Coping With the Stress of Caring for a Disabled Spouse

Am full time carer for my husband. We are retired and previously I was a nurse. I think this means that family and friendsassume that I can manage. Life is so hard and lonely and I feel so resentful.

I have been married to my wife for 31 years. Beginning of our relationship was very volatile at best, even though we both were healthy and on our feet, we managed to have five kids together, however my wife refused to leave her father. Practically forced to live with him because she had no idea how to be successful on our own. Everything bad that happened in her life prior to meeting me, she blamed on her family but managed to take her anger out on myself and our kids. This eventually led to terrible infidelity on her part, jealousy, and ugly accusations against me for events that never happened. Consequently we separated for about a year, and when we begin to reconcile, she was diagnosed with progressive MS, And since her initial diagnosis, her physical and medical condition spiraled downhill. Her mentality and attitude towards me has improved substantially, however we are now living separately due to her being full-time in a nursing home. There are still parts of her demeanor that remains from the abuse she endured from her family, and she cannot seem to separate her past from her present and future. Marital intimacy for us is a thing of the past and has been for a long time. I rarely hear from her in certain situations, and she continues to focus in her life as a victim, but she doesn't understand that this victim mentality has been an ongoing thing for a long time. Reading a lot of the other comments here, now I can finally see that I am not alone in this type of situation, and I would be very happy to talk or chat one-on-one with anyone here, thank you for reading....

We have been married for 40 years. I retired in 2019 looking forward to spending time enjoying the rest of our lives. Two years into retirement my wife was diagnosed with Parkinson’s and the starting stages of dementia. It becomes harder everyday o cope with the lack of communication we use to have. She moans and groans all day long due to painful ovaries. Doctors are hesitant to operate on her ovaries due to her Parkinson’s, epilepsy and her age. I cannot stand to be around her in her state. She has to know where I am every minute. My own time has been limited to time spent at home always near her. Frustration, anxiety, silent anger are all to frequent for me. I wish I could just disappear and live my own life while I still can.

My husband was diagnosed with ms 8 years ago his mobility has gone really bad to the extent that he is tripping over .We got hardly any social life as he refuses to go in wheel chair preferably staying in or waiting in car I would love to go for a walk with him but he can't get his head around a wheelchair

I thought I was getting down and desperate. My husband has had an illness for 20 yrs. now, but w.an actual disability -unable to walk , past three yrs..He Can walk w. a walker & is actually making some improvement since his back surgery. I was feeling down about how stagnant our lives have gotten. I read a few comments here & realize our issues are almost non-existent in contrast to so many . It does help , tremendously , reading others tales of despair here. Sometimes I have to admit that , having cleared a way for at least myself to enjoy this time in our lives together and having gained some help over it , it may be that from hereon Life is what I make it ! As older retirees we would be challenged over that anyway, disability, or not. There's just so much that seems to pale in our lives as Seniors. But, Thank God, that's the least of our worries. I think our problem lies in how my husband had always been , way too passive, & it becomes easy blaming it on his disability. I often wonder if most men with a disability had always also been so Needy. just in different areas & it may have been less noticeable when they were healthier and doing well. It makes me wonder if he'll EVER change, & if not-how much do I owe it to Myself to consider a change , at least in my own life?

Since I became disabled my husband is depressed and relationship is dead. He doesn't do any personal care but all the housework and shopping and has neglected his music. He is a bass player. He's distant from me and often gets angry with me.

