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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. May 13, 2019 at 9:59 pm | Posted by Rene

    I see myself in so many of these stories, I have been feeling so alone since no one understands what I am going through, I am 57, trying to work full time at the house with my husband home on hospice, since I am the sole caregiver my life has become full time diapers, feeding and changing linens, I never have time for anything else and it is getting to me, i feel sad for all the stories I see here but now I don’t feel so alone, thank you for sharing your stories and I feel everyone’s pain!

    Reply

  2. May 8, 2019 at 4:12 pm | Posted by PJM

    I do not think I can go on like this. My husband is paralyzed (quadriplegic) C5 injury. 2.5 years post injury now. we have 2 children. He is 58 and I am 55. I am working full time and agencies (4 of them now) have turned us down for help because his range of motion exercises are too hard for them to help with. I have had to try and find help on my own. I am exhausted. I do not think I can keep going on. I only hang on for the girls. They are 14 and 20.

    Reply

    • May 16, 2019 at 4:00 pm | Posted by Sue Madsen

      Dear PJM, It is so hard to go through all of that. I have not personally had to be the caregiver, but I have been a paid caregiver before, and also my mom is caring for my dad, and so my brother and I and the rest of the family try to just help them any ways we can. I don't know specifically what resources are available in your area, but I do know of a couple of organizations that support people going through hard things like this. One is Focus on the Family- their number is 1-800-232-6459 (1-800- A-FAMILY), and one is Joni and Friends- their website has some caregiver support: https://old.joniandfriends.org/help-and-resources/ and also: https://old.joniandfriends.org/help-and-resources/i-know-someone-with-a-disability/disabled-spouse/ and I think there are some other ways those two organizations may offer support. I will totally be praying for you and your family. Hang in there. I will be praying for some people to come beside you all.

      Reply

  3. May 6, 2019 at 1:16 pm | Posted by Connie G

    2005 my husband was diagnosed with M.S. He has lost all his use of his legs. Is now in bed or wheelchair. I couldn't do it alone any more. He is now in a care facility. I've also been raising my 3 grandchildren for 10 years. Having to deal with their divorced parents has been very stressful. My daughter mom to the kids proves to be the most difficult of the 2. The reason I called CPS was the parents being on meth. Now she is 37 and has been on meth more than off. Every thing has been placed on my shoulders. Court, money being disbursed properly, the extra activities of the children, most and at times all yard and house work. I get little help from the dad. I want to be a wife, a mom and grandma. But it is what it is. I use to be very pretty nice teeth nice smile I was fun to be around. I always laughed and joked. Now my teeth are bad most gone my back hurts all the time. I love my husband my grandchildren but I lost me. I don't do anything or have a hobby or an outlet. I want my husband home with me but I just can't do it all anymore I'm 58 years old. We can no longer have sex 9 years now but he continues to talk to me in a sexual way that I feel uncomfortable with. I don't want to hurt his feelings. Today was the day I told him please stop I don't like it. He kept texting me the same dirty talk. So I decided I was not going to go see him today. I know it would keep going once I drove an hour there. I wish I could turn back the hands of time. When we were happy making plans for our life in old age. Now I wait for the police to come to my door with news of my adult daughter. I pray she gets picked up on her warrant goes to jail where I feel she would be safe. A person can take so much until it's just to much. I feel bad not going to see him today but I have to find me. I don't know how to start.

    Reply

    • August 4, 2019 at 8:07 pm | Posted by Florene Sprague

      Just stay strong. Easy to do right ? There are so many of us out there. Just do your best and turn it over to God and you will be answered. Some tests are harder than other I am older and no sex for 6 or more years so I know the feeling. Doing my best. Broke down today. Cryed. Got really mad, This afternoon I am doing much better. Hang in there

      Reply

  4. April 22, 2019 at 6:16 pm | Posted by Dee

    2/23/2016 spouse had massive stroke leaving him with right paralysis of arm and imbalance on right side and global aphasia. He went from financial overseer to total loss of cognition and communication skills. His care is my entire life and while we have 5 children there is minimal to no help with him. I'm 76 had barely retired from my career when this happened and I am overwhelmed from the stress and responsibilities of his oversight and care. I do have limited assistance with his bathing a few days a week but I need more time so I can enjoy my Grandchildren and not burdened with his care. The man I live with it far from the man I met 40 years ago it's so very sad.

