Hello; Hopefully I am posting in right place - first time posting.
Unfortunately my father had a what seems to be quite a severe hemorrhagic stroke a week ago. Whilst we are happy with the progress he has made so far and I am aware it is early days, I am not hopeful in the long term.
He appears to have quite a lot of brain damage - for example, he can’t go to the toilet on his own - doesn’t know really when he even needs it. Can speak but it’s garbled and he is confused; can’t follow simple instructions.
As it stands at the moment; there is no way my mother could look after him - she has her own health needs - I am at a loss to know what to do for the future and what the options are?
I’m assuming he will have to go into a care home of some sorts - can anyone guide me as to the options or contact someone in the ‘know’ so I can start preparing.
@badge97 hi & welcome to the community. Sorry to hear of your dads stroke. It sounds like he is making some progress even at this early stage. Stroke recovery is definitely a marathon not a sprint do you need to be prepared for that.
When the time is right if your dad isnt able to return home he will probably go into a rehab facility to continue his rehabilitation. I would speak to the consultants at the hospital to find out what the plans are for him…although it might be too soon to say yet.
Before he could go home he’d really need to be assessed by occupational therapists to see if he would need any adaptations made at home. You could also touch base with adult social services in your local area as he will likely need a care assessment. Most of this should be sorted by the hospital though. If a care home is likely you could start investigating places but you need to make sure they provide the right sort of care for your dads needs & you probably won’t know what that is for a while yet.
Is he gettig physio, speech & language support at the mo? If not maybe ask for thar and you can do some things with him too. Be prepared for him to get tired very quickly so don’t overdo it. Ask the hospital what exercises may be suitable for his current level.
Many people improve loads after the first few weeks and can continue to do so for a long time so maybe right now you’d be better taking time to absorb what has happened, see how he goes on for a few weeks then start to make some decisions.
Hello @badge97 and welcome although I’m sorry that you have had a reason to join us.
In the first week or two (or 12) things will be very up and down and muddled. In fact there’s been similar posts in the last few days and I would suggest you read this thread and the threads that it references.
The symptoms that you talk about your father displaying do not necessarily mean that he won’t regain the faculties - They’re certainly not uncommon in the first week or months.
The magnifying glass of the top allows you to search for What’s been said before which is most things including preparing for care homes but I would leave it a few weeks before you conclude that is the necessary pat
Ciao
Simon
Hi @badge97. So sorry to hear of your dad’s stroke - sending buckets of love.
My mum had a massive ischemic stroke 6 weeks ago and is still being fed via a stomach tube through the nose and wears what are basically nappies. The staff caring for my mum are brilliant and are explaining things all the time to me and my step-dad, so I know that there’s always potential for more improvement and the same probably applies to your dad who is in the very early stages of recovery. He’s yet to reach the stage where going to the loo is possible, for example. But it doesn’t mean it won’t happen in the future.
My mum’s upward trajectory increased significantly in week 4-5. But it’s not a linear upward journey.
It is a tough journey for him and his loved ones, but it IS early and there’s potential for many more improvements. So take heart in that.
Do you talk to the senior nurses or the consultant taking care of your dad? Can they have a good chat with you to explain the possible path to recovery? They probably won’t be able to predict things which is hard to hear, but they can probably give you more information about how other patients with similar strokes have recovered in the past.
Something I’ve learned is to take things day by day - it’s hard, I know. I realise I’m giving you advice which I’ve just been given in response to my own post! But sometimes we need to hear it from other people.
Take care of your self and feel free to DM me.
It is very shocking when your parent has a stroke. I understand your feelings and your fears.
My mother had a moderate/severe hemorrhagic stroke like your father. She ended up recovering very well physically. For the first few weeks, she couldn’t talk well and was pretty much completely paralyzed on her right side. Her memory remained intact, but she was not emotionally normal in the least. Over time, everything went back to normal for her on a physical level: speech, walking, balance, writing, etc. It was amazing for someone in her 70s. After a year, her only physical issue was some weakness in her affected hand, which was about 80-90% or so recovered.
