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Signs that Spousal Caregiving May Be Becoming Too Risky for You

Spousal caregiving may becoming risky
All caregivers who experience elevated levels of stress are at an increased risk for physical and emotional issues.

Find home care near you or your loved one:

"Will you still need me,
will you still feed me,
when I'm sixty-four."
The Beatles, "When I'm 64"

Times have certainly changed since Lennon and McCartney penned and sang those words in 1967. Medical and healthcare strides are allowing people to live well into their 70's and 80's. Despite those health advances, the fact remains that caring for a spouse in need, regardless of their age, is very demanding, stressful and could threaten your own health.

The Journal of American Medical Association reports that if you are a spousal caregiver between the ages of 66 and 96, and are experiencing ongoing mental or emotional strain as a result of your caregiving duties, there's a 63% increased risk of dying over those people in the same age group who are not caring for a spouse.

As a caregiving spouse, you may begin to feel very isolated from friends and feel tremendous guilt about your own unmet needs. There can also be a sense of loss, especially if your spouse suffers from dementia or Alzheimer's disease.

So how do you know if caregiving is becoming too risky for you? Examine this list and see how many apply to you:

  • Missing or delaying your own doctor appointments
  • Ignoring your own health problems or symptoms
  • Not eating a healthy diet for lack of time
  • Overusing tobacco and alcohol when you feel stressed
  • Giving up exercise habits for lack of time
  • Losing sleep
  • Losing connections with friends for lack of time to socialize
  • Bottling up feelings of anger and frustration and then being surprised by angry, even violent, outbursts directed at your spouse, other family members, co-workers - even strangers
  • Feeling sad, down, depressed or hopeless
  • Loss of energy
  • Lacking interest in things that used to give you (and your spouse) pleasure
  • Feeling resentful toward your spouse
  • Blaming your spouse for the situation
  • Feeling that people ask more of you than they should
  • Feeling like caregiving has affected family relationships in a negative way
  • Feeling annoyed by other family members who don't help out or who criticize your care

All caregivers who experience elevated levels of stress are at an increased risk for physical and emotional issues.

Even if you are only experiencing two or three of these items, it is important to get help and support.

The truth is your spouse/partner will be in better hands if you are healthy.

Last revised: April 11, 2010

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Thoughts and stories from others
  1. October 17, 2019 at 11:03 pm | Posted by Danny

    Caregivers: You must make time for yourself. You are not sick. You are healthy. Do not feel guilty that you are healthy.If you want to stay in the relationship, you must find time for self care. Get a sitter to have nights out while they are sleeping. Or, daytime if that is their down time.You can also find a full time skilled facility that can care for them and visit instead. You will either have a healthier relationship with each other or you can move on and know they are in good hands. There is no guilt in getting the best care you can for your loved one and that does not necessarily mean you. Especially, if you are becoming ill because of the care giving.Who do you think will do it if you are gone or get terminally sick?If you are overwhelmed, now is the time to seek outside help. Right now!You are not responsiblle for the illness of your mate, but you are responsible for yours.Please relieve yourselves of fault for lack of resources to carry the entire burden of the care.Please seek help.