    Reply

  5. April 7, 2019 at 2:01 pm | Posted by carole adams

    my husband is 90, I am 75. wh has aprkinson's moderatly and aging issues. has always been a control person, ran his own home buiding b usiness and was always on site and the "boss"/ now he expects to be at home. never says please, or thenkl you, simply orders me around. he has become more debilitated in the last 6 months. we watch his shows ontv, listen to his music, go ro bed when he says and between times, I am there for what he wants. If I leave the house (which is rare) he always does something he shouldn't and I come home to find he has cuts, or has fallen, so I am not going out unless there is someone wit him. famly will help if i ask, but that gets hard sometimes, they all work. I feel more like a live in maid. my hous is quiet all the time because he sleeps in the recliner about 12 hrs. a day and is in bed for 10. I had a heart attack 7 mo. ago and was only in the hospital 2 days after a stent to relieve a 100%blockage. back to normal at home. when I returned. I am very weak and tired all the time and have dificulty doing home chores. my house is slowly going downhill. now he has fallen and has a concussion. I have to make a plan for doing things and try to to regain some o f me or my anger will eat us both alive.

    Reply

    • April 10, 2019 at 10:45 am | Posted by Dee

      I hope your feeling and doing better. You have to at this point think of yourself first. Maybe you can get an aide to come in and help you both. I’m 67 and take care of my 89 year old mom which isn’t easy( she stubborn and doesn’t want to do anything for herself). At first I felt guilty and felt I had to do everything. My own health was being neglected. I pray things become a little easier for you

      Reply

    • May 10, 2019 at 8:09 am | Posted by Annette perla

      Hi carol, just found your post and we are speaking from the same hymn sheet. My husband is 95 and I am 76 and am so tired with how he has become. We live in Sw France, big garden to look after, a lot of work and he’s gone from being a person who did a lot to absolutely nothing. I am so tired like you and resentful. He’s become so selfish and I see myself disappearing.. what can we do? Support here is very difficult but I want you to know you aren’t alone.. perhaps we can be in touch. My email is [email protected] if you want to be in contact!

      Reply

  6. March 22, 2019 at 3:46 am | Posted by Ellenrose Atwood

    I am a caregiver of taking care of my husband ,he has had 2 severe strokes and now chronic kidney disease, he refuses to do what the doctors tell Him he won't take his meds and when ever I try to get him to he argues with me,then he has a diabetic incident and again we are at the hospital,I too have been depressed and wanted out,but just how do you leave someone sick and stubborn and again,if u have family on his side,if u did you would be considered a rotten person,but they don't see the person throwing up and they Don have to clean up the mess but they can say your wrong if u leave him, he is not so sick sometimes but I never know,even the doctors don't know what's going on,I just want to have some kind of life,I am on disability and have depression plus PTSD and have problems and it just makes it worse,so I know how it feels,all I can say is don't give up you who ever are caregiving some spouse keep your thoughts ,say and realize it is what it is and remember to also love u ,don't get discouraged,it is not your fault your husband's did this to them,just pray to God he will help you have the strength, I don't have no one that helps me with my husband and well I have friends,but the truth is ,I am alone,but not really Jesus Christ is with us,he is all we need,that is all I have to keep me up and not down ,even,through the hard times.

    Reply

  7. March 6, 2019 at 1:27 pm | Posted by Harriet Parker

    My husband of 37 years has diabetes, stage 3 kidney disease and diabetic retinopathy, he's been disabled since he was 52. He is unable to do his work as a nurse or completely care for himself. For the past 7 years I have worked full time or more and cared for him. I am lucky in that his mind is still very good, but as time has gone on he is more debilitated and very demanding. I read everyones story and I feel bad for being upset by my situation. It seems like he just gets over one thing and something else happens. Last year it was his eyes, this year it's been wounds on his feet that require me to do wound care. I fear this is only going to get worse, and already has, over time. His condition keeps most of our kids away because they don't like seeing their dad in this condition. Luckily, our son lives with us and he does help when he isn't working. I guess I am selfishly grieving for what life was or could have been. It is beginning to take a toll on me though mentally and physically. I'm lucky to be pretty healthy still and that's good. I don't spend time with my friends anymore. Does anyone else feel guilty leaving their loved one and going to do something fun with friends or even family, when they can't go?

    Reply

    • March 20, 2019 at 10:06 pm | Posted by Person

      You bet. I miss time with grandkids . The day I retired from a demanding job of 35 years I thought id have time to take active vacations and volunteer. That abruptly changed due to my husband's back surgery. Now I cook, dress him,take him to Md appts and empty the urinal. He can't walk. Wheelchair s don't fit in our doors. Life is grim, exhausting.so far much of his expense has fallen on me. My 401 k maybe spent in no time.

