Looking for hope

[JenP]

Hi, it’s been a while since I’ve posted so thought I’d share an update and see if you lovely people out there can offer some words of encouragement!

It’s been almost 4 months since my Mum (75) had a haemorrhagic stroke and it’s coming up to 10 weeks since she was discharged from hospital. She’s at home with Dad and after a tough few weeks initially, things have settled down a bit now and they have a bit of routine - albeit a very mundane one. Her pain management seems to be a lot better than it was in hospital and she’s finally been assessed by the Bladder & Bowel team and has better pads for managing the double incontinence.
She has a PEG fitted, although is able to eat pureed food (if she wants it) and sips of water. All her medication has to be given via the PEG.

But perhaps the biggest thing is her mobility. Both her left arm & leg are affected, she can’t weight-bare and the carers have to hoist her from bed to chair. She does have a mini-lifter as well & the physios are hoping to start getting the carers to use this for transfers soon so she gets more opportunities to be on her feet. She also has hemianopia which is going to affect her balance.

The one thing the stroke hasn’t affected is her communication and understanding. She’s fully aware of everything and I think that’s what makes it all the more difficult to deal with. She’s embarrassed at needing so much support and feels like a burden to everyone. She’s suffered from low mood since being in hospital - it’s why she was discharged early - and is on anti-depressants. She just wants to get some mobility back so she’s less helpless.

The physio sessions have slowed down now - did come more or less every day for the first 6 weeks. We know recovery is painfully slow so we’re not expecting miracles anytime soon but I guess I’m just looking for hope that things can improve given time and perseverance?

[John_Jeff_Maynard]

Hi JenP. I had a haemorrhage stroke six years ago, but, fortunately, did not lose the ability to swallow. When I left hospital I could walk on a frame, but was in very low spirits. On my first night home I told my partner ai would die, but I didn’t. I had physio at home, but remained very afraid and very unsteady. However, I did my exercises religiously and, little by little, I improved. Every small task though was like a mountain.

Six years on and I am surprised by what I can do. I can cook a meal and change a duvet cover. It all takes planning and takes longer but I can do it. I can’t walk very far or lift very much and I still wobble and totter. I think I am saying improvement depends on grit, determination and relentless repetition of exercise. I am fully aware that I might not get back to ‘normal’ but I am reasonably independent. However, no two cases are the same. I am now nearly 79 but I refuse to give up trying. I hope your mum is the same. Please encourage her all you can.

[axnr911]

Hi JenP–I have to start by saying every stroke is different. But I do believe given “time and perseverence” things will improve. Constant rehab and therapy is essential. I was totally paralyzed on my left side. I had therapy 3 x a day in the hospital for 3 weeks. They gave me a tens unit to use in between if I wanted to stimulate the nerves in my leg and hand. Then for several months afterward after I came home I had rehab 2 x a week. For the first few months, I needed a tub transfer bench and a toilet surround with rails. I had a walker for a couple of months, then a quad can, then a cane. Now 3 1/2 years later I walk fine and walk a mile a day. But it took tremendous effort to attain where I am now, and of course, time. It sounds like your Mom is only a few months out from her stroke. In stroke recovery, that is a relatively short time. So, don’t be discouraged. Also, keep rehabbing your Mom. The brain does rewire , with repetition. Don’t give up. My best to you and your family. I’ll remember you in my prayers tonight. Jeanne

[MargaretH]

At times it will be really tough and your mum might feel like giving up but stay positive.
My husband had his stroke nearly 3 years ago and was pretty much written off. I was told he wouldn’t survive, then it would be no more than 2 years. I was told he would never walk, talk, eat or drink, speak or be capable of understanding or reasoning. Yet he’s still here, quite capable of most of those things.
And progressing in some areas.
If he had received all the physio he needed he would be standing if not walking by now. But he didn’t. He chooses not to speak because it is difficult and so communicates in other ways. Shortage of specialised staff and Covid blamed for lack of treatment.
However yesterday for the first time he was able to rinse out his mouth and spit out the water after tooth brushing. Before this he had always swallowed the water.
Keep nagging for help, stay positive, encouraging, and celebrate each and every success.
After 32 months we have cause to be thankful every day.
Good luck.

[axnr911]

Margaret–You are so right! It is sad to think of all the people who have not progressed because they believed what they were told and quit trying. Thanks for the reminder. Jeanne

[JenP]

Thanks John, it’s encouraging to hear about your recovery and hope things continue to improve for you as time goes on.

