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Tips to Help Spouses Survive 4 Stressful Caregiving Situations

Stressful-Situation 4

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March 31, 2016

A fraction of a second is all the time it takes for a tiny blood vessel in the brain to burst and cause a hemorrhagic stroke. But the consequences of that event can ripple far beyond the person who experienced it. In the blink of an eye, the person’s marital relationship can be changed from a more-or-less equal partnership into an unbalanced dynamic that causes stress in the marriage.

The caregiving conversation often revolves around adult children caring for aging relatives, but spouses get thrust into the caregiving role, too, due to a sudden illness like a stroke or a chronic condition like Parkinson’s disease. Spousal caregivers might face situations other caregivers do not, such as needing to renegotiate marital roles or deal with in-law issues.

Let’s look at some common scenarios spousal caregivers say they face—and some practical tips for coping with them.

Spousal Criticism

After Patricia’s husband had a stroke, he was no longer able to drive. As she commented in a CaregiverStress.com reader forum , “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.”

It can be hard not to take criticism personally, especially when it’s coming from your spouse. You might feel like a failure, like you can’t do anything right in your spouse’s eyes anymore.

When a spouse loses the ability to perform functions he used to do, he might feel like a failure, too. Sometimes that inability to contribute in the ways he used to could manifest as criticism of what you’re doing.

That doesn’t make incessant criticism right, but at least it might help you understand where your spouse is coming from.

To cope with unrelenting criticism, try renegotiating your marital roles:

  • Find things your spouse can still do, and then give him control over them. Just because your husband can’t drive, for example, it doesn’t necessarily mean he can’t pay the bills.
  • If your spouse can no longer perform tasks that require physical activity, find ways for her to contribute to strategy. For instance, if your wife cannot cook dinner anymore, let her plan menus instead.

If you can renegotiate your mutual roles so each spouse feels he or she is making a contribution to the household, you might find the criticism goes away.

In-Law Issues

Sometimes when a person becomes disabled due to illness or injury, his or her family members believe the decision-making process should include them. As a spouse, you might have to navigate some tricky political waters. Theresa found herself in this situation, commenting, “Trying to keep the peace with his siblings leaves me feeling hurt that I now have a new role in the family, almost like I'm an enemy.”

Some things to keep in mind:

  • As the spouse, you generally have every right to make decisions on behalf of your husband or wife regardless of whether or not your in-laws agree with what you’re doing.
  • Make sure you and your spouse have valid wills, living wills and power of attorney documents so there’s no question who has the legal right to make decisions on you and your spouse’s behalf should either of you become incapacitated.
  • Instead of dismissing your in-laws’ concerns out-of-hand, try to listen and understand their perspective. Perhaps a valid message is getting lost due to a clumsy delivery.
  • Try to find ways to invite your in-laws’ participation in the caregiving process so they feel they’re contributing to the situation in a positive way.

Juggling a Full-Time Job with Caregiving

It’s a myth, of course, that disability only affects seniors. When a disabling condition strikes a young person, the effects on the spousal caregiver can be devastating. As Laura said, “My husband is disabled, but not a senior, he's only 48! This is not what either of us thought our marriage would be like! 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 forties.”

Tips to cope:

  • Turn to community resources for help. Contact your local Area Agency on Aging. Despite its name, your AAOA group likely will have lists of resources you can tap for respite care, home care and more, no matter your age.
  • Look to your faith community. It can be an excellent source of not only moral support but practical help as well. You might find many people willing to provide respite care, home maintenance and other types of assistance.

Loneliness

Your spouse is the one person you share everything with. If his medical condition now makes emotional intimacy impossible, you may begin to feel very alone in your marriage and your life.

Loneliness can put you at risk for medical ailments of your own. It’s imperative you eat well, exercise and continue to maintain a social life in order to stay healthy. Here’s how:

  • Keep healthful food in the house. Try to plan meals and snacks in advance so you don’t resort to grabbing junk food because it’s the only thing available.
  • If you can’t leave the house to take a walk or hit the gym, invest in one good piece of home workout equipment like a treadmill. This will enable you to reap the stress-busting rewards of exercise without the anxiety of wondering if your spouse is all right on her own while you’re away from the house.
  • Plan monthly or quarterly get-togethers with your friends for dining, shopping, card games or another fun activity. Arrange for a family member to take care of your spouse for the time you’ll be gone or obtain professional respite care  by a trained CAREGiverSM from Home Instead Senior Care®.
  • Participate in online communities, such as the Caregiver Stress Relief community on Facebook. Communing with others in a virtual setting can bolster your spirit, and you don’t have to leave home to do it.