      Reply

      • April 24, 2019 at 12:14 pm | Posted by Stephanie

        Your situation sounds much like mine. I am having a very difficult time with his hygiene. He is able to use the commode by himself, but many times he hasn’t cleaned his rear end and it’s left in the shower for me. It’s also been on the shower handle and the toilet bars. Why is it that I get so angry over this. I make it out as if he does it on purpose. There are 18 yrs apart with us and yes I do feel as if he has robbed me of my life. He hasn’t but the doc that replaced his knee did. No attorney in the state of Fl will take our case due to personal conflicts. My husband is a retired police officer of 52 years and I don’t know how to release my anger. I desperately need help! If anyone can offer me insight, I welcome it.

        Reply

    • April 27, 2019 at 3:31 pm | Posted by Gayle Curcio

      Oh I really can sympathize with you. My husband is 65, both of us recently retired and has spent 1 out of 2 years trying to be off his feet because of wounds. I’ve had years of a variety of his health issues and to make matters worse, our only daughter had a rare genetic disorder requiring her to be on a ventilator for her 12 years of life. We were blessed with 24 hour nursing and I had a ball with her despite her handicaps. But now I resent being back in the same old boat, watching everyone I know have a life, while I just sit around and wait. Diabetes can be much worse than I ever would have imagined

      Reply

  8. February 26, 2019 at 11:03 am | Posted by Susie

    In 2007 my husband started having blood in his urine . But the doctors told him it would be 20 years of more before it would develop into kidney disease. So he continued to smoke his 2 packs of cigarettes a day, eat fast food and not exercise. Fast forward to 2013 he starts having severe back pain. In 2015 he found a doctor that would take the risk of operating on his back because at this time he was diabetic, taking 3 blood pressure meds and statins. During survey they found out his kidney wasn’t functioning. He was only at 30%. Six month later 8% and on dialysis . Over the past 3 years his health has worsened and because of the severe back pain he is on OxyContin and fentatal. I am his sole caregiver and I have to work full time to pay the bills. I’m 63. He sits and cries, is depressed, can’t bathe himself. And can barely walk. I get a lot of guilt trips laid on me like, you don’t love me anymore, or you don’t like being around me. I am at the point that I’m angry all the time, I don’t have compassion for him anymore. Cause he did nothing to help his health when he has a chance. Now my health is suffering. Had thyroid cancer last year. I am really starting to bite back at him. I don’t know what to do anymore.

    Reply

  9. January 11, 2019 at 8:26 pm | Posted by J Bridges

    I have long past 64 I am now 69 almost seventy and have been doing this for 9 years now. Unless you have long term care policies or are financially independent there is no way out....period. 9 years ago my Mom passed. She had frontal temporal dementia and was in assisted living the last few years . I was her caregiver and the go to person for her mental illness the prior 25 years even though my father was still there. I left for a couple of days to take care of her arrangements and while I was gone my husband went out on one of his binders got food poisoning from the bar resulting in sepsis and a subsequent stroke. He has never once put in any real effort to help himself. Physically he came back with no paralysis etc but major issues with executive functioning which affects everything! It has been a living hell and is getting worse. Halfway through I had a heart attack . I most likely will die before him from the stress. Financially even if I could get a decent job at my age could we possibly live separately. There are no financial assistance resources out there to help. So so many of us fall between the cracks. My daughter helps where she can my son not at all. This is just not right there is no help anywhere. Most other countries help with their elderly...not us! I have many times "accepted" my circumstances until you just can't "accept" one more day. It is a hell you can't understand until you have lived it. If you had a loving relationship it is hard enough if it was a difficult relationship I would suggest you get out now before it is too late!!

    Reply

  10. January 10, 2019 at 6:40 pm | Posted by Sheryl Baize

    My husband suffered a severe stroke October 2017. He has made improvements, as he can now speak, but has a lot of trouble with word retrieval. He has no movement in his right leg, and tiny movements in his right arm. I am so grateful for what he has relearned. I am his sole caregiver. I do not get any time to myself....been tending to him 18 hours a day since he came home from Rehab in November 2017. He no longer tries to work his arm or leg unless I am there to do it with/for him. At one time he could move his foot....now he "forgets" to try to move it. If I stand there to watch, he will attempt, but that movement is now gone. He never wants to have a conversation, so I have no one to talk to. He spends all day watching TV. I get no time off, and not able to get away. I am losing myself, and have no way to dial it back.

