The French film Amour is a touching, realistic window into the world of a committed marriage in which one partner has suffered a stroke.
The elderly couple are music lovers, their apartment chock-full of music books, records, and CDs, plus a concert-size grand piano. Yet the film has no musical score, just the mundane sounds of everyday life. The couple’s need to cope with change is so profound that the music of life fades, replaced by the clinking of forks against plates, sweeping away crumbs from the kitchen table, or shower noise as a caregiver washes Ann’s back. The story gently unfolds, depicting the couple’s commitment and love as the outside world shrinks, startlingly magnifying their life lived in three rooms. There is no shaking of fists at their plight, no angry outbursts from either partner.
How Stroke Affects Marriage
When giving talks on how stroke affects marriage, I say, “When one partner has a stroke, both partners have a stroke.” The stroke survivor grapples with loss of bodily function, speech, and often dignity, and the caregiving spouse must come to terms with the magnitude of the change in their lives.
A stroke can alter two people’s lives in an instant. For the person with the stroke, simple tasks suddenly become difficult or impossible. For the person’s partner, life revolves around the stroke survivor’s needs, requiring many adjustments.
And while stroke (like any chronic medical problem) affects marriage, it can also open a gate to improving communication and building and strengthening skills that were taken for granted.
Empathy on both sides is needed for the marriage to survive. Learning new ways to communicate fondness and appreciation serve as protective factors. Building new rituals of connection and remembering the positive aspects of your marriage before the stroke are necessary to keep your relationship healthy.
Coming to Terms with Suffering
While stroke can create strain, frustration, and distance in your marriage, coping with its effects is an opportunity to reset your priorities and goals. You may be able to strengthen your marriage as you and your spouse work together on common problems you will face. It is by accepting the limitations that life imposes on us that we can overcome them. As we learn to carry our burdens well—in the yielding and in the striving—we become whole.
Viktor Frankl was a psychiatrist who survived the Holocaust; his parents, brother, and pregnant wife did not. In his remarkable memoir, Man’s Search for Meaning, he discusses how people face unavoidable burdens. Why did some crumple beneath the horrors of the death camps, while some comforted others and gave away bread?
“When a man finds that it is his destiny to suffer, he will have to accept his suffering as his task; his single and unique task. He will have to acknowledge the fact that even in suffering he is unique and alone in the universe. No one can relieve him of his suffering or suffer in his place. His unique opportunity lies in the way he bears his burden. . . . The way in which a man accepts his fate and all the suffering it entails, the way in which he takes up his cross, gives him ample opportunity—even under the most difficult circumstances—to add a deeper meaning to his life. It may remain brave, dignified, and unselfish. Or in the bitter fight for self-preservation, he may forget his human dignity.”
I do not mean to minimize the great accommodations that must be made in marriage when a stroke occurs. But there is a phenomenon seen in marriage counseling that often predicts good prognosis; therapists term it “glorifying the struggle.” This describes a couple that comes to therapy with a crisis, but they can talk about how they see the struggles that they have gone through as ways to grow and that they can grow together. The likelihood of that couple being able to keep their marriage whole and strong is better than when there is bitterness and resentment toward their marriage struggles.
Of course, sometimes caregivers can’t look after a stroke survivor at home. In Amour, the husband was the caregiver until he could no longer tolerate bearing her pain for her. In the United States, if a caregiver is no longer available and/or funds have run out, the best option is a skilled nursing facility (or SNF in the medical jargon). But in many families, life must go on: living together, but with tremendous challenges for both partners.
Ways to Cope When Stroke Strikes
Here are some issues to consider in coping with the aftermath of a stroke.
1. Spousal support: This is a powerful aid to stroke recovery for several reasons, including a spouse’s ability to improve the stroke survivor’s mood and increase physical and social activity levels.
2. Role changes and division of labor: Most couples must change their usual division of labor. Tasks and duties that were previously performed by one spouse may need to be reassigned. Outside help should be considered when possible.
