Mum had major stroke Aug 2021

My mum had a massive stroke back in Aug 2021.

It’s been a nightmare ever since.
She’s paralysed down her right (what was her dominant) side.
Which means no walking, driving and now is being hoisted everywhere by two carers four times a day, and she has to wear adult pads. So her mood is extremely low.

There are a lot of issues we need advice on but our two biggest priorities for her are:

  1. That she has had a massive loss of appetite since having the stroke and has lost roughly half her body weight in 10 months! She basically doesn’t fancy anything to eat. Literally, a couple of teaspoons a day at best.
  2. She is suffering from a really bad bed sore that got infected down to the bone. So is in a lot of pain, even with the 20 tablets a day that she is on.

I could go on and on regarding our infuriation at times with the local hospital and the fact that they don’t seem to know their left from their right most of the time, but not sure I’ve got enough characters left in this message to go through it all, maybe I’ll put it into another post.

Any advice is greatly appreciated to help with either of my mum’s issues.

Xx

Welcome @JJ11, sorry to hear about your mums situation.
Loss of appetite post stroke is quite common. I have this issue too. Have you tried any protein shakes or similar to try & build her up a bit without forcing food in? Sometimes it can be the tablets causing the weight loss so a review of her meds might help.
In relation to the bed sore. Does your mum have a care package in place? They should sort this if you do. If not get one put in place. Could you get a district nurse to come see her & treat it? If that doesn’t work then maybe call 111 for advice.
I don’t have any real experience in these areas so I can’t really offer any more but I am.zure others on this group can help.
Hope you get some answers.
Best wishes xxx

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I agree with @Mrs5K, meds can sometimes cause weight loss through lack of appetite. I had quite extreme loss of appetite after stroke and went down from my usual nine stone weakling to seven stone. It scared me quite a bit and so I drank Horlicks every evening, grazed on nuts, Jamaican ginger cake, bara brith, forces myself to have soup for lunch and had mostly salads for supper. I always ate an apple every night. Anything easy, that didn’t require the ordeal of actually eating.

Anxiety and depression all along its spectrum can also cause lack of appetite. One has to crave food. I simply didn’t. I still fluctuate a year and a half on. I love food, love cooking it, but something inside me would fall flat and I’d be exhausted just thinking about the effort of eating.

In my experience, I could only satisfy weight gain by starting to indulge my craving. Bananas one week, cake the next, tuna, cheese …

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Hi mrs5k

We have lots of different kinds of supplements, e.g smoothie powder, jelly shots, milk shots, fortisip drinks, mousses. They’re stacking up in the fridge/kitchen hardly being used! No matter how hard we try she just doesn’t want them.

She’s had a meds review and they’re happy with what she’s taking.

Currently she has 2 carers come four times each day. Two district nurses coming each day to clean and dress her coccyx wound and two anti biotic nurses coming to give her i.v meds to sort the coccyx infection!

It must be horrendous for her. Although she’s 72, before this, she was a woman who did everything for everyone. Now she can’t do the basic human requirements for herself. Right now she’s stuck in her hospital bed in her living room with nothing to look forward to. I totally understand she feels like there’s no reason to carry on, Nothing to look forward to, can’t see an end to this awful situation!
Xx

Hi rups

Cos she’s 72 she has false teeth, but because she’s lost so much weight they don’t really fit anymore.

I’d be literally ecstatic if she grazed? That would be amazing, but she doesn’t even do that.

I think part of it is that she can’t move herself. Can’t walk, hasn’t got the strength to reposition herself, basically just lays there ALL DAY.

Hard to watch, its like she’s given up. And i get that, she can’t see anything but the uselessness of feeling she’s not being able to do anything for herself.

It’s hard for my sister and i to stay positive for her but i’m not sure we can see anything but that for her going forwards either. Her coccyx wound is awful, its a hole the width of a tennis ball and you can see tissue etc, must be absolute agony. I might ask the hospital whether surgery is an option, anything to speed the healing up. She needs to start working towards getting out into her recliner chair and commode really. Trying to keep the coccyx area as clean and dry as poss. But the nurses are keeping her flat on her back on her toto mattress until it heals. But we’ve been told it could take months! That’s no life!

