Since my husband's stroke one year ago things have changed drastically,He has left our family home to live alone because he wants to he says he loves us but can't cope with family life he seems to have no emotion no filter in what he says so much that he can upset the people that love him the most.he says living alone doesn't make him happier and that it's complicated,but he still wants me in his life as man and wife but live apart. I am so hurt as I love him so very much but he's not the man I married.he will not get professional help as he thinks it's rubbish.Any advice on what I should do would be appreciated.Thank you for reading me waffling on.x
Linden, How devastating for you and the family. Stroke is a terrible experience and there is an enormous emotional impact as well as a physical one. Both partners in a relationship feel the impact, because the stroke survivor is,clearly, not the person they were. When I came home from hospital my partner was initially a carer and said candidly, 'We have nothing to look forward to'. I wasn't so much hurt by the remark as dulled by the lack of confidence in my ability to recover. I was hurt,however, by people I thought of as 'friends' who ignored us and our situation. Some we cannot bring ourselves to forgive. Fortunately, many others gave us massive support and love.
A year post stroke is a very short time in recovery terms and many of us experienced difficulty in group situations or crowded places. For me, my first visit to a supermarket was very frightening and, even now, being in large groups tests my ability to cope. Negative feelings lead to a wish to get away, to avoid confronting one's feelings and emotions.
I say this because the road to recovery, both physically and emotionally, depends a lot on the willpower and determination of the individual. Fortunately, I have been blessed with a fighting spirit. I made myself walk again, not perfectly but enough to get round a supermarket and round the house and garden. My weak arm and hand are still not wonderful, but they function and I continue exercising them. Emotionally, whenever I get frustrated or angry, I tell myself to calm down or take five minutes to chill out. But the onus on improving both physically and emotionally depends on him. At the moment he seems to think nothing will help him improve and so he is choosing to opt out.
It is a sad truth that once one survives stroke there is little back up available. Counselling might help him, but he would have to be agreeable to this and, clearly, he is not. He needs to talk to someone about how he is feeling. Does he have a friend or family member he might confide in? You could also let him know about this forum. Some of our experiences might help him turn a corner, however small that corner might be.
I am 76, so my time is running out, but, as I have written on this forum before, I will battle on to improve to the end. My partner and I are in a much better place than four years ago, but there are still occasional frustrations, especially when I get cold feet about social occasions or staying away from home. We get over these quite quickly as things talked over can be resolved. There are still things I cannot do and need help with, but I will still attempt to do them and one day I might succeed.
I have written at length, because I feel your hurt and his negativity. I hope you both find a way to move forward together.
Thank you John for sharing your experiences. I am deeply hurt and sad I love him dearly and helped him through and still do.I visit him everyday but he won't talk to me about our relationship,It frustrates him and he gets angry with me for bringing it up,He phones me and texts me every day and night and asks how we all are we have a disabled daughter who live with me and a son all young adults,I guess it all became to hard for him to cope with.we have date nights on a Friday and together we get along fantastic but he can't cope with anyone but me.Even though he can hurt and upset me at times,I will never give up on our 23 year marriage. X
Dear Linren
I can understand your husbands feelings. Stroke changes us and thats a permanent change. A lot of our old self is lurking around. The new person isnt what we like. No he is not the man you married. He is a different person with many characteristics of the old husband.
I strongly considered getting myself in to a care home. I needed to be looked after. I needed to try and get to grips with this new brain that has taken over. I didnt view that as permanent. I didnt know if my nature would ever change so I didnt view it as temporary either. I needed to sort my brain out.
I needed to have a lot of peace and quiet. If you have family at home then I would suggest it is very hard on the stroke survivor.
My household is wife and me. So I have the quiet that I need. My other half goes out six days a week, usually for just a couple of hours. She also spends four days a month staying with our grown up children. In these times I sort my brain out. This works a treat so far. Really, I have changed the relationship with my wife completely.
After four years my brain is starting to function. The difficulty I have had is so hard to explain. Memory is all over the place and I do not know what was discusseed two minutes ago. Then I remember then I forget. In the longer run this upsets everyone. No one seems to have a clue whats going on. Thank goodness for the haven that is this forum. And the local stroke group.
The lack of understanding towards an SS is severe. If we had a leg amputated then others would grasp whats going on. You cant see the brain damage, so generally people assume we must be better. Must be better. We wouldnt tell an amputee to walk faster. We wouldnt tell an amputee to play football with the gkids. We wouldnt tell an amputee you must be better soon. And so on.
So maybe you could adjust the relationship in your home ?
I am the SS and it was me that organized the change. Maybe you could help him make the changes ?
One delightful change is that we have a pet. Never had any pets before. But a cat adopted us and he is now my best friend. He sits cudled up to me for hours each day. He is the reason I grind out of bed each morning. He loves to come down the garden with me, and amuses himself whilst I potter. Above all, he doesnt mind that I had a stroke. He treats me exactly as I am.
best wishes
Colin
Hi Colin I do totally understand but it's so hard at times.All I can do now is be there for him because I love him no matter what.We have a dog but even he drives him crazy. Thanks for your message x
Hi Linren I can see both sides of the situation here. Your husband will never be the same as none of us are after stroke. We can be almost the same with blips along the way but never back to 100%. I also think, and I hope this won't be deleted as sexist as it's certainly not intended to be, women tend to cope easier with change and stressful situations better than some men do. A lot of men feel failure if they aren't the man of the house or the breadwinner. It is good that you are in constant touch with each other as there will be times when both of you need each other to lean on.
I can understand that noise and busy houses are something he can't cope with. I feel like that even now 2 and a half yrs on. Although I am retired, my husband is younger than I so has another 7 yrs to work yet. I feel more relaxed in my own company through the week and sometimes I really don't look forward to weekends because I feel under pressure to be 'happy' all the time. Don't get me wrong, I'm not a sad person but I do feel obliged to put a brave face on every weekend and it's hard sometimes when all you want is peace and quiet.
Is your husband coping better on his own than he was in the family home? If he is, then maybe he just needs time to adjust to his situation. I hate the phrase 'some space to think' but for stroke victims sometimes it's a necessity. As long as you be there for each other as well as the children, he knows he feels loved and wanted and this will help him a lot in his recovery. Take care x
Dear Linren
I have been thinking about your husband. And you.
Thank goodness we have a good Yorkshire Lass on board who speaks as it is. Men and women are different !
When I read about your home situation with two children at home, I began to reflect on how I react. A big issue is that I cant be the man of the house anymore. And that destroys a lot of who I am. Thinking back to when I was a year or so. I struggled to be useful. Yes I needed time to think. And I needed ages to work through simple tasks. I cant give any time to my grown children. And I never see my grandchildren. So I wanted to go in a care home whilst I gathered my thoughts, worked out what I can do and then return home. I never concluded any thoughts of marriage ending.
Instaed of running for the care home, I was able to start menial voluntary work. Then an admin job, just five hours a month. These menial jobs give a purpose to my life.
If I had a disabled daughter at home I would despair because I couldnt help her. It would destroy me.
So maybe he needs time to work through his abilities. To discover how much, or how little, he can recover. Then to join his family again. I am not sure if it is humanly possible for you to take all the extra work on board AND then enable him to do what he can do and what use he can be. It will be so different. Akin to starting a new marriage.
We are not who we used to be. I am fundamentally different and now trying to work at making new friends. Washing the car is a three day job. Changing the bed sheets left me unable to stand for a few minutes.
Admittedly I am old fashioned. Men have a place and Women have a place etc. So not being able to fill my duties is extra hard.
Best wishes
Colin, an interesting post. My perspective is slightly different. What I found hard to cope with was not a man's role, but being unable to make 'any' contribution. I have never been a practical person and have barely painted or decorated in my life. I am, I think, a good cook and a bit of a wordsmith, but that's about it. Before my stroke I also had volunteering roles with CAB, Talking Books and my Quaker Meeting. I had to give all those roles up. For the first time in my life I thought I was 'nothing' and, whether male or female, that is an awful feeling.
