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Are you a carer of a stroke survivor? This forum is for you to discuss any issues and support each other.
I have never used one of these forums before but we are all at our wits end and I need some advise.My dad sufferred his 1st stroke in 2010. It affected his mobility but he got to a stage where he could walk to the bathroom and get up and down the stairs so was able to live at home. He and my mum booked a cruise 18 months later but on the first night he fell and broke his hip and ended up spending 3 weeks in a Spanish hospital. When he returned he went into hospital here for a couple of weeks and then into a care home for rehab which was fairly successful and eventually got back enough mobility to return home.Then he was diagnosed with prostate cancer (he already suffers with type 2 diabetes and high blood pressure amonst other things). This is being managed so has not affected his day to day life.Last year he took an overdose of paracetemol and was back in hospital for a 2 weeks to have his liver flushed out. While he was there they discovered he had pneumonia which is why he had been feeling so out of sorts as well as depression.Sadly in March 2013 he sufferred another major stroke. He went into hospital and is now in the rehab unit. This time though he has become incontinent. We have been assessed for a nursing home place but sadly this has been rejected. We jsut donlt knwo what to do as my mum cannot move him it would take 2 carers 4 times a day and then what do we do in the intervals and overnight? Its tearing us all apart to have to even place him but at 5k a month there is no way we can fund it ourselves. Both parents are talking about suicide and the whole situation is breaking my heart.
Sorry to read about the problems of your father. The only advice I can offer is I would recommend you go and see someone local to where your parents live to discuss the options available. The best place for this would be your Local Carers Centre, which would be a chartiable based organisation. You can find your local Carers Centre via the following web-site: http://www.carers.org/.
Hope this helps,
Hi I'm trying to find out information on the effects of tremors in children my daughter had a stroke in the first few day of her being born and I have been told at first it was an essential tremor and then it's a intentional tremor.. I need to no if its progressive I don't seem to get much sense out of her pedritrition. Mild cerebral palsy is suspected and going to be investigated but till she's tested all I'm doing is constantly worrying.
i just need someone to talk to in the same positon as me as i am going stir crazy! i am only 24 and my partner is 24 he had a very significant stoke back in January and although his recovery is coming he can now walk and he is able to use his arm to a certain extent we have just started using the saebo fex ( a spint that is used to keep the fingers straight and a springed device to help picking things up easily) he aso suffers from dyspraxia so he knows something in his head he can describe what it does but physically can't say or do it! he has been told he has a word deafness so will be very hard for him to read or write again but he is trying! he has come so far in 4 months but has felt like 5 years! the better he mentally gets the harder it becomes! i am currently his full time carer unfortunatley i lost my job within days of his stroke or should i say they 'let' me go so made sense for him to come back to his own home with me and thats what he wanted! i really through i would enjoy not having to go to work and it woud be easy peasy..... i have never felt so trapped and depressed in my life! he has a great family but i feel like they could support me more than they are i dont really get alot of time to myselves these days and i am so scared i am just going to breakdown! i don't know what to do............how do you cope? is your survivor the same person they use to be! i am scared of spending all this time trying to help him as a carer that we are loosing our relationship...all these plans we had in life have been put on hold and it just all worries me...! i miss him! any advice would be greatful!
Thank u xx
Sorry to read about your partner. I do not have any experience of younger stroke survivors but there is a charity that provides a unique service to younger stroke survivors and it may help to speak with them. Here is the web-site address: http://www.differentstrokes.co.uk/.
Hope this helps
Hi - I am new to this site and I hope I am posting this correctly. In her home my sister is caring for our Mum who had a massive stroke last May. Mum has carers 4 times a day but my sister is sure that it would be hugely beneficial if she could take Mum for a bath every week. I am hoping that someone may know of somewhere in the Warwick/Leamington Spa/Coventry area that could offer this facility. Any ideas anyone?