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I been married for 10 vyears my husband is disabled.. I am a miserable wife I am not sexaullu attracted to him I feel like his caregiver than his wife he is confine to a wheel chair. It's tye most hardest thing for me is like I feel like I can't do this any more I so need someone to talk to about it it s so heavy I don't think I can cope anymore. When he messes up he bed bathroom an I have to attend to him to help clean up its hard. Am 38 I don't remember when I felt happy .am drowning insideI can't tell him that I don't want to be with him no more and am not sexually attracted to him .Iscreaming in my head just don't know where to go or what to do .I become a shadow of myselfjust existing .I just don't know what to do .it's hard

Been caring for my husband with Fatty Liver Disease and Diabetes Type 2 for over a year now. We are both in our 60's. Some days are better than others. We have a good bit of prayer from church friends. God's grace carries us through many hard times. In September 2021 my husband nearly died at the hospital of Hepatic Encephalopathy. The ammonia levels in his blood were very high and began traveling to his brain. He had a black out and does not remember any of it. So here we are in 2023 in a daily routine where I care for him every single day. He is a U S Navy Veteran and has some benefits from them, thankfully. We had hospital expenses that we had to pay some out-of-pocket. I could have bought three rooms of brand new furniture with what we had to pay but am thankful we could pay off those very expensive health care bills. Some days I cry and pray, some days I just go through the motions. I am thankful to still be healthy enough to take care of him.Georgia

I have been married to my husband for 51 years, and for the last 12 years been his carer after a big stroke. He lost the whole right side of his body which has never come back at all. He was right handed and now his hand is just a clenched fist! He learned to walk again but is very slow and unstable, always afraid he will fall, which he has several times over the years. So I always say to explain, tie your right hand behind your back for a day!! to realise what you can’t do, dress, tie shoes, buttons, belts, cutting food, it’s endless! We bicker a lot about stupid things as he tries to do things he could easily do before, and often puts himself in danger. This drives me mad but he just doesn’t get it. I resent my life now. I can go out on my own and leave him but am always rushing to get home so don’t enjoy shopping like I used to, this isn’t a thing I do often. I wouldn’t say I’m depressed, just fed up with the daily routine, never lived to a daily routine before, think it makes life very boring as each day is the same as the last. I will never leave, not that sort of person, but feel now at 73 and 74 that we were cheated out of the retirement we planned and had money and property to enjoy. Life goes on and you can always see people worse off than yourself, so try to make the most of each and every day.

I am almost completely miserable in my marriage. My husband and I have been together for 10 years, married for almost 8. He is severely disabled and mostly bed bound. When we got married I knew I would have to be his caretaker but I really had no idea what the reality of it would be. It’s a very sad situation because I absolutely love my husband, but I’m feeling more like his caretaker as opposed to his spouse. I feel like a horrible person with a ton of guilt. I’m the only one who can work, I don’t have many friends, all family is out of state. I finally found an amazing job, but now he complains because he doesn’t like that I have to work full time hoursbecause it takes away from us spending quality time together. Which I do understand because he is alone. He is in horrible pain everyday from his disease so this has caused him to become depressed among other things like a delusional paranoia. He truly believes he’s being “harassed “ by the upstairs neighbor putting cameras in our apartment (there’s way more but too much to write). I cannot express how hard it is to live in this type of life every single day. It’s come to the point to where I’m just not even sexually attracted to him. Thing is, when we actually are able to be intimate I get worried that I am going to hurt him because of his disease. I don’t want to sound judge mental or anything so sorry if I offend anyone out there, but my husband is small and with us being limited on how we can actually have sex, it’s not enjoyable at all. So with our sex life being like that for all these years, my being resentful because I feel like a caretaker instead of a wife, I really just have no interest to be with him at all really at this point and there is NO WAY I will ever tell him. I can almost guarantee that we aren’t going to have children and it breaks my heart. There’s no way I can have a kid with me working full time, being a full time student trying to finish my degree, and taking on 100% of the house duties among other stuff. Not to mention I’m getting old, I will be turning 37 this year. When I get sick I don’t have anyone to take care of me, there is no such thing as taking a day off EVER. If anything breaks in the house I have to fix it because we can’t afford to pay someone. I do EVERYTHING alone and it SUCKS. I’m sorry if I’m rambling some, I’m exhausted from work and have to work again at 6 am. Anyway….. I’m just sad and am becoming more resentful as each day passes. I swear I wish I could have just one weekend where we can go out to dinner like a normal couple but we can’t. I really want to go out and do stuff but I’m by myself, but never will because I feel guilty leaving him at home. He is an amazing man and it’s frankly not even his fault. I feel like a horrible person, not worth anything at all at this point. There are so many days that I wish I could just be single and focus on work and finishing my degree. But that will never happen. I will probably never leave my hu

I am married with my husband since 2019 and recently he had a massive stroke which means he won’t be able to work anymore so now he depends on me financially and all the household chores we don’t have children and for 2 months I took care of all his needs including changing diapers and everything since he couldn’t move for at least 2 months but miraculously he can now feed himself and take bath himself. Unfortunately I feel so drained now this isn’t what I have envisioned when I married him. He used to have a good job overseas but when the pandemic happened he lost his job and since then he don’t earn well anymore and even before he had a stroke I wasn’t happy with our married life anymore as our values differ, I realized that without his good paying job before nothing is nice to him it may sound like I am after his money but it isn’t I stood by him even when he has nothing. What I don’t like about him is We cannot have a meaningful conversation it’s as if we are strangers before and after his stroke. Now he said he wished he had died just because I refused to have sex with him. All I feel for him right now is pity and God knows I will not leave him eventhough I so want to do it many times. I get strength from praying that I may be strong and accept my situation.

I've been married to my husband for 33 years. He got covid last year with covid pneumonia. He was placed on a ventilator. Covid severely damaged his lungs and kidneys. He was in the ICU for 7 months and has had numerous surgeries on his lungs. He can't walk without the use of a walker and can't make it upstairs to our bedroom or bathroom. He's been sleeping on the couch since he's been home. I have to do his urinal, clean the commode and change his dressing everyday along with working full time. I almost lost him and during this ordeal l found out he had been cheating on me also. So not only did l have the stress of making life changing decisions for my husband but knowing this. It was difficult since l was not in the right frame of mind.Don't get me wrong lm thankful he's alive but l find myself getting overwhelmed, depressed and sometimes very angry that our lives will never be the same.

My wife has been disabled for the whole 7 years since we have been together. She has a skin condition where she is constantly scratching, can’t exercise or move, can’t clean, can’t go outside and is often in constant pain. I love her and I am a very caring person so I am happy to look after her but sometimes I just can’t take it. I have epilepsy so my life is not always easy, but now she’s stopped working and her condition will probably be getting worse and worse. I can’t do anything I want to do without feeling guilty that I’m leaving her behind. We haven’t had sex in what seems like years and I feel like my life is slipping through my fingers. I don’t know if I’m going to die soon or be put back in hospital for brain surgery and I don’t want to spend my life like this. Please God help me I don’t want to live like this but I love her and I’m filled with so much guilt. I can’t talk to anyone else about this because then she thinks I’m betraying her. I’m happy to see other people experience this, that I’m not alone and not an evil person. I don’t know what to do, I only have one life and sometimes I just want to end it to escape from this

My wife has been disabled for the whole 7 years since we have been together. She has a skin condition where she is constantly scratching, can’t exercise or move, can’t clean, can’t go outside and is often in constant pain. I love her and I am a very caring person so I am happy to look after her but sometimes I just can’t take it. I have epilepsy so my life is not always easy, but now she’s stopped working and her condition will probably be getting worse and worse. I can’t do anything I want to do without feeling guilty that I’m leaving her behind. We haven’t had sex in what seems like years and I feel like my life is slipping through my fingers. I don’t know if I’m going to die soon or be put back in hospital for brain surgery and I don’t want to spend my life like this. Please God help me I don’t want to live like this but I love her and I’m filled with so much guilt. I can’t talk to anyone else about this because then she thinks I’m betraying her. I’m happy to see other people experience this, that I’m not alone and not an evil person. I don’t know what to do, I only have one life and sometimes I just want to end it to escape from this

Have been married 34 years.now am my husbands carer.no longer intimate after major op feel lonely in this marriage.just not coping with change in marriage.sometimes want to leave.advise please