All too often, the caregiving conversation revolves around children and grandchildren caring for aging relatives. But spouses provide the bulk of care when their husband or wife becomes ill or disabled at any age, and they face special challenges in providing care. If you can renegotiate your spousal relationship, maintain good relations with the in-laws and take time for self-care, you may find your caregiving life more rewarding than you’d imagined it could be.

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Thoughts and stories from others
  1. April 21, 2016 at 10:08 am | Posted by C

    I don't know why this site appeared in my emails today, but perhaps it was meant to be. The comments contained have helped me realize that my feelings are normal, and perhaps I am not a bad person for feeling resentment when it seems the only conversation with my husband sometimes is him telling/asking me to do something else for him. He is 80, now on dialysis 3 times a week, I am 63. We have been married for 11 years, and had a wonderful life and relationship, until the illnesses joined the marriage. I haven't felt like a "wife" for a very long time. He has been in declining health for the last 3 years. Not only do I realize I'm not alone, but better off than others. We thought he was going to die the beginning of March when his kidneys completely failed, however, he wasn't ready to go and opted to try the dialysis. I can't say this has resulted in a very good quality of life, and he is thinking of maybe coming off dialysis in the next month or so. My Mother has been incapacitated since December a state away, and I have also felt resentment in not being able to help my brother with her care. I have felt trapped. I have received minimal assistance from his grown children, and am grateful for whatever time they can give, to enable me to go see my Mom for a few days, given their busy lives and children. Can't say I'm looking forward to my 80's given what I've witnessed. It's true aging is certainly not for sissies.

    Reply

  2. April 13, 2016 at 7:28 pm | Posted by Carol Woke Up

    Sometimes the disability can cause anger issues and violence from the patient after years of mild outbursts written off as part of the disease. However one final act of bashing my head with his head in front of our teenagers caused me to say enough. Now I am merely a lifeline to help to keep him from being homeless, but cannot allow him in the home any longer. Years of chronic illness in a younger person can cause gripping depression, anger, resentment and refusal of receiving treatment. There are so many other issues like mixing illness with children in the home who become mini caregivers, and more on redefining marriages. In the last 10 years it was so hard to be attracted to my patient spouse -think trying to kiss someone with a bad flu. Please continue to branch out to other types of caregivers, we need your community.

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  3. April 13, 2016 at 11:23 am | Posted by Roberta

    One issue not mentioned here, and often left out of all caregiver discussions, is financial protection for caregiving spouses. I retired early 5 years ago from a successful career in the clinical laboratory in order to care for my husband who had had a series of strokes. No affordable resources for in-home care or adult daycare seemed to be available at the time. He had always been a difficult person, but things worsened as his condition deteriorated. Eventually he moved to a VA contracted nursing home, which was great. He got round the clock care, and I didn't have to be the "bad guy" for asking him to comply with his medical provider's recommendations. Unfortunately, as his mental condition worsened, he began to feel that he should have control of his finances, even though he had never had good financial skills and had exhibited episodes of uncontrolled spending prior to his nursing home admission. I found myself in a potential situation of having NO income to pay any of my household expenses, if his efforts had been successful. The nursing home staff (although they verbally agreed that he was not competent to do so) felt obligated to assist him in contacting our financial institution, including coaching him as to what to say. What I found out while investigating my options was that in our state, unless a person cannot name their financial assets or identify close friends or family, s/he will probably be considered competent to handle his/her own affairs. When he passed away 3 months ago, I was awaiting the outcome of a VA assessment regarding his competence to handle his financial affairs. Had they found him competent (I strongly suspect that they would NOT have), I believe that my life would have involved at least one, if not more, unpleasant court battles, either regarding divorce and/or establishing his need for a conservator. I think the crystallizing moment for me was when I was discussing my concerns at a care plan meeting, and the nursing homes social services person said, "He doesn't owe you anything."

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  4. April 11, 2016 at 11:27 am | Posted by Carolyn Hoover

    It is so important to find a resource for both the caregiver and the spouse or relative that way it would not be hard on anyone if possible.

    Reply

  5. April 11, 2016 at 10:48 am | Posted by Jacqueline Shipman

    Caregiving for a spouse on a daily basis I'm sure has to be challenging to say the least . It takes a lot of love and patience.