I have just picked up your message. In the area I live in there some day care centres (not care homes) that offer this facility, but there is a cost involved. Therefore, I would recommend your sister looks at this possibility.
i'd love a shower but whats the point - no one cares
Hello to everyone. My Mum had a second stroke this year after recovering well from her first one in November last year. She was already nearly blind due to diabetes. Mum is still in hospital and just about holding herself upright in a chair, cannot stand unaided or use her left arm (she is right handed). Recovery is very very slow. but her main problem in the ward is total and utter boredom - she has always been active in the community and was a successful artist until her sight failed. 6 weeks of being in a hospital with no mental stimulation is having a very bad effect on her and she seems depressed and anxious. Can anyone suggest any activity that she can do from a chair. She can't see to read, or see the television and she does listen to the radio. She can't manage any kind of electronic device such as would play a talking book. Frankly although the hospital meet her medical needs there is no effort to stimulate the patients. Unfortunately I am a long way from where she is in hospital so although I visit when I can I can't visit every day. Any advice would be well received. Thank you for reading.
When you say your mum cant handle any sort of electronic device, can she not press play on a CD Player. Maybe you could take a small player in and get her some talking books. The nurses should be able to press play for her, or set it up once in a while.
What about a puzzle? Get her a puzzle board and then a small puzzle to start off with and then move on to something bigger.
it is really boring in hospital, even for me as a visitor, visiting my mum for months on end, I cant imagine what the patients must feel.
I hope this helps.
I was just wondering if any out there knows of any pain relief for arthritis as my husband has really trouble sleeping as he is in constant pain.
He is on co-coda molls so he is not sure what to take?
take two co-codamol 50/500 and a gabapetin. it feels like morphine you feel like your floating
Hi again - I take Co-dydramol for the arthritis but I think you can only get it on prescription. There are other strong pain killers out there as well , but again you can't always buy them over the counter. I would suggest asking your GP or local pharmacist for advice. I had to stop taking anti inflammatory meds because they had a really adverse affect on my blood pressure. Always best to check in order to avoid the possibility of another stroke?? Hope you manage to find something effective as it will make life easier for both of you. Good luck!
My name is Carey and I have just read your post on the Stroke Association website,
which was very moving you are very brave and inspiring person.
My husband had a stroke Feb 2012 and it affected his right side which he is right handed, also it affected his
speech, last year he was getting better until November of last year he had a relapse and felt unwell, no energy
and the doctors diagnosed him of having arthritis in his feet and he also has a problem with his shoulder and
in January he was diagnosed with a hernia, we went to the hospital and they say it isn't an hernia but has to have
tests to find out what it is. It is really hard being his carer as he is a very independent man and he gets so frustrated.
I do hope you don't mind me emailing you but it just seems that you yourself have been through these problems
and come out on top but at the time it is really hard and there seems to be no one to talk to. Has any else got
Or is there anyone who knows of a support group in the Sleaford Lincolnshire area?