    Reply

  2. September 25, 2019 at 5:08 pm | Posted by Nick

    My wife and I have been married for the past 10 years, and are 37 and 38 years old respectively. We also have an 8 year old daughter. Shortly after we married, my wife began experiencing chronic health problems; A damaged ligament in her shoulder which required multiple surgeries (all of which failed to correct the problem), and the development of an autoimmune disorder. Both of these conditions caused severe pain and would sometimes cause her to be bed ridden for weeks at a time. Early on, I became well aware of how stressful, and demanding taking care of frequently sick, and injured person could be. However, all of that paled in comparison to about four years ago when she suffered a massive ischemic stroke which left her paralyzed on her right side (completely unable to use her right arm/hand), as well as expressive aphasia (she has extreme difficulty conveying thoughts into speech, and also lost ability to read any printed text). Extensive physical, and speech therapy have done little to help her improve in either of these areas. She now has chronic pain in her leg because of her abnormal gait caused by the stroke. Falls resulting from something as simple as standing up from a chair, or stepping on to an unfamiliar surface are a constant risk. I've reluctantly accepted that her current state will likely be the most improvement we will see the rest of her life. I love my wife dearly, and am grateful she survived, but I'm frustrated. I'm exhausted always having assume a care taking role in our relationship. Everything in our family revolves around her health, and physical limitations. The past few years especially, have been a stressful, non-stop parade of doctor's appointments, medication issues, physical/speech therapy, ER visits, and hospital admissions that seem to solve nothing. I see other families with children the same age as our daughter, and just feel an intense sense of anger that our family can't do normal things that a young family would do. I feel like my career has been neglected, as most of my time is devoted to taking care of household responsibilities that my wife is unable to do, and that I am constantly having to miss work on her behalf. I'm sick of seeing the pity in other people's eyes whenever they see us, or hearing it in their voices when I'm telling them about my wife's condition. I have resorted to just avoiding telling people about my family's circumstances if I can help it. I'm sick of being immediately known by name at places like the pharmacy and doctor's offices. I love my wife, but hate being a caretaker. I hate having this gnawing sense of guilt, because I can't say this out loud to our families, friends, or her healthcare providers out of fear of being ridiculed, and made to feel like I should have nothing but a deep, undying sense of pride in my responsibility as a caretaker. The most frustrating part, is that my wife was, and still is a fiercely independent woman, and I know that she hates this as much as I do.

    Reply

  3. September 17, 2019 at 10:04 pm | Posted by Nancy

    My husband of 8 years and I are both 69. I have worked cleaning my 2 airbnb units (1 small... 1 large 3 BR) since we married. He has COPD, Diabetes, and heart failure. Because of the water building up in his body, the water started dripping out of his legs and caused massive infection. The legs drip all over, look like a severe burn victim (so raw) and need to be bandaged in several layers twice a day. He can hardly walk... and I have taken over ALL the daily chores and watering our huge garden. I am no longer “in love” with my husband; but I care for him... and wont leave him in this condition. Before we married, I took care of my older sister for 3 years before she died... and here I am again. Never leave the house accept his Doctor appointment, shopping, and working my airbnb cleanings. I am severely depressed and thought of joining a group; but I have NO TIME to do so. Not sure what to do. I started smoking again... and dont know how to stop under these conditions. Can anyone suggest reading material to help me get through this?

    Reply

  4. September 7, 2019 at 6:23 am | Posted by Nina

    I've been caring for my terminally ill for 4 years and I am just frustrated and tired. My husband is passive aggressive and was sometimes physically abusive. The last time he hit me , I told him we should separate, but unfortunately, he got diagnosed with leukaemia, out of compassion, I decided to support him through the treatment, unfortunately, the cancer didn't respond to treatment and now I'm stuck. He totally unappreciative, he has on occasions maligned me to family members, even trying to turn our children against me.....he stopped all treatment and refuses to see the doctor even when he's unwell, leaving me very frustrated. I'm finding myself becoming resentful... Iife is too short to spend it caring for a passive aggressive, ungrateful spouse.

    Reply

  5. September 3, 2019 at 12:07 am | Posted by Robert

    I am 27 years old and I am currently a caregiver for my girlfriend of the past 7 years. She had brain surgery for a brain tumor removal and it resulted with many complications. Currently, she cannot make any decisions for herself and can't even have a conversation without giving you very bland answers. It's like I am taking care of a child and there is no intimacy. She was in the hospital for 2 months and I have been caregiving for 1 month now on my own. This past month has been stressful due to the fact I have to keep her up all day and I am also her personal at home therapist. She goes to therapy 3 times a week for 6 hours and that is the only time I have to myself. Another thing that is stressful is that I don't get any recognition from her, which is completely normal for someone who's location of brain injury is, but it just sucks that she is not completely here. I don't know if she will be the same and I don't know for how long I am going to be doing this. Eventually, I have to return to work and start enjoying life again. I will stick to her side until she gets better and that is because I love her and I can't leave her alone like this. Im just scared that what if in the future I want to move on if she does not improve or she is not the same person I fell in love with. This was not her fault. She does not deserve this. My mental and physical health have significantly declined. Sorry for ranting, just wanted to express my story.

