Hi there all ,new member here,
My dad had a stroke about 4 weeks ago and it still in hospital. I have been unable to visit him so far because of covid restrictions but my mum has been visiting him every day.
We are concerned that the physios etc are giving up on him too early. He is a very determined man but we are worried that he will be sent home because he has been in hospital for 4 weeks and has not made enough progress for NHS protocols. Sometimes what staff say has come across as negative and been exaggerated in terms of saying if he had physio at home, he wouldn't be able to cope with it as "extremely intense" and is an "all day thing",
I am hoping someone reads this and can empathise and perhaps give some advice,
wishing you all the best in trying circumstances,
Hi Tom, Sorry to hear the news about dad. Support for stroke survivors varies. In my area, I had physio in hospital and six weeks physio at home from our Community stroke team. I also had exercises to do every day. I don't know what they mean by physio being an all day thing. Mine was an hour daily for a month and then Monday to Friday for two more weeks. Then I went back to my old stroke hospital for an hour a week for a year.
I do know that some provision is related to what the survivor achieves or is willing to do, but we can all improve. I am still working at my improvement after five years. Please check if there is a Community Stroke Team in your area or ask what support dad will get at home. It is also worth phoning the Stroke Association Helpline. I wish dad and your family all the best.
Hi Tom, hope your dads going ok. I had a stroke 8 weeks I was playing football still until that point so I’m very active. I had physio in hospital and was discharged after 2 weeks. Iv Carried on with physio at home along with
Speach therpist ect. Physio is great they take their time and only spent around 25 minutes doing physio but stopped if I’d had enough. When your dad leaves hospital he will get the help from he after care team for a minimum of 6 weeks I believe. Hope this helps it’s jut my experience but maybe others can shed some light
thanks John, appreciate you sharing your experience, gives me some hope and hopefully rest of family too
thanks Boom79, yeah he has and continues to struggle because he also incontinent. He had a catheter previously but it constantly leaked, we think due to his enlarged prostate. How are you now? Did you regain movement? My dad is unfortunately in his late seventies but was quite fit for his age, fairly active but had to have a bladder tumour removed and that's when the catheter stuff and then 2nd stroke happened. The first was ten years ago and he was back playing tennis in time!
very reassuring to hear people saying about their physio experiences, gives us hope, thank you
Sorry to hear all the other issues with your dad, hope they improve soon. Mmmm so so im only 41 which they say is on my side. Specialist said I should of been dead but as I’m not I shouldn’t be able to walk and talk so im
doing really well considering. It’s just a shock as it is to all when something like this happens. But il continue with physio and therpist and extra exercise wheny body allows me. Just got to get used to slowing down at the moment
From my experience physio ends too soon. It's best, I think, to do asome research and find out what's available locally to assist him to continue to progress with his recovery.
After physio stopped for me I moved onto Reablement Services. A short term service intended to help you get back doing the things that matter. For me that was walking. Then I joined an exercise on referral program at my local gym where I met a personal trainer who I still work with now. I also have an ARNI trainer who works with me on arm and hand exercises; although I've not seen her since lockdown as she's not keen on Zoom. Fortunately I've got a copy of The Successful Stroke Survivor book by Tom Balchin and that's full of exercises so plenty to keep me going.
the first thing i noted was that Dad has got past the first month. It is often viewed as the end of the danger zone, so thats a plus point.
i get an impression that medical staff say that recovery will be bad or impossible. When i had stroke they were the opposite, they encouraged and said i could recover.
i wonder how many relatives have sued the NHS when the doctors have said recovery will come, but the patient has not done well. Or worse.
i do recall the pressure put upon staff by relatives. A daily battle when visitors arrived.
my physio was very full on. But thats what i wanted/needed They had me showering, shaving and making my own breakfast. When discharged, i had six weeks of home visits. Then i had to arrange private care formyself.
so much of the recovery is down to the patient. No one can really help us to get better, just us stroke survivors.
i would not want my Dad sent home because he wasnt recovering. Indeed i would want him transferred to a recovery ward or home. Once he is accepted home, the hospital will not want to know.
