Cockroach cafe - Spring in autumn

[GnomeDePlume]

A new thread for those of us dealing with elderly family members. All welcome.

A place to rant, discuss, vent, decompress. No judgement just solidarity.

My siblings are leaving at 9. Ha.
No all nighter for them!
Fuck it, I'm having a drink 🍸

Yeah but that's someone else's pot of money so they dont care.

@CrazyGoatLady if I hadn’t experienced it myself I’d find it hard to believe the logic. The NHS has been taken over by KPIs and tick boxes. A ward may be rated on discharge rates and not readmission. No joined up thinking that it’s costing the state/taxpayer less overall to ensure safe, long term discharges let alone the comfort and dignity of the patients themselves. It’s a disgrace that families have to fight so hard for sensible solutions.

If as a family we couldn’t afford to pay for DM’s care home ourselves I’d hate to think of how many cycles of fall/readmission she’d have had with them insisting she’d be fine at home with the care visits. She probably wouldn’t be with us now - which may be a mixed blessing considering she’s not getting much enjoyment out of life, but at least during the last 13 months she’s been cared for 24 hrs a day and has had her dignity and comfort.

I think it might be c diff

@CrazyGoatLady that's actually heartbreaking about the consultant recommending a nursing home and the discharge team sending her home.
I can't even talk about the state of DER cos i will cry. He has been lovely all his life so this last fortnight he has had at least four nieces/nephews and a cousin visit him.
Hugs to you all.
💐

@funnelfan absolutely no joined up thinking at all. DGM needs nursing as well as social care as she now has end stage heart failure, poor circulation causing oedema and leg ulcers. They can provide nursing care for this at home, but that would require NHS Continuing Care funding, which liaison cowbag told DF she doesn't qualify for. Private nursing home is an option of course, but will mean selling DGM's house. We're not unwilling to do this, of course, but some private places won't take you unless you can prove you have the funds without having to sell a property first. We're not in a position to pay as a family. DF's house is badly in need of repairs and oldest DS goes to uni in September. DSis getting married in July, DB disabled. It's brilliant you've been able to do that for your DM and I really wish we could, it would solve a lot of problems.

@ThunderFog sorry to hear things are so hard for DER and thank you for the kind words 💐

@GnomeDePlume thinking of you again today.

I have been relatively quiet the last few weeks because things have been stable and DH picking up the majority of visits, but looks like we’re on the merry go round again.

Multiple phone calls received last night whilst we were at friends enjoying dinner - they seem to have the uncanny knack of always phoning when we are out. Apparently DF is not well and DM had to make his dinner ( she is mostly bed ridden and he has been doing the cooking for last 8 months). I mean obviously we will go up - DH today and me tonight if needed for DM and then tomorrow- but my overriding emotion is exasperation. The carers should be preparing their food except DF won’t let them, but why not ask them on one of their four visits in the day to microwave something rather than struggling on . If DF needs to go into hospital then DM can’t really be left on her own overnight. I have recently started my new part time job and it’s giving me a bit of relative sanity, I have said to DH I can go up Sunday and Monday nights if needed but after that I can’t.

I want to use this as the opportunity to push them into a care home. They have more than enough money for it and I am just so tired of lurching from crisis to crisis, when these are things that could be easily managed in a home where they would be fed and cared for.DF may not want it, but his wants need to be balanced against ours. I know I sound selfish but I don’t even care anymore, it’s been so nice having my new job and having a sense of purpose and structure to my life, I can’t lose that.

@rookiemere well done on your job and getting some structure back so you can set some boundaries.

Is there any extra care housing near your DPs? I wondered if that may be more palatable to DPs than a care home as they'd have their own flat and therefore some semblance of independence, but there's always carers on site. Some can even do nursing care if and when needs increase.

@CrazyGoatLady thank you.
They are really past anything but a care home and a move anywhere else would only be temporary. They have council carers that are meant to do all sorts for them already but don’t and there aren’t many aspects of their lives where they are genuinely independent.

