Carer for mum - New and saying hello!

New to Carers Connect
1

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

2

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?

3

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

4

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.

5

CHC / NHS Continuing Healthcare ?

Main thread :

https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-nhs-continuing-healthcare-chapter-and-verse-under-one-thread-guidelines-and-links-32532

Everything one should need to know … the practice of which is another story !

6

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

7

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

Kr
MrsA

8

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’!)

9

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.

10

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.

11

I would certainly agree that if their minds are still capable of absorbing TV etc, then of course it can be fine for them to be in their rooms all the time!

Also, as Pet says, things will ‘change’ as your mum ages anyway, so what might suit ‘now’ may not ‘later’.

I would point out that if you aren’t going to be visiting ‘that often’ anyway, there is no particular need for the care home to be ‘local’ if you see what I mean.

With my MIL, because of the dementia, she was becoming immune to ‘time’ and so although I visited every few weeks (when I went to stay in the west country where the rest of my family is), she was not aware of me NOT being there often.

12

Thank you all - you all make very valid points. I agree about the “luxury “ Care homes and I do wonder whether the money spent on these would be “wasted”. She’s not going to want a cinema or a bar to sit in and, of course, someone has to pay for all of those !

I do feel I am a breaking point at the moment which is part of why I’m looking, but I understand what you say about maybe she won’t want to participate and may still end of just sitting all day. Honestly, with her kidney failure I’m actually surprised that she’s still with us so feel we are on borrowed time to a certain extent. But as some of you have said I can’t know that for certain and she may surprise us and that needs factoring in

Thank you I’ll keep reading

13

I was in a fairly similar position a few years ago.
First I wrote down all mum’s income on a weekly basis - a very generous Civil Service pension plus highest DLA Care and Mobility.
Knowing how much the care home fees were, also on a weekly basis. I worked out how much she would need to use from her savings every week.
Knowing the extent of her savings, I divided the total amount of savings by the weekly amount she would need to contribute, on a weekly basis, and that told me how many weeks she could stay in the home without selling the house.

Has anyone from Social Services told you that for the first 12 weeks, there is a “capital disregard”, mum should only pay fees based on her income, not capital? (I reclaimed £8,000 from mum’s LA as they didn’t apply this rule properly!)

Even if she runs out f money, if you want to keep the house, the council can pay the fees, and put a charge on the house.

Most important of all though, is to get the Continuing Healthcare Assessment done, because then all care, nursing and social, is paid for by the NHS!

14

The one HUGE ‘gift’ of a care home is YOUR ‘peace of mind’.

I can’t tell you the ‘bliss’ of visiting MIL, taking her out for a lovely drive through the countryside, along the coast, stopping for a cream tea (which she put away with gusto!), me chatting away to her with all the ‘family news’ and so on, and then, at the end of the afternoon, driving her back to the care home and ‘handing her over’ to the staff. And then I could drive away knowing she was ‘safe’ and well looked after.

The ‘worry’ just vanished!

Yes, I wished she hadn’t deterioriated so much she NEEDED so much care, but there it is - as is often said on the forums, ‘infirmity is often the price paid for extreme old age’…

Had my poor MIL died at 89 ‘in good health’ and living quite independently in her own flat, she would have been remembered as having had a ‘wonderful old age’…but she didn’t die then, she started to decline, and ‘lingered’ getting progressively weaker and frailier and more mentally infirm, until the very end, five years later…sad, sad, sad…

I would just point out that, statistically I believe, longevity and care homes can go ‘either way’ …sometimes simply ‘going into a home’ seems to trigger a ‘decision’ that they do NOT want that, and so they ‘turn their face to the wall’…or, sometimes, the reverse happens, they ‘revive’ to an extent with all the good non-stop care, and the company and ‘goings on’ etc etc.

In terms of ‘choosing’ a home, again, it is always said on the forum that ‘you’ll know it when you find it’. I certainly found it in MIL’s first two homes - they just ‘felt right’ straight away’. The third was ‘not so good’ but that, sadly, was simply because the residents were SO ‘advanced’ in their dementia and infirmity, that that made the difference. The staff themselves were lovely!

15

The other thing to consider is what the personal cost is to you. If I could have my life again, I would not have got sucked in to a situation where I did more and more and more and more for my mum especially.
At one time I was supporting FIVE different relatives all entitled to highest DLA/AA at the same time. Too much for too long.
I developed a life threatening illness and was told never to care again, my husband DIED of a heart attack soon after.
We should have stood up for ourselves so much more. Don’t put your life on hold. None of my dreams of retirement ever came true, because I was widowed. My husband worked so hard from the age of 16, it’s so sad he never lived long enough for his pension.
Don’t let this happen to you. YOUR life is just as important as mum’s.

16

And don’t forget to look at CHC which means if her medical needs are great enough she won’t pay for care/residential (I think, check,out the link Chris sent earlier)

17

CHC isn’t necessary ‘all or nothing’. My MIL’s care home fees were something like £830 a week, but CHC was awarded for £130 a week which was calculated to be the ‘nursing element’ of her care (the rest was assigned to ‘old age and dementia’ and that is not covered by the NHS, so it’s either self-paid or LA-paid).

18

Hi Claire

I second what people are saying about the ‘very elderly’ and care homes. My mum, 95, moved into one recently and within a couple of months had fallen several times, bruised herself badly, and been admitted to hospital where she was diagnosed with delirium.

Now she is back in the care home and slowly regaining her equilibrium, but her memory of anything beyond age 20 is non-existent. Nor does she retain any new day-to-day memories. If you ask her what she did this morning she will quite likely describe something she saw on TV. She has little mobility, is fairly deaf and her sight is failing. She still only wants me to talk to, is still lonely and still depressed. So any hope I had that this would improve by moving her has been scuppered!

All I can say is I’m profoundly glad it all happened in the care home and not while I was looking after her.

19

Starfish - that doesn’t sound very good, re the fall at the care home! I suppose they can’t look after them ALL the time, but even so! My friend with her dad now in a care home said the first time she visited him he had a huge plaster on his forehead where he’d taken a bump/tumble! Not really encouraging!!!

That said, my MIL used to try and get up in the night, and they occasionally found her ‘collapsed’ on the mat. They came ‘instantly’ as the mat was a pressure sensor, so the alarm went off the moment she fell, and she usually seemed to be tangled in the duvet (which was probably why she ‘collapsed’ in a heap on the mat).

It’s sad she still feels lonely and depressed. My MIL was put on a very low dose of Diazapam (or equivalent) just to ‘lift’ her slightly. Not sure if that might help? (But if she’s still mobile at all, they may not, as it increases wobbliness alas)

All so sad. So sad… No way to end a life, is it?..

20

The falls all happened over a brief period and the home responded immediately with pressure pads on mum’s chair and mattress. Removed her rollator and now use wheelchair and zimmer to transfer her.

I’m wary of diazepam. She used to take it a lot, before it was considered addictive, and I think she came off it too quickly as she had a lot of unexplained panic attacks. But maybe another antidepressant might be worth a try.

I’ve told my kids I’ll be setting off with a bottle of whisky to lie down in a snowdrift before I’ll go into a home… :open_mouth: