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.

WARNING: RANT AHEAD
Why do I do it? Why do I possess this crushing sense of personal responsibility?
Because a) organising a new care home b) cleaning out family home of 52 years c) booking and paying for gardeners d) paying bills e) keeping octogenarian friends in the loop and raising a child by myself and working full time is not enough? There are days where I fantasise about walking out of my life. Nothing bad, just upping and going. Because this is all ACTUALLY WORK and I am not getting paid for it. The system somehow relies on me doing it all, but in the end it will be me who pays the price: poor physical health from
the constant exhaustion and poor mental health. This probably makes no sense; I’m just another 50+ woman keeping the wheels turning. 😬

Oh I'd never reveal anything private.

I was thinking more, how is it we don't hear more complaints about helping parents with life stuff. I do think the answer is that they place more value on family, are willing to accept quirks etc and to be fair, are probably less lazy than me.

Vcal seems like a fair rant to me. I think of it as unpaid work too. Someone here said that in a bigger family, the elderly parents is like a hot potato being chucked round. That's exactly the kind of thing no one can say IRL.

@EmmaEmerald my dad was in his 90s before he needed any help. An uncle family was coping just fine until he died of a sudden heart attack at 90. I assume that people who don't complain either have parents like that or they have already died. Because I'm sure they aren't like us 12 months ago with 4 all an hour(2 each in opposite directions) with significant needs and refusing to be sensible.

Dad's still with us. Fading, but palliative care gently warned me that even without eating/drinking, he could rally again like before and just to take each day as it comes. He was weighed yesterday, and has lost 5 to 6 stone since September. He doesn't look like Dad anymore. He's settled a little better, but nursing home has had a lot of new staff start this week and a new nurse was on all day today which isn't ideal but out of my control ... swings and roundabouts still. I'm still struggling with him being there and my gut instinct is to bring him home now for this part and leave DH holding the fort at work. DH's OK with it, and has said whatever feels right but I'm not sure. I think I'd be struggling with this bit wherever he is in truth.

Badger I absolutely hated the time dad was home, but you might be better suited to doing this than I am. Will you have much help?

I am unclear what Macmillan nurses or hospice at home will do. My best friend's dad died in a different part of the country, was at home last two months, and they said the Macmillan nurses were brilliant. He had a hospital bed in the house.

but when I approached MacMillan about my dad, they had no one available.

Sorry, hit send by mistake!

there'll be other people you can talk to about having your dad at home but there doesn't seem to be national co ordination of this kind of stuff.

I’ve popped into this thread once or twice but I am finding it really difficult coming to terms with my DF’s dementia and keep trying to bury my head in the sand.

How do you know when the time is right for a parent to move into a home? DM is caring for DF at the moment but she is struggling and said she wants him to go into a home, he is confused every day but does has moments of absolute clarity every day too, he can still do his own personal care but does get confused about if he has got dressed or not and will frequently change clothes, cannot make himself anything to eat or drink and does have falls so needs constant care.

Sleep is an issue as he wanders a lot at night and can cause a bit of chaos switching things on and moving things about but DM has refused to look at sleeping pills for him due to worrying about him falling and injuring himself if he tries to get up while still groggy.

We try to make sure DM has breaks but she is now saying it’s not helping because she has to come back and deal with it again.

We are still waiting for the outcome of the financial assessment to provide respite care or carers which was started 8 months ago! Can DM just say she care for him and they will move him into a care home? They don’t own their own home or have any savings.

Ratty hopefully some posters can advise on the social services bit.

but if your mum can't cope any more, who can blame her, it certainly sounds like time he went into a home.

have you or your mum talked to his GP? Does he have capacity?

@EmmaEmerald, thanks for replying, on a good day, I would say yes, he does have capacity but he seems to vary so much and can change from hour to hour.
He cried a couple of weeks ago saying he didn’t want to go into a home, I told him we would look after him, but I feel so guilty knowing that day might be coming when he does still understand we are putting him in a home.