[JenP]

Thanks Jeanne. Do you feel like the tens unit helped? Mum’s therapy whilst in hospital wasn’t that intense and because she was in so much pain they sometimes weren’t able to do very much with her. As I said she received almost 5 times a week therapy after discharge but this has slowed down massively - didn’t see anyone last week! I’m wondering if we could get hold of tens unit it might help a bit. Glad to hear your recovery has gone so well, it does give me hope xx

[JenP]

Thanks Margaret. 2 days after Mum’s stroke they rang us to say they were giving it another 24hrs and then would just be making her comfortable - she kept trying to pull out her nasal feeding tube. They clearly didn’t think she was going to come through and we were told she was unlikely to have much cognitive function if she did - the irony being that’s the one area that’s hardly been affected at all! It does seem like all the medical professionals give you the worst case scenario so you can’t cling on to something that might not happen. I understand why but as Jeanne says, if we don’t have hope that things can improve there’s a danger that both the stroke survivor and those caring for them will just give up. That’s why this forum is so useful xx

[axnr911]

Hi Jen-- Yes, I do think the tens unit “woke” up the connection of the nerve to my brain. The rehab specialists in the hospital must have thought highly of it as they used it on me every day I was there. They are easy to order over the internet. Of course, there are all kinds of prices --from $35 to $800, etc. Do some research and see what type would serve best. I bet you could find a decent one that is affordable. Maybe the cost would be covered if your doctor prescribes it??? I couldn’t stand up by myself at first, either. The therapist had to hold me up to “force” me to weight bear on my weak side. I’m am small, so one strong person could help me with him on one side and a rail on the other. One man in the hospital was very big, so they had 2 men, one on each side to hold him up and they made him stand and try to walk between the rehab rails–even though he couldn’t move his legs. They felt this was very important as the weight-bearing wakes things up. That’s why leg and walking recovery comes before the hand/arm dexterity. Do you have a couple of strong people that could support your mom and “practice” in between the rehab sessions? (Be sure they are able, so your Mom doesn’t fall. Check with the doctor.) Maybe this would help. I know I felt tremendously better and more positive when I could stand up. I know your mom may not be able to use her hand/arm now, but if she begins to get some feeling back she can begin on her own small exercises. When I sat home at night while watching TV I would pinch exercise putty (which can be ordered on the net- comes in different strengths. ) In time I moved on to squeezing it in my palm. Months later I had small 1, then 2-lb weights. Now I play the ukelele. Don’t lose hope. slightly_smiling_face: Jeanne

[ManjiB]

Hi - well done @MargaretH and husband.

Your experiences sounds familiar.

My Mum also had a severe stroke 3 years ago and we were also told the same (she was nearly 90 years old when she had the stroke).

Like you we feel poorly supported or unsupported and certainly there is no specialist help that we can talk of. Physio, SaLT etc. not afforded to us as assessments suggested Mum was unresponsive and would not benefit. Only thing they seemed to be able to offer is palliative care.

We kept banging away and refused to take “No” for an answer, even when we have been told “No” many times for the same (repeated) request e.g. physio.

Covid has definitely been used to hide behind and apathy/lack of interest/lack of knowledge from some quarters e.g. GP has been all too apparent.

In the end, we had to keep plugging away and remain positive.

We had past the 3rd anniversary of the stroke and Mum remains heavily dependent for help (2 carers). Despite that she seems to be in a positive frame of mind, though she does have tough days, but that is normal for most people I guess. In fact, even as I write this, she has burst into song!! J It is such a joy for us to hear her “sing” - it’s not real singing since the stroke has robbed her of the ability to speak, but she makes noises and the “singing” is definitely a song in her “new” language.

I wonder if I should get a ukelele like Jeanne @axnr911

In summary, she has limited right side mobility, is still Nil-by-mouth (PEG for food, water and medicines), double-incontinence (permanent catheter).

We are trying to get the catheter dependency removed as it (catheter) causes problems, mainly UTI’s which are quite horrid.

Nil-by-mouth – after 3 years she has still to accept food or water by mouth and we have no idea why (I will write a separate post on this topic as I would like to understand why this might be i.e. why would she choose (as she seems to be doing) to refuse food and water by mouth.

Manji B