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Providing Care and Support for a Spouse

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"…I love thee with the breath, smiles, tears, of all my life…" Elizabeth Barrett Browning, How do I love thee?

The care of a spouse surely has its rewards. One advantage is that the partner who is need of care or assistance is already comfortable with the caregiver. You know each other's idiosyncrasies, habits and preferences. You also know each other intimately so it eases any embarrassment when dealing with private needs. You also know the home environment and what areas might be in question when it comes to safety issues.

On the down side, however, the caregiving spouse may feel odd about asking others for much needed help, fearing their loved one will be embarrassed or uncomfortable if anyone else provides care or knows that they need this care.

Spousal caregivers often feel so much stress since they also live with the person they are caring for, which doesn't provide for any breaks physically or emotionally. "It is important that the spouse continue to do some of the activities she or he likes, whether it is singing in the church choir or going to the monthly book club meeting, so that he or she continues to socialize outside of the home and give themselves a breather," advises Richard Schulz, Ph.D., caregiver stress expert at the University of Pittsburgh.

"It is important that, as a caregiver of a spouse, you don't assume you can handle everything," said Dr. Schulz. "In a study in the Journal of the American Medical Association, we found that spousal caregivers who experienced mental or emotional strain were more likely to die sooner than non-caregivers. Sometimes even the most resourceful person needs to ask for help from other family members or outside professionals - the hard part is knowing when to ask."

In order to help you understand when the stress might be getting to be too much for you, we've created a list of signs that spousal caregiving may be becoming too risky for you.

In the end, it is important that as a caregiver, you maintain your own health, because if you aren't well, you will be less able to help your spouse.

Last revised: April 11, 2010

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Thoughts and stories from others
  1. April 8, 2016 at 5:05 pm | Posted by John Witmer

    I relate to many of the comments made here. My wife and I have been married 62 years. We had 4 children, of which 3 are still living. My was crippled in a fall just a month before our 50th anniversary. Despite having to use a wheelchair we got along all right for several years, with my attempting the cooking. We even took 2 cruises. Gradually, it became impossible to deal with getting her to doctor's appointments, etc. so we moved to an independent apartment in a retirement community. Two years ago she was diagnosed with Alzheimer's disease, but she was still able to go to the dining room with me and I was able to handle most of her needs. Our sons, who live over 1000 miles away, suggested during visits, that we hire a nurses aide to help her with bathing 3 times a week. This has worked well for over a year. After a fall in January this year, a thorough review by doctors and our health care assistants, we moved her to the skilled nursing section of our retirement facility. Surprisingly, my tensions have not lessened, but increased. I really can't explain it, because my physical demands are much reduced. The emotional strains continue to be very difficult to overcome, even though I visit her every day for an hour or two. The nurses are well trained and very attentive, but it is a real challenge.

    Reply

  2. April 8, 2016 at 10:41 am | Posted by Anne Maysak

    I kept a bright green card near the dash board of my car that said in big letters "LET IT GO". It helped calm me when being criticized. I also posted one in my home.

    Reply

  3. November 27, 2015 at 10:59 pm | Posted by Patricia Cook

    My husband and I have been married for 5 years and together for 11 years. This year he has had 2 "minor" strokes and recently, surgery having his thyroid removed. The last stroke affected his eyesight and now he is 50% blind. He can still do many things but most of the time he just sits around. He also has trouble walking. I am now the full time driver. He is very critical of my driving and everything I do. It is very frustrating and at times I don't know what to do. My husband is 76 and I am 68. I just need someone to talk to and a lot of support.

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  4. March 2, 2014 at 11:57 pm | Posted by Theresa

    My husband & I have been married for 26 years & have 5 children. A year and a half ago he suffered a massive stroke at the age of 48. He now is unable to speak or move his body other Han blinking his eyes & giving "thumbs up" or "down". I am his full time caregiver in addition to tryi g to keep our family together & moving forward. The fatigue can be overwhelming and the responsibilities are never ending. Trying to keep the peace with his siblings leaves me feeling hurt that I now have a new roll in the family; almost like I'm an enemy. Some days I want to crawl into the closet & hide from all of it! Maybe venting to complete strangers will help!