DH has gone up, I am staying back allegedly to keep the dog out of the way. I will go up in the evening if DM is alone.DF is 92 so there is the possibility that this is it and then I will feel
horribly guilty about my meanness.
It doesn’t help that we both had quite a lot to drink last night !

@CrazyGoatLady i hope you get DGM settled soon. We can only pay for mum on the basis we’re subbing her until we can sell her house. And fingers crossed we have no unexpected events requiring dipping into our fast disappearing savings. We’re in the fortunate position of working in well paid jobs with no mortgage. We were intending this time of life to be maximising savings with an eye to retirement, but there you go. I know we’re in a much better position than many others. Don’t get me started on threads where people are actively arranging their finances “to avoid care home fees” without understanding the choices that they’re depriving themselves of in the future.

Actually, I think that’s the point that still rankles with me. Mum was always going to be self funding, so it would have been no skin off the nose of the LA to say, yes we agree she needs full time residential care and help us identity a suitable place. Whereas had she gone home like they wanted, her savings were about to dip below the £23.5k limit whereby they would start to contribute to the carer cost. So they were actively pushing the option that was more expensive to the State and would have involved more risk to mum. Bonkers. To be told that if we didn’t accept this solution we were on our own was horrifying at the time. I still thank whatever Guardian Angel was looking over us when I rang her home and they said yes they had a vacancy and yes they could take her - they usually have a waiting list being one of the few rated “outstanding” in the area.

So things have moved on at pace since this morning. DF and DM should both be getting another assessment either today or tomorrow by some member of the medical community. DF had another fall on Friday night and apparently got up and got dressed in the night thinking it was morning.

DH has convinced them that it’s time to go into a care home, god I love that man. But that in itself isn’t simple and I need to gather all their accounts etc. to confirm their net worth before anyone will come to visit them and it may be a week before anyone does the initial assessment .I suppose at least we’re on the right track now.

This cockroach cafe was suggested to me in another thread. Thank you for recommending it. Can I get some advice please on how to handle a new situation with my aging mother. She's in her 70s. For the past 4 and half years approx I was noticing stuff that's odd about her. It's behavioural things and emotional responses. It's comprehension and executive functioning. There's a lot of things are are odd and concerning.

I suspect the possibilty of dementia. Maybe a behavioural type because her memory can still be good although there was a recent incident that suggests otherwise. There were other incidents that could possibly indicate memory issues but it's vague and subtle.

All my siblings live abroad. They know I am concerned but they write of my concerns. They don't understand what I am dealing with and going through. And our mother can still hold it together in front of them when they do come home. They would like to see a mother who is forgetting where the milk lives in the house before they see a problem. When that's not how it works. She's at home, in a familiar environment doing routine tasks. She's not going to be forgetting about where the mild lives for some time to come.

I did talk to her GP but I got nowhere and they asked me 'is there any memory loss'. Memory loss really wasn't what I observed at first. There is an incident or two that is questionable. But she can still remember a lot.

Anyways, I am observing a new behaviour from just this week. Sometimes she likes to have tuna for lunch. It's from a tuna can. She likes the small tuna cans in sunflower oil.

Twice this week I observed her standing at the kitchen sinking pouring the oil down the sink.

She knows oil doesn't go down the sink but here she is now pouring oil down the sink.

It's from the small tuna cans so it's only a small amount. At a guess maybe about a tablespoon of oil that sits in the sink.

I mentioned (softly) oil doesn't go down the sink and I suggested pouring it onto some kitchen paper and throwing it in the bin. All she did was get defensive and told me that she never puts oil down the sink and it's fine when you pour boiling hot water over it.

I left it at that point and didn't reason with her any more.

Oil and water doesn't mix. I know it's only a small amount of oil but surely if she keeps doing that it will all add up and will eventually become blocked.

There was a sink blockage last week but I wasn't aware that she was now doing this new thing. I never knew what cause it.

So how do I manage this new behaviour:

Do I maybe buy tuna in spring water with the Tesco grocery order and say nothing and pretend it's a substitution from Tesco and maybe get her to try it. I don't know if this will work. Her foodstuffs is limited every week and she's extremely rigid and will only stay with what she knows. It's doubtful she will even like a new and different tuna in spring water.

