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.

I ring before I go just to check that MIL will be there and isn't in hospital. I'm family enough to visit every week but not family enough to be told when she's been admitted. They've been closed to visitors because of a covid outbreak, I read the guidance and she can still have one named visitor throughout an outbreak but that's not me.

Bit of a dilemma here re FIL. Diagnosed with life limiting lung condition in October. Hospitalised last month, needing oxygen. Was working with physios and Occupational Health with view to going home. Developed UTI, in a lot of pain and largely incontinent, now in a smaller community hospital. He wants to go into a care home. Says he doesn't feel safe on his own even with carers going in, and moving into flat nearer us that we found, enabling us to see him much more often (this would still be option I thought DH had pulled out of the purchase but he held off). However social services and medical staff really believe he would manage ok with this set up.
Prognosis is 3-5 years life expectancy. That's from Dr Google still no sign of appointment with consultant who specialises in the condition (if you remember he was wrongly referred to oncology)
With £308 pw available he would have to be topping this up and frankly the money would run out. Presumably at that point Social Services could insist on him moving somewhere cheaper.
Should we be trying to persuade him to try being in his flat and be able to move to one of the nicer homes we've found maybe a year down the line with a view to having the funds to be able to see out his days there? Or do we go with his wishes now and stop worrying about what ifs?

Should add what kind of questions did you all ask when choosing a care home? How do you ensure the best fit?

Having had DM in 3 and MIL in 3, my go to Q is ‘how long has the manager been there and can they demonstrate a well led, trained and settled staff?
If the answer to that is positive, then go on to the next set of qs. If not, keep looking.

You also want it to be reachable by public transport so they can recruit and keep staff who don’t need to get taxis early in the morning for change over.
Once you know the staff situation is good you are free to progress…

@chesterelly1 if he sells his flat would he have the money to cover 5 years plus? (Sorry if you've already answered that).

No we've taken that into account

Re visits my mum cant remember who has visited from 1 hour to the next so is always saying no one ever comes to see me which is sad as she is having a fair amount of visitor's

chester I've only known of one person whose money ran out and Social Services kept her where she was to avoid upheaval and distress. But she passed a couple of years ago and things may well have changed.

speaking of no memory, I'm afraid I stopped visiting that lady when she told me - crossly - that I never visited. I went twice a week.

I found it quite distressing for a while tbh - so once I realised she wasn't even registering my visits, I stopped. That time period crossed over with dad dying and I couldn't cope. She was a lovely friend and neighbour but she wasn't really "there" any more. She had other neighbours visiting - her only child predeceased her - and one of them did once a week and reported back that it was always the "you haven't visited for months" conversation.

@chesterelly1 our experience of one of the posher sorts of homes was that they wanted proof of a minimum of 3 years' fees in the bank before they would consider taking dm. At the point we were asking, we hadn't completed on DMs flat so they just turned us down. No idea if that's typical.

Possibly he could try a respite stay? He might find it's not what he thinks and would consider going back to his flat?

It sounds as if your father in law still has all his marbles, so what does he say when you lay out all the financial facts to him?

So in spite of mum's recovery going well, this afternoon she said to me "I have a feeling I don't have long". I think the same. I can't bear that I have to lose her, but I don't want her to have the miserable EOL her brothers had.

so we had the funeral chat, she is fine with whatever, but suspects we'll hear a lot of griping if it's a direct/private thing.

She's got a hospital follow up which she said she could attend alone but it turns out she doesn't really remember what happened in hospital.

Sorry full on day yesterday. We have found somewhere that has a residential home and care home on the same site. Decent size rooms so FIL could make a little sitting area separate to bed area. Very helpful, knowledgeable staff. On a bus route. FIL could be in residential to start with and they would assess and advise if and when they thought care home more appropriate. In residential he can still have the oxygen that his condition requires him to have and several residents already have visits from district nurses and other health professionals. And it is v reasonably priced compared to some so I think the funds could stretch enough. He is aware of the financial implications but is very head in the sand about money running out. But tbh this feels so right I'm prepared to stick my head in with him. Fingers crossed for a space everyone!
Paying for having a day off from visiting DF he's been on phone several times Getty shirtier every time. Probably a sign he's getting better. He was moved from hdu to ward. DH is having day off travelling to visit his dad, as he's in the smaller hospital in his hometown now there are a few extended family and old neighbours who want to pop in. DH is coming with me to see mine. I think he's ready to be bad cop about arranging proper occupational health assessment before this discharge etc so I can avoid the vitriol of last time. So once again fingers crossed!