Reading your post, you maybe need to hold onto the positive fact that you can make your own food, you get cravings (whatever they may be). I’m fast learning to see those silver linings however faint they may seem.
Xx

@JJ11 so sorry she’s in that situation. Had similar with my dad who had cancer. He wouldn’t eat either. In the end wevjust fed him stuff that would slide down…he lived on Yoghurt & jelly for months. He also had bed sores that were really bad. It’s awful seeing them like that. If she won’t eat can they give her a drip which will provide nutrients etc? Have they ruled out other reasons she doesn’t eat?
Really hope someone can help you.
Best wishes xx

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Hi @JJ11 welcome, though I’m so sorry to hear about your mum’s situation.

I wish I had some helpful advice to offer. One would think the nurses coming to visit would be able to offer advice, though it appears from what you say they treat the wound and leave.

Wishing you and your mum all the best.

Take care

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Hi again.
You get to the point where you think anything she can eat is great, but then you think actually no she needs to eat nutritionally beneficial things.
Swings and roundabouts. Whole new way of living! For everybody.
We have to be grateful for absolutely everything we’ve taken for granted in the past. A teaspoon of food in the past would’ve been nothing, but now it’s everything. A teaspoon! But yes a teaspoon. It’s a teaspoon better than nothing. Simple as that.
I know I’m painting such a raw picture here but this is how it is for us right now.

It seems a lot of advice and research and help online is based around pictures of people that can get around and feed themselves and move their whole body still.

You hardly see representation of people like my mum where she literally lays on a bed all day every day cos she literally can’t move.

I know it’s all i can see right now and i hope to god it improves to a point where she can get back in her recliner chair and then onto a commode when needed. (Which is where she was just starting to get to when she got her coccyx infection), then who knows from there, we had such hopes on an upwards journey, doesn’t feel like that right now. Feels like we’re on an icy downhill slope.

I seriously wonder what people who have no-one must go through in this situation, cos my mum has me and my sister who literally see and do anything we can and some stuff that medical people should be doing and seeing. It’s really not pretty at times, but it’s still come to this.

Xx

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Hi mahoney
Yes that’s exactly how we’ve felt.
They come, they dress, they go.

No advice on how to avoid or prevent it in future.
Giving of the vibes that this is it now, bed sores for life!
God I’m a moaner.
Xx

So sorry to hear of your mum’s challenges, I too lost appetite in the early days of recovery, what saved me was watching good cooking programs in particular the hairy bikers Asian adventure, curried meat balls got my mouth watering. Good luck with

Getting your mum mobile it will give her more reason to recover,god bless you both

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@JJ11 A good moan, a good cry, even a stamp or two of the foot are all in order, permissible and to be expected. Let it out, its not the sort of stuff to bottle up. :grimacing:

We’ve all been there and return there, too, every now and again.
Your mother could probably do with getting it out too.

As for the sores, thats pretty much what lying in bed can do. At the hospital I had a strange inflatable mattress that maybe helped, but I was glad when it had gone.

Getting a bit mobile, I commandeered the thing that tips the bed up and down, it sort of helped. A few words every so often with anyone who had time for me helped too. At those early stages it is a big deal to find a way to cope with what is a huge shock.

Sorry you had to join us, but we have ears and will listen with sympathy. We have been there too.

Just keep on keeping on, you are on a journey, things do move along, even if a little slowly at times.

I also am paralysed down the right hand side and it is very true what they say, ‘You don’t know what you’ve got til its gone’ I can’t write any more but at least I can one finger type with my left hand on my laptop. You don’t want to know this but I can’t scratch an itch under my left armpit, my right hand isn’t up to the task ! :crazy_face:

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Hi mrfrederickson
Thank you for that.
Funny you should say about mobility.
After reading some enlightening posts here I’ve decided to enquire into some local Neuro physios to see what they say. You evidently just never know what’s possible til you at least try. We just took the word of the medical staff when they said nope very unlikely to move that side ever again. I would hate to think there was potential and we never looked into it. I don’t need to tell anyone here how utterly amazing it would be of my mum could at least walk again!
Fingers crossed it’s not too extensive and she could use some of her medical benefits to pay for some physio.
Xx

Nurses, good as they are, aren’t stroke experts. You need an expert opinion. A neuro physio is worth their weight in gold. Try ARNI (details online) and see if they have anyone available in your area. Sessions cost around £45. I have right side paralysis and I have improved greatly over the last 8 years, but the first step is to get your mum out of bed.