Or do I get a sink unblocker and use it a few times a week at night time in the hope that it prevents the sink becoming blocked.

The thing is, if the sink was to become blocked she would have no awareness as to why. She wouldn't be able to comprehend that it's her pouring oil down the sink.

If it's not oil from tuna cans she likes hard boiled eggs and most of the shells she chucks down into the sink.

Easy one first - sunflower oil on its own won’t block the sink. If it’s liquid at room temperatures it won’t solidify in there, until other fats like butter or lard that people dispose of inappropriately when they’re hot and liquid. I’d be more worried about the fishy smell lingering - if you shove a generous squirt of washing up liquid and hot water down the plug hole that will disperse it very well. The washing up liquid disperses the oil in the water. If there was a blockage the culprit was far more likely to be the egg shells. Let her have her normal tuna.

Bigger picture - it sounds like your mum has mild cognitive changes. It’s definitely something to keep an eye on - but what differences would you like to see in your mums life? Unless there’s a physical reason that could be treated, it’s not going to improve. Use this time now to have conversations with your mum about what she wants her life to look like as she ages and needs more help in the future. Hint - an acceptable response is not that you are on call 24hours to deal with any emergency, either perceived or real. Get her to do a finance PoA asap - a health and welfare one world also be useful but the finance one is the one to prioritise.

Just another point on DPs. When DH rang 111 to get a new urgent assessment for DPs, the lady said “Isn’t it about time they were in a care home?” based on I think DM trying to call them yesterday and not being understandable plus possibly the carers input. Grrr - they would have been in a care home months ago if any medical professional had said they needed it - which they definitely did.

Thankfully DH is much more quick witted and outcome focused than I am when it comes to DPs and said “Yes if you can get whoever comes to see them to say they both need residential care, then they will accept that.”

Anyway I just hope DF doesn’t change his mind. DH says he has deteriorated very significantly since he saw him last on Thursday when he uncharacteristically remembered all the details of the Probus club meeting the day before. I have to sort all the paperwork out tomorrow, I will go up on Tuesday.

@TrayofRoses good advice from @funnelfan there about the sink.

I've been pouring oil from tuna cans down the sink since I got married, fifty years ago.

Anyway. I wonder if what you're seeing in your mum is fronto-temporal dementia. This generally has behavioural changes and difficult mood swings as a feature, rather than memory loss. Memory loss tends to happen later in the process.

It isn't helpful for your mum's doctor to dismiss you and her because there isn't any memory loss.

Well, there isn't yet.

I agree that you need to get the POAs sorted out now, while your mother still has capacity.

@rookiemere I'm so glad your new job is going well, after all the chaos before Christmas.

I'm also glad that you've ALMOST got a care home sorted out (well - you're on the right lines) and I applaud your DH.

Thank you @TheBroonOneAndTheWhiteOneits starting to sink in now and hopefully soon the worst part of this will be over. I was so worried this morning about what direction it would take.

@funnelfan you are so right on the will amending. Honestly I would rather not receive a penny of inheritance and am so grateful that now my DPs have agreed to move to a care home, we can move as swiftly as possible into a decent care home of our choosing where they can both be together. My friend is in a dreadful position where her DPs set up some sort of trusteeship for their house which has gone horribly wrong as the company appears to have been crooked and it’s adding additional stress and complications at an already stressful time.

@rookiemere we had a will writing company rep round who tried to persuade us into putting the house in a trust. Luckily we'd already been through the financial assessment a couple of times and so knew he was talking inflammatory rubbish to scare us into spending a lot of money to set it up and sent him packing. I can imagine they snare a lot of people. A friend has just bought a house that was put in a similar trust. House was empty and they were moving out of a rental and it took 5 months because of needing signatures from the trustees who didn't rush themselves.

@TrayofRoses I agree with pp this is the time to get the paperwork sorted e.g. LPAs, Wills, funeral plans, understanding finances etc.

As you say in a familiar environment your DM will appear to be managing but in unfamiliar ones any cognitive decline becomes more apparent. Don’t underestimate how well she is covering up deficits.