    Reply

  5. February 13, 2014 at 6:45 pm | Posted by Linda Brandon

    My husband & I have been married 47 years . I praise God for him as he is the love of my life. He has had Alzheimers for almost 9 years. The stress is wearing me down as I have very little help. I have recently tried to get help a couple of days a week. Thought it was working out and then he decided he didn't want any one in his house. Our children are upset also and we are at a loss as to what to do to get him to let others in to help. Any ideas would be greatly appreciated.

    Reply

    • April 11, 2016 at 8:09 am | Posted by Judy Scott

      Linda, I have the same problem with my husband who throws friends and caregivers out of the house. He senses they are there to watch him. I have hired a woman who I tell him my husband she is the cleaning lady and the man who comes sits in another room when I am out of the house. I find hiring a woman helps and telling my husband she is here to help me with chores. Ive been told by other spouses that the men feel threaten that a male caregiver is trying to take over their domain and maybe their wife! Try a women and have her act as she's in the house for another reason. I also don't let my husband know she's coming before she arrives. It's also my biggest challenge. Good luck.

      Reply

    • February 7, 2018 at 1:56 pm | Posted by Joyce Ragan

      Despite what he wants you MUST get some help for yourself. Ask the doctor about a calming medication you could give him prior to when your help arrives. Early on, my husband's paranoia was much worse and he would accuse me of all kinds of foul things when I would go out. He also would get extremely angry when we would go to visit our daughter. I asked about this and he prescription ed something only for when he is like that. I know it's the dementia talking but it still hurts so much. I know you can relate.

      Reply

  6. January 21, 2014 at 12:06 am | Posted by Troy

    My wife and I have been married for 13 years, together for 17. During the summer of 2012, we were separated and were working on a divorce. In October 2012, she was hit head on by a habitual drunk driver. She was in a coma for 6 weeks. Now a year and few months later she is still wheelchair bound.It is stressful not for me to take care of her, but because her 79 year old father is her guardian. He is the type of man who one cannot talk too, because he makes assumptions, jumps to conclusions, and is extremely negative. Also, I have no income as I cannot work because I take care of my wife 24/7.I am fearful that due to my father-in-law's lack of understanding, if I go back to work, he will put her in a nursing home. This in turn will destroy my wife's spirit.I'd like to hear from someone who has experienced such a situation as I am in.

    Reply

  7. November 10, 2013 at 7:08 pm | Posted by claire t

    I have been married to my husband for 2 1/2 years. He has number of things wrong with him. All we do is go to dr. Appointments and to hospitals. He has just been diagnosed with clinical depression and anxiety. He sleeps 22 hours a day. I have tried to contimue on with life but, once I came home and he was unconcious on the floor. I went to spend a few days with my sister who is going blind and a half hour after I called to tell him I was coming home, he called me back to tell me he was calling 911 for himself. Drove for four hours in tears. And two weeks ago, I went out with friends and when I came home he told me he didn't want to live any more. I drove him immediately to the local mental health facility. So how do I go out for more than shopping, knowing I will come home to some emergency?

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  8. May 6, 2013 at 11:19 pm | Posted by angieMay

    I am no longer myself, my life changed July 10th 2004, I am stressed with all this pressure, and I haven't a soul to share it with !

    Reply

    • February 13, 2014 at 6:59 pm | Posted by Linda

      This is the first time I have been on this site. I can empathize with you as I am where you were. I started a support group just so I would have someone to talk to that understands. It helps, but life is hard. If it wasn't for God I could'nt do this.

      Reply

  9. November 29, 2012 at 8:59 pm | Posted by sonona grams

    my husband was just diagnosed with sever arthides from the waist down and its only saposed to get worse hes only 58! and this is some good info but it doesn't tell me where to start or how to begin applying to become a spoudly care give is there any one who can help me start please

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  10. November 29, 2012 at 8:47 pm | Posted by sonona grams

    i love all the information this give but it desn't tell me how to start or apply to become a spouse care giver my husband was just diagnosed with sever arthrides from the waist down and is onl expected to get worse can any one help me figure out where to start pleas!!!!!

    Reply

    • April 8, 2016 at 3:14 pm | Posted by petra

      Do you want to become a caregiver or need one (ex. stavrose, a home instead in your area (this is in mass. )which hires caregivers , but may give possible referrals or other info you might need ). Ask your husbands Dr. for referrals, home visiting nurses, support group for arthritis sufferers go and they may give referral or pt you in a direction for answers. look on line for local adult care giving services or adult care centers. If a veteran see your local VA can be helpful. Not sure if this helps, good luck. P.

