Mum's Discharge Home - not going well. Help please

Hello all, nice to meet you. This seems a very caring supportive forum.

My mother (83) was my father’s carer (86) and had a stroke 2 months ago and was admitted to hospital. I drove up to look after my father who deteriorated over the next few days and was also admited. They live in Nottingham, I live near Reading.

My mother was discharged home with a care package 10 days ago. The local Stroke Team providing post discharge rehab was triggered pretty swiftly. They’ve been amazing - and all the Speech/Language, OT and Physio therapists say (and have told her) she has huge potential to improve.
At the moment until things settle, I am staying in the home Sat/Sun-Tues. Wed/Friday I have to work in London.

But…my Mum was originally looking forward to coming home but has taken to it very badly. She pretty much spends most of the day sitting in her chair in the lounge, with no TV or Radio on.
She isn’t moving and following the advice of the Stroke team ( exercises). She also isn’t eating. Consequently she is getting weaker and weaker.
When I’ve tried to encourage her she’s told me to stop nagging, and the carer has said I need to back off (in a nice way) and let her make her own decisions.
But she’s gone from arriving home and being able hobble around (albeit unsteadily) alot having to use a walking frame, to now using it all the time and with effort. The time/effort to get up and down the stairs is taking longer.
I’ve flagged it to the Stroke Team and the GP has asked if she might be depressed and has booked us in to see her in 2 weeks.
I’m just desperate for her to eat and move - she leaves approx 75% of her plate. And won’t graze in between meals as suggested by S/L therapist.
Late afternoon yesterday I called from the office and she had gone upstairs to go to bed ‘out of the way’ because it was getting dark. Carer hadn’t yet arrived for tea so she hadn’t eaten.

Physio had attended in the morning and has given her a list of new exercises (my sister visited and saw it). When i asked Mum and asked if a programme had been devised, she had said no.
She’s had visitors, and I’ve tried to take her out for coffee at lunchtime when I am there.
But I just don’t know what to do now. I’m getting desperate and it’s incredibly stressful to see.
Is this common? Any advice? I can just see a long slow deterioration from her.

My Dad is coming home back end of next week from an interim bed - and he has been amazing. Making sure he consumes a big breakfast and then doing all the exercises I’ve suggested and then some. The contrast is palpable.

Any advice would be welcome. Thank you.

This is a hard one since she came home in a more positive frame of mind, but has declined. It is hard to motivate someone you love if they stubbornly refuse to listen. When I came home I told my partner I had come home to die, which was,of course, upsetting. I didn’t die and had excellent post stroke support. Fortunately, I did all the exercises required, but was inclined to do little else. My partner gave me ‘tough love’ and made me do things. I also started on a frame, but was frightened to leave the house. The first challenge was just to stand outside before coming back in. Then, using the frame, I walked as far as the house next door then back again. I then added a house a day until I could get as far as the end of the road and back. All this was nearly seven years ago. I now walk with a stick outdoors and can cook, bake and change a bed. It’s still an effort though. I also ate little when I first came home, despite losing a stone, and still find eating difficult now.

I think what I’m saying is, encourage mum to set little targets and praise her when she meets them. That should encourage her to do more. I wish you both all the best.

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@Juppy hi welcome to our lovely forum, so sorry your mum had a stroke then dad poorly too.

You’ve had a double whammy but sounds like your dad’s positive attitude might rub off on your mum.

She could be missing him too and feels like that.

I agree with what @John_Jeff_Maynard has said praise little things and it might work into bigger things. I hope when your dad comes home things improve.

Sending my positive thoughts and a hug your doing a fantastic job it must be difficult jiggling Reading and Nottingham not to mention exhausting.

I hope you get more help from Gp. Write all your questions down so you don’t forget anything to ask.

Kind regards Loraine :hugs:

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Hi, welcome to this forum, so sorry to read about your predicament. I clearly remember being desperate to get out of hospital and I had convinced myself that everything would be okay when I was back at home !!

Working hard on your recovery is so incredibly difficult and to be doing this in your 80’s makes it even worse. We all get disappointed and lose our way at times.

Not eating is very common following a stroke. I’m 5 years post stroke and still don’t have much of an appetite at times and have to force myself to eat.

Hopefully your mum will perk up when your dad arrives home.

