Worried about mum looking after dad after severe stroke

[Sittinginkitchen]

Hi all - I wondered if there's anyone who's been in a similar situation.

My dad suffered a very severe stroke a few months ago. Although it wasn't looking good when it first happened he has made some progress in rehab. He has learnt to swallow and can say the odd word (no where near full sentences). However, he is practically bed bound, doubly incontinent and can only eat mushed food.

The hospital are keen to discharge him and talk has turned to him coming home where my mum will oversee his care. We think he will get 3 or 4 carer visits a day.

Trouble is I'm very worried about how my mum will cope. Although he will be visited by carers, she will need to do all the bits in between - including dealing with his incontinence.

Has anyone been in this situation or knows someone who has? Is it really as bad as I'm imaging or can you get used to it? I just think it could be more upsetting than him being in a nursing home tbh - even for him. He's a very proud man and I'm not sure he will want to be in that position at home - particularly as my siblings also live there.

It's so hard as hes gone from an active, happy go lucky 75 year old to this. We're all devastated 😢

You have my sympathy op. The exact same thing happened to my mum. It was too much although she did get 4 carers a day. I had to put her in a nursing home but the local surgery Practice Manager realised how hard it would have been.

Probably not the answer you wished to hear. We did try with a bed in the dining room but as I had to work to pay the bills it was impossible.

In spite of that the nursing home was absolutely brilliant.

It was an awful experience though. My mum was in hospital for over 5 months first.

Everyone is different and the hospital unfortunately may be acting on whatever is quicker for them with regard to discharging .

If I were you I would (very soon!) have a very frank chat with your mother regarding what she is expecting and what she could cope with. To be honest, a bedbound, doubly incontinent, elderly, male (so usually heavier) patient would likely be cared for by two people at a time in hospital. It is therefore IMO too much to ask of one elderly woman.

If you think your dad would have happier in a nursing home then push this. Try to assuage your mum of any guilt she may feel.

Your dad may well feel much more at ease and at peace with being cared for in a nursing home and with a rested and happier wife to come and visit him. Rather than a very difficult alternative.

Talk to her soon and then if you decide that a NH would be better for your dad then tell the ward soon. He can then go straight from the hospital to the NH and get settled in. Once he is at home it will be much harder to move him out.

I wish you all the best of luck and strength.

That’s really difficult but won’t your siblings help? If not I imagine your DM will become exhausted very quickly.

Usually is recommend looking for an excellent nursing home ( he may well qualify for Continuing Care which covers the cost). Unfortunately at the moment that’s a minefield due to Covid restrictions and outbreaks. Most will only allow one designated visitor during outbreaks ( happening continuously).

Like I say it’s really hard.

Sorry to hear about your dad. I had a stroke last July but have been incredibly lucky to have got back to normal (near enough). It was a struggle. (I'm 62)

I used to work as a carer, for many years. If they are going to visit 3 or 4 times a day, they'll see to your dad's pads/catheter, etc. Should he need to be dealt with in between visits, your mum could roll him to one side in bed, change the pad and then roll him to the other side to pull the pad straight. She'll possibly need help from your siblings. I'd expect the hospital to show her how to do that. It's not a pleasant situation for either your mum or dad to be in, but having been in a similar position myself (my husband used to have to help me on and off the toilet), it's not going to be forever. Your dad will get stronger and fitter, over time. He'll need to be encouraged to do more and more for himself, as his strength improves.

Best of luck to you, your dad and mum x

3 or 4 care visits a day, maybe 20 minutes a time, is the usual package provided by the local authority.
What they don't tell you is who has the responsibility for the other 22+ hours.
To be blunt, if your mum is willing to dedicate herself to being the carer then her own life will have to go on hold.