Married for 34 years husband has always been disabled he lost his left hand as a teenager but he's always been able to work and do alot.Then came the neck surgery that the doctor said had to be bone or my husband would be paralyzed so he goes in has the surgery and the doctor messes up and cuts the spinal cord witch leaves his good arm and hand unable to move. We seen 3 lawyers they all say there isn't enough for a case. So I'm stuck doing all the care giving. We live low income get food stamps so there isn't enough left to pay our portion of insurance to get some help to come in. So its all on me.I shower dress fix his food and drink with a straw because he can't hold a utensil.I go with him to use the rest room have to stick his thang under the toilet set and then help him get up and lean over so I can wipe him. Its day in and day out I've been put in the hospital due to high blood pressure and I've never had issues like this before. I find myself just so outrageously mad all the time.I've been trying to find a support group in my area but no luck yet.Finally broke down today crying to my sister to please help me find a group that I just can't handle this rage I have all the time.Is there anyone out there that can understand how freaked mad I am !!!

Married for 34 years husband has always been disabled he lost his left hand as a teenager but he's always been able to work and do alot.Then came the neck surgery that the doctor said had to be bone or my husband would be paralyzed so he goes in has the surgery and the doctor messes up and cuts the spinal cord witch leaves his good arm and hand unable to move. We seen 3 lawyers they all say there isn't enough for a case. So I'm stuck doing all the care giving. We live low income get food stamps so there isn't enough left to pay our portion of insurance to get some help to come in. So its all on me.I shower dress fix his food and drink with a straw because he can't hold a utensil.I go with him to use the rest room have to stick his thang under the toilet set and then help him get up and lean over so I can wipe him. Its day in and day out I've been put in the hospital due to high blood pressure and I've never had issues like this before. I find myself just so outrageously mad all the time.I've been trying to find a support group in my area but no luck yet.Finally broke down today crying to my sister to please help me find a group that I just can't handle this rage I have all the time.Is there anyone out there that can understand how freaked mad I am !!!

Married for 34 years husband has always been disabled he lost his left hand as a teenager but he's always been able to work and do alot.Then came the neck surgery that the doctor said had to be bone or my husband would be paralyzed so he goes in has the surgery and the doctor messes up and cuts the spinal cord witch leaves his good arm and hand unable to move. We seen 3 lawyers they all say there isn't enough for a case. So I'm stuck doing all the care giving. We live low income get food stamps so there isn't enough left to pay our portion of insurance to get some help to come in. So its all on me.I shower dress fix his food and drink with a straw because he can't hold a utensil.I go with him to use the rest room have to stick his thang under the toilet set and then help him get up and lean over so I can wipe him. Its day in and day out I've been put in the hospital due to high blood pressure and I've never had issues like this before. I find myself just so outrageously mad all the time.I've been trying to find a support group in my area but no luck yet.Finally broke down today crying to my sister to please help me find a group that I just can't handle this rage I have all the time.Is there anyone out there that can understand how freaked mad I am !!!

I have been with my husband for 17 years. Since the age of 14. We are now 31. 6 years ago he was diagnosed with leukemia while I was pregnant with out 5th child. He underwent intense chemo therapy and had a bone marrow transplant. I stood by him through everything leaving my babies at home 6o be at the hospital 2 hours away to make sure he was OK and had someone with him at al times.Nearly 7 years after transplant he has been left with a muscle disease, unable to work ect. A few weeks ago it was discovered that one day he will go blind in one eye and or possibly need a transplant of the eye. I am no longer happy the past 2 years things have just changed. I feel like we're 2 different people. The guilt I feel is absolute awful ?? but how can I leave him when he all these health issues going on? I am struggling ao much with this so much so recently I have been thinking there is only 1 way out of this....... but I have 5 children who need me.