3. Emotional support: High levels of emotional support lead to the best possible recovery after a stroke, and support is most effective when it is seen by the stroke survivor as meeting his or her particular emotional needs. Empathy—your ability to see things from the other person’s perspective—is important for both partners. Even a stroke survivor with speech problems (aphasia) can still listen. To truly listen is a great gift, even when your replies are non-verbal.
4. Counseling and group support: Both partners can benefit. There are many great agencies that offer classes following a stroke, and ongoing groups to help maximize coping.
In the best of circumstances, marriage is challenging. When couples face chronic medical problems such as stroke, the marriage vows -in sickness and in health are tested to the limit. Compassion by both partners for each other, as so tenderly shown in the film Amour, is imperative to preserving love.
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Yokhantho says
It is difficult when the non affected partner start thinking that he /she is the victim, making the affected spouse more guilty and unwanted.
Isabelle koomoa says
My husband woke up thinking he was married to someone else she came back into his life and I have been suffering ever since isabelle k
Molly M says
Isabelle, that must be dreadful for you. Bad enough to no longer occupy the “partner” role any more (that’s what happened to me after my husband’s stroke) but so much worse that his affections have switched to someone else. I do hope that, with time, his brain functions and memory may return to normal (or as near normal as possible, I know it never goes back to what it was). All the best to you. Molly
Elizabeth says
To Yokhantho
Got news for you. The non-affected partner IS the victim. My husband thinks he’s fine but he’s a different person since his strokes affected him cognitively. Behaviour and personality changes. He’s not the same man I fell in love with and married. And we’d only been married 1 1/2 years. In his head, he’s just him, and he’s fine. I’M the one who has to live with the differences and grieve the past, EVERY SINGLE DAY!
Ann-Pugh Jones says
Thank you for expressing the feelings you have. It is most helpful tp me to know I am not alone in the challenge and you verbalize my htoughts perfectly
Ann
Glen says
This is an excellent excerpt on what is involved for not only the person who has suffered the stroke but for those around them that have had their lives impacted. My wife had a severe hemorrhagic stroke in the thalamus region of her brain, 3 other strokes as well as a heart attack. Life support for two months and a coma for three months. She survived. She cannot really talk (says a few words) will never walk again, is incontinent, has right side paralysis but it is still her. This all happened two years ago and she was 51. It has not been easy for my wife or our family but faith and love are what we have to move forward and accept that none of our lives will be the same again. We sacrifice our own needs in order to give the love and support that is needed to give meaning to not only our lives but to those who have suffered even more…………..the victim of a stroke. Helping someone comes from your inner soul, particularly when you love them. It is not easy but you persevere because that is life.
Dr. Susan O'Grady says
Glen, Your comment captures the reality of how stroke affects everyone in the family. And how love helps to soften the blow, and cope with the many changes required.
Lynn R says
My husband had a stroke in Sept. 2014. While in a rehab center,l he suffered another stroke and had to have brain surgery. His speech was not affected at all but he cannot walk w/out a walker. He is still in therapy but our marriage has suffered greatly. I gave up everything to take care of him. I think he has just given up. Does nothing but sit all day. I work full time so he is home alone. Not sure what is going to happen in our marriage. This is equally tough for both the stroke victim and the spouse (caregiver.)
Dr. Susan O'Grady says
Lynn, You are so correct that the impact of stroke is huge to the care-giving spouse, yet the stroke survivor gets the lion’s share of the attention. Compassion fatigue is a very real stress. It is important to determine if ‘his sitting around the house all day’ is depression, or stroke related, or a combination. I hope you are able to find good marriage counseling, or join a Stroke Support group in your area.
Jane H says
I’m so sorry for both of you. You’re not alone. My situation was the same. I had to go to work and raise our then 4 year old son. This was 2001. I was not going to allow my husband to sit and mope all day so I gave him light chores to do, for his own good. Gradually he started doing more despite having only one hand/arm. (right side paralysis plus speech difficulty). I won’t pretend that it was easy, but giving up was not an option. My husband reinvented himself as an artist and sells his work while our son has grown into a fine young man, now studying medicine. Google Tim Hind and see my husband’s story. Maybe this will help you and your husband. All the best.
