Cockroach Cafe 🪳Autumn 2022 🪳

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

@IthinkIsawahairbrushbackthere that's lovely

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

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

Slightly better days here. After my hissy fit at the nursing home, things have improved dramatically and Dad's far better on the altered medication. I had a long chat with the palliative care nurse and I also found some podcasts/youtube interviews with an amazing palliative care Dr (Kathryn Mannix) which has been a big help. Dad's really sleepy, and can only communicate for short periods of time now. Visits now mainly consist of a brief chat, then sitting holding his hand while he sleeps and reading a book. It's strangely very calm and he's happy that we're there. I don't think he's got long left, but he's no longer agitated and touch wood not overly medicated.

I did have a moment of complete panic yesterday that he won't be here soon, and it gave me the most horrendous pain in my chest that took a long time to subside. My Dad has always been my active parent (I'm not close to Mum at all) and it's going to leave me very alone... Dad's always been in my corner even when I've fucked up or been wrong. He's simply irreplaceable and I'm already missing him

@HufflepuffRavenclaw there may be local facilities such as lunch clubs for couples where one has dementia; respite offered at day centres; carers for respite breaks at home. I'd really encourage your Mum to try and engage with whatever help she can get, even if its for 2 hours a week so she gets a break. And an occupational therapy referral from the GP may be useful to make sure the house is safe for your Dad such as cupboard locks etc. I used to work in care and can't emphasise enough how important it is to look after the carer as well as the patient themselves. Put simply, they're often the ones that die first due to the strain on their own health. Dementia is relentless.

@HufflepuffRavenclaw No harm looking at care homes this month just to see what's out there.- you never know if things will take a rapid lurch in the wrong direction. Almost always it happens quicker than you think/ hope. I truly dreaded going to see around a care home but after the first two 'inspection' tours it gets easier

Riding "I know it's because she thinks she should be top of my priority list when the reality is that she's barely on it at all."

I'm so glad you said that! Sounds like your mum is at the stage she doesn't need anything but just wants a moan? I had that trouble with that stage as well - wondering why that should be a priority for me.

There are non-urgent things that mum asks me to do and now I just say frankly "not on my list". It is actually better to be honest, I find. Otherwise I'm just seething with resentment and cry a lot!

Thank you all. I am feeling torn in several directions at the moment and know that there is nothing I can do to ease the problem. I had a very good discussion on Wednesday with the (lovely and friendly) person on the 24 hour emergency line at social care who was able to reassure me that should anything happen to Mum, even temporarily, they would make sure that Dad was taken care of and safe. He absolutely couldn't be left on his own, and as utterly selfish as it sounds, he can't come here and I can't move there permanently either.

The way things are progressing I think we'll be looking at care homes in 6-9 months and I think in all honesty that will be a blessed relief for both me and my mum. Having someone else take the responsibility for reassuring him that there are no "bad men" taking his car, or trying to break into the house, or trying to poison him with medication.

It's just this interim phase - which nobody can estimate the length of - which is so hard.

Hello @HufflepuffRavenclaw. Are you me from 3 years ago? If so, brace yourself, it's bumpy but I'm still just about doing ok despite intermittent crises.
Work, DM and teenager conspire against me but this forum is a godsend to put it into perspective - along with trashy TV and an odd glass of wine!

Welcome @HufflepuffRavenclaw. Sorry to hear about your Dads dementia. As a recent newcomer myself, I can say this thread is fantastic and I no longer feel like the only person in the world with the emotions that I feel when dealing these issues. I hope you find it of use too. Mantras that sometimes help me on bad days:

• Put your own oxygen mask on first
• You can only do what you can do
• You are only responsible for your own happiness, you are not responsible for the happiness of other people

in addition Emma who is on here made a cracking comment on another thread to the effect that our elderly relatives who insist they are independent and can manage, subconsciously mean “I reserve the right to cock it up and expect you to to swoop in and fix it all” which struck a note and helped me detach a bit in my situation.

Hi @EmmaEmerald oh yes, I remember you from that earlier thread about moving!

Thank you, I'll give that a try. I was just so fed up with finding the time to speak to her when I've got a million other things on the go, then all she does is moan at me! I know it's because she thinks she should be top of my priority list when the reality is that she's barely on it at all.

Hello all, I am new on this thread after having been signposted here from the Alzheimer and Dementia board.

My dad is 78 and was diagnosed with dementia in February 2020, before the world went mad for 2 years. He's never really been assessed and managed properly, it's all been done over the phone and the GP and hospital don't seem to talk to each other. Mum is his main carer, she is 77 and has no real health issues of her own - but she is 77. I live 90 minutes' away, my sibling is considerably further. Certainly not a "pop over every day" distance.

Dad's dementia was managed OK for the first 18 months or so, he's on several drugs (mum manages this, will not share what he is on and why), but recently he has been significantly worse. Shouting out, paranoia, can't settle. Good days and bad days, but bad days outnumbering good at the moment. Mum is not good at asking for help. Actually, that's an understatement Mum is shit at asking for help. They have never seen anyone from Social Services/Care and see accepting any sort of help as a failure.

I'm really struggling. I dread going to see them as it is upsetting and difficult. I am menopausal, have three teenage children and and I'm in the final year of a Master's degree. I feel really guilty for not being there more. I know there is no good end to this, it's just a case of how long before we have to start looking at care homes.

Dementia is awful.

Question for you lovely peeps.. adult social care re enablement have done their review on my mum, she's to be given a case worker as they've decided her needs are mental health rather than social care. Anyone with any experience of what this actually means?

waves madly at Riding hello! I was on the "moving home" thread last year, till it fell through, can't recall my UN from then but pretty sure it was Emma something!

Depending on the situation, I would tell your mum that you're tired of listening to the grumbling. IME distraction doesn't work. But when I told mum it was draining and annoying, she took that on board. Now we just say to each other if we don't feel like chatting. Of course, some moaning is fine, but I reached the point my head was about to explode. My dad would moan for three weeks if post got delivered wrongly - it was just ridiculous.