries me when she is having conversations with medical professionals. I told her earlier not to lie and exaggerate but that she needs to spell out how much he's gone downhill and that he MUST be seen, in person, by a qualified professional for a proper assessment again, not fobbed off with a phone call.

I took my Dm & DF to see a care home for respite today, within 2 minutes of being there DF was walking down the hallway flirting with the care home manager and you wouldn’t believe there was anything wrong with him, last weekend he had cut up all his shoelaces and thought I had been abducted and taken to Africa!
Everyday is so variable it is emotionally exhausting and just increases the feeling of guilt when considering care homes.

I don't know how common the minimising from partners and spouses is, but FIL continued to insist he could cope with MIL up to a few days before she was actually sectioned, and in the meantime there were four other adults run ragged trying to fire-fight the whole situation. But no, he could 'cope' just fine.

We think that there might be a care home that will take her now, but there's still a lot of guilt there. I don't know what else we could do. She can't stay in hospital indefinitely.

Objectively I get that where the long term prognosis is shit, it must be very very difficult for the person(s) concerned to be able to look the situation square on and deal with it. And that’s before you add in cognitive changes. So I can see why the common reaction is denial and muddling through. Kind of like the spouse of a “functional” alcoholic where you get to the end of the day, and find that despite your dread, they haven’t been sacked. But you know that day is coming, just not when.

How can I have a sensible conversation where I can say - mum, are you really so scared of dementia that you’ve decided to starve yourself and die at home before we can move you to somewhere where you can be looked after and I can visit every day rather than once a week? Have you really given up? I try and put myself in her shoes and I’ve come to the conclusion that the cognitive changes in her brain are simply preventing her from thinking from different perspectives now. But she’s still deemed by professionals to have capacity to make the decision to not move, so we’re back to being run ragged, with the exhaustion and guilt that all of us seem to feel, while DB and I watch the very slow motion car crash happen in front of us.

funnel what is the professional assessment based on? Is daily care factored in, I mean by paid carers?

Assessment of capacity? Based on the professional’s conversation with her. Mix of the usual questions of what day of the week is it, how old are you, where are we, then a more general chat about her circumstances and the consequences of her decisions.

so we may all agree it’s a not the choice we’d make, it’s not the sensible choice, but it’s hers and she’s able to make it.

She was due to see her GP this week, now next. Hoping she’ll be able to reach her in ways we’ve not. This new thing of not eating is worrying me a lot.

Went to see Dad yesterday. He’s always been adamant that I should wake him if he’s asleep. It was 3.30 pm and he was fast asleep. So I tried to wake him. Some hope! Have to admit he was more lucid nearly asleep than when awake. Including “what is the virtue in my being awake?”

He’s losing his appetite. When he finally awoke, I tried to interest him in a sandwich they’d brought. “I’m FED UP with sandwiches” “Would you like something else?” “No, I’m FED UP of being nagged to eat”. I suspect we’re on the final straight.

Lots of interesting posts here... what a lot of load we are all carrying. [Flowers]

@HufflepuffRavenclaw that active centre sounds brilliant. I did find my mum sometimes let me do things when I just got really blunt and frankly emotionally blackmaily about it. 'You may feel you're coping Mum but worrying about you is going to put ME in an early grave. It's a trip out to go bowling so you can have a cuppa in peace FGS, it's not a one way ticket to the camps for the old boy'. If she can say to herself it's happening 'because Huffle gets so worried' it's more likely to happen.

And @MereDintofPandiculation and @Badger - more 💐 for those of us in the last weeks. I took my brother to see DM for probably the last time at the weekend. She smiled a couple of times but the nurse jokily asked her 'WHO'S THAT MAN' (not recommended communication strategy for those with dementia tbh but I'm beyond caring) and she just said very quietly 'don't know'. Still glad we saw her.

My Dad was very reluctant to accept help whilst caring for Mum at home. In his words he had signed up for in sickness and in health and that was the way things were. I knew that at some point there would be an incident and that would be when he'd need to look at homes. He says now that perhaps he should have made the decision sooner, but hindsight is a wonderful thing and he did what he thought was best for Mum at the time. It took her having a fall for him to see that he's not well enough to care for her at home anymore.
I'm lucky as only live 30 mins away so could easily get there. It has taken a while but I finally realise there is only so much help you can give and sometimes you have to take a step back as it takes over your own life. I realise this is easier said than done and 4 years ago I would never have said this.

Can I share a really positive experience with mum yesterday. I didn't see her for three weeks because of Covid so last week when I saw her again she was a bit hazy about who I was. Yesterday she looked so lovely when she was brought in to us - her slippers and jumper matched and she had her favourite blanket over her lap. She was so happy. She has been in the home since October 2021 and at last she seems to have settled. I honestly thought the day would never come when I would look back on a visit and say "That went well!" but I think we may just have turned a corner.