Tricia says
Thank you so much for giving me hope. I do believe in miracles, I just struggle with my inability to orchestrate them. Lol.
I have barely started this part of the journey. Stories like yours assure me that there can be a life worth living at the end of this tunnel.
jim says
my wife had a stroke a year ago. we have been married 42 years. so after 41 years of marriage the last has been more caregiver. its been a very long year. what makes it really hard is that stroke effects the body and the mind, and the mind part causes the big grey area . no one knows exactly how this has effected my wife, so you cant figure out how to try to help her improve. its extremely depressing for me. she should be doing better but the mind thing hinders the progress. throw in some depression and it gets uglier. and once your out of the hospital and the daily grind sets it you are on your own. its a mind game for the survivor and the spouse. both people need strong will to survive the challenge at hand
Dr. Susan O'Grady says
Jim, Well said. Keeping strong in the face of these changes is important. And hard.
Jill says
I find comfort in reading about the struggles of the caregiver spouse. Thank you all. I am seeking help for the wife of the stroke survivor that I work with daily.
She is drained and depressed wishing her husband would return.
What do I do when I find her crying and giving up? It’s hard to know what to say.
Thanks
Lucy says
My husband had a stroke in 2015 age 38. I am now 35 with a 2 and 4 year old. It left him with left arm severe weakness. We are of an African culture and there is this blame culture that might never cease to exist. His family did not treat me nice at all in this critical period which brought on a lot of stress and I was on maternity with a 3 months baby. Finally the union was broken and he moved out to a place given by the local council.
We are separated with good communication however I could not play care giver to all three. I would breakdown which I have in the past. It’s very tough keeping a relationship post a stroke especially without no support.
Lucy
Susan O'Grady says
Lucy, Thank you for such a poignant and open reply. Your situation speaks to the many layers if difficulties post stroke. Take care of yourself. Susan
sarah says
I completely understand….
Maureen says
How do you work with a right brain stroke survivor who has little insight into his deficits and resents everything you do- fights you-for taking on the tasks he had control over? I realize he has lost control- for example cannot drive but I am growing weary of his not wanting to do the things I need to do because he is not totally capable of them anymore. It makes a difficult situation even harder.
I am tired of reading articles that assume you are dealing with a reasonable person.
Susan O'Grady says
Maureen, This is indeed a difficult but common situation with stroke in marriage. Cognitive changes are often equally challenging as physical changes, and are less appreciated. The suggestions in the article for getting support for the caregiver, and cognitive training/counseling for the survivor can be useful, but will not eliminate the toll it takes on everyone.
A says
yuuuup. i am standing next to you on this one.
my partner is very easily agitated and upset. he used to laugh off our arguments, we actually never argued pre-stroke, it was always a respectful debate, but now he from 0-100 in about .0001 seconds. Hehas no patience with our 8 year old. He has no motivation, he no longer works at his therapy. He has dreams and aspirations on how to get his life back together but has taken no steps to do anything or expectsme to do the grunt work. I worry about his judgement and how he cares for our 2 year old, he has let him run into the street on several occasions. We have only been intimate twice and both times i was absolutely repulsed. I am dragging this family along to make everyone happy and feel as though this is a happy family but I am an empty shell insode. I have had enough, I want more out of my life. He is not the man I chose to spend my life with and he is certainly not the man I chose to be the father of my children. I will forever have to compensate for his misgivings with my children.
Ro says
omg A, same thing here. been with the same woman 42 years always talked arguments. Now geez, everything I say is an argument . What kind of therapy helps the mind?
Linda c says
I am in the similar situation as you June. 11yrs of this. It’s breaking me. I just want to leave. I actually sometimes think he does this deliberately. And he has a very evil tongue. Has very limited speech so to call me the names he does. Is unbelievable and every swear word comes out perfect. And that’s all that does. We need to move to gain extra cash. Down size but so hard with his hoarding and lack of understanding. I have a massive dilemma. He has no personal hygiene. Never takes a shower or bath. Just sorts rubbish he hoards all day every day. I need help.