    Reply

    • October 18, 2019 at 12:19 am | Posted by Angie

      Hi, I am in the same situation except my husband was in a car accident 2/26/19 and is completely paralyzed from his chest down, he can kinda wave his arms around but has also had some brain injury.

      Reply

  6. August 22, 2019 at 10:06 pm | Posted by Anonymous

    My son died and then my husband got increasingly ill. I’m so tired of being house bound the past two years. I just want to die dear God I can’t take much more I’m so sad I cry every night and he is driving me crazy he can help himself but he won’t he is lazy and mean sometimes he is sweet I’m just so tired of my life

    Reply

  7. July 22, 2019 at 5:32 am | Posted by Rachel Warren

    17 years ago my husband had his laryn removed due to cancer a tracheostomy made then followed 24 hours later with major brain haemorrhage. He was in hospital three months. From then on I have been his primary career. After 4 years I had some social services help granted a few hours a week. I continued with my 3 days per week job for the income and I needed time away from him. We had to sell up and rearrange our lives and finances. I have been unhappy many times and he has been very difficult to live with. I've tried to make allowances for his disabilities and frustration but he has no consideration or concern for me. I have just had my second hip replacement following a year of increasing pain and he has responded with jealousy and ignoring me. He's finally made a verbal attack on me on my return from hospital. I am done. I cannot live with him and care for him any longer. He has also deeply upset his part time career of 7 years and she no longer wishes to do the job. We own our own modest home and I don't want to leave it so am exploring options to move him out. Something has to change. I'm done sacrificing my life for him. I'm now 66 and hope to enjoy what's left of my life.

    Reply

    • August 25, 2019 at 4:56 pm | Posted by Deborah Gesser

      I was once on the other so my husband took care of me I said thank you for every little thing. A glass of water changing me when my pajamas were wet with sweat. After two weeks he started losing patience with me he would make me wait for my breakfast so he could sleep and I was starving because I could only eat 2 ounces at a time. Now I am care giving him. I feed him cook for him make him good healthy home cooked meals. Started helping him with our finances. I want to take care of it all. He never says thank you. But he won’t let me. He keeps making mistakes and iscausing us more debt . He’s emotionally and verbally abusive . Sometimes physical I don’t know what to do my three daughters won’t help they said they would take care of him if he divorces me and puts all the money on their name but we know that’s not true because there was a hurricane two years ago when he was out of the hospital and I just drove straight past our house I mean my husband who is just out of the hospital I carry in heavy furniture you just won his money and then put him in a state home. Where can I help he gave me one heart attack my older daughter Laurie also she broke my heart

      Reply

  8. June 26, 2019 at 2:39 pm | Posted by Elaine

    How about the guilt I feel with my spouse taking care of me. I am in a wheelchair.. .due to pinched nerve. Still take care of all paperwork with our business. Never get a thank u. I thank him over and over. Tired of hearing about the caregivers. Try to find fun for both of u. Set times u can get out. Stop escaping. Unfair reviews. Where is the view from the other side. Grow up, and thank god for your good health once in a while...work it Out!

    Reply

    • July 20, 2019 at 11:39 pm | Posted by Rebekah

      I hear your pain and this post and others like it are not taking away from your needs or pain. It is helpful for people like myself who have been taking care of their spouse for 16yrs, to find material to get through our pain. Let’s not belittle each others needs and feelings. Sometimes the needs of both parties are greater than the couple can endure and help is needed to keep them both as healthy as possible. I wish you healing in heart and body.