      Reply

  11. September 26, 2012 at 4:31 am | Posted by Odessa Goodman

    My husband is diagnosed with dimentia and it appears to be getting worse. I run a business and have an active life; however, I cannot get his sister to assist me when I need to go out of town for a few days...she says she cannot do it. I don't know who else I can turn to for help and I've had to cancel several dates because of lack of support. I would like to keep him at home as long as possible because he can still take care of his personal hygiene, but he is not allowed to cook, which is another problem.

    Reply

  12. August 16, 2012 at 11:27 am | Posted by Laura

    My husband is disabled, but not a senior, he's only 48! We were married only six months before the hemifacial spasms began, and 3 months later he began to have seizures. This is not what either of thought our marriage would be like! My husband waited his whole life to find someone to fall in love with, to care for, to spend his the rest of his life with, and now, he can't work and spends his days in his lounge chair, trying to remember what happened before the last seizure. I work full time and he has a home health aide, but as soon as I get home, I'm working again. I haven't found any support resources for a couple like us, in our fourties. Can you help?

    Reply

    • May 6, 2013 at 11:12 pm | Posted by angieMay

      angie I totally hear you, my husband had a brain anurizeum or however you spell it ! and he was 48 , we were married in 1989 and my life fell through when that happened, I stayed with him through it all, slept in a chair beside him every day, he ended up not only with that but he had a stroke while in his coma !! Today he is another person, he seems lost, he doesn't do the things he should do and blames everyone for it including me! It hurts, doctors tell him what he needs to do for a more productive life but he refuses to do those things, he feels I am his wife and I should always do what he wants, when I refuse he goes ballistic, I am stressed to the max, my daughter is in the air force and just informed me she may be deployed again, to a dangerous area, I am holding onto life but loosing it slowly, I just broke my tail bone, yes and I still have to take care of my husband first because I don't have insurance like he does, SUCKS to be me.. Just venting and hoping someone else hears me!!

      Reply

      • September 13, 2013 at 7:50 am | Posted by sandra

        Wow guys. I'm sorry to hear all the stress you guys are going through but just know you are not alone. My husband and I have been married for a little over 2 years and I just found out that he has aids and he is now going through all his symptoms. Dementia hep b and load of other things. God had mercy on me and I didn't catch the disease but I will have to always do these tests just to make sure. Through all of this I still have to take care of him because of the promise that I made to God. He might be coming home soon and I am looking for information on how to become his caregiver.

        Reply

  13. November 13, 2010 at 9:26 pm | Posted by Dolly Schuyten

    My elderly husband has Alzheimer disease but he is still gentle and good nature. Although we have help during the day, I am the only one to take care of him at night. We are now living in a non-English speaking country where I have competent help but it's difficult for me to get help for night duty due to the language barriers. My husband wakes up at night asking for milk/water constantly or wants to talk to me (repeating himself endlessly). I have not had a good night's sleep for a couple of years now. Any suggestions?

    Reply

  14. September 16, 2010 at 3:01 pm | Posted by maria

    That's well and good to list and list ways the spousal caregiver is stressed out. But what to do? After the exercise and attempts to continue one's own meetings/interests, how about suggestions on tearing oneself away from the misery, surviving his rages, coping with the loneliness. I've read lots of books of others' experiences, which did help some. The Caregiver's Tale is my experience and I must say writing it all out was a big step up. But it's still an enormous struggle with few solutions.

    Reply

    • February 7, 2018 at 2:13 pm | Posted by Joyce Ragan

      I am with you on the downward spiral that we find ourselves in. Some days I am so bored and tired I could scream If I only h as d someone to have a n intelligent conversation with. So many resources list " the signs of caregiver burn out " . But what do we do about it. I read the Bible and know that Christ is walking this journey with me. If he weren't I'd be in really bad shape .. My daughter's work full time and have their own problems and I am sure they get tired of being my sounding board. I'm glad I found this website so I can hear of others situations. I guess misery loves company!

      Reply

  15. September 3, 2010 at 5:49 pm | Posted by CHARLIE LOVELL

    this is my first introduction to the tips and the articles you've provided. They are absolutely great. I welcome them into our home.

    Reply

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