Hi Carey - I am not sure if I can help in any way as I do not live in your part of the UK. There are probably support groups in your area so it may be worth ringing the help line or even looking on this web site. I think there is a facility whereby you can put in your post code but I can't remember where at the moment. I know that I had great difficulty finding any local groups near my town but I do live in a rural area unfortunately. I have suffered with arthritis in my ankle for a number of years and it can be extremely painful. I have found that it has been worse since my stroke but that may be just a coincidence. I do think however that losing mobility on one side puts extra pressure on the other as it has to take more of the strain to make up for things. This is not good if you are already in pain to start with. I have found that the tiredness has never gone away completely. Some days I seem to have plenty of energy but it doesn't last ie a few good days are always followed by a few bad days. It is not easy to live with and can be very frustrating. I have been told that I will have to take some medication for life. I have never totally accepted this but I have learned to live with it. Still hate taking the pills though and I have had a couple of tantrums along the way!!!! I have found as well that the stroke has preceded other medical problems ie as well as high blood pressure I have also been diagnosed with type 2 diabetes - that took a couple of years to develop but it got me in the end. Another factor for tiredness but luckily I am not on medication - yet. I must admit that I didn't expect to get the additional problems - before the stroke I was quite fit so it has been a real blow to my self esteem as well as my health. The trouble with a stroke is that it is difficult to know which bit of your brain has been affected - that for me was the hardest thing of all. As well as losing some of your faculties (and that's a learning curve in itself to know exactly what) it also has a huge impact on your emotional and psychological well being. I still take some of my frustrations out on my husband as he is the one I am closest too. I still have occasions ŵhen I feel totally inept and the panic sets in because I feel that I can't do something. So I leave it and try again when I am calmer. Not easy to easy to get to terms with when you have been used to just getting on with things without any problems. Your husband will be going through all of the same emotions and feelings of helplessness. He is probably feeling far more aches and pains than he used to - sometimes I feel as if I've been run over by a bus because I ache so much. And it is so hard sometimes to drag myself out of bed -even after all of this time because the weakness is still there and will probably never go away. On my good days I try and do as much as I can because I know that on the bad days I will not be very workish - over the years I have learned what my limitations are but I still get caught out sometimes!!! I appreciate that it must be very difficult for you to cope with your husbands illness and possible demands. My husband did not handle it at all well because he still wanted me to be the same person I was before the stroke. He could not accept that even though I did not look any different on the surface, my personality had changed to some extent ie previously very even tempered and suddenly very irritable with him. He still has difficulty understanding that I have changed and it has caused a lot of tension between us. But we are still muddling along somehow and we even laugh at some of the daft things I have done - you wouldn't believe some of them I can assure you!!!! I still forget things but age is a great excuse!! One of the biggest mistakes we made was not to get some sort of support or counselling at the time. It was not available in our area and we did not pursue it enough. But I firmly believe that it is essential - not only for your husband but for yourself as well. Try and get as much support as you possibly can. It is not for every one because we are all different personalities and react in different ways but you do seem to be crying out for some support of sorts so try and get some if you possibly can. Try the Stroke Support Team or even ask your GP if necessary. It took us a long time to realise how much we could have benefited from some additional advice or support. We were not as strong as we thought so take whatever is on offer if that is what is needed to help you get through this long hard journey. Take care
Thanks this really helped
I had my stroke about 10 weeks ago. I am trying to figure out if I will work again. My speech has improved but my right side is affected. My current job requires a lot of walking. 8 miles a day on average. I use a cane now. I can walk about a 1/4 mile before I start dragging my leg.Iam 59 years old. Thoughts?
Hello - I had a small stroke 7 years ago at the age of 53 ie small bleed in brain. It affected my left arm and mouth. My arm is still a bit weak but I manage to do most things without problem. My speech was slightly slurred and I had trouble getting the right words out properly - still do sometimes but I have learned to cover it up well - usually by laughing it off or changing the subject. Luckily my leg was not affected at all. No signs of any cause of the stroke at the time despite numerous tests, but after a couple of months I developed severe high blood pressure. Eventually medication controlled the blood pressure but the main problem for me was the constant tiredness. After 5 months I returned to work. My job involves considerable driving and lots of office meetings. I must admit that although I was eager to return to work, the thought of continuing in the same job was extremely daunting. I had tried my best to keep the brain active but I really didn't know whether I was in fact capable of returning to the same job. Could I still do the administration work on top of the driving. However I decided that I needed to know and with much trepidation I returned to work on a "phased in" basis. It has been quite successful. But very hard sometimes. And extremely tiring. I have lost count of the times that I have gone home from work and fallen asleep straightaway!! But on the plus side I have retrained my brain to some extent. I don't seem to have lost the ability to do my job but thank goodness I do not need to carry out any mechanical jobs or even fix anything!! I have been lucky in that my job does not involve those sort of things because I would have given up!! I seem to have "lost" that bit of me but I suppose it depends on what bit of the brain is affected and that depends on the individual stroke and how severe the problems are. I imagine every person is different. Try and be optimistic. You will have good days and really bad days along the way. But if you have plenty of support and can think positively there is every likelihood that you will go back to work. Maybe not straight away because you still have to go through the " healing process" but I am proof that it can be done. I am not going to pretend that it has been easy - many times I nearly gave up - but I got there in the end. One thing to remember is that the psychological effects of the stroke can be much worse that the physical problems and that is why you need as much emotional support as you can get along the way. I was very independent which is good in some ways. But sometimes I was too proud to ask for help and that didn't necessarily do me any favours either. It may be very hard to admit to colleagues that you can't remember how to do something, or that you are not quite as fast as you used to be. I learned to swallow my pride and laugh at the daft questions I needed to ask. You soon learn who you can trust and rely on to help you. You can distance yourself from others if necessary because they are the ones you don't need. I truly hope all goes well for you. Make sure you get plenty of rest and rehabilitation before you even think of going back to work though because it will be tough in the beginning. But it does get better!!! Take care. El
Hello my name is Diane Dunn and I am doing a research study on carers experience and needs of caring for a family stroke survivors. I would be extremely grateful if you would like to participate in a questionnaire. The questionnaire will focus on your experiences as a carer, your views of social work support which you may have accessed/received and any suggestions on how support services or professionals could improve in order to meet the needs of carers.
1.Has the project got ethical approval? If so, who from? Yes from Liverpool John Moores University Ethics Committee.
2.Recruitment criteria – who are you looking to recruit to your study?
Adult carers who have or are currently caring at home for a family member who has suffered from a stroke.
3.Title of the project
Exploring the experiences and needs of carers of family stroke survivors.
4.Summary of the study
The study will explore carers personal experiences and needs as a carer. It will explore the various impacts caring can have upon their life and their views on social work support they have had or are receiving. By gathering their views and needs it may help to identify gaps in service provision, which may in turn help to improve support services.
5.What will the participants be asked to do?
They will be asked to read an invitation letter and participant information sheet which explains what the study is about. If they wish to continue to take part in the study they will be asked to complete a short questionnaire.
6.What will happen to the data after the study has finished?
Data will be used in a dissertation however all data will be anonymous and confidentiality will be kept. Once the study has been completed all data will be destroyed. (Approx October 2013).
7.What information will be available to the participants after the study has finished?
They will be asked if they would like to receive feedback of the results of the study which will give them a indication as to what the study found. They would have also been provided with useful contact details of support services which is listed in the participant information sheet.
My contact details:
Full name: Diane Dunn
Institution I study: Liverpool John Moores University
Email address: D.M.Dunn@2011.ljmu.ac.uk
If any one would like to take part in this research please contact me on the above email address.
Hiya Diane, My Mum has only just recently gone into hospital, after suffering her 5th major stroke in as many years - Dad has been the principle carer but myself and my sister have also been caring for mum - i would be happy to take your questionaire, please send it to
Thanks Helen Sandlan
Thank you for your recent posting on Talkstroke. I just wanted to let you know that I have edited it to remove your personal contact details.
All posts on Talkstroke are public and can be viewed by anyone, not just people registered with Talkstroke, so for the protection of our members we remove personal contact details.
Hello - I'm Emma and I work in the Campaigns department at the Stroke Association.
We know that as well as the physical and cognitive challenges stroke causes it can also be an emotionally difficult time - not just for stroke survivors but for their carers too. Please help with our research into how stroke has affected you and your relationships.
We are asking you to help us with our research by completing a survey on the emotional effects of stroke. We will use the results to push for change so that more emotional support is available for stroke survivors and carers.
To take part in the survey please follow this link.
If you know people who might like to take part but are not online please call me on 020 7566 0317 or email me at firstname.lastname@example.org and I can send paper versions of the survey out.
I am 48 -we have 2 young children and a business to run and life is now very difficult. My partner had just started on anti-depressants and we have faith that in a few weeks these will make a difference but right now I am looking for advice on how to deal with the mood swings, the rage and frustration and as I read from another contributor how to deal with all of this when the relationship has become strained and 'normal' communication is minimal.
Dear Orlando Dentist
Thank you for your post. As you will see we have edited parts of your post as it broke the forums terms and conditions.
I hope you understand why but if you have any further questions please do not hesitate to contact us.
how did it get on this site.
Thank you for your comment and raising your concerns about some of the posts on the forum.
As you will see we have deleted the post in question as it broke the forums terms and conditions. We check each section of TalkStroke once a day, so we aim to delete/edit any posts that are not in line with the forum's terms and conditions on a daily basis. We are working to resolve this issue and stop the people posting these comments.
My husband had a stroke about five and half years ago and has improved enormously. But is still very rude and bullying. He is totally wound up in his own problems and so totally unaware of mine at all.
He talks to me in a very overbeaing fashion. Quite frankly I am more than tired of it. At times he becomes agressive too so I have to be very careful not to confront him too much.
I have spoken to his GP but it is a waste of time. He talks to my OH who says there is no problem and makes out it is all me. I am not the one who has had a stroke. Even after I was attacked the GP would do nothing. My brother in law even rang him to explain the difficulties but it was a waste of time.
I am loosing the will to live. I rather resent the fact that the medical profession saved his life but no one wants to save mine. How ill do I have to become before anyone will do anything to help.
My husband wants me to just leave and live somewhere else. Chance would be a fine thing.
I spend increasing amounts of time at my allotment or on the computer, just to try and block it out. This is ok in the summer but it is too cold to hang around the allotment on my own for hours.
My husband has aphasia and refuses to understand what I say. Though seems to understand perfectly when I talk to my daughter on the phone. He talks incessantly but only about what he wants to talk about, and quite a long time ago I decided to refuse to listen.
He spends hours and hours and hours in the kitchen and sometimes it is hard for me to get a meal. He refuses to understand why I cannot share the kitchen with him. Basically it is not safe, he burned me with a frying pan last time I tried and I have to work round him all the time. Where ever I want to be he is in the way. If I go to the allotment or out, as soon as I arrive back in the house whatever the time he goes into the kitchen. So I have to wait and wait and wait.
At wits end, need help.
I find my dad can be quite overpowering and demonstrative at times and its hard to take in! My dad still is like this at times when his tired eg after work and I find after coming home from school he can be quite rude and horrible! My dads gp is useless too and my mum at times has wanted to leave him! I guess all you can do is try to put up with it like my mum did! It worked out for us I hope it does for you :)
I could be reading about myself in this very post- my husband suffered a stroke back in 2010, and since this has turned very abusive some times, but when I ring his gp my husband says'' nothing wrong with me 'im fine' '' which makes me out to be a whacko wife.. my H also says 'leave' blah blah- and some days I feel like doing exact that.. im only 33 H 32 .. I also work full time and somedays I hate knowing I have to come to face his foul moods if he in those moods.. people tend to excuse over him in saying '' poor him- he's had a stroke'' its not poor him when he becomes violent- there's never help out there for the carers and when you do need help there's a 3-4 week wait, which by that time the need to talk has gone
I do understand what you're going through as I'm going through something similar. My husband had a stroke nearly 4 years ago and went from a lovely laid back, cheerful human being to someone who's constantly frustrated and angry even at the slightest little thing like getting dressed. I'm also at my wit's end and threaten to leave numerous times but am still here as like you the alternative is scary and seems impossible. I could put a tick against a lot of your comments like not understanding what I'm saying but he can easily understand everyone else, putting me down all the time, but unlike your husband he doesn't want me to go, why I don't know as I clearly irritate him most of the time. We're both unhappy and I wonder how long this is going to go on for. I do see the old him sometimes but it never lasts. It really has got to be your decision and by the sounds of it you've got to make it soon. Do you own your house? Do you have joint finances? You do need to get advice and I would suggest going to the Citizens Advice and finding out exactly where you stand. Don't feel guilty as you've done your best. Our house is up for sale and it's doubtful whether we'll stay together afterwards, but we'll see. It's a horrible situation and very unfair but unfortunately that is life. He's changed and that's that. You do need to get away for a short while and let him see what it would be like without you. I don't know if what I've suggested is helpful but at least you know you are not alone in this, it's more common that you think.
