Living with a Living with a

5 Things Your Spousal Caregiver Wants You to Know, Part I

man-helping-wife-walker-0620136Living with a disability can be exhausting and frustrating, and the experience may give way to feelings of dependency and vulnerability. If you live with your family, it is important to remember that they are all living with the disability, and they are coping with many changes, sacrifices, and uncomfortable feelings as a result.

Those who take on the role of providing routine care for their beloved partners often find that the line between caregiver and spouse becomes blurred. In essence, the more care-giving a partner or spouse provides, the harder it becomes to maintain the role of lover, friend, and partner.

Here are the top five concerns I hear from caregivers, most of which are things they don’t know how to talk to their loved ones about.

1. “I need a break from routine care, but my spouse/partner only wants me to do it.”
People who require routine physical care (nonmedical) such as bathing, help with incontinence or bowel problems, dressing, feeding, and so on are truly dependent on others for their day-to-day functioning. Some of these needs can be met by home care aides who come to your house 1-2 times a day for an hour or so to help. While it may be uncomfortable to turn your body over to strangers for routine care, it may give your significant other a much needed break — both physically and emotionally.

Perhaps having your spouse or partner present the first couple of times you work with someone new would help ease the transition. He or she can be there for support and ensure that you are being taken care of properly. That may ease some of your partner’s guilt, as well. Consider these people as medical providers, as you would your doctor or nurse. If you get someone you are uncomfortable with, call the agency and request a different person. Tell them why your experience was unpleasant, so they can address it with the staff member.

Some insurance will pay for these services. The services are not terribly expensive. Some families have aides come 1-2 times a week to help with washing hair and things that are especially difficult. Call your insurance company or local home care agencies for details.

2. “I feel guilty or selfish if I take time for myself.” (Or, “my partner doesn’t want me to.”)
This feeling is almost universal, but I find about 1 in 10 is able to manage good self-care without the guilt. We stress several things so that caregivers may prevent burnout:

  • Take time to do things for yourself.
  • Take a break from providing care.
  • Let others help you.
  • Ask for help.
  • Set limits.
  • Exercise.
  • Get plenty of rest.
  • Learn to let go.

You can imagine that trying to do what is best to protect their own health and well-being is much more difficult if their beloved doesn’t support these healthy behaviors.

Try to remember that your spouse or partner has to balance his or her own needs with yours. Give this person permission to take time for self-care. Help brainstorm ideas for making this a regular practice. Develop a list of people who can be with you or be on call should you need something while your loved one is practicing good self-care. Give your partner the gift of freedom from guilt by joining in his or her self-care efforts. This is also in your best interests, as it will protect your loved one and your relationship.

There are no easy or correct answers to these concerns, and everyone has to figure this out based on personal situations. It is important to know that even saying these things out loud makes most spousal caregivers feel horrible. They should have a place to talk freely about such issues, as they also make sacrifices. Their feelings are legitimate. Encourage your beloved to attend a local or online caregiver support group. Well Spouse Association ( has a listing of both.

In Part 2 we will look at three other concerns and recommendations.

© Copyright 2013 All rights reserved. Permission to publish granted by LuAnn Pierce, LCSW

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

  • Leave a Comment
  • evie

    June 22nd, 2013 at 4:50 AM

    I know that there are many relationships where one spouse ends up having to take care of the other. But is this really the healthiest thing for a couple? I mean, I know that I would do this for my husband if he neede me to and he would do the same for me. But this kind of relationship would totally change the entire dynamic of the marriage and could really lead to serious trouble. I would never want to hinder his dreams, but maybe I would be that kind of person who became so dependent on him that I wouldn’t let others do for me. Look at the time and energy that this would drain from him. I think that more couples in these situations should honestly look to see if there is another way that it could be handled because sometimes I think that it is just too much for any spouse to be expected to take on this role.

  • marcus

    June 23rd, 2013 at 9:59 AM

    Why should you feel guilty for doing a little something for yourself every now and then? We all need time for doing the things that we love just to keep us sane.

  • Rosalind

    June 24th, 2013 at 4:32 AM

    Just because the caregiver wants you to know these things does not mean that everyone will be open to listen.
    People who are so dependent upon someone else often become kind of selfish, they want them to dedicate all of their time to them.
    I know that they probably son’t start out that way but the more they come to rely on them to be there then the stronger that the desire to have them there all of the time becomes.
    And when the caregiver is relatively healthy and the spouse, there is probably going to be a whole lot of guilt and they will be made to feel that this is what they have to do all the time.
    And then they forget to take care of themselves.

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