I can't believe that I find this post! I am looking for a community to support but I didn't find! My husband and I married for almost 9 years, he had 6 operation on his right leg in 4 years. I was with him ans supporting him through that hard time and he was able to walk again in 2019. 5 months ago, he had a tibial plateau fracture in the left leg and had operation for internal fixation. He become bed bound after this operation, lost sensation, no movement in the left leg and due to the 6 previous operations on the right side ,he can not bear any load and can not walk with crutches. I am a mother of 9 yrs and 1,5 yrs girls and I am working in the morning. I am so tired and angry, I don't have anyone to stand by me. Sometimes i wish it was me on the bed unable to move, I need to take care of my baby girl and my other daughter needs me to chat and go out to have fun at least going out shopping but I cant do this, I can not be happy anymore, I am crying while i feed my baby. In my country we dont have specialist for peripheral nerve injury , my husband needs operation as soon as possible within 6 months window and now we reach 5 months without treatment. I contact many doctors overseas and they are able to do the surgery to him and he may needs nerve graft or nerve transfere , but I can't afford it. I feel like drowning, I love him so much. I hate everyone and I am so angry, stressed, lack of sleep, binge eating, crying most of the tome and i dont have time to look at myself or taking shower for days. He sometimes blame me of his accident because he felt from the ladder while he is arranging my babys room. Please if there is community pls help me to fimd a way to re enjoy life.

Me and my husband together for 13 years and he was a alcoholic and abusive, physical and emotional, he was addicted to porn and did everything including get abusive when I tried to talk to him, little did I know he had psycological problems, due to motor neuron disease, just found out, he is bed ridden now, and are continuing with the manipulation and psycological abuse, he told me he never wanted to marry me, but he asked me himself, so I have no idea how to pretend and tend to his every need, but i do it, i feel as if I am just his maid and never in 13 years even heard him being kind to me, I am so angry but I pray, more then ever hoping that God would have mercy on me, as I dont know how to go forward

can someone please tell me why I'm so enraged and angry all the time with my recently disabled partner. I love them but I cant bear life like this. I wish and want to just be supportive but all I am is angry and depressed and feeling like I'm just too old to be doing everything and worrying what if anything happens to me?

Not only the carer I'm the cook cleaner ,gardner, builder, plumber, taxi, painter, decorator, bill payer ,organiser. All done alone no help no one helps me ! I'm nearly burned out my back hurts my brain hurts ! Every trip outdoors you have to constantly think of that persons wellbeing, their equipment!all needs looking after tooyep I'm also a mechanic. Because being stuckat home caring for someone whilst on benefits doesn't pay for property maintenance exc its awful and I hate myself for hating my life looking after a man that is uninterested in anything due to his illness. I have no life of my own and no longer have a husband just a dependant 24/7

To Marywho posted 9-May-20... I can relate very much to your situation.We are 23 years into our relationship - 20 years married now.We were so very happy and had the relationship most dream of.We have raised 3 wonderful young men.Over the last 10 years, hubby's diagnosis are many resulting in severe daily chronic pain, fatigue, depression, anxieties, mood swings, etc. Due to his meds, his cognition and communication has been effected.I am not an angel, and have made mistakes as I was learning to deal with these issues.Like you, I am the only person in our family "still standing."He's become a very negative person and I get the brunt of all of it.Within this time period, he has pushed all family members away, even our sons - one of which I never thought would this would occur.Since I am his "entire world" it has been draining, frustrating, stressful and I am exhausted mentally.He chatters at me constantly, which I learned to tune out, but that brought its own frustration and anger for him toward me.I've been depressed and probably should return to taking antidepressants but I won't.I don't really speak much when at home, as there is no need to hash over and argue about the same details continuously.I am a person who doesn't really cry for an emotional release. I have had to become too objective as a wife in order to be the carer needed.This hasn't helped, because I am now emotionally removed.He makes me feel that I am damned if I try to be helpful and kind, and I am damned if I don't spend every waking moment in his presence while at home.We've tried counseling, and some meds have done wonders for his mood swings.He has tried very much and some improvements occurred. Parts of those have fallen away and his negativity is still ever present.I have worked with a counselor and some family members who are psychologists.All advised that I need to leave for my own health. Due to some events that occurred a year ago, it became a deal breaker for me. It forced me to take a hard look at our future together.I have become more and more isolated from our children.His family are lovely and supportive by degrees to me, but really become nonexistent as my husband perceives it... which is true to a degree. Together, we recently came to the conclusion that I need to move out. In a fortnight, I will do so.There are no plans for divorce, he still needs my support in many ways; doctors, meds, insurance, friendship... which I still want to keep.We must find a way forward in a different regard.I, needless to say, am wracked with guilt.I do love him.I simply cannot do the daily battle or the loneliness anymore.I want my sons and their families in my future and to hopefully find some bits of joy in life.Although I am older than you, I still have decades ahead of me.So the choice has been made.I don't know what my future will bring, I hope my hubby & I can find a better way to be w