    Reply

  6. April 11, 2016 at 9:59 am | Posted by JANE

    I can relate what you are saying. My husband had a stroke a the age of 59 which was a devastating blow to us all. He regained a lot of functionality but 2 years ago dementia set in with Parkinson's from the stroke. Working full time it got to the point that I just couldn't give him what he needed and I financially was not able to quit my job so he wanted to go to a VA home. The closest one available is 6 hours away. I go every other weekend to see him and feel guilty because I know he's being taken care of but not like I would do the job. You have to do what is good for you so that you can survive. When you get depressed as my daughters tell me, "Mom there's medicine for that." I broke down in front of them twice when they were at the house helping me with things. Thankfully I do have them for support, if I need something usually one of them are available to help, ride with me to see him, etc. Just remember you have to take care of yourself in order to take care of him.

    Reply

  7. April 10, 2016 at 1:42 pm | Posted by Missy Lowery

    Thank you for the above article and for the comments left by others. My husband has had physical limitations and short-term memory problems since age 35, now soon-to-be 48, and is having more and more problems, even having trouble controlling his hands most of the time now. We do not have children (human ones anyway – only canine kids!), and we have no relatives close by. Unfortunately, some churches fail to reach out to their own members who do not get to church services. As someone else commented here: Out of sight, out of mind. Granted, they are human, too. [We have been waiting 2 years now for the men at the church I am still a member of to build us ramps to make it easier for him to get out into our yard and to the truck when needed.] Two things that make our situation even worse are I have my own health issues and he lost his faith. That is why I have such a strong desire to minister to/support people who are not able to make it to church services, knowing what would have been helpful to us and still would--and my parents before my father passed away: people with physical/mobility problems (like my husband), their spouses/caregivers who have so much to do and often not enough stamina (like myself), and people who work on Sunday. I pray more people realize the unseen needs around them and will help at least in the smallest way. I also pray for you all who are going through what we are. I feel led to share here what God laid on my heart many years ago and why I try not to say “hang in there”, visualizing the cat hanging from a branch: We Christians do not have to “hang in there”; we can stand – and stand TALL – because we are on Solid Ground, Jesus Christ.

    Reply

    • April 26, 2016 at 6:24 pm | Posted by Anne

      God bless you Missy. I have found that the Lord truly provides. Others can mean well, but out only the Lord can give us what only He can give. I will certainly pray for you.

      Reply

  8. April 9, 2016 at 2:22 pm | Posted by Mel Tukey

    I am an 82-year old professional caregiver for 7.5 years. My 86-year-old wife had a mild stroke in 2013. Finding your site is another helper on the journey. Thank you.

    Reply

  9. April 8, 2016 at 4:30 pm | Posted by Ellie Mowery

    I am 16 years younger than my husband of 34 years. He will be 90 in July. He has had a series of set-backs recently that has landed him in a rehab facility following surgery to fix a broken trochanter. The real "sticky" problem is his two sons from a previous marriage. They have decided that I am not a suitable wife for their father (Their mother had divorced him 9 years before I met him.) and don't make good decisions in his care. I still work several part-time jobs, but they feel that I should be with him all of the time. I am home taking care of our house, yard, pets, and myself occasionally, which is apparently not to their liking. I have no apologies to make and have told them so. I welcome their suggestions, but I have POA and feel that he has lived as long as he has because of me, not in spite of me. Has anyone else had such a dilemma?

    Reply

    • April 25, 2016 at 7:48 pm | Posted by Caroline Cabral

      Ellie,You are doing the right thing and you are doing it for him your husband.If his sons are so concerned they should offer to help and take care of him.{I think they would not}So if they give u anymore flack about it tell them they can always do it.I don't think they will talk about it again.Some ppl just want to control someone else's life.You are doing great.God Bless!

      Reply

  10. April 8, 2016 at 1:26 pm | Posted by Judy Krassner

    Helpful to have more info about spouse care

    Reply

  11. April 8, 2016 at 1:08 pm | Posted by Rosaline

    You don't address anything about deafness. My husband is almost totally deaf. He has tried every type hearing aid and 3 surgeries to where there isn't much help. If we were younger, I would suggest "sign language", but it's too late for that. The best thing is, no matter how upset I get, or whatever, he NEVER says an unkind word. He always stays calm, which I am thankful for. He lost his balance several years ago, so uses a walker all the time. Now i am noticing dementia, which is anyther problem. We are in our 90's and I do all that I ever did,driving, shopping, cooking,laundry etc.