Sorry you have found yourself here, a lot of us have been through what you are. It sounds like your DF is not far off needing 24 hour care. However, social services most likely will want to try a care package at home first to see if that helps. It doesn't sound like it will if he needs night time care, has he had a care assessment recently? If he is potentially wandering at night and causing potential danger then I would imagine he would qualify for full time care in a CH. I would get in touch with the Older Peoples mental health services if you haven't already and tell them how bad it has got.

Thank you OnthePiste, we had an assessment in May where they advised a package of respite care as he was not too bad then but we are still waiting for the financial side of things to be sorted to access the respite.
I will contact ASC and ask for another assessment.

@Rattysparklebum my Mum has now been in a home for 2 weeks after having a fall and ending up in hospital. Prior to this my DF(82) was her main carer at home. The change since being in the home is unbelievable. She is joining in with activities, getting washed and changing her clothes, most importantly she seems happier. Mum is a falls risk & Dad reluctantly accepted he wouldn't be able to manage if she fell at home. Mum is self funding so it was down to us to arrange but from what I've been told Social Services will need to do a care assessment for your Dad and your Mum will have to be very firm telling them she is no longer able to cope.

Thank you seanbeanmarryme, I’m glad your DM has settled in so well, I hope your DF is ok too, it must be hard for him as well being on his own.

Thank you @Rattysparklebum. It's been a really big decision for him to make and he said he felt that he had betrayed her. I think he now realises perhaps she should have gone to a home earlier, but he did what he thought was best for her and I could never have coped like he has done over the past few years. Dementia is a horrible disease for the whole family.

my mum has been in a care home for about six weeks. It was a really difficult decision to make but in the end even with a care package at home up to 20 hours out of 24 it was too much for one person to manage and it was the constant worry and stress of it all.

Now she is in a home the stress and worry is much reduced
We do feel guilty about putting her in there as she always said she didnt want to go into one
But sadly the fact of the matter is she has alzheimers and vascular dementia which over the last 18 months has got worse and worse to the point it was no longer safe for her to be at home
in reality she probably should have gone in sooner
She has now list her mobility so they are using hoists and her speech and understanding is rapidly foung sadly. If she was still at home I feel she would have been bed bound just sont have hoists etc at home
It's a really difficult decision and I don't envy anyone having to make it. Dementia is truly awful all dignity is lost

@Vcal2017 hearing you loud and clear. 'Care' is a doing word and by God it does us in.

Hi all, a longtime lurker here who has been trying to glean some advice on how to deal with the likely rather imminent decline of my dad (who is a very difficult man indeed). I can't tell you enough how valuable it has been to read your experiences.

So sorry if this is not directly applicable as I know a lot of you have very significant care responsibilities. However, my mum is a lot younger than my dad, and my grandmother on her side is still alive and in her mid 90s. She's lived alone, no signs of dementia (and gone on many dates with younger men!) until a health scare in November. I've been slightly blindsided by her fast decline, as naively I expected my dad to be first in line. She's now in a respite home, has multiple heart issues, and also appears to have some sudden cognitive decline (telling everyone she wants to die, including on Christmas Day when my parents, cousins, relatives, etc were there, and holding on to them begging them not to leave).

I'm an only child, and to make matters more complicated, I left my northern European country for London 15 years ago (my family is still in the European country). I consider the UK home. I then moved to a country literally on the other side of the world two years ago. I am now - at best - three flights and a three hour drive away from my grandmother. I desperately don't want to be the person who left all responsibilities to the people in my home country.

I'm friendly but not particularly emotionally close to my mum. I've tried to use the advice given on this board to my mum over the phone. But it's incredibly hard going and my mum just says 'it is what it is'.

Sorry - I guess I'm not asking for practical advice as such, but more if there is anything I can do from an emotional perspective while being so far away. I expect this situation will be similar, but worse (as I have no intention on returning to the country I was born in), when my dad eventually starts to get more infirm.

Thanks all for listening - I was very close to my grandma (closer than my mum), so this all feels heartbreaking.

Nevth "I desperately don't want to be the person who left all responsibilities to the people in my home country."

Only advice I can give is, don't feel guilty. You're far away enough for it not to be your problem, so why feel guilty?