    Reply

    • February 23, 2019 at 8:08 pm | Posted by Beth

      I’m in the same boat, pretty much. Husband is on hospice with terminal emphysema. Our daughters don’t care, I do this alone. He’s 69 and I’m 62. I feel 80.This is like an eternal torture, note seeing an end for either of us, the quiet...waiting and dealing with the emotional mess that is me these days.

      Reply

  11. December 21, 2018 at 11:43 pm | Posted by Lisa

    I see lots of Wives dealing with Husbands. I too have an ill husband who takes chemo meds for essential thrombocythemia (a mutogenic blood disorder...he makes too many platelets). He is not lazy or helpless...quite the opposite. In fact that is the biggest problem...he just keeps going and puts his health at risk daily. He suffers many side effects and is anorexic (one of the sides) which means he never eats. I have to try to find things and remind him to eat. He constantly refuses...says he is busy or sick or whatever. He vomits and has diarrhea. Needless to say he is not a very happy person. He doesn't sleep. He worries about EVERYTHING. I am STRUGGLING. Trying so hard to be supportive. Our marriage is definately suffering. He doesn't feed himself when I am gone (I work 3 days a week). I try to make or buy something....but I frequently am refused. When he feels his WORST his behavior is THE WORST. He will often push through his day harder...won't take a nap after sleeping only 4 hours or something. I have asked about therapy and it's fine if I go but not for him. I love him so much but he won't alter his behavior. He has always been stubborn and autocratic but now he's such an asshole and the man who I loved rarely show up before 8pm in the evening if he shows at all. I don't know why....relates to his meds I think. Any time I am upset or whatever or calling him out for being mean or negative he unloads. I start yelling because he's doing it again.....all while his health gets worse. He won't be proactive with his doctors....won't tell them about ALL his side effects. Meanwhile it aaaaalllll rolls onto me. I had breast cancer 5 years ago and I pray it stays away. This negative and toxic atmosphere is killing us both!

    Reply

  12. December 14, 2018 at 5:18 am | Posted by Joyce

    My husband had a severe stroke the first part of this year. I am his only caregiver He has made improvements which I am so Thankful for however the only thing that he can do on his own is brush his teeth and feed himself. I get 2 breaks a week to go to work for maybe 5 hours. I feel so isolated depressed all the time and no time for my family.We see his when they stop by maybe for 15 minutes at a time on most days I am losing it!

    Reply

  13. November 11, 2018 at 9:37 am | Posted by Shannon Meredith

    My husband had his back totally rebuilt seven years ago with rods and screw after several other minor back repairs that started the year after we were married. Due to high pain level a Pain Stimulator was installed but has not reduced his pain. Pain level runs between 6-8 the majority of the time meaning he can’t do anything around the house. Theirs leaves all work as well as books to me. I have a booth at an antique mall to keep me sane but over the past week he his pain level has increased to the point he can’t get out of bed causing me to wait on him hand and foot serving meals in bed and running for items he needs. I had my Lumbar 4,5 & S1 rupture in August and have barely been able to walk after 3 months. My first two months of recovery he stepped up and tried to be there for me but I couldn’t eat so he didn’t have to do much kitchen work. He has no friends or hobbies and relies totally on me. His children live their lives in other states and he seldom hears from them.

    Reply

  14. November 11, 2018 at 9:34 am | Posted by Shannon Meredith

    My husband had his back totally rebuilt seven years ago with rods and screw after several other minor back repairs that started the year after we were married. Due to high pain level a Pain Stimulator was installed but has not reduced his pain. Pain level runs between 6-8 the majority of the time meaning he can’t do anything around the house. Theirs leaves all work as well as books to me. I have a booth at an antique mall to keep me sane but over the past week he his pain level has increased to the point he can’t get out of bed causing me to wait on him hand and foot serving meals in bed and running for items he needs. I had my Lumbar 4,5 & S1 rupture in August and have barely been able to walk after 3 months. My first two months of recovery he stepped up and tried to be there for me but I couldn’t eat so he didn’t have to do much kitchen work. He has no friends or hobbies and relies totally on me. His children live their lives in other states and he seldom hears from them. I get so tired of all the demands on me and I’ve become resentful and depressed and get angry with myself for feeling resentful. I have a few friends and one sister I unload on but they have their lives.