      Reply

  9. June 20, 2019 at 2:20 pm | Posted by Jerry

    I am 58 and my wife of 29 yrs is 75. She was diagnosed with parkinson around spring of 2017.Since that time she has progressively gotten worse, I have tried asking for help from family and friends but fill guilty because I made that VOW. They have extremely busy lives so I quit my job so I can try and take care of her 24/7. They all seem now to resent me when I ask for a few hours of relief around the house and not in public because she can fall so easy. Someday I think that she would be better taken of if I just walk out in the middle of the night or walk to the closet and finish it all. I know that this is selfish but man I need some relief. I blow up over little things and the next thing is I want to hold and protect her.. don't know what next.

    Reply

    • August 12, 2019 at 10:19 am | Posted by Nikki Page

      I have been with my spouse for 35 years. He got sick in Jan 2016. I need a break. I have not had even one day off in all that time. I have a list of assisted living facilities and I plan to start visiting them. Medicaid does not want to pay me more than 18 hours a week. Its unsustainable. Plus his measly 949 ssdi. It costs more than the two combined to live in squalor. I depend on food pantries. I am trying to find a job. I have my own health challenges, but am looking for part time night work that I can do. I would sell this dumpy falling in trailer and get a motor home but he refuses to come live in one. It's probably a bad idea anyway. I am miserable and sad. I want to go to the beach. I want to go home to New England. I had to move to Florida so he could have the warmth. I do everything, plus mountains of paperwork. I want to walk away from all of it.But my heart mourns for him. The thing is I know its killing me. And what good will that do for both of us. I won't be here for my kids and grandson, and he will end up in an ALF anyway. But I just can't seem to get my head in that truth.

      Reply

  10. June 17, 2019 at 10:23 pm | Posted by Boy

    I have a boyfriend for 11 years now we are engaged for almost 2 years now. In our relationship we was only dating for 3 years in 2012 he got sick with end stage kidney failure I was staying with him for 2 weeks in the hospital none of his family was there to help me with him which they only at the time lived 30 minutes away by walking 5 minutes by driving since before he was abusive hitting me calling me names even treating my daughter at the time 6 years old wrong hitting he behind my back my daughter was so afraid of him she didn’t tell me until he got sick I felt like I couldn’t leave him because he was sick and had no one to care for since 2012 he was good walking doing dialysis until he cheated on my when I found out he had to get a pacemaker put in his heart again none of his family there just me and my daughter okay fine I was strong working being a mom holding the house down and being a care giver fast forward he broke both his patella tendinitis got surgery was in the hospital for a week had to stay at his mothers house now we just live not even a block away from his family everyone is in the same location where all you have to do is walk to the next building again even staying at his mothers house he wasn’t getting food or help I had to always leave the house to bring him something to eat bath him and keep him company go to dialysis at 4 am to him in the chair agin on one help me only my daughter a year later he had to get hip surgery this time his family didn’t even call or went to see him at all he was in the hospital for almost 2 months everyday my daughter and I went to the hospital after this I have had it with his family mind you I even got nasty looks from his family for no reason so at this point I was done with his family I even didn’t want him talking to them because you have no idea how hard it is to do everything on my own it’s not fair that my daughter has to help when he has a son of his own that didn’t even go see him too or help after 4 months he wasn’t taking to his family no one was even trying to reach out to him so now I am on bitch mode with them but now from my friend I get that’s my family they don’t have to do for me but here I am back hurting lack of see with my own health problem at the age of 31 helping him out and he turns and say that to me so I let it go whatever that’s not my family doing it to me but I get so upset with him that I stop talking to him because it’s not fair my daughter and I have to live this way while his family is just living life I get so mad that I cry why me why did I have to put my daughter that is now 16 into this mess. He doesn’t understand that if his family is not there for him why talk to them am I wrong for being upset and telling him this and still since his hip surgery in 2018 he has not walked in a wheelchair I help him bath take him to the doctors he only goes outside on dialysis days having family that live in a building with a ramp where he can roll down with an empty room didn’t even give a helping hand. I feel depressed sad and hate my life I have no friends because I let him control me when I was 21 my heart is heavy and I want to run away but feel guilty if I leave I see all these stories and I don’t know how some people deal with it I just wanna run can anyone give me advice