Another thing may be worth saying - don't question the decisions of those doing the daily practical stuff, or make helpful "suggestions". My sister is around for mum about once or twice a week, and even then I get annoyed with the "Oh I've had a good idea, why don't you do xyz". Like I haven't already thought of it, being the main one in charge.

likewise, if you aren't moving back and won't have to deal with your dad, why worry about it.

we all have good and bad luck in life. Don't spend ages thinking about the burdens of others, it doesn't help them or you.

*once a week or fortnight, that should say!

I agree with @EmmaEmerald be careful about making suggestions. One of my brothers lives 5 hours away and is very free with telling those of us closer (but still an hour away) what we should be doing.

Feeling very down today and burst into tears on the phone to mum
sometimes the elderly parent stuff is just the last straw

does that make sense to anyone? I would have managed to just get through the day but talking to her - she immediately started talking about a task I haven't managed to do yet, while repeating "no urgency" and I just got really upset.

I have reminded her that I'm years into suffering A&D but I think there's no shaking the illusion some people have - that as long as you look like you're okay, you must be okay.

sorry, I realise this crosses over into mental health territory.

I'm shuffling back awkwardly hoping you can all overlook my dramatic "I can't cope" flounce a few days ago...

Not sure if this is a sanity check request or a hand hold: basically, after a couple of weeks in an assessment centre, DM returned to cognitively as good as she gets (cracking jokes, making conversation) and she was returned home with a 4x care assessment package last week. However, within 48 hours she returned to the state she was before going into hospital - poor cognitively and physically.

Carer saw the dramatic drop in condition and wanted to call an ambulance, I declined on the basis this was not new and was not a life-threatening situation, and generally she has bad and not so bad days and would improve in a day or so.

I'm calling her GP tomorrow morning, but in preparation I went through all the discharge paperwork from the hospital in detail to note one of the doctors thought mum may have Lewy Body Disease - which I looked up. It explains a lot, and she ticks virtually every box on the NHS list of symptoms. I'm rather cross that no-one thought to mention this to us, save one short line in the midst of sheafs of paper, and prepare us for what to expect. So my plan for tomorrow morning is:

• Speak to GP and ask for medical support for this diagnosis, and a realistic discussion on her outlook given the recent rate of decline
• Ask GP to ask for an urgent repeat social/OT assessment to see her as she is at home and not in hospital when they've brushed her up. Carers said this had to come from the GP and not through them as we've not been through the care at home assessment yet. In hospital she managed fine getting out of bed and could walk with her stick and was allowed to get up and move around unsupervised. At home she's basically bed bound and needs assistance to move around.

TL;DR version - is it "normal" for dementia patients to display such marked difference in condition between home and hospital? And are there any specific questions I need to ask the GP?

I'm stuck here at the moment - the carer agency said as they can't execute visits safely with one carer then either I stay to help them or they call an ambulance and say she's unsafe on her own. Not keen on another cycle of hospitalisation if we end up here again unless its our only option to get the help she needs. Plus pressure on NHS, it's a social care not medical care issue etc etc.

@funnelfan have a hug. Lewy body dementia is a barstard disease. Work colleagues dad had it and he had to go into a home very quickly due to his hallucinations.

Oh goodness funnel! (Sorry not ignoring other posts but yours feels most urgent.)

Speaking to the Gp tomorrow seems best but rather than focusing on the LBD as the headline I'd focus on the fact that she has already deteriorated past what the care package put in place allowed for and that you're filling the gap but will have to leave soon.

Does it seem as if a nursing home might work better now? But yes do mention the LBD as part of the issue.

Tbh if she was better in hospital why not let the carer make the call?

funnel "I'm shuffling back awkwardly hoping you can all overlook my dramatic "I can't cope" flounce a few days ago..."

please think nothing of it. I've been months without looking or posting.

I am sorry to hear of the situation. I think the focus should be getting her into respite care to get you a breathing space to decide what happens next.

I don't know about dementia but one thing struck me right away. Was she better in hospital because of the bright light? Our brains work differently in bright light, so I wondered what the home lighting was like.

I have SAD to some extent, and really notice lighting differences in every place - home, shops, public transport, offices, everything. I think the brain relies on light for a level of cognitive function.

I really hope you can get something sorted soon.