That said, that’s where the party stops. My mother lost her mind over from her stroke/PTSD. While certain aspects of her personality stayed intact, as well as her cognitive skills and memory, she was never the same again. She regressed over time and became very mentally ill. Unfortunately, she came to develop seizures and contracted sepsis in the hospital. She died a few days later.
We always tell ourselves that her mind was never coming back. Her quality of life was basically zero despite having a tremendous physical recovery. My father and I were no longer going to continue caring for her in the state she was in. We had reached the end of the end. A care home was coming for her. I am glad we never had to put her in one.
All in all, no one really knows how someone will recover after a stroke. Every patient and case is different, even though all stroke patients have similar issues/behaviors, etc. Some recover very well mentally and physically, and some don’t recover well at all; likewise, some fare well mentally but end up with long-term physical issues. You can’t make an accurate assessment until several months later/one year later. Progress is always possible for most, however.
I give your entire family my sincere compassion. May healing come to your father.
I am always happy to see you here. I think often that it must be so hard for you to be here where most of us are recovering fairly well, even if it seems like a snails pace sometimes.
Thank you for being here with a unique perspective that is so helpful for many of us.
That was such a beautiful thing to say, DeAnn. I have no words for your “special words.”
For many, the journey to recovery is long, arduous, and seemingly impossible. But you just keep going, hoping that even the smallest thing can get better. You do the best you can.
I sincerely wish you the best in terms of recovery and health.
Update: two weeks on my dad has made phenomenal strides in his recovery - so very encouraging but trying to be realistic & aware that he may regress a bit.
There’s now talk of him going to a rehab unit perhaps in next week or two.
I’m a bit confused as to the timelines I’ve been told however - for example there seems to be an arbitrary limit of 6 weeks in the unit before he is expected to go home.
Has anyone had experience with a rehab unit able to advice?
I didn’t think there was a time limit. I went to the rehab unit in Oxford and there was no mention of timescales. I only managed 2 weeks as I hated it. I managed to recover better at home with physios coming to me. It is almost impossible to get the sleep that is so desperately when needed you first have a stroke, much easier at home.
Amazing how different these rehab centres are. The only entertainment we had was the TV that was left on 24/7 and used by the completely deaf woman in the bed opposite. Hence the lack of sleep for the rest of us. Honestly if I’d been there any longer I’d have been shimmying over the wall myself
Hello; it’s been a while since I posted. The below is a bit of a rant/context but there is a question at the end & would be grateful if anyone could answer?
My dad is still in hospital and has made good recovery of his physical attributes & can do tasks (such as shave) which he wouldn’t have come close to doing weeks ago.
Nonetheless, his cognitive abilities are still quite badly affected such as his asphasia, lack of decision making & sometimes he’s quite confused.
He has had days at a time with almost no sleep which has made him much worse than otherwise when he’s had some sleep.
It would be fair to describe him as one of life’s ’characters’ and he’s a bit eccentric. He always says what he thinks without much of a filter. He’s also a proud man who displays frustration when certain staff members are barking orders at him etc Others who are kind and patient see his best side.
Because he is understandably frustrated by the situation he has been seen to be ‘aggressive’ by some (which is laughable to us) & therefore I get the distinct feeling some of the medical staff see him as difficult coupled with the fact they are struggling to find a suitable rehab centre for him.
A dr from rehab team (?) said to us that they think he has pre-existing dementia (he does display dementia symptoms but his bleed was in that area of the brain that affects decisions, speech etc so no surprise) and that he didn’t know if rehabilitation would necessarily be correct course of action.
I get a very strong feeling they are trying to wash their hands of him as they want to release his bed and it’s too difficult to get him a rehab place.
If anyone has any suggestions on how to approach the situation (I think it would be very unfair for him not to have any rehab) I would be extremely grateful.