    Reply

  11. June 15, 2019 at 2:42 pm | Posted by Pamela Whiteley

    I left my dying husband of 21 years after 6 years of full time 24/7 for Parkinson’s. I was depressed and begged him to hire help 2 nights a week so I could sleep. He said no. We had a prenup and he had 9 million. I had nothing. The day I left his daughter hired 4 people to take my place. She hates me but got the 9 million. My blood pressure went from 180/118 to normal after 2 months away from him.No one cared about helping me. For 2 years I begged doctors, therapists, nurses, counselors, and his daughter. Only my husband could hire me help but he always said “no, you are lucky to live in my house.” He felt his millions made me his slave.How could I leave my husband with just one year left to live? Because his selfishness was killing me.P J WHITELEY

    Reply

  12. June 1, 2019 at 9:02 pm | Posted by Lynn G

    I'm 54 and I'm taking care of my spouse that's 62. Multiple health problems and is starting to lose his memory especially short term. He started going downhill a few years after we got married. I NEVER ever thought I would be in this situation at this age. It's so hard cause I'm lucky to even be able to go to the store. I'm not able to visit family or friends and nobody visits us because it's hard to see him the way he is. It's really hard when you can't even see your grandbabies and great grandkids. I get angry when I shouldn't, I blame him and there's nothing he can do about it. It's so hard watching the love of your life suffer. He's my second husband and my last. I already battled my own demons with depression, anxiety and PTSD but now it's worse. I get sick more and don't sleep well cause when he has a bad day he can't sleep. I have to stay awake and make sure he doesn't fall and make sure he gets his meds correctly. I wish I knew why the Lord put me on this path especially when I can't see family but we are not supposed to ask why. I'm sure one day I'll know why. I just don't know how much more I can handle. I say that but yet I know I'll NEVER stop cause that's the type of person I am. Just wish there was an easy button.

    Reply

    • July 17, 2019 at 11:19 pm | Posted by Sharon Niebrugge

      Hi Lynn I am in a similar situation, my husband had surgery to remove a blood clot from his large intestine . He was in the hospital for 59 days sent him to rehab place he was there 2 weeks , now home. Like you his family lives 3 miles & other son 7 hours. Oldest son has come to see him offer's help, he has work &2 kids 1 has autism. He had 2nd surgery May his lower intestines began hurting the surgeon took more out. home now Idkw will happen next we see the surgeon 8.5.19 then go from there. I'm very tired I work full time & OT I help him w/shopping, food reminding him to drink water, anyways I'm feeling everyone of those above. Ty for listening

      Reply

  13. May 29, 2019 at 9:35 am | Posted by Marcel Leatham

    I am home taking care of my wife the past 3years am I the spouse entitled for any payments from the government.how can they assist me

    Reply

  14. May 19, 2019 at 11:04 pm | Posted by Lea

    Ellenrose, Hear you.....my 72 yo husband is in late stage 4 kidney failure, little % away from stage 5 and has had several mini or TIA strokes. He is not going for dialysis. He is a 2nd marriage for me, we married later 2012, I am now 64. Five months after marriage, I was taking him to emergency hospitals every few weeks for severe infections aka, kidney disease. The very bad diseased kidney was removed early 2013, spent a month in hospital, 2 weeks followed by a stint in ICU due to septic shock and acute kidney failure. The doctors didn't think he would make it through, that was Summer 2013. Since 2014, there have been multiple trips to emergency hospital for infections and strokes, etc. He also has severe hip and lower back pain, been on opiate pain meds for 4 years now. He has always had a short temper and is verbally abusive towards me. He was diagnosed with severe PTSD in 2014. So far I am healthy except for the daily stress, walking on eggshells and up/down depression. We have no support from family or friends. My friends can't stand him and 3 of his adult children have nothing to do with him. I try to make the best by getting outside for regular exercise, a hobby and go out of town couple weeks a year. I am grateful for the later. This has been so hard, never thought my 60's were going to end up like this, guess those are selfish thoughts.

    Reply

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