I started to do things very gradually and now cook most nights but, as you say, doing anything can be very tiring. Doing several things still stresses me. Today, I had an exercise class between 11 am and 12, then a dental appointment at 2.30. I knew I had to nap in between but my partner wanted to go shopping straight after the exercise class and I found the idea of this very stressful, despite being told the shopping would be brief. However, I decided not to rock the boat and go along with the shopping. There was time to nap, but I was shattered and needed that nap more than anything.
I think the key issue is not the gender role as such, but the fact that, post stroke, nothing is 'natural' any more. In my case, it all has to be 'thought through' and planned in detail. Even that can be dangerous as I get a bit agitated if one part of the plan doesn't work out properly. My consolation is that at our Quaker Meeting I now take Children's Class occasionally. Our children just accept me as I am, stroke or no stroke. They are not judgemental and that I am really grateful for.
Hi Linren, you have received some lovely comments from SSs, I have been really touched by first-hand accounts that Colin, Brenda and John have shared with you. At least you now know, that your current situation is not unique - I felt it was important to know, because I felt that I was handling the situation badly, when I was in your shoes 2 years ago, following my husband's stroke.
I can't add anything because I'm not a stroke survivor, but I would say that although you are currently living apart, you have maintained a relationship. Not what you had before stroke, and not the relationship you really want, but, crucially the door is still open. I can't imagine how hard it must be to live like this, and trying to divide yourself between two camps, but it sounds as though you still have a spark and have fun together. It is a common experience that the world seems to get smaller post-stroke, as shown by the comments of John, Colin and Brenda, it took a long time before my husband could cope with even low-key social events. I have learned to cherish the times when he feels strong enough to be with friends and family, (and I always try to remember that he's probably not having such a good time as me, but he's making the effort, and I love and respect him so much for this). So ... please keep that vital link with your husband, because I feel sure that there will be a time in the future when he will take steps towards returning to the family home. Maybe just short visits initially, but I feel a lot of hope for you.
Take care of yourself, enjoy those date nights ?, keep smiling!!
Best wishes xx
Dear John
Yes of course you are right. Its not a gender thing at all.
I too became unhappy that I couldnt do much. So I started to do tiny voluntary jobs at Church and to do whatever I could around our home. This eased my concerns a lot. I was contributing. My first "help" at home was to make tea for me and wife to have in bed. I dropped the tray. Smashed Rosemarys favourite Harrods mug and made a right mess that I couldnt clear up.
I am victorian. Very masculine (chromosomes, not big nor strong). I am the old fashioned man of the house. Without me things start to deteriorate and no one is able to cover for me. This brought another bout of doubt. I am not being the man. So I wanted to absent myself altogether until I could be the man again.
I think this is a problem for many SS and it would apply to women who have been homemakers and men who earnt the wages and everyone in more modern times whoshares duties differently.
One of the good things about the equalization of men and women is that there is no longer a need for a man of the house. Shared responsibilities are taking over.
I feel what you go through when you describe a days sortie into action. If only a large number of other people had some clue about what we go through. If only.
Best wishes to both you and your partner
Colin
Thank you Colin. Your golden rule is 'smile' and I would add 'laughter' to that, especially in the face of catastrophe. I smashed a lot of things in my early days,because the rule of being careful' is of no help with one dodgy hand. I now no longer touch much that is breakable, especially if odd shaped.
Today, I had to go to a local hospital fir a biopsy (nothing serious). It meant being there by 7.30 am and the hospital is 7 miles away. Fortunately, my partner can take me, but getting up that early means I have to replan the whole of my day and keep the dreaded fatigue at bay and, no, people cannot understand what this is entails for a stroke survivor. They are having an 'ordinary' day, but we survivors no longer have that sort of day.
Best wishes to you and your wife.