He might still makes a lot more improvements – physical and mental. It’s hard to say. How old is he? That factors into it.
My mother had a moderate/severe hemorrhagic stroke. While she made almost a complete recovery physically, she never regained her mind after the stroke. Sure, her memory and many cognitive skills were left intact, as was her sense of humor and some other personality traits; however, she was never the same again after her event. Over time, her mind got worse and worse. There was nothing we could do. She didn’t have dementia, but she may as well had it. She wouldn’t bathe; she had no desire to do much of anything; and she was combative and delusional at night; etc. That is only the beginning of it. There were times where she would act 70%, but it was all a big tease in the end. It was fascinating, though, that she was able to put on a good face for strangers and her sisters/brother, though in the second year, that started to change as her mind further deteriorated.
Again, it’s hard to say what will become of your father. Things can get much better, but you have to be realistic, considering his age, current mental state, etc. Strokes are just not predictable.
Wishing you and your family the best. Don’t give up. Stay in touch. Take good care.
You could always ask for a 2nd opinion to see what they say. I’d also get the drs tonexplain why he wouldn’t benefit from rehab and see what they say. Could you try doing some rehab exercises with him yourself & you could then perhaps demonstrate to the drs that it is worth the effort.
And yes sadly if they are no longer medically being treated by the hospital then they do look at ways to get them home.
Is he mobile, can he walk? And what age is he, if you don’t mind me asking?
I’m 62 now and my cognitive abilities have improved steadily over the 3yrs since my stroke. To the extent I was back driving around 16mths after my stroke. But no two strokes are alike, and my stroke was mild in comparison to many on here. And yes, I had the confusion and it was impossible to do things like multitasking, decision making etc. I also had aphasia, couldn’t communicate at all in the beginning. I still have mild aphasia but not so noticeable now, and doesn’t stop me from making myself understood
As for sleep, I got virtually none for the first few months, but I did go to bed and close my eyes, and I “napped” a lot during the day. Now I can get a full 8hrs sleep, I think it’s been that way for at least year now, but the climb to that was long one.
Perfectly understandable being stuck in hospital for so long, I’d have climbing the walls after a week. Not enough brain stimulation, he’s clearly ready for the next phase of his rehabilitation. And that would be to get him into an appropriate rehabilitation unit. He needs to given that chance because no medical expert truly knows what is going on in his head, only he knows that and I assume can’t convey many if any of his thoughts or feeling as yet. It is sooo frustrating and scary as heck suddenly not being able to speak, the sentences can form perfectly in your, you can understand perfectly what everyone is saying but the minute you open your mouth either nothing comes out at all or eventually comes out garbled. Some people do come out with words, that make absolutely no sense, even worse when to their ears they’re speaking perfectly coherently. Mine went from nothing to garbled, to stammering, to simple short sentences to simple conversation. I’m still a work in progress It did take the best part of 2yrs to reach that point though.
I attend a local Aphasia group where there are stroke survivors in varying stages of recovery, and all with varying speech issues. The youngest in his late 20s the eldest in her late 80s
I feel for your dad and I think you should put your foot down and put an “r” at the end of “badge” and badger the heck out of the hospital to get him into rehab And reassess his progress from there after a couple weeks maybe.
Thank you for sharing - Im glad your doing well -as you say (& is becoming more apparent to me) no two strokes are the same - he is 69.
He has deteriorated quite a bit in the last week & now doesn’t know who we even are anymore.
He was responding well to the small amount of rehab he did receive but they have messed us about no end for weeks & haven’t found him rehab and have now changed their tune & just want him off the ward.
Interestingly he said at the beginning of last week that he felt they’d given up on him & he was going to die in the hospital. Today he’s totally out of it - almost vegetative - it’s heartbreaking.
I’m now angry at the lack of action and care they’ve shown him so will be seeking out legal advice - not that will necessarily go anywhere but that’s where I’m at.