Sondra says
Thus sounds like what I am going through. My husband has had a stroke. He has changed so much. I’m about ready to throw in the towel, give up.
He has zero personal hygiene
I use to be everything to him. Now I rank at the bottom of the list.
What use to be important isn’t any more.
We’ve been married 50 years and I am ready to leave.
shawn says
Thank you for sharing your honesty. My husband had a stroke May of 2018 and he too seem very disconnected to me. The other day he had an outburst that was not like him. He was screaming and yelling and talking strange. Ive noticed that he only wants to bathe once a week, when he use to bathe pretty much daily. I feel alone and confuse, because I’m not sure how to help him. Keep praying and trusting in God, I am trusting him as well. Don’t throw in the towel, he’s going to get better, we just have to ask for help from love one, friends, support groups and again pray.
Nannette l says
My husband had a stroke 7 months ago, although it did not effect his motion his memory and personality have changed dramatically. just about four months ago he stopped really talking altogether and just wants to do nothing. I asked him about this and he said he just feels like he wants to run away from work, me , family. Before this stroke he was fine we had a great life, is there anything I can do to help I tried talking about therapy and he says no if you can help at all with this I would greatly apprecieate it.
Mags says
My husband had a stroke Christmas 2017 our lives have changed. We are only 6 months from the stroke and we fall out constantly I also feel like leaving, my husband is 75 I am 73 both retired we were looking forward to having a fun retirement and after bringing up 5 children I thought this was our time to live our life but now it seems I have a 6th child. I am a survivor of 2 cancer operations so not very strong although in fairly good health. This stroke has knoked us both and sometimes I don,t know what to do. I hate him I love him is this a normal thing to go through or am I being selfish I am beside myself for feeling the way I do.
Pam says
Mag, I’m in a similar situation. My husband can’t use his entire left side and cannot eat by mouth. He is in constant physical pain and I’m mentally stressed. I am his only caregiver. He’s 70 and I will be 65 soon.
I’m praying that Jesus will allow all of us better days before we leave this world.
Amen
Jane H says
I stumbled across this blog quite by chance. Dr O’Grady, your analysis on post-stroke relationships is spot on. You provided me with the explanation I needed as to why I am incapable of having an intimate relationship with my husband who at 38, suffered a massive stroke in 2001. Our marriage was only 7 years old and at the time, our only son was 4. I coped, we managed, are still together but live like brother and sister because of my mental blovk/reversed role. Our son is a grown man now, studying medicine, wants to do either cardiology or neurology so it was worth all the sacrifice and keeping the family together. Not easy. But not impossible.
Be says
Caregiver burnout here. Friends and family don’t seem to “get it” and many times just add to the stress instead. Resources limited. No available options and just going through the motions from day to day to keep bodies alive while souls are slowly dying from malnourishment.
A says
My wife aged 52 had a stroke last march she was caught on time but has recovered 95% but has major anger issues she has said and done some horrible things I can’t believe she can say these things,I’m no saint but to have to listen to what she says is just unbelievable,I’m at a loss as to what to do,people look at it from her point of view,ie why does he not look after her etc I have done my best don’t want to see her sick but cannot argue with her anymore I don’t want to see her get sick again pleeeeeassseee help
RB says
Just happened across this thread, while searching for ways to cope with all of the issues surrounding having a stroke survivor as a spouse. My wife had hers 4 1/2 years ago, turning me into what I call a “single parent plus”. Kids are now 9 and 12, My wife has reduced left side mobility, no hand use, cognitive issues (attention, short term memory, empathy, changed personality, etc.), severe depression, and can’t drive. I work full time, have to do essentially everything at home, 90% of the parenting, all of the transportation etc., with essentially no emotional support from my wife. There’s no intimacy of any kind, and the loneliness, even with my whole family around me, is overpowering. I constantly feel as if I’m at the breaking point, except I’m not allowed to break since they all depend on me. Argh.