Dad's been in the hospice since Saturday, and Monday we all thought was his last day. He was in bed, mouth open and barely breathing. Was awake all night expecting the phone to ring any second. Went in Tuesday, he's sat out of bed in a chair, having a Fortesip and being the grumpiest bastard imaginable with the nursing staff. So much so that after 5 days, they've said he's not an appropriate admission there (only 18 beds I think) and that he needs to be in a high dependency nursing home. I'm torn between relief that they've got on top of all of his symptoms and he looks/feels better; and pure bloody anger with him that his rudeness and temper has meant that they're not prepared to have him there They're having an MDT meeting today and will ring later but I think their goal is to move him within the next 48 hours. I feel like walking away today and letting him face the bloody consequences of his behaviour for once. I know he's scared, and he's not in control of anything anymore but his attitude is frankly shit. And what scares me the most is them finding him a home who then can't manage him.

I want to get off this merry go round, thanks, I never bloody asked for a ride in the first place.

Oh Badger it is merciless. I'm afraid I've no advice other than take this 48 hrs while he's still at hospice to take some time out. I mean he's clearly in good hands. Do whatever it is that gives you head space and fortify yourself for what any change in care may bring.

@chesterelly1 On care homes it is a leap of faith. It's also about making the least bad decision as well. With all the ones I've experienced, there's been a six week 'getting to know you/ us' clause where both parties can approve each other. So if it's not the best fit, you can easily move him. But it sounds very positive and won't come to that. The most expensive is very often not the best.
It's just so tiring when you are running to stay still and being pulled in every direction.
@Badger1970 I agree about the next 48hrs. Leave him to it while you get catch up. He's safe and being cared. Looking positively he's frail so there's a limit to the chaos he can cause. Don't get too worried that he won't find a home. A nursing home will take him although it won't necessarily be cheap. Care home professionals have seen all sorts of behaviour caused by being frightened and lack of control. They will rally round you, especially if you are up front about his challenges, and face it with black humour. When the roller coaster is going full spin in the wrong direction, black humour is the way to go, it replenishes your teflon coating that has been scraped away with over use.

Badger I can only empathise. But honestly, I feel every word you said. My dad wasn't a difficult patient. But the rest, I totally get. It's very odd being resentful when someone you love is dying. I wish I'd been around less, that's one piece of advice I do have.

ironically, after my post yesterday saying mum thinks she hasn't got long, today she seems very different. I think one of the worst things is not knowing if you're trying to plan for ten days or ten years.

@Badger1970 what a roller coaster. Only one that mostly drops downwards or sickening jolts sideways😣i remember you crying with relief when he was admitted. Try to let the tears flow when they ring. Let them know what this burden is like.

@chesterelly1 that sounds so hopeful. Fingers crossed for a place.

@EmmaAgain22 so true. I can't face the idea of years or even months but DM has already been in this home over a year. We were told in the early days she would almost certainly die by last April. I was convinced she wouldn't see this Christmas but now she probably will. It's very hard, for her and us.

with care homes with our 3experience with mum the all singing all dancing most expensive posh ones are not always the best
We waited 4 months for a place at one for my mum with her dementia getting worse. She was then assessed by them and they refused to take her
I would say her dementia is moderate to severe they claimed they had no one like her there !!! They said she has seperation issues as she was calling out if she couldnt see someone didnt remember they were there
Didnt like pets so couldnt go there as they had dogs visiting but in my opinion they just dont take the dog in room she is in
Also apparently because once a year ago she clawed at her face she has mental health issues!!
she is very gentle and living and not violent or aggitated in any way can barely walk so will hardly be going anywhere
At this push home dementia patients are upstairs though they claimed they came down sometimes to join in activities but I wonder how often
We have also heard that there are no council beds in these homes when money runs out so if you the family cant pay the full top up I would suspect you wouldnt be able to stay they wouldnt admit this
Shame on them as this is a dementia care home an old peoples home and a nursing care home with spa room hairdressers cinema room lots of activities etc but they wouldnt take my mum who has mixed dementia quite why I'm still figuring out just said she wasnt a good fit and they had no one like that!!!
Yet the older cheaper scruffier care home took her no hesitation. She has been there a month so far no problems and they seem tobe dealing with her fine she is clean loved well fed and cared for
So yes please beware of these posher homes as that was our experience I think the word care was missing out of the equation sadly

I'm finally sitting at what I devoutly hope will be my Mum's deathbed in her nursing home. All peaceful and playing carols very quietly. I feel very lucky. Only by screaming and crying on the phone was I able to stop them sending her to hospital- i couldn't bear the thought of it and it would have been futile. Not to mention hospitals at the moment are more than a bit stretched even before the nurse's strike. Maybe she will be free by the morning.

Oh@PermanentTemporary, sending a 🤗 for you and wishing your DM a peaceful rest.

Thinking of you and your mum, PermanentTemporary

a friend lost his mum at the weekend - she was over 100. She had a doctor there, in her home, and was given oxygen and something to make her more comfortable. I have no idea how one makes that happen though, at some point I will have to find out.

@PermanentTemporary thinking of you and sending love Xxx

Wishing you both peace @PermanentTemporary

@PermanentTemporary thinking of you and your DM

@PermanentTemporary sending you a big hug and strength for your vigil. 🌺🌺
you have fought so hard for her.