I would be asking the GP for a referral to the memory clinic including an MRI. Early identification gives her more options.

I am so glad that DM is self funding. Social Services have never been involved. TBH the hospital didnt much care. They were just glad to get her out.

Will writers pushing trusts are a menace. Unfortunately people dont understand what lack of choice when it comes to care home means. I live in a large county, a local authority funded care home could be on the other side of the county. Wouldnt have made a lot of difference to me as I drive but would have been a nightmare for DB who doesnt.

The most we will do is make sure that our assets are shared between DH and me so that we will both have some funds to pay for care.

DM today was basically asleep today, even when she woke up a few times she was asleep with her eyes open.

I have similar with DB. He will not contemplate even discussing a DNAR for DM with me. Even the GP has offered to speak to him about it.

He often bemoans the fact that DPs did not put their house into a trust - SILs parents did this but for the 8 years his MIL was in a care home SIL and her siblings had the added stress of maintaining an empty house. The time is coming when DM might need to go into a home and I’m always mindful of my DF naming the home he’d like to go into when the time came (he was a regular visitor to friends in different care homes). It’s not the cheapest but it certainly wouldn’t be an option if social services were bearing the cost.

Even if she did go into one I’d still be having to sort out her bloody hearing aids. Most stressful thing in my life.

She has a will some now. I have no idea about funeral plans. She won't talk about it thinking it will be a long time away. I don't even know of she has a burial plot. I don't think she does. It's impossible to get her to do POA. I don't think she understands what it is. She pretends but gives a vague and apathetic response.

It's so hard.

I really feel for you, my Mum used every tactic in the book not to do LPAs. Fortunately she had a historic EPA, without that I don’t know what I would have done.

WRT funeral my situation was a lot easier. Instead of a direct approach could you try to use opportunities to ask subtle questions to find out favourite hymns, songs, cremation or burial etc. Do this over a period of time and build up a list of what she would like.

My in laws have gone for direct cremation… my MIL thought it would be good to tell me a week after my own Dad died. FIL has dementia so no say in it, but MIL says she’s doing it so we can not ‘waste money’ on a funeral and have a celebration after. I do consider it selfish as a funeral is a chance for the living to say goodbye.

not my parents so not my circus. Poor Dh is very upset about it, but MIL won’t be moved by it.

My mother's comprehension and understanding is so bad.

All my siblings live abroad. They are in Australia and new Zealand.

She watched the news all day yesterday and she knows there is war in the middle east and it escalated yesterday. She managed in her mind to put all my brothers at the centre of this and say it out loud to me. As if they are all sitting in Dubai's airport waiting to come home. They are in Australia and new Zealand and have no current plans to come home. Yet there was my mother putting them at the centre of the airstrikes that escalated yesterday.

This low comprehension. It's not a surprise for me. I have been seeing it for years. What is hurting me the most right now is everyone writing my concerns off and facing down this road of being an indirect part time carer without even a diagnosis.

In my mind I am already thinking that there is something and I am already learning about how to respond. In that I don't reason with her or correct her. Waiting for a doctor to give me a diagnosis and I think I will likely be dead from stress and stroke. My headaches, I used to have migraines once every few months but over the past year they have increased tenfold to weekly migraines and I have one all day today. It's all down to stress and being haragued from my mother. Her planning and organisation is so bad and there was a different incident this morning. I had a Tesco grocery shop booked for tomorrow but she decided that she would like to go for another online grocery shop with a different shop. She got me to check for a delivery slot but they were all taken and she found it hard to understand and it resulted in anger from her.

A lot of what she's doing can be very neurogical. I have experience with autism and it reminds me of autism sometimes. She can be very OCD and she was never like that when I was younger. This has only really emerged over the past 4-5 years.

She's paranoid about the tumble dryer causing a fire and she cleans out the filter every day but not only that she often puts half of her upper torso right into the drum to reach the back of the drum but there's no filter there. Just trying to dust it. But it's not a big machine and there's no need to half climber into it.

That's only 2 or 3 things I briefly explained here. I have a huge list of things.