Please take care of yourself and make sure that you utilise all of the help available to your mum and dad.
Regards

Sue

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@Juppy welcome to the forum. Sorry to hear both your mum & dad are poorly. It must be very difficult for you.
Loss of appetite is common after stroke. Mine still hasn’t returned 10 months on but i tend to eat little & often now. Can i suggest that you maybe buy her stuff she enjoys to eat but try not to push her to eat too much. I found when my husband was pushing me to eat more it had opposite affect.
You need to try & find something that will motovate your mum to do some exercises. Maybe your dad coming home could be a bit of inspiration. E.g. wouldn’t it be great if you could welcome him home at the door. Whatever might work.
It must be very difficult for someone in their 80s to get motivated after such a life changing event but pushing her too hard may just bring out a stubborn streak.
Wishing you all the best xx

Dear Juppy, It must be very hard for to watch your Mum after such a good start. Try not to worry too much and look yourself, it’s easy to neglect yourself and become run down and tired. Hopefully your Mum might perk a bit when is home again. All the best and remember you can always turn to forum for help. Moira, :bouquet:

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Hi @Juppy sorry to hear about your parents.

Hopefully your mum’s setback will reverse once your dad is back home too and she’ll get back to making progress herself.

It’s difficult to watch a loved one when they’re struggling, keep trying to encourage her.

Wishing you and your parents all the best

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Thank you @John_Jeff_Maynard I think one of the things getting her down is carers sometimes arrive quite late so sometimes she is just waiting in bed in the morning for quite a while.
All these things add up.
It is an interim care package whilst a longer term solution is sourced - I’ve been told we will be going down the ‘pre-paid’ card route which will allow more flexibility and we get the same time every day. I need to explore this more though.
My Dad coming home will obviously help with that and hopefully motivate/encourage her.

What is the definition of ‘tough love’ though - where is the line drawn. Don’t want to push her too far where she just digs her heels in.

Thanks @Loshy - I spoke to the GP last Monday. She thinks she might be depressed but is loath to take action straight away and see how things play out. We have an appointment 2 weeks Monday.

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Thank you Sue.
I’m driving up this afternoon. She wasn’t answering the phone last night so I suspect she’d had a bad time again and gone to be early again.
Not looking forward to what might meet me on my arrival.

Just one thing guys - and thanks for your responses.

I had thought of going down the route of (if there was resistance to getting up and trying) - saying something along the lines that I’m driving 3 hours to come up and spend all this time to support her…‘if she doesn’t care and want to make the effort…why should I?’

Or is that too harsh. She’ll have been home two weeks now, so for me, the nicey nicey, there, there, take your time period is almost done, and she needs to not sink into a habit of comfortably letting everyone do everything for her.
The physio said yesterday, she was quite comfortable in her chair and she had to use tough love to get her up…

@Juppy morning, I’m not medically trained but know how it feels.

2 months after a stroke is no time maybe 4 to 5 months my approach would be harsher.

2 weeks home is not along time it also sounds like depression. You know your mothers nature would she sit back and not want to improve or could it be the stroke has changed her way of thinking.

I think maybe when your dads home she might want to improve. I wish you well and lots of luck for your mothers improvement. Regards Loraine

I think in Mum’s case you can only try constant gentle persuasion. I learnt to break tasks down into smaller components and rest in between. For example, one or two steps using her frame and then a rest. Life post stroke is very frustrating for the survivor, because nothing is easy anymore. I find doing up shirt buttons very frustrating using only one hand. We all have an inner voice saying ‘don’t bother’ but I know I mustn’t give in to it.

Hi @Juppy, I’m so sorry to hear about your situation. My father came back from hospital after a stroke a couple of months ago and it didn’t go well.

I would recommend contacting the company providing the interim care regarding their time-keeping. I had to do this with the carers looking after my father as their visits were all over the place, leaving Dad stuck in bed or his wheelchair for hours on end. This wasn’t an issue from a meal point of view as my Mum was sorting that out, but he’s been incontinent since the stroke so needs changing on a regular basis.

I also recommend finding a local support group for carers as they can provide more generic support for you, including regular phonecalls. This can help take the pressure off a little and remind you that you’re not alone in this.

It is early days and it’s a lot to take in and process. I do recommend keeping a diary to track problems and successes, however minor. This will prove invaluable to get a sense of progress and where you may need additional support down the line. It may also help you spot patterns in terms of what works and what doesn’t.

My father showed occasional personality changes when he returned home which were hard to handle, pushing our help away at times. So above all, be patient and take deep breaths!!!

Hopefully your mother will improve when your father returns. And do reach out to this forum and local support groups for additional help if needed.

All the best, Theresa

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