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.
My experience of the rehab unit (with the exception of their knowledge on cpsp and the food) is really positive.
May be I was lucky in that a community developed within. The staff were pretty good, arranged barbecues, would bring tea and coffee out to you in a nice garden. Very approachable. There was an element of pushing each other on to try new things.
Physio was good, just not enough of it. Exercise bike got a lot of use.
Even the entertainment in the evenings was good.
The stay time seemed to be limited by what the NHS would pay for.
Not sure if this is a good reflection on the physio or not but the week after I left, someone jumped over the wall and ran away !
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
I perhaps forgot to mention, we all had our own rooms, on suite for when the mobility not so good. Each room had a TV and some of them allowed you to cast the mobile onto the screen. Could happily watch you tube or anything you fancied on a decent size screen with the free WiFi.
I get the feeling Oxford is a fair bit ahead when it comes to the hospitals. Perhaps the north Bristol rehab facility known as BIRU (brain injury rehab unit) had the slight edge.
Although which numpty thought it would be fine to have a fair old slope from the garden back in to the unit I don’t know. People used to take a run up at it, pushing the wheels on the wheelchair like crazy and hoped they had enough momentum to make it inside. A lot of people tried, a fair number failed…not enough speed or sometimes too much and crashed into the door frame if they misjudged it.
Of all the places where you might expect a level entrance…
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 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 not always 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.
