I am the sister of a stroke survivor who had a massive stroke almost 5 years ago. He lives in an island in the med... there are no help groups there and little help from his neuro or doctors. I live & work in France and my brother has a carer who is like family to us. I have done everything possible for my beloved bruv and go over as often as I can (a week or so every 5 weeks). I encourage him in every way I can and have put a lot of things into place , including a recent move to a lovely independent residence complex where there are lots of opportunities to meet people and join in social activities. needless to say, I have read every book I can about stroke recovery, brain plasticity and exercising & meet a couple of French stroke survivors in my neighbourhood.
My brother’s stroke was massive and has left him hemiplegic. He has also had a few epileptic fits and takes medication for this.
He has always had a problem with fatigue but this seems to have got considerably worse. I know that fatigue is a huge problem for everyone and my brother’s epilepsy medication also seems to contribute to a fuzzy mind. He walks a little, gets physio 3 times a week but spends most of his time in a wheelchair. He always goes to bed at 6.30 pm when the carer leaves after supper but now he returns to bed to sleep after breakfast until midday and also sleeps most afternoons. Reading the paper, doing crosswords and even watching a decent film on the television are becoming rare.
My brother seems to have settled into the option of doing as little as possible. He denies this or makes excuses and will never talk frankly to me about his fatigue. I ask him if he is exhausted during the day as he really does sleep deeply in the mornings... he just says he is “weary” and says that he goes to bed to “relax” in the afternoons. He will not drink water despite my haggling and now seems indifferent to making any efforts to improve his physical and mental health. We used to note his “victories” when he managed to do various new things. Now he doesn’t note any “victories”. Recently he has become breathless when walking with the carer and I’m seriously worried that lack of physical and mental activity will lead to dementia and the eventual impossibility of doing anything physically demanding. I have read that Brain connections & plasticity need constant effort and sollicitation, otherwise the brain just becomes lazy and connections are lost...
I’m sorry to be so long in my posting but any help, suggestions or similar experience would be comforting to receive! I want to help my brother in any way possible and am at a bit of a loss as to what to do.
I’d like to congratulate all those stroke survivors who fight to deal with all the issues related to their new lives and to all those who are involved with helping family members and loved ones. It’s hard to reconstruct life, remain positive and go onwards and upwards but you do it! A special big hug to Colin from Paris ...
what you describe might be an emerging depression. I have not experienced this myself but it is very common after stroke. I have some experience as a family member is currently being treated for it. I don't know if you can get this checked out? so it could be more than fatigue, though I know for me fatigue affects my mood and motivation, and it becomes a vicious circle as mood affects fatigue and down we go. as I say fortunately I have not experienced a full on depression but I do know that this can be debilitating and very serious, and not something that the sufferer can lift themselves out of on their own. it takes it out of the carers as well, as I have experienced recently. my elderly mother has had several crises with depression episodes, and is currently hospitalised. I can only share my experience. so you will need to get expert advice.
I am so very sorry for your brother's stroke, may he always continue to recover.
I am the wife of a stroke surviver, my husband had a stroke 5 months ago now. I am no expert, but I can only tell you about my husband at the beginning. He was very down, talking about dying, not participating in exercises, and saying he saw no point to anything any more. So the medical team, with his agreement put him on an antidepressant, and his mood lifted considerably, to the point that he now is very active in doing his exercises, never talks about dying, and is expressing once again an interest in his old hobbies.
I would encourage you to read, if you can, posts from stroke survivers and their amazing recoveries. One of the latest inspirational stories I read recently onhere is from a lady called Carole, who, after 14 years in a wheelchair, being totally paralysed, now walks with a walker, goes out socialises etc. I have told my husband all the positive stories I read about, so he can see that you can indeed recover after stroke, and it has helped him a lot.
The antidepressant will take a few weeks to take effect, but, from someone who was afraid of taking them for myself, I can honestly say they saved my husband from himself, and allowed us to help him too. Please, tell your brother that any victory is good, and that now there are a lot of clinical trials about stroke to do with stem cells, and that soon enough, stroke survivers could be completely cured. Maybe I am a cup very full person, but that kept me going until now. I hope I have helped in some way.
