Cockroach Cafe 🪳Autumn 2022 🪳

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.

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.

@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 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.

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.

@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.

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?

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.

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.

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.

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.

@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.

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.

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 @funnelfan and @countrygirl99 I feel your pain. You have my sympathy.

Last week DF and I reviewed his will. He wants to make some changes, which is fair enough. Some of the charities he listed no longer exist. My DDs are now in their 20s so whilst my not-so-D Sis and I are executors, instead of my aunt & uncle stepping in if either of us can't do it, it makes more sense to have my DDs. Aunt & Uncle are in their 80s now too. However, stupidly, DF told not-so-dear Sis that he would be speaking to a solicitor tomorrow. She has completely gone off on one. DH, DD2 and I ate dinner with DF this evening as all her WhatsApp messages came in. DF is furious with her. I wrote replies to her over dinner which were blunt but honest and she went quiet. Since I started typing this, 5 further messages have come in. Why the F did DF tell her anything? I think she is being manipulated by her scheming DH but can't prove anything (DF thinks this too). My DH refuses to get involved unless my DF asks him outright. DF is starting to realise that my DH is the one that probably has his back. If she carried any of the burden, I would be more sympathetic but no, she carps from S Europe but does nothing practical.

Sending good vibes out to funnel, I know she won't see this but it's important.

mum seems more normal than yesterday. It might be that she's behaving oddly because she's adjusting to different circumstances.

@OnthePiste sorry for your loss x

Mum's dementia has moved up a notch. Mongst other things on Tuesday she told DB2 she wasn't sorted for Christmas yet. She spent it with me

Oh god, I think I'm going to have to step away again from the thread. Three weeks of mum in hospital, settling her in back at home and getting everyone used to the new drug regime, new sets of carers, liasing with pharmacists, GP surgery, council care team... the usual stuff. I'm mentally exhausted and thankful that I had this time off work and worrying about how I'm going to continue to fit it in when I return to work next week.

I had been giving myself a talking to on my drive home, to pull myself together. Triggered by seeing the carers leave mum a glass of water - she hates plain water to the point she will go thirsty rather than drink it. It got me sad that although everyone is kind, no-one cares for mum in the same way as me and DB, and only we seem to notice this sort of thing. She even said today that I know what she wants or means even before she does (she has mild aphasia), and when she can't find the word she wants for a third party like a doctor she just points at me and I have to "translate". I have to keep saying to myself that I'm not an extension of her, I have my own family and life and I have to live it for me not her.

Knowing that so many of you have had months and years of this, and it doesn't get better from here on in, is just overwhelming at this point. I'm already getting physical stress symptoms which isn't a good sign for my health. I salute you all, send you best wishes and I'll be back when I'm able/I've pulled myself together.

@notaflyingmonkey good to see you! V interesting reflections from you and @IthinkIsawahairbrushbackthere about the impact of caring and trying to make elderlies contented.
I am trying v hard post cancer treatment to hold my boundaries and feel v fortunate I got carers/ cleaners/ gardeners in place and also that dm has funds she can pay….
but last years treatment is long forgotten( no dementia) so I have to remind her….
@Badger1970 thinking of you. 🌺

@DahliaMacNamara it used to drive me to distraction the way that my DB just didn't take on the load that I did in caring for DM. But on reflection, we are just hardwired differently, probably due to gender roles. Like your SIL I tied myself in knots trying to do everything, which was impossible. I'm not unintelligent, but it has taken that distance for me to see that I kinda brought a lot of that on myself by trying to achieve the unachievable.

@notaflyingmonkey that isn't woo at all. It makes perfect sense. One of my friends said that it took her two years to recover from six months of caring for her mother. Mum went into hospital 18 months ago and it is only now that I am starting to feel myself again.

Condolences, @OnthePiste . The more immediately demanding stage being over won't make the loss any easier emotionally.
And @Badger1970 , it's a a heavy burden to carry. I'm sorry things are so difficult just now.
On the subject of Victorian daughters, I worry about SIL's mental and physical health. DH's too, of course, but DH can focus on dealing with practicalities and admin, and outwith emergencies guards his rest times quite forcefully, whereas SIL has more fixed ideals and ties herself into knots trying to reach the impossible state where her mother will be contented, if not healthy. Frankly she has never been contented as long as I've known her.

Sorry for your loss @OnthePiste

I haven't been on this thread for a while since I lost DM in Oct, but it was a source of great help to me when I needed it.

The stress of trying to be the archetypal Victorian-era daughter that does everything without a word of complaint is something that very nearly broke me. I wish I had stepped back much earlier on and put things in place that could be outsourced as I stopped being a daughter and really became a carer/cleaner etc which was an impossible scenario.

The physical and mental effect can't be underestimated - I have been ill since mum passed away, and without wanting to sound woo, I do think my body and my mind needs to go through a period of adjustment as well as mourning.