@MyQuietPlace

Sorry to hear about your dad. I had a stroke last July but have been incredibly lucky to have got back to normal (near enough). It was a struggle. (I'm 62)

I used to work as a carer, for many years. If they are going to visit 3 or 4 times a day, they'll see to your dad's pads/catheter, etc. Should he need to be dealt with in between visits, your mum could roll him to one side in bed, change the pad and then roll him to the other side to pull the pad straight. She'll possibly need help from your siblings. I'd expect the hospital to show her how to do that. It's not a pleasant situation for either your mum or dad to be in, but having been in a similar position myself (my husband used to have to help me on and off the toilet), it's not going to be forever. Your dad will get stronger and fitter, over time. He'll need to be encouraged to do more and more for himself, as his strength improves.

Best of luck to you, your dad and mum x

You simply cannot state as a fact that OP's father will get better and stronger over time.

My FIL is exactly the same. He gets visits from carers 3 x a day. They have a hoist and he has a hospital bed with an air mattress to help prevent bedsores. A chair that was special fitted for him so he can sit out of bed for a short time. He doesn’t use it much ch since he has little core muscle strength. The incontinence is not really an issue since he has incontinence pads and paraphernalia.
The carers deal with all of this.
MIL is in charge of feeding him although he is able to use a spoon now. It is unlikely he will recover any further function but can say yes and no and recognises everyone and can call them by name. Pretty much everything else is gobbledygook but you can get the gist of what he’s saying. He seems happy.
My MIL is coping but far from happy but hen she has as pretty awful to him before his stroke.

Useful advice from carers association and age uk.

Should he need to be dealt with in between visits, your mum could roll him to one side in bed, change the pad and then roll him to the other side to pull the pad straight.

Great way to ruin your back very quickly, and often impossible for someone to do alone.

What an irresponsible post.

Sitting, we've recently been through this, and while the carers were brilliant, the time between the visits was incredibly hard, and that was with three of us helping. If your mum and dad want to try, then you can support them by ensuring they've got the equipment they need, have district nursing input where needed. But there's no shame in admitting they need more help, and checking what more support is available.

If you ask me owing to your fathers age and level of care the nursing home would be the best place.

My mum was skin and bone when discharged from hospital but after 2 months or so in the home she had gained weight and was much less addled.

Physically she never got better but she was 76 when she had the stroke.

She lived for another 2 years nearly and was quite content. She sat in the lounge (with help) with other residents.

It was harrowing in the beginning mind.

At least there are always trained staff in a nursing home and they know what to do.

I think she was 'lucky' with the place though as it was a fairly small building and she was one of two NHS bed spaces in a private nursing home.

We had great carers for my dear Dad when he came out of hospital. They gave us their personal phone numbers so when we needed help in middle of night when Dad was sick, they came and helped clean him up. He did have 4 visits a day at first, but we managed with 3 as he didn’t need feeding or giving medication, that was done by us. My Dad was, also, a proud man and he broke down when I had to sit him on the commode, but we made a joke of it. What we were not told was how much stuff we would need, this included small plastic bed sheets, incontinence pants, wipes, cream, sippy cups. They provided a hospital bed with rubber mattress, commode and walking frame.

It doesnt sound to me as though your df is in any fit state to be cared for at home at the moment. It's cheaper, of course, so ss will push it but it could well end with your mum breaking down and your dad receiving poor care.

Another thing to consider is, if he goes home, then surely this will mean that your mum will be tied to the house 24/7. Is she really ok with that?

If your parents have money and can pay for extra care it may be doable. Or they could look at moving to an assisted living community with more care and company available on site. But just having him discharged back to his old home and your mum left to cope, I think that's a pretty terrible idea.

I sympathise hugely with you OP. Your poor dad. Going from a fully functioning person to needing help in all aspects of life must have been a huge shock for you all.

Similar experience here. My DM was in hospital for 2.5 months and they discharged her to a nursing home saying she needed x 4 care a day and they said this level of care wasn't available ATM. So should have been a short term stay in nursing home, however, we are now 5 weeks in and NO care available, let alone x 4 a day. No hospital bed/hoist available and we were told that district nurses are like hens teeth; she requires ongoing medical stuff due to conditions. DM is on EoL care in the nursing home and she hates being there but social services keep telling me that they've requested the package but nothing is available. Tying up the care package with getting a hospital bed/hoist seems to be a massive problem too. I'm heart broken for my poor DM. Like your dad, she's gone from a fully functioning, independent person who would walk everywhere to being bed bound, double incontinent and on EoL care. It all seems so surreal.