Oh dear, yes fatigue is a big issue for all of us stroke survivors, I too went through a phase of not trying to do things as it was easier not too, however something clicked for me and now 2 years post stroke I am doing a lot more for myself. Infact I am going to try swimming tommorow for the first time since. Before I could do 60 lgths of my local pool, I probably wont manage 1 or 2 first time but I will build on it, I find setting myself realistic goals helps me.
Does your brother have an english speaking doctor, who can maybe arrange for him to see some specialist in the field to help motivate him. Are there people in the residence that run it? who could maybe give the encouragement. Can he get onto the internet and register with this Stroke forum, as I find reading a lot of the posts encourages me. I am sure all us stroke survivors wish you luck.
Thanks for your giving your own experience Wendy ...unfortunately No doctor is interested in my brother. I even have to insist on them giving him blood tests once a year! So no hope there... however, he does have a great physio so I’ll try that avenue. And bullying (only joking!) .. My brother doesn’t even consult his e mails so no hope in getting him on the Stroke site I think ...but will try .
all the best to you ...keep up the determination and I’m sure you will meet your goals ??
ive taken some time to reply as I’m just back home after visiting my brother and running around doing everything that needs to be done when I go and see him.
My brother has never been pessimistic and has been on anti depressants for years (4 to be exact). He has just become totally. Indifferent to everything now... and won’t even open up and talk to me . I’m a huge optimist and encourage my brother constantly but now I’m a bit lost as to how to Proceed. I shall find Carole’s story and show him ... maybe that might start a spark off !
many thanks. Lots of strength and energy to you too !
Thanks Tony . I can’t get ANY advice from anyone for my brother - he lives on an island where they don’t speak excellent English and the docs and medical profession don’t care about mental health or aren’t equipped.
I don’t honestly think my brother is depressed as he takes anti depressants & jokes often. Having just returned from seeing him for several days I have managed to get him to do more but I’m sure he is only doing this for me and he makes no effort to help himself or set goals any more.
I return to see him in just under a month so will see how things are going ...
thanks for your posting and Good luck with your mum - depression must be awful for her and you .
Hi Muffin. Like Colin I am three years post stroke, but from the beginning I fought to recover every inch of recovery possible and still like fight now to improve further. Stroke is both an emotional and physical body blow and, undoubtedly, the emotional impact affects recovery. The initial reaction is to live ‘in’ the outcome rather than strive against it. In other words, you accept the outcome of the stroke and do nothing about it. I really had to fight against this feeling as well as deal with post stroke fatigue. I battled to stand, to walk, to do daily tasks and to go out and do things again. Regarding fatigue, I was advised to rest for no more than an hour and to try not to go into a deep sleep. I now rest for an hour at noon and am then fine, for some reason, until 11.30pm. I do have down days, but push beyond these and live as well as I can. I cook, bake, go to three exercise classes a week and can have short break holidays. These have to be planned around my partial disability but can be taken and are enjoyable.
This looks like, as Anthony says, increasing depression. Perhaps that needs to be tackled. Setting goals is good, but you can enter a mindset where it doesn’t seem worth bothering. I have a partner, fortunately, and from the beginning he gave me ‘tough love’. He would make me try things and tell me they were possible. He still sends me out for my short morning walk and does not allow me to make excuses. Where I need his help I get it, but I have always been encouraged to do what I can, though I would do that anyway. I encourage him ,as well, to have time away from me, because caring can be draining. That said, we have just come back from a short stay with a friend in West Wales. However, because I am a slow walker, I don’t mind him walking further than me to explore things. I will sit on a bench contentedly if necessary.
Sorry to rabbit on, especially about my own achievements, but I cannot emphasise enough the progress that can be made. Doing nothing will only make matters worse and lead to muscle wastage and even more incapacity. So do try to sort out his depression and do all you can to stimulate the smallest activity. I am now 75 and time is limited, but life can still be joyful in adversity. I wish you both all the best.
Muy is improving a bit but had another crisis recently due to side effects of the antidepressants!
