Family affected by stroke

Hi

im all very new to this. My grandma had a stroke 8 weeks ago. Prior to this, she had been fit and healthy and even continued to travel on her own ski-Ing in Austria and playing golf. She was very independent. She suffered a stroke and lost all feeling down her left side. She is slowly, very slowly getting feeling back. However it's a very long road ahead. She's having intense physio and occupational therapy in a rehabilitation unit and hopefully be able to start home visits too. My grandma is suffering badly emotionally and mentally with this. She has extreme down days where she wishes she would have died. It's just awful. Any advice would be gratefully received ? xx 

Hi - Sorry to hear about your Grandma.  When a stroke happens, it causes intense trauma to the brain. During the first 3 months, the brain has to work extremely hard to 're-wire' itself down other channels due to damage caused by the stroke.  Whilst all this re-wiring is happening, emotions are all over the place.  Your Grandma will go through a whole series of emotions in the coming months including grief for the person she was, anger at the slowness of her recovery, bitterness "Why her?", self pity, jealousy of others who strokes haven't happened to that she considers are not as healthy as she was etc etc.  This is all normal and will fade as the weeks go by.

She seems from what you say to be making steady progress and 8 weeks is very, very early days for stroke victims.  I think it's fair to say that most of us will have thought in the early,  bad days that we wish we hadn't survived but each month your Grandma will see changes and that does give motivation to pull through.  Unfortunately it is a long journey to recovery but the fact that she is slowly getting feeling back is very encouraging news.  

Sorry to hear about grandma. Please tell her that many of us thought ourselves to be fit and well before our strokes, so it is both difficult at first to accept the stroke and equally difficult to deal with the physical and emotional consequences. Support for stroke survivors varies from area to area, so is a bit of a lottery. Mine was very good, but because of demands on the NHS it is necessarily time limited.

Please warn grandma that progress tends to be good at first and then slows down. Physio and self exercise regimes tend to be repetitive but have to be done over and over again. Tell grandma she must be determined, but also have a sense of humour. She may well break things, feel very frustrated and she certainly must know how to get up from a fall.

It is important that she realises what progress she makes. I am four years post stroke and like grandma it affected my left side. I had to learn to walk again, tie shoe laces and get myself up and down stairs. Every bit of progress was hard fought for, but it comes. It helps to break tasks down into stages and take time doing them. Every task done, though is a task achieved.

I think the two hardest things to deal with are post stroke fatigue and moods that go up and down. I still have to rest for an hour every day, so I do not try to fight this. There is also a tendency to feel depressed and scared of another stroke or imminent death, These fade with time. Tell grandma it’s okay to swear too. I do if the least little thing goes wrong. For example, this morning I dropped a teaspoon into the food waste container and had to ferret about amongst old tea bags to get it out. Certain expletives were said, but the spoon was rescued.

Tell her also, that whilst she cannot do what she did before, she can still achieve. I cook, bake, go on short breaks and, last Saturday, enjoyed a night at the theatre. Yes, I have a weak left arm and hand and I walk slowly with a stick, but I am alive. I can still see beauty in my surroundings, despite being unable to get a bus at will and go on the country walks I used to love.

The best advice I received was, ‘Although you are not yet the person that you were, remember to be the person you are now’. I always bear this in mind. The Stroke Association are a great help too. Wish grandma all the best from me.

Dear Kate

Most of us stroke survivors were fit before stroke. If we were not fit then maybe we would not survive and certainly our recovery is better.

As John says, the follow up is variable area to area.. Its great that she is being given intense physio and OT. 

It would be sensible if Grandma kept a stroke diary. Just a few comments each day. On bad days it is good to look back and see how far we have improved. The recovery is so agonizingly slow that we dont notice any improvement. But it is happening bit by bit.

It is hard to try and deal with the cognitive stuff as well as the physical stuff.The physical side is easier to do. The cognitive less so. The SA booklets are good. Do read them and give Grandma the booklets when the time is right.

Depression does seem to be a usual after stroke problem. As I had depression once, long before stroke, then I knew that I was not going down that route again. So far I have kept it at bay. Smiling is the best option. False, fake, forced or real...smiling helps a lot. If depression sets in then it delays recovery, just when you dont need a delay.

You will have noted you cant use certain words on this site. I too wondered why I couldnt just pass away. I got as close to it as is possible. Crash team etc. But grandma and me were chosen to survive. There has to be a purpose for this. We are special because we survive.

Like John, I am four years post stroke. I am now new Colin. Old Colin has gone and does not come back. There is plenty I can do, just not the things I did pre stroke.

I have fond memories of walking a mile (after just a few months) and of going to my first church service ( about 4 months). I cook, clean, I drive a few miles quite safely. I spoil my cat something rotten. And I just bout manage my long garden. I got lots of veg and I attach the last of the flowers. So there is life after stroke. And there is this forum to help us along.

Colin 

Thank you all for your replies. I have found this very encouraging and given me some relief and hope for my grandma. Your advice and support is so valuable. I have given my mum the link to the stroke guide as I think she will find it helpful and provide the additional support she may need to help her through this with my grandma ?

I am sorry to hear about your grandma. My mum had a stroke 7 weeks ago. She is mainly affected speech and arm wise, however she is doing great, although cannot see her progress as much as her family can. She gets extremely frustrated and very down at times. The last week or so progress has not been as quick as what it was within the first couple of weeks after her stroke, but hopefully she will continue to progress. I have learnt so much about strokes and the affect it has since my mum had one. We try and keep everything very calm and laid back for my mum, and try and give her as much independence as we can, however it is hard when you just want to jump in and take over,  but that's not helping at all, I kind of let her do things her own way.

I hope your grandma makes great progress, it is a long bumpy ride but hold on tight as it will get easier.