I am the main carer for Helen, who had a severe stroke 3 weeks ago. We live in Scotland. Does anyone have experience of a personalised plan under the Scottish Government scheme to manage a stroke patient at home?
Hi Elizabeth
I am sorry you haven't received a reply to this yet. You may want to join the Scotland group - https://mystrokeguide.com/social/groups/37/group-activity
Or even the Renfrewshire group to talk specifically to people based in Scotland - https://mystrokeguide.com/social/groups/44/group-activity
Or even pop this message on the main wall.
Thanks
Vicki
My husband had a stroke 3 weeks ago and is now recovering well at home. I wondered if you could let me know how to get a personalised plan please, we are 'winging' it, using the internet and leaflets. Many thanks
Lin
Hello Lin,
my husband was discharged after six days because he was so mobile so no plan was put in place. We continued the exercises given by the OT and physio in the hospital. After 3 weeks I contacted the Stroke Association who gave me the phone number for the Community Support team. He finally started a short programme with physio in the hospital gym and an intermittent programme by the OT at home. But this was only started 7 weeks post discharge and all completed within 5 months.
We used the help and advice given to utilise what we could do ourselves. We are members of a health club so had use of the gym, pool and exercise classes. John had six weeks private tuition at home by the Pilates teacher then he joined the class (for a while). ?. In the pool he found himself swimming in circles because of left weakness. ? We drove down to the coast several times a week can so he could take a short walk along the promenade. However, one of the most important things for him was that we continued our usual socialising. We quiz, dance (just watching), U3A activities, entertain etc etc. Of course, all was controlled by his Stroke Fatigue. We’d often go out but need to return home early.
As many others will tell you, SS are regularly left to ‘get on with it’ so we wish you all the best in your quest. This Forum is a tremendous support to SS and the people who support them. Take care and make time for yourself, too.
Veronica and John
Hi Veronica and John,
Thank you so much for your reply, such a scary time! Pat ( my husband) is desperate to get back to work, but is still so fatigued and confused. I want to encourage his recovery, but feel I have to put the brakes on him, not sure the right way to play it. I'm back to work, so am arranging people to be with him, when I can't. It's great to hear from someone who has been here too, all the best to you both. Thank you
Lin
Hello Lin, as others will tell you, slowly, slowly is the main advice as a Stroke is actually brain injury and needs time and rest for recovery. Stroke fatigue is the biggest issue and is the brain saying ‘hold back, I need to readjust, reroute, rest!’ Nic will probably send you the link for ‘ Letter from my brain’ although you can google it, too. It’s a great letter. The main thing is, Pat is here, alive, home when so many are not. Cherish that and encourage him to move forward slowly. Work can wait. If you find time to trawl through the many posts on here you’ll see much discussion and hear experiences from a whole host of people, Survivors and their ‘families/carers’. Their support is invaluable. My husband made an amazing recovery initially but progress slowed off very quickly because of SF. There is no way he could hold down a job now though fortunately we’re both retired. However, there are many others in the same situation as you and Pat and will be responding to your post. Meantime, take care of yourself! It’s very important to have Lin time. V&J
Dear Lin
It is indeed a scary recovery.
Every stroke is different.
It seems to me that it is up to us to effect our own recovery. No one else can do it for us. As I go further and further down the recovery route, this is becoming more and more relevant.
I wonder if Pat really wants to go back to work, or is it that he really wants to feel "better".
If we "overdo it" we are likely to relapse and we dont want that. Recovery going backwards is the pits. The catch is that no one can specify just what is "overdo".
My experience is that return to work in less than nine months is usually a disaster.
Whenever return happens then it is essential to phase it in. If Pats workplace has an HR department then use it. Ask for a person with post stroke knowledge.
So I think you should wait patiently in the background. Try to give Pat options, but in general I would prefer my spouse to back off.
I had a fairly small infarct and have dodged the worst of the diasabilities. I am almost three years in. I do a tiny voluntary job and at first it slayed me. No way could I do a full days work let alone a full week.
I will get there in the end. Progress over three years has continued. SF is the biggest problem.
Best wishes
Colin