    Reply

  12. April 8, 2016 at 11:19 am | Posted by Peggy Budd

    I am the fairly able-bodied wife caring for my husband who's had a severe stroke...we are over 75....I have a helper twice/week. Our grown children are not available much, physically or emotionally. They do not realize the frustration and lonliness in my life while caring for their father. Daughter lives far off so we are out of sight, out of mind...she could afford to travel and come help a bit. Son is near by and available when asked but never volunteers so I feel guilty asking...and I don't ask often. I find I am angry over our children's lack of support. IS this TYPICAL today? What to do? PS: we have had lots of support from friends but after time, even that wears away....Do you hear this from others???

    Reply

    • April 8, 2016 at 8:33 pm | Posted by Moester

      I am in the same boat, but my husband has Alzheimer's. I do everything and it gets very stressful. He wants to sleep most of the time and complains he is cold all the time. He is in his 70's and me in my 60's. I know this is due to the fact he is not moving and gets no circulation. Most of my relatives do not know how to deal with him and won't come around even my asking doesn't work. I also have a special needs daughter, but she tries her best but does not understand what is happening to her dad. My son helps quite a bit as I know his job is very important, he calls and checks on me all the time. If I need him he is right there. I attend Alzheimers care giver support meetings which help. I also take him twice a month to a group called "The Gathering", it is volunteer workers. But while I drop him off I am doing things I can't do while he is around, as he yells at me all the time. I have learned to tune these things out and I try to make sure I have quiet time to relax and do some imaging techniques. Deep breathing helps a lot. I am also looking at getting in home care, but there are so many out there, picking one is very hard. Good luck, you are not alone.

      Reply

    • April 10, 2016 at 10:26 pm | Posted by Judy

      Yes I have found it difficult at times. No help from 2 grown sons at all. We realize they have jobs and families, but an offer of help goes a long way. Feeling alone and lost.

      Reply

    • April 13, 2016 at 6:23 am | Posted by Morris

      Very familiar with your frustration and disappointment... While I cannot offer any solutions to your all too common experience I can say that you are not alone in your aloneness. I'm there too! There is some disconnect that happens to the people you thought would be there for you most. Like your children. They just don't get it. The strain of 24/7 caregiving touches every aspect of my life and after almost three years since my wife's Stage IV cancer diagnosis, there is little left of the lives we once had. Everything is gone and we are both completely spent, physically, emotionally, financially. .. Sometimes we wonder why we keep fighting this disease. There is not much left for either of us to live for. Certainly not for the relationships with our kids who have all but abandoned us because it's just too hard for them. I'm tired and angry and broke and tomorrow I have to get up and make stuff happen even though it's really hard, as I'm sure you will too, because you must.

      Reply

  13. April 8, 2016 at 10:56 am | Posted by Cherie

    We have been married 45 years and now my husband has had a sudden brain damage, which leads him to forget within minutes where we are or what we were doing or at times what we were discussing. His attention span is zero these days. He has had to give up driving which is a real manhood blow. We sold his vehicle because every time he went into the garage there was the reminder. Also why carry insurance, maintenance and repair on a vehicle that will never be used again. Of course every time I start up my vehicle, he wants to go too. So there went my personal outings. I used to enjoy having some time to myself, now that's gone also. I have decided to get a domestic to do some of the household chores and while she is here I can take an hour or so and escape from the constant waiting on him. He falls frequently these days so we are having to reverse some of the door openings so if he falls against the door, at least I can get into that room and help him. He really should be in a care facility, but I know he will feel abandoned by me if we do that. I certainly don't want to hurt him like that. Fortunately I have always handled the bill paying and budgeting so that is not a problem. However, if something happens to me that will fall upon one of our children, because he is no longer capable of sitting down and going over statements and writing checks. He would soon be in a house that has no water or electricity or taxes being paid on. Discuss the possibilities with your spouse so you both will know the plan if one of you fails. Its very important.

    Reply

  14. April 8, 2016 at 9:50 am | Posted by Larry

    I find that taking my wife to just play cards with her sister, and mother once a week helps a lot. I also have found that it has helped ME as well, and still spend quality time with her and her family, in a relaxed atmosphere.

    Reply

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