I can't do much but I'm able to talk to people on the phone. so I do what I can remotely.
you have a very tough situation e deal with, I cant imagine how difficult it is, it must be very isolating. it is very difficult supporting a depressed person. and with your brother coping with stroke recovery as well, that is a very complex set of issues. in my early days post stroke I was utterly dependent. I was fortunate to be able to be cared for at home by my wife and family. I know others do not have that level of support. I dunno how E would have coped without it. not well I suspect. also fortunate e have had very good local NHS support. again I know that is not everyone's story, but I am grateful for it and will join any campaign to stop it being sold to the yanks or anyone else. I am now three years post stroke, I can do a lot more but I live with chronic impairment, and identify as disabled. I live in hope that I will recover other functions but it is intensely frustrating, and I am fed up with being patient and dependent. I find it helpful to get angry with it. for all the heroic stories I hear Itdoesn't diminish the fact that a stroke brings a devastating change of life. tbere is much grieving involved not only for what is lost kn tbe present but what dreams cannot now be fulfilled in the future. it is no surprise that low mood and depression are common after stroke. i am grateful I haven't experienced depression but I have certainly had some vt low points. we are encouraged to call ourselves survivors. but I do think that sometimes the gung ho motivational language obscures the very real suffering involved in the stroke event and even more so in tbe tedious and frustrating months following. I often find the realism of other's stories og suffering more uplifting than sharing a success, though I don't belittle that. I do share my own from time to time.
your love and solidarity with your brother will be so important believe me. I would be a wreck without my family and friends who have supported me.
Thanks for all your encouragement and personal experience.
I shall show your mail to my brother in a couple of weeks when I go back to spend quite a bit of time with him. As I said, I live and work in France and have managed to get a job where I can fly off to be with my brother as often as possible. I have always encouraged & pushed brother to do as much as possible but I can’t work against him if he doesn’t want to fight anymore.
I hope we’ll get over this Hurdle. I am a natural optimist & I don’t think my brother is in depression as he is on anti-depression tablets. He laughs and jokes a lot . There are no doctors of any quality on the island where he lives so I shall do whatever I can .
Again, a big thanks - every little bit of advice and / or suggestion is helpful !
Keep up your good work, bravo to both yourself and your partner ?
Oh Tony I was very touched by your message. It’s so nice of you to take the time and make the big effort to write to me.
I can understand your remarks on the « gung ho » attitude which is held by everyone. This may sound weird but I enjoyed your frankness as I often reflect on how important it is to be determined and positive but ponder on the massive efforts to really remain moblised & the huge emptiness or depths that you must fall into. My brother doesn’t seem depressed - just indifferent and low - he’s already on anti depressants so I shall have to see.
I have always told my brother that he has the right to feel miserable and utterly frustrated or despondent & that he can always moan, shout, cry or shut off when he feels like that. I’ve also told him that he really has no choice but to soldier on & do as much as possible. I can’t possibly understand how my brother feels deep inside but I’m always there for him, to hold his hand, to listen and do whatever I can... he knows that whatever happens he is not alone (even if he must feel like that from time to time). I try to get us out and do different things in short bouts but I know too that sometimes I have to leave bruv alone. His tiredness is a huge obstacle. I’m going back for 2 weeks in three weeks time and will tell him of what you’ve said and what others have shared with me. It’s precious help for me!
Its been difficult & frustrating to find so little professional help where my brother lives but I’ve managed to get a couple of great physio’s who are great and I’ve done as best as I can. Lots of reading and asking people around me in France too.
i believe you when you say it’s tough ... I can only imagine what it’s like. Bless you for sharing your own feelings with me. You have helped me more than you can imagine.
Im sorry to hear about your mum, I do hope that she gets the help she needs... and that you manage to keep spirits up too ! A big French hug to you!
Thanks Muffin, really appreciate that. Sometimes just telling it like it is, is a relief. Thanks for persevering with my endless typos. Some of my posts are almost unreadable!
Mum is doing ok and is in an intermediate care home between hospital and discharge. I am taking the role of chief go-between I can't be on site but I can talk to people on the phone and help untangle bureaucratic knots. So some things have got better, even a year ago this stuff would have been beyond me. A year ago I had intense problems with fatigue, and at the same time had to struggle with holding on to my job in a very toxic workplace. We have parted company now and I am beginning to put myself back together after what was a very humiliating experience. There is life after stroke, I do like that strapline
Though it reminds me of Mr Spock's famous line: " it's life Jim but not as we know it" makes me smile. Life after stroke is a strange new world.