Thank you so much for your reply. It is very odd I checked back for several days after I posted but saw no response so I gave up. It is rather surprising to find you posted the day after me.
I have been having huge memory problems and it would seem this is caused by stress.
I rather resent the fact that a great deal of effort and money was spent on getting my husband to survive his stroke, yet no one is prepared to help in any way when his behaviour is slowly killing me.
I fail to understand why the first person to have a problems in any marriage seems to become the most important. The health and well being of the other becoming unimportant and subsumed by the needs of the first.
I have a male friend whose wife is ill and he feels the same, that there is no one to look after him when he needs it.
Completely forgot to say (no, am not doing this deliberately lol) that my doctor has put me on a small dose twice weekly of aspirin and this is helping to clear the fog. Only forgot just now as I was feeding hubby at the same time. Good luck
Hi I'm new on this site but had to reply to your email as it was such a relief to read of someone having the same problems! My husband had an aortic aneurysm, heart attack and stroke 5 years ago, aged 50 and we are still battling on at home now, though how much longer for I dont know. Like everyone else, the personality probs are what get to you. However - you are far from alone with memory loss. Last week it got to the stage that I was convinced I was getting Alzheimers! (am 53) However, my doctor did lots of tests and she said that it was the constant broken nights sleep, being solely responsible for the household etc., etc., and trying to understand my husband's almost unintelligible speech and his anger that is taking its toll. The suggestion was to go into a quiet room at home for short periods each day (if it's not possible to leave the house. I can't leave him alone ever unless the carers are here) and do something you enjoy that doesn't take any concentration. Or you could write a diary and let off your feelings in that. Or use a pillow as a punchbag which is rather good Chin up take heart you are not alone. Please feel free to email me and hope this has helped. xx
so sorry,you have had a terrible terrible time.
you must try and make some decisions.
would it be possible for you to go and stay
with your daughter for a while to be able
to make arrangements for your own future.
you are entitled as a person to be able to decide
whether or not you wish to remain in the house.
stroke can affect people in this way ,it does change
a persons character.
i am sure you will make the right decision
i wish you luck and please take care of yourself.
So sorry to read of the experiences you are ahving with your partners. It could be there is a medical reason as to why the personality of your partner has changed. For example:
- Are behaviours oddd at times ?
- Is the same question being asked repeatedly ?
- Do they sometimes not recognise family members and/or friends ?
If some of this sounds familiar I would recommend you speak with your partner's GP because it could be for example they are starting to show some signs of alzheimer's or other form of dementia.
Hope this helps.
I would like to know why VERTEBRAL STROKES are not on you website, i really need information.. its as if they do not exist..
thanks for your answer to scr
glad i found an answer with this type of stroke affecting vertebral artery..
Thank you for your post. Could you clarify for me what you mean by vertebral stroke? We have information about arterial dissections which can effect the carotid and vertebral artery, this is in the Ischaemic Stroke factsheet sheet. If you have more specific questions, you are more than welcome to email us at email@example.com
Moderators do your job this site is a joke now Roy
Thank you for your post. We are sorry to read that you are unhappy with the site. There have been a number of changes in the last few months, some of which have been very positive and others that we are working hard to improve. You feedback is always welcome so thank you for taking the time to give it to us.
As you will see we have deleted the post in question as it broke the forums terms and conditions. Our TalkStroke moderators are checking each section of TalkStroke once a day, so we aim to delete/edit any posts that are not in line with the forum's terms and conditions on a daily basis. I am sorry that we have missed the one you highlighted to us. We will try to make sure this does not happen again.