So tired depressed,lonely looking after my husband for the last 4yrs he has Parkinson lewy body with dementia,diabetic,macular oedemain his eyes and now diagnosed with bowel cancer,its so cruel,that he has all these things wrong with his. We have been married for 53yrs but the last 5yrs have been awful.Its hard work and I just cry every day,now my son lives with us 50yr old his marriage has ended due to him using drugs coke,I was devastated he was such a lovely person.He cant see what hes doing to himself,he takes no notice,have told him how silly he is,and his dad is dying on pallaitive care,and he wants to live ,and my son is killing himself with this stuff he just cant see it.i have had enough

My partner is a wonderful person who life has dealt a bad hand. And life deals bad hands out a lot. He has been left with a cognitive impairment that he did not ask for nor did I , went from a loving fun , active person to a struggling individual who has challenges every day.Its hard to help he does not understand a lot, but why do people walk away from friendship, I have not changed , he has changed. But he is still is aware that people don’t visit and conversations are limited. I struggle with him, with others and myself , it’s hard and no silver lining here. People say look after yourself you had better be strong for him, please be silent is all I can think when they start with the goodwill , they have no idea!

I am struggling more and more every day being the sole provider on a waitress wage trying to support my partner and his smoking habit that can cost anywhere from $40 and up a week and our 3 children. Ever since he got ran over and has degenerating discs in his back and nerve damage and depression, it has become more and more difficult to f im and myself as some one other thg an referee between him and th e children, care giver and mom at the age of 31. I'm drowning and I have no one near me who is willing to help even just to call and see how things are...I feel alone and stressed constantly and its affecting my work. It's really hard to stay with him most days and other days I think I can still do this and keep trying . But man is it getting harder to stay positive

I am really really struggling. My partner became very ill and very nearly died. Thankfully he pulled through but I had no idea what was in store for me. I’m working full time as we need the money to pay the rent while looking after him. I’m only 34 and I really can’t do this anymore. I see no future and my partner sleeps all day on the sofa, barely able to lift a finger. I feel like he’s being selfish and we’re struggling so much financially. I have no idea what to do. I’m crumbling

My husband has mood swings, tantrums, frustration due to his disability (MS). All his frustrations and anger comes out on me being the only person around him. We got married when I was 28, now married for 8 years. With time year by yearI am finding very difficult to cope with his disability and mood swings. We don’t have children, and I have no emotional support from his family. My mental health deteriorated over years trying to cope with his anger and frustrations. I’m on anti depressants and feel very lonely and isolated. Thought of leaving him makes me feel guilty by friends and family and living with him makes me feel extremely lonely. No night goes by without crying on my pillow. I have run out of coping strategies. I feel I’m a complete failure and there’s no point living. My parents passed away when I was little and siblings are all abroad and have their own lives. I work full time and comes back home to a lonely world. I feel I’m lost. With age, I’ve run out of ideas for distraction. Feels like I’m always running away. And now I’m tired of running and running. I don’t know what to do with my life. My husband’s frustrated behaviour crushed my lively, bubbly and optimistic personality I married him with 8 years ago. Now I’m a big ball of insecurities andpessimistic thoughts. I just don’t recognise myself anymore. I need help.