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Carer for mum - New and saying hello ! - Carers UK Forum

Carer for mum - New and saying hello !

Tell us a bit about yourself here.
Hello all. I’ve recently joined so wanted to say hello.

My mum is 85 with various health conditions. She has end stage kidney failure, heart failure and has just been diagnosed with probable brain seizures. These are causing episodes of confusion rather than any fits or anything like that. She lives alone and I go every day to do shopping etc. She has carers twice a day - breakfast and tea. This is a help of course but doesn’t help with the confused phone calls.

I think it’s time to start looking at nursing homes for her. Her quality of life is appalling at home - she never goes out. She has bad arthritis and is in a wheelchair and is also depressed and can’t be bothered. She just wants me to sit with her and I have no life of my own.

Just wanted to touch base with those in similar situations
HI Clare, welcome to the forum.
My mum was housebound for over 30 years, gradually I did more and more, especially after dad died, and I had less time for myself and family. As my youngest son is brain damaged, that was extra pressure. Finally mum lost the use of her legs, and accepted that the only option left was residential care. A huge relief for me.
Choosing which home will depend on a number of things:-
Does mum have over £23,000 in savings?
Own her house?
Has anyone mentioned NHS Continuing Healthcare to you?
Do you have any brothers and sisters?
Have Power of Attorney?
Thank you. She is over the threshold for funding so will be self funding and does own her own home. I have a few in mind for visiting - it will at least make me feel I’m doing something to try and improve things for both of us.

Not aware of NHS continuing healthcare so will look that up. I do have POA
In that case, think about mum staying at home as long as possible, buying in extra care for her at home, to preserve the value of the house.
CHC / NHS Continuing Healthcare ?

Main thread :

https://www.carersuk.org/forum/support- ... inks-32532

Everything one should need to know ... the practice of which is another story !
Thank you - I’ll have a read. I understand what you say about staying home and buying in care but she has carers already. I have no family support, no siblings and I’m exhausted. The carers don’t stop the random constant phone calls and demanding attention

Also she just sits in front of the tv all day - no mental stimulation or enjoyment so I’m thinking somewhere with company/ activity would benefit her
Hi Clare
My mum (nearly 96 ) is in a residential home. She made the decision to go into one herself about 3 years ago. It is a nice enough home, quite large, and she thought there would be lots of activities, which there are but at first they were too 'old' or too 'boring'for her. Now sadly, her dementia has declined and she mostly sits in her room. I say this because at their ages and states of health socialising and activities are way down their priority lists. They do like just sitting, and moaning. And although there is company available just outside her door she still mostly wants or phones us. The phone calls are decreasing as she doesn't know how to use it any more.
So don't expect Mum to mix or be happy. It is enough to expect her to be safe, warm , fed and clean.

An alternative to residential care is to have a live in carer, or to up the care calls and times. Others in here recommend keeping her at home as that may protect her and you from having to sell her house to pay for care. It all depends what money she has and how long it will last. A residential home is circa £50000 a year plus extras, and the prices rise way above inflation each year.

A thought to put it into context is that year's ago a nurse told me that (assumng no health or dementia issues) the last two years of life tend to mirror the first 2. So after a stage of fierce independence and saying No to everything, falls and trips (the troublesome 2s) then infancy reoccurs with more sleep, soft food and always wanting just familiar people , mobilty decreasing too.

With your mum's diagnoses it might be that she doesnt have very long. on the other hand many of them surprise us and last for years. If she's near end of life then your local hospice may have suggestions, our local one does a brilliant hospice at home scheme with specialist sitters giving carers breaks.

It's not an easy decision whatever you decide. The phone calls can be diverted to answer phone, but that is as stressful in many ways.

Sorry I've rambled a bit

I would say quite a lot depends on what the care home is like, and what your mum's personality is like (and how that may be changing with age, mental confusion, potential dementia even??)

At my MIL's second care home (the first one wasn't really up to coping with dementia or any kind of significant physical illness or complications), there was a very good 'daily programme', and residents were strongly encouraged to gather (or be gathered!) in the main lounge, where 'everyone' was, and where the activities took place (things like quizzes and 'sing-songs' and painting and 'chair yoga' etc). Residents were not encouraged to stay in their rooms 'all day'.

For dementia, the argument is - and it seems very likely - that even if they can't 'participate' much, they can still 'observe'. Right to the end, at her third home, my MIL was 'wheeled out' of her room and into the lounge, where she could see whatever was going on. It helped to keep her mind occupied (otherwise she just fell asleep - she did anyway, quite a lot).

The analogy of the last two years like the first two is apt - just like an infant, MIL would 'watch what was happening', and surely that had to be 'less boring' for her?

However, while someone has enough clarity of mind to state what they want, of course if they 'want' to stay in their rooms, they can't be 'forced' to participate in anything. (Even when it would 'do them good'!)
Financially, the decisions you take 'now' will have huge impact 'later'.

When someone has their own house, then I would warn that you DO have to 'be prepared' for the ENTIRE value of the house to 'go' in fees. That has to be accepted from the off, because, unless the house is worth a million (!), you just can't 'forecast' how long someone will live, however frail they are, or whatever health complications.

So, if you DO want to 'inherit' then residential care is very risky. Yes, you MAY end up with something - or you may not!

The only alternative is to be prepared to sustain 'care at home' for an 'indefinite period'. However, all too many family carers think they can do this, but find themselves in a lobster pot - they've started caring, they are 'counting' on inheriting their parents' house/flat, but the caring 'burden' gets heavier and heavier and heavier. Only death, sadly, can break that - and 'no one knows' when that will happen.....

It's a tough choice in either case, but you MUST make it 'up front'. The very worst situation to be in is to start with the intention of inheriting the house, and spend several years 'coping' with the care yourself....only to find you break under the strain, and the parent still has to go into residential care and then you may lose the house anyway....

As for costs, these can be quite variable, probably depending on location and 'luxury level'. The two are probably linked - for example, near me, in the Home Counties, there are a lot of 'luxury care homes' because incomes round here are high. That's the £50k plus per anum category! However, my MIL was in the West Country, and paid £100 a day, which is significantly less per year, so her funds didn't quite run out before she died. The homes were very comfortable, but I wouldn't call them 'luxury'.

HOWEVER, it is NOT the 'luxury that counts. Of course you want something pleasant and comfortable, but 'luxury' is pretty irrelevant. What REALLY counts is the quality of the staff. That is what will make the difference - kind, dedicated, efficient carers and nurses ,and a friendly and supportive and cheerful atmosphere.
It certainly depends on the needs and personality of the person, and how it has changed.
My husband was a very sociable person, always had a thirst to learn. Now, he really does prefer to be in his room, with his television. This keeps his mind active. He is wheeled to the quieter lounge once or twice a week, which he doesn't mind for a couple of hours. When it gets noisy or busy he gets agitated. But then he has become very unpredictable. Each person is so different. It's trying to find the right balance and remembering that relatives have a life too.