I feel very humbled reading other carer's stories as my partner had a very mild stroke comparatively - he had his stroke 3 months ago and still has some swallowing issues and lack of sense of temperature on right side but physically other than this he is fine. The real problem is depression - he is 54, I am 48 -we have 2 young children and a business to run and life is now very difficult. My partner had just started on anti-depressants and we have faith that in a few weeks these will make a difference but right now I am looking for advice on how to deal with the mood swings, the rage and frustration and as I read from another contributor how to deal with all of this when the relationship has become strained and 'normal' communication is minimal. Any guidance or words of wisdom would be most appreciated.
My husband had a stroke 6 months ago and has been at home for the last 3 months. He is wheelchair bound, and left-side paralysed. His eyesight is poor (he cannot read or see anything to his left). His concentration span is about 60 seconds.
I am really struggling to find things for him to do. He has to be sitting down, using only his right arm (if at all). He cannot read. He cannot concentrate on a film or an audio book. He used to love messing about with his laptop but now cannot read the screen. I tried him with an ipad (as he can expand the screen so he can see text) but the new technology has defeated him and he does not want to persist with it. He can speak, though not always clearly.
He used to love crosswords - I've tried these but he will only attempt the one he used to do every day (more or less) and sits for hours without getting a single answer (much of the time his eyes are out of focus and he is not looking at the crossword or just screws it up). I've tried doing it with him and talking to him about the clues but he's not interested or cannot concentrate for long enough to think about a clue.
I've tried computer based games but these are too speedy for him even at the slowest setting (and even trying children's games does not work as they are still too speedy).
I've tried jigsaws - but he cannot make sense of these or see well enough - I'm not sure which and he just makes excuses when I try to talk about it. The same is true with card games.
He used to love gardening but now is unable to put compost into a pot successfully (much less seeds) and then gets cross with me as to why the carrots (or whatever) haven't grown.
I try to get him out and about as often as possible but many of our friends are now wary of him as he comes out with strange comments and sometimes these are often rude. He seems to have totally forgotten any social skills or niceties.
Does anyone have any suggestions, please, about other things I could try to get him to do to provide some stimulation? I'm frightened that the longer he continues as he is currently then the less and less chance there is for any improvement.
simple old fashioned games would be good..
i think these are not as challanging and they are fun.
bingo, is fun the old fashion board bingo, plus you can still
buy bingo games at the shops..
dominos are a nice simple fun game to play..
anything that does not tax him too much, it has to start simple and build up to more challanging games ...
hope this helps.
It sounds like the stroke has been a huge shock to you both and your husband is struggling to adjust to being at home, in a wheelchair and unable to do all the things he did before. I suggest that he is perhaps a little low in mood and motivation at the moment and it may be worth discussing this with his GP to consider starting some anti-depressants.
Does your husband have a home exercise program? If you could build exercise into his daily routine and he can see himself improving, he will be more motivated to try other activities. Explain to him that it is only 9 months since his stroke and if he works hard, he may gain more movement and strength in his left side.
There is a lot of evidence for the benefits of using the Nintendo Wii - have you tried it? He could carry out exercises in sitting with his right hand to begin with and perhaps progress to using his left side, sitting on a balance board or even standing in the future, it is difficult to say without meeting your husband.
Personality and behavioural changes are common post-stroke and it is important your friends and family are supportive and recognise that this is not just your husband being rude! Continue to take him out and hopefully this will get easier.
Hope this is helpful, let me know if there is anything else I can do.
Hi (I don't have a name for you I'm afraid),
Thank you so much for your advice and suggestions!!
I did not mention that we now live in France (as of nearly 12 months before my husband's stroke) and the GP system is a bit different to what we are used to in the UK. I think if I asked for anti-depressants I would be given them - but with no real assessment on the GP's part as to whether these were appropriate. Indeed, whilst I see the GP about once a fortnight to get prescription renewals for my husband, it has been only once in 3 months that he has actually seen my husband in person (and that was pretty much at my insistence). Consequently, I cannot see how good a judge he can be of my husband's state of mind (and I really would only want to go down the route of anti-depressants as a last resort in any case).