    Reply

  15. October 28, 2018 at 2:31 pm | Posted by Miranda

    My husband broke his leg 3 weeks ago and he’s been on the couch ever since and constantly complains about his situation. He’s never comfortable and is just miserable to be around. I have two kids under 10 and now I find myself feeling like a single parent of three children. His injury happened and overnight my life was changed. He needs everything done for him and I’m EXHAUSTED. I used to complain about when he got sick with a cold because to him it was like having the flu. I had no idea it could get worse. He expects me to wipe his butt and then bathe him in the shower. He has two working arms but he’s totally milking this helplessness if his. He guilt trips me into caring for him in the bathroom by saying I’m putting him more at risk for further injury if I don’t clean him up. I make him food, I get him more ice for his leg, I refill his water cup, I dump his two rotating urinals all day long and I run errands for him.I also have our two other kids that need attention and care. I have a house that needs to be maintained, laundry that needs to be done, food that needs to be prepared, dishes that need to be done. Homework and school with the kids.I’m finding myself on edge. I’m moody and resentful of him injuring himself and putting us into this situation. All I want to do is lay under the covers all day and not do anything. I have my two kids that are left for hours to entertain themselves. I’m constantly on the verge of tears.I know one day he will heal but I’ve been told by the doctor that his leg will never be the same and I know from previous injuries he’s had that a lifetime of complaining of his old injury will continue. This leg injury will do nothing but add to him complaining about his chronic neck pain that he already deals with. I’m at my wits end right now and just need to vent.

    Reply

    • January 3, 2019 at 12:03 pm | Posted by Louise Ashburn

      I am in a similar situation but I have found out some things that helped me. Firstly, I have 5 urinals to rotate, and a bucket that will hold 3 of them. I leave my honey to use them as he wishes and he hangs them over a rail on a cart next to his bed. When it's convenient for me I take some in the bucket to empty and wash out. I got a special bottle brush that is used only for this and nice-smelling liquid soap. I also got him several large water bottles with wide bases and keep two or three filled by his bed so I am not refilling them all the time.Since his condition is permanent, I invested in a Rubbermaid cart that sits beside his bed and holds books, puzzles, adult coloring books and colored pens, the urinals, the water bottles, his phone charger, etc. It helps a lot just to have a designated place to put things. I also get him all set up and then tell him he has 5 minutes to make any requests and then I am going to work down the hall for an hour, or take a nap, or whatever I need to do. And then I do it. He has learned not to call me unless the house is on fire but I carry my cell phone just in case.Being loving but firm has worked to prevent him from acting like a spoiled child. In the beginning if he wouldn't listen or cooperate I just walked away. I realized he wouldn't die if He didn't get everything he wanted right when he wanted it! So now I have time to myself, I am able to be more loving because I am not so stressed.Next, I have boundaries. I don't do things that he can do for himself. It's okay to help when necessary but I have made it clear that I am going to encourage him to be self-sufficient as much as he is able.Also, I take an anti-depressant and see my doctor quarterly. For long-term caregiving that has been essential for me, and my female doctor has been a lot of help because her father was disabled so she saw what her mother had to do. One wise thing she told me was, "You won't have peace until you accept it...and accepting that this is where you are right now doesn't mean you have to like it!"

      Reply

      • February 6, 2019 at 10:40 pm | Posted by Christine Mecham

        I never thought about accepting until you wrote this. I am so stressed as caretaker of my husband. I do everything and always want to run away from it all. Maybe if I accept my duties at this time, I can get through my days easier. I feel my life is in hold, almost feels like my life is wasted, and over. I need support groups thanks!

        Reply

        • April 24, 2019 at 12:18 pm | Posted by Stephanie

          I feel I am walking in your shoes. If there are any support groups I could reach out to , that would be great. I live inJacksonville Fl. Thank you to anyone in advance

          Reply

    • March 25, 2019 at 8:30 pm | Posted by Sandy

      Praying for you. My husband broke his ankle in December. He has surgery on his anckle and Achilles at the same time. I’ve waited on him from December to March and I finally said It’s time you start getting up and try the stairs to the kitchen. He sleeps in his recliner and shows no sign of wanting to return to our bedroom. I still work so I get flextime in order to drive him to his doctor appointments. This means getting up at 3 & 3:30 am in order to get my hours in and work done to get him to his appointments. I’m burnt out. How do you stay positive? I’m starting to not have much feelings for him. At this point I’m glad I have a job to go to for 8 hrs a day. I just turned 63 and I feel so wore out. Thanks for listening. Any advise is helpful.

      Reply

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