Diane says
Hello my husband had a stroke in January 2017. I has our lives forever. He’s a survivor and doing a lot better than before. But I feel like he doesn’t talk to me of how he’s feeling. We have been for 23 years now. And his stroke has taken a toll on me. We have know commutation at all. His behavior has a lot. So I’m ready to give up this marriage. So i need some advice.
Julie says
Almost 2 years out from a stroke caused by a tumor that bled out in the left side of his brain. He spent 13 months in hospitals and care facilities. He almost died and was in a coma for a month. My husband is what I consider a super survivor! He has regained his ability to walk, do most self care, and even helps with some of the chores. On the days that he just wants to sleep all day or veg in front of the TV we accept that his brain needs the rest. We are seeing a marriage counselor and he is still in speech and physical therapy. This is the hardest thing we have ever done. We give each other space. I spend time with my friends and we still go out to dinner, plays and concerts. When he is grouchy or short tempered I get mad and just “leave” for a few hours or a few days. We are able eventually to talk it through. It is exhausting. But we have more good days than bad. We have our grown kids and 2 beautiful grand kids. We are grateful for the life we have and try not to resent the loss of the life we had.
Sylvia says
All so true. My husband had a stroke three years ago, which left him paralysed down
his left side. I gave up work to care for him full time. He had to learn how to talk and eat again, and with lots of therapy, managed to walk a few feet, with the help of a frame.
It has been a long three years.
He does get depressed sometime, mostly out of frustration of not being able to do all the things he used to. He was only one month away from retirement and two weeks since we moved into our new home. We have a very big garden and he was so much looking forward to being out there planting . He had been a prize vegetable grower before. Life can be so cruel sometimes. It`s not easy being a full time carer. Nothing can ever be the same again .I miss walking hand in hand along the beach and going abroad on holiday. I wouldn`t even consider going on a plane now, not with a wheelchair. The stress would finish me off. I don`t seem to have the inclination to go anywhere far these days.
If the shoe had been on the other foot, my husband would have cared for me. He is so brave. I`m not sure how I would have coped though.
I try to remain cheerful and positive, for my husband`s sake, but really I`m crying inside. I guess the old saying is true, one stroke, two victims.
Helen says
Husband of 54 had a stroke 2 years ago the shocking change to all our lives is ongoing. He has been very positive but he is cognitively impaired and left arm paralysis. Has learnt to walk although limited. I just don’t want to be with him, I don’t find him attractive or interesting and am not prepared to martyr myself forever but feel guilty as well. Terrible situation made worse by an unsupportive family.
Ken says
I’m happy that you feel this way. My wife had a stroke almost 4 years ago. She took care of me when I had health issues for 3 or 4 years before her stroke. It affected her right side and speech. She has been in a care center since her release from the hospital I couldn’t live with myself if I didn’t take care of her now. She tries so hard in rehab, but it’s hard for both of us. I am like you, Show the positive side, try and make her happy, then go home and let your real feelings out. It’s tough but I couldn’t have it any other way.
Ken says
My wife had a stroke almost 4 years ago. Affected her right side, speech and memory. I spend around 8 hours with her everyday. She tries really hard in rehab but seems to have plateaued out. It doesn’t matter, I’ll be by her side as long as I can. She was always there for me when I had problems. Yes, it’s hard but I couldn’t live with myself if I didn’t support her. Life is hard sometimes but we’ll get through this.
Jackie says
My husband had a stroke in April 2019. causing weakness on left side . he has been receiving rehab and is now walking. still no use of arm and hand.
I am finding it very hard coming to terms with his disability and I blame myself for not getting medical help sooner and then the stroke could have been a lot less debilitating. not sure what the future holds for us both, he is only in his mid 50s . I want to be his wife not carer and am starting to resent my new role. am also resenting appointment after appointment with no life in between, apart from sitting at home and life is passing us by. will we ever get a life back.
Susan O'Grady says
Your feelings are completely understandable. Depression is common and often begins 6-months after stroke, for both partners. I hope you are able to get support.
Cindy says
Im going through the same things…I feel Alone even though he is here…