However, your suggestion of a Wii is an excellent one - we have a rather old one of these and a balance board so I shall resurrect both and try and get him to have a go. This really isn't one I'd thought of - thank you!
Various friends that have visited have medical training and have suggested exercises for him to do. He'll do them until they leave and then refuses to continue "because his physio has not told him to do it".
That said, we had a bit of a minor breakthrough today. We go to visit friends at a cafe each Friday lunchtime. Today I suggested we did not take his wheelchair in the car but that he tried to walk from where we park the car to the cafe (about 5 yards) with just me and his tripod as support. Astonishingly, he agreed to try. with the proviso that we took the wheelchair just in case. Not only did he make it to the cafe without a wheelchair but he also did the reverse trip back to the car when we left. This clearly buoyed him up because when the ambulance arrived to take him for his physio session he said he wanted me to help him use his tripod to walk to the ambulance instead of being in his wheelchair. So, what a difference 24 hours makes!! I really feel I need to capitalise on this sudden spurt of enthusiasm on his part and try and suggest as many different things as possible (without being overwhelming).
We have some friends arriving for lunch tomorrow so I shall suggest he tries to walk across the patio to greet them on arrival.
I'm sorry for rambling on but from your "name" I'm guessing you know a lot more about these things than I. The learning curve has been, and still is, very steep (as I suspect is true for many of us) but the Wii is a wonderful idea and I shall try and get it set up again as soon as possible.
Thanks so much for taking the time to reply - it is really appreciated!
That's great news! Am so pleased to hear that he's up and walking. Keep encouraging him to do a little more every day and who knows what he will able to do in another 6 months time!
Good Luck with the Wii board. Get his physio to write down his exercises, stick them up on the wall at home and then he will have to do them!
Let me know if there's anything further I can do to help - keep up the good work!
Is there anyone out there who has had, or is having, a similar experience and could offter me advice. My darling husband of 33 years - who was an extremely fit and healthy man with no history of blood pressure and no pre-exisiting medical conditions - had a massive stroke in 2006, and has been lost to me ever since. The stroke resulted in dense paralysis all down his left side, massive brain damage including loss of memory, total loss of awareness, unable to drink or feed himself, double incontinence, impared vision and epilepsy. So severe was his condituib the he wasn't offered rehab as his prognosis for any kind of recovery was considered to be nil. I was advised to put him into care as it was thought it would be too hard to care for him at home (I am now 65 and my husband 81). However I disregarded this and bought him home where I have cared for him ever since. Over the last four years he has also developed dementia and no longer knows me or his children. As you can imagine there have been some bad days and some sad days, but positively there has also been great consolation in knowing that he is well looked after, is not open to abuse, and, that in his own little world, he is safe. I have endeavoured to keep our lives as normal as possible and take him out and about (I bought a wheelchair adapted vehicle) and we go out for meals etc with friends. days trips to the coast and even to Spain on holiday. Up until this year he has been, incredibly, strong and physically well, no bed sores and has always had a good appetitie. However, his condition has deteriorated over the last six months, especially after he conbracted pneumonia in May and he now has difficulty swallowing to the point where it takes an hour to feed him a small portion of food and 2 minutes between each swallow of thickened liquid. My dilemma now is whether or not to have a PEG inserted, to artificially keep him alive, or to persevere with food little and often so that he doesn't starve. I know that my husband would not want to be kept alive the way he is, as there is no quality of life at all and a PEG would mean prolonging his life.
Hello Christinejane, I cannot begin to imagine how difficult life must be for you but I do appreciate the courage and the small triumphs you have experienced. My partner had a short period on a peg tube and my only advice is that if your husband is still able to take part in any of the joys of everyday life then a peg tube is a relatively unobtrusive way to ensure that he gets the feed and nutrients he needs. It can be used in one long session e.g overnight or small and more frequent sessions during the day and does not have to interfere with daily routines. I wish you courage in your decision.