She is still confused - asking about my brother (I'm an only child) and talking about her grandson so she says is her favourite son in law but we can cope with that as long as we leave her smiling at the end of the visit.

@IthinkIsawahairbrushbackthere your post is lovely to read, so pleased you have turned a corner and your Mum is happy.

@IthinkIsawahairbrushbackthere that's lovely

@MereDintofPandiculation @PermanentTemporary @Badger1970 sending thoughts and 🌺🌺.
@IthinkIsawahairbrushbackthere that is so lovely to read after everything you and your family have been through.

Hello all - sadly I think it's my turn now to embark on this stage of life.

DF has taken a definite and unexpected sharp downturn since the start of December and I don't see any chance of him getting back to what he was then. It's just been one thing after another and DM is barely coping with everything.

She has her own issues but nothing significant at the moment and he is in complete denial - he'll be "better and able to drive next week" but we've had that for a month now.

Even more worrying is that along with all the new physical issues he is definitely starting to show some signs of early dementia.

I know I'm going to find this hard - I'm not known for my patient and nurturing skills. DH is a tower of strength but he's none too young himself now.

I hear you, @SoHereWeGo , I'm not the caring and nurturing type either really, fine with my own kids but this is a whole new ball game, isn't it? Being selfish and putting yourself first when it comes to elderly parents is so taboo but sometimes it's your only option - there is only so much you can do and there are other people in your life who need you too.

Take care of yourself.

Sorry, I think I may have overstated things. By “suspect we’re on the final straight” I meant “there’s a good chance he won’t be here next Christmas” rather than “he’ll be dead in a week”. But thanks for the kind wishes

@MereDintofPandiculation the fact that you are having to confront the inevitable is deserving of sympathy whether the outlook is next week or next year. It still hits hard.

Confronting the inevitable is made easier by the fact we’ve recently celebrated his 100th birthday with him. Anything over that is a bonus.

As my cricket loving son would say a century not out is a terrific score.

Sorry to read about your father mere. How fabulous to reach his century.

Further update here. Mum had yet another unsupervised fall in the home this morning, and is back at A and E. It sounds less serious than the previous falls, but it's becoming clear this setting is not meeting her needs.

Thé LA investigation has started.

I'm going to explore having her assessed for nursing care, as they have a higher ratio of staff to inmates and hopefully are better placed to keep Mum safe.

. Does anyone have any experience of a relative transitioning from a care home to a nursing home?

On thé financing side, she is entirely self funding at present. Google tells me nursing care can be wholly or partially funded, but I suppose there will be battles ahead to obtain this. I will contact Age U.K. tomorrow but in meantime wondered if anyone had experience of this.

Words MIL has been in three settings since May. She now needs 3:1 ratio to help her with personal care. Started with 2:1 in carehome no 1 £1250/week but did not settle. Moved to carehome 2 eight weeks later at £1400/week as they had slightly higher staff ratio through the day. However, she was moved November to the higher dependency unit of carehome 2 at £1500/week. Unhappy in all three places but safer for the staff when she has her personal care done.
After reading your posts I’d move her. My own DM was a falls risk and broke her wrist and hip in hospital and her first care home. I’ve also seen instances of horrific bruising on other elderly residents from falling and fighting, too. But the essence of a good care home is how they own the problem and make steps that it never happens again. Her place does not sound like they have sufficiently good leadership or training. So hard.

A hundred? Wow. Impressive.
We met a resident of one of the homes we were looking at who was in his late 90s. He was livelier and more fun than MIL has been for a long time, and she's 20 years younger than him. It made me feel really sad for her. And the rest of us.
We decided against that home, as she would never have been able to take advantage of the facilities, and even the cheapest tiny room was painfully expensive. Doubt they'd have taken her anyway, from what they said in their initial preamble about assessments.
I gather from the hospital that MIL is on her final lap too, with a similarly vague but limited distance to be covered.

from ourexpeeuence the posher all singing all dancing homes that are expensive dont seem to take them at the latter stages of dementia and the reality is most of the facilities they wont be using sadly
I struggle to understand how long that final lap is my mum is double incontinent losing her speech cant really understand you bow and or know who you are and now has lost her mobility you wouldnt think she could go on much longer. She has got to this stage in about two years then I know people can be in the stage my mum bow is for years sadly

Mum only ever wanted to make it to 80. She shot through that and I thought there was a chance of 90 but her quality of life was so poor at the end that the extra year was not something to wish for.