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I really feel for you all @JJ11. It is so difficult to see your loved ones like that. Carers & nurses are never there long enough & you are left to deal with everything else. I’ve been there- it’s awful.
As others have said trying to get your mum moving is the first step. Neuro physios will be able to advise.
Best of luck and we’re all here for you if you need to offload xx

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Hi minnieb
Ive just sent a heartfelt email to arni. I’ll give it a few days and chase if need be.
Xx

Hi Minnie
How do you avoid pressure sore issues being right side paralysed? What is your setup regarding bed/chair etc. Do you get turned regularly, do you have the pressure mattress or other equipment. If so what are your settings. If you don’t mind me asking. Just say if you’d rather not reveal these things.
Xx

Hi. Fortunately, I wasn’t bed bound for long. I was (and still am) determined to improve, so got out of bed at every opportunity. It wasn’t easy at first, but gets easier with time.
Does your mum take antidepressants? I’m not ashamed to say they probably got me through the first couple of years.

There’s no shame in anti depressants. It proves you know there’s a concern and you want to do something to tackle it. Yes she is on them, among so many other meds. Around 20 each day.
So many worries, majorly her lack of appetite and her bedsore! If we could get a hold of those we’d be going in the right direction, ie forwards.
Just feels like we’ve taken no steps forward and lots back just recently! She went back to hospital yesterday, after being out for 2 weeks after a 4 week stay, now with bloods concerns, i rec it’s got to be her bedsore infection not clearing up. Nobody wants their mum passing from a stroke but i def don’t want her passing from lack of organisation at a hospital!

#realworried #helpless #frustrated #infuriated

If it keeps going the way it is right now i don’t rec she’ll see Xmas!

Hi @JJ11 ,really sorry to hear about your situation. It must be absolutely horrendous for your mum but equally for you & your sister who sound like you’ve had pretty much as big a life changing experience as your mum.

I really admire the effort and care you have been putting in but I do worry for both of you as it can’t be sustainable long term.

I guess your mum is not able to communicate with you? If she was then trying to see what she might fancy to eat would be helpful.

I lost 2 stone (from 12 8) due mainly muscle loss but also not eating as well. I am able to really enjoy my food again but still have some trouble using cutlery so can get frustrated at how slowly I get the food into my mouth.

I feel really bad that I can’t offer any meaningful advice but you seem to be getting some from others on here.

I would agree with @Bobbi that you can certainly use this form to get things off your chest. We would be happy to hear any progress but would love for some of it to be positive.

Here’s hoping for some baby steps of progress that lead to a better level of recovery :crossed_fingers::four_leaf_clover::+1::grinning:

I wish you, your mum & your sister all the very best.
Mark

On the subject of eating, I went through a phase where food tasted different. To illustrate, I don’t drink tea but have always drunk coffee and enjoyed it too. Post stroke this changed, coffee tasted truly vile as did a number of foods on the hospital menu. I discovered that hot chocolate was quite bearable and that became my drink for a while. I still struggle with the tastes but not as severe now. Things I had loved became food to avoid. My stategy was simply to try alternatives.
The stroke thing is a journey, we are all in different places, but this is unfamiliar territory we need to be inventive, be willing to adapt, there is no dropping back into an old familiar routine.
We all hope for you that your mother finds a way to begin to cope with the experience she is enduring. There is no single answer fits all, we each have to make our own way, all is not hopeless.
As far as food is concerned, trying for a healthy diet and such is not as important as simply taking in something, even sweets, ice cream. Much of dealing with stroke is about relearning, even relearning to enjoy what we eat.