Stroke after care is very very poor. We are the abandoned folk.
but recovery will happen for Dad. It will be slow, months and months but it does come.
i was 90% paralysed but got pretty well within two years. I was 68 when the stroke got me.
Thanks Boom79 soz taken soon to reply..been a long busy time...much appreciate and good luck with your continued recovery journey..hope it has/is going well
Thank you Pamela...apologies re late reply..been so busy..we got him with some pressure applied referred to local Neuro Rehab service..O.Ts, physios, "full service" for mum 6 was...he has had equipment improved and some positive input from them,
What is ARNI?
Unfortunately though he can "stand" on a Sarasteady, the left leg is a problem though still hope, I hope! It needs to wake up...hopefully with time it will improve...area of brain affected motor nerves that side, a few professionals have given hope but a few also took it away or one said "miracles" happen..mum and dad will have to start paying carers soonish I think..free post hospital help running out of time...can request referral to physio via gp but told they might turn down the request so they wd have to pay for physio too...they want to save inheritance money for us three offspring..I just say if he needs care paid for don't worry about me..
I about me, I plan to tell them tomorrow that I have booked train to my home (150 miles away) for 23rd August. I am worried about their reaction especially my mum's but I have to have a break...thing is my mum will need one too..
I can return (open return)within a month)..just feel worried and possible guilt if I go. Any advice for a worried son much appreciated..and all the best to you,
Thank you so much Colin..that is very encouraging and appreciate your honesty, thank you,
Just wondering what help you had at home in terms of family. My mum is 74 (dad 79) has memory problems but we have had 4 cares a day as incontinent of faeces and catheterised..hoping he will be able to use a commode in time and be helped to shower sometime near future..
I have been at my parents since 25th May, he came home 9th June and it has been so busy and mostly stressful, calming down a bit now (touch wood)..
Especially as I have booked train home to Notts for 23rd August..open return for a month...I really need a break..just feel worried my mum's reaction when I tell her tomorrow and how will she cope...any advice for a anxious son? I am the only of 3 offspring who can help much for longer periods as my brother has two kids with his wife and my sister has borderline personality disorder recently diagnosed and has a massive journey to self understanding and enough difficulty looking after herself.
Kindness and honesty extremely welcome..thanks again,
Good morning Tom.
my wife and I live sixty miles from family, so direct answer to your question is that I get and got no family support whatsoever.
I do feel offended that my two adult sons do nothing.
in fact I have two gkids , one is four and I have never seen him and one is six and I saw him as a baby..
looking at things from your viewpoint, you have a life to live. You need to have a break, I suspect you have been main family carer for far too long.
I am strong on the opinion that it is the SS who must lead his own recovery. No one else can do that.
I used to ensure my wife had plenty of time away from me.
you are right to go home. Stroke recovery is agonisingly slow and is very likely to be followed by other age related illness. If you stay any longer you will become tied to mum and dad for a long time.
Also, you need to stay fit yourself.
I could have given a softer response, but there isn't a soft option for stroke survivors, we need to do things for ourself.
Hi Tom. Sorry to hear about your dad.I had a stroke two and a half years ago. I was in hospital for five weeks and very poorly. Try to encourage your dad , I was eighty when I had my stroke and am now making progress. I have gained my speech and am able to walk with the aid of a rollator. I hope this gives you some hope. Best wishes Lilian
ARNI (Action for Recovery from Neurological injury) is a charity that has personal trainers who have been trained to work with stroke survivors to help them with their recovery. It's an alternative to physio that's worth considering. I like that they come to you rather than me having to arrange someone to take me to them.
Are you able to facetime your parents? It may be a way to get a better idea of how things really are when you're not there. Non verbal clues, I think, are very useful.
Just a thought.....