Such a horrible time for anyone needing care in the community right now though. Sad times.

SylviaTrench Possibly, it's just that many people do make good progress, sometimes months/years later. In a clumsy way, I was trying to give OP some hope. I've had a stroke so can identify with some of it.

CorrBlimeyGG In what way was that an irresponsible post? With help from the OP's siblings, the OP's mum might be able to manage in between care visits. When I was in hospital, that's exactly what the nurses (2 of them, often 1) did with me.

We had this exact situation 4 yrs ago. Mum had a catastrophic stroke. She is right side paralysed and non verbal, she has lost some cognition.

After hospital she went to rehab for 6 weeks which was great but she remained in a wheelchair, etc.

She went home and dad cared for her for 3 yrs. they had carers go in 4 times a day. She had a catheter but the carers put her on the toilet at visits for her number 2’s. She learnt to hold it til the carers came and had no soiled pads when at hime.

Unfortunately the stress took it’s toll on dad and he had a stroke, luckily not severe. So it was decided that mum should go to a care home and dad remains at home.

All during the time mum was at home, and of course now, they had support daily from my sister and me at the weekends.

If your mum is willing to care for him then let hime go home, get the carers in and see how they go on.

Dad did a lot with mum, card games, board games, singing etc.

Another consideration is the financial impact. If your dad has money then he will have topay for the carers himself.

Mum and dad had to have their finances split so that mum paid for her carers out of her money, and not dad paying.

Also essential at this time is POA for finance and health. Myself and my 2 sisters all have POA for finance and health for both mum and dad.

Care home cost is approx £4000 per month.
I think the carers at when she was at home were about £3000 per month

I’m sorry this has happened to you. I know from experience you have a long road ahead 💐

I had to do all this for my OH who had PD then fell and fractured his hip, resulting in a lot of what you are describing.

I guess I was a bit younger than your Mum when doing all this and it was an enormous stress in every possible way: physically - he always needed to open his bowels just as the carer had left; emotionally - watching my erudite husband degenerate mentally and physically was agony.

I could not move him at all even though he was not a heavy man - I have a back problem and it was just impossible. And he used to be paranoid at night and cry out in terror - so add in lack of sleep for your Mum.

It takes over your life completely - your home is not your own - people in and out all the time: OTs, physios, district nurses, doctors, ambulance people, social services etc. etc. It is a veritable blizzard of people and frankly it did my head in.

He needs to go to a rehab hospital at this stage for proper intensive rehab to get him to his best state. It really does not sound as though he is well enough to be at home.

If there are issues about funding his care when he goes home do feel free to pm me - there is very little that I do not know about this - knowledge gained through bitter experience.

If he is virtually bedbound then he is not at a stage where he can be properly and safely cared for at home.

And the incontinence is the straw that breaks the camel's back - urinary incontinence in a man can be dealt with with a Conveen catheter (like a condom that leads via pipework to a bag) but you finish up changing it, dealing with accidents etc. As for faecal incontinence, that is frankly a nightmare.

I am so sorry you are all going through this. My strongest advice would be not to agree to him coming home until further rehab has been undertaken, s home assessment been done, and a full and adequate care package been put in place.

My OH finished up in a nursing home for his last few months - I simply could not cope any more. I find it hard to even write this. It is massive drain on everyone's resources: financial, emotional, physical. Do not underestimate how hard this will be for your Mum - I put a brave face on it, as no doubt she will - however stressed she seems to you, multiply by 10 to get a more accurate picture.

www.ageuk.org.uk/information-advice/care/paying-for-care/ - for info about care and paying for care.

www.beaconchc.co.uk/ - for info on how to get care free, based on health needs.