man-pushing-wife-in-wheelchair-through-gardenThis is the second part of an art..." /> man-pushing-wife-in-wheelchair-through-gardenThis is the second part of an art..." />

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

man-pushing-wife-in-wheelchair-through-gardenThis is the second part of an article about things your spousal caregiver wants you to know but may not tell you. I outlined and discussed the first two items in Part I.

1. “I need a break from routine care, but my spouse/partner wants only me to do it.”

2. “I feel guilty/selfish if I take time for myself (or my partner doesn’t want me to).”

And now for the third, fourth, and fifth items:

3. “I fear what might happen to you if I don’t take better care of myself.”

Most spousal caregivers are keenly aware that if something happens to them, the prognosis for their loved one who has a disability will be negatively impacted—often in catastrophic ways. This fear is usually legitimate, and may affect choices and behaviors about everything from how much lifting is safe for him/her to do to the more mundane, such as what time to go to bed.

There are many reasons we encourage caregivers to take care of themselves, and this is one of them. Without spouses/partners and other family members, many of our loved ones would be unable to live at home. To complicate things further, finding an assisted-living home or nursing home for people who are younger with disabilities is very difficult. Paying for that type of care is nearly impossible for many. It is critical that everyone involved in the family take his or her responsibilities seriously—and that includes the responsibility to care for oneself.

Caregivers: Find a way to get plenty of rest, exercise and good nutrition. Learn to manage your stress and set priorities; do whatever you can to lessen this possibility. Those who rely on caregivers: Encourage them to take care of their bodies, minds, and spirits.

4. “I often feel anger and resentment about how this disease (or injury) has changed our lives.”

A recurring theme in the support group I facilitate for caregivers is how to manage anger and resentment. To find the answer to that question, perhaps we must dig a little deeper. It is possible that anger is hiding other emotions—the ones that cause us to feel more vulnerable—such as fear, shame, and grief.

Caregivers (and others): Consider this when you feel anger. We are capable of experiencing more than one emotion simultaneously. When you have an automatic angry response, ask yourself questions such as:

  • What else am I feeling?
  • Why do I feel angry about this?
  • What else is going on with me?
  • Is my anger hiding other feelings?
  • What am I afraid of?

Uncovering the emotions that anger belies is more productive, though, admittedly, feeling and expressing anger is more comfortable. Look for more. It is fine to own your anger, but be honest with yourself and your loved ones—what else is going on?

So, yes, your spousal caregiver may want you to know that she/he feels anger or resentment at times. It is also very important for both of you to realize that is normal. Many times, caregivers compare how the disease or injury affects them to how it affects you (the person with the disability). In comparison, it may seem that the caregiver has little to complain about. After all, he or she is not the one who actually lives in the body and mind that has been injured or diseased.

However, the fact he or she is not affected as badly does not mean that the caregiver is not entitled to whatever feelings he or she may experience. Both of your lives have probably changed dramatically; feeling anger or resentment about that would be healthy.

What is most important is that everyone realizes the anger and other feelings should be directed at the disease or injury, not the other person. If, however, you find yourself questioning the audacity of your loved one to complain or resent how living with a disability has affected his or her life, please remember that everyone is changed and influenced when this happens.

Allow caregivers their own feelings of loss, fear, anger, or resentment. Don’t, however, take responsibility for their feelings. It is not your fault—their lives and their feelings are their responsibilities. Make it safe to talk about those feelings openly, and listen without judgment. Offer empathy, and try not to compare.

5. “Sometimes I want to just give up, admit defeat, run away.”

Again, this is normal. Some days, when things are not going well or you are tired, it can be tempting to simply give up. This is another situation where caregivers often express guilt. Dare they even complain of feeling overwhelmed when their problems pale in comparison to the person with the disability? This is not a case of either/or. Not one, but both (all) of you have the right to feel overwhelmed and burned out at times. It is perfectly legitimate and does not require that one feel more or less overwhelmed than the other.

Feeling overwhelmed to any degree is permissible—it is not a contest. Playing the martyr is unhealthy and leads to resentment. Speak up about how you are feeling. You don’t have to talk to your loved one about it; find a support group, counselor, or trusted friend who will listen without judgment. Keeping those feelings bottled up inside is simply not good for you emotionally or physically.

I think it is important to remember that caregivers and family members choose every day to be involved in the care they provide. While the caregiver may not believe there is a choice, in reality it is a choice made day by day, minute by minute. The guilt associated with walking away from the caregiving role is usually more uncomfortable than the reality of staying in that role; this is often why caregivers continue to provide care. To expect them to do it without having any regrets, getting tired, and/or feeling overwhelmed at times is simply not realistic.

Again, try to remember it is not you they feel like giving up on, but the situation may seem unbearable at times. When this happens, give them time to work through their emotions. Often, time alone to rest and recover their strength is the remedy. Finding a way to give caregivers routine time away from the responsibility of caregiving is preventative. I highly recommended time away to avoid burnout and lessen the risk of becoming overwhelmed.

Obviously, caregiving is too much for some people and they choose to leave. I can only assume that decision is very difficult and not made easily. In reality, those who are unable to be caregivers without taking their feelings of resentment out on their loved ones are probably making the right choice—as difficult as that may be to accept. It is providing care beyond the point that one is able to manage his or her own needs and emotions that may result in abuse and/or neglect. Obviously, it is not good for anyone to live in a situation where they are being abused or neglected routinely.

© 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
  • colleen m

    July 27th, 2013 at 4:35 AM

    There is so much guilt that can be wrapped up in this role that many times it is difficult to separate the guilt from the anger.
    You are mad that this disease is stealing your loved one, but this is when it starts to look like you are angry at the family member that you are caring for.
    It typically isn’t that at all, this is someone whom you love more than anything but yu are tired and stressed and overworked and many times those frustrations present as being angry with them.
    This is where it really comes into play just how important it is to take a little time for yourself and do something that you like to do too.
    Your whole life cannot constantly focus on being a caregiver, everyone needs a break from that from time to time. And you have to make that a priority.

  • Vonna

    July 27th, 2013 at 7:38 AM

    If you have never been in this situation yourself then you don’t know how horribly difficult it is to even think of doing anything for yourself while your loved one is hurting and you know that there isn’t anything that you can do to stop that.

  • HN

    July 27th, 2013 at 11:55 PM

    I use a wheelchair to remain mobile after an accident years ago.The family is very supportive and especially the wife.I can do most things independently but there always a few things where help is needed.I feel guilty about making my loved ones do the work for me.I encourage the wife to take a short vacation every now and then with her friends.And that certainly helps her as I have observed.Doing things day in and day out and things that remind you about a horrific event that change your family and your spousal relationship is very hard.And you really need to do something to let the steam off every now and then.

  • Leila J

    July 29th, 2013 at 4:32 AM

    I recognize that there will be times when being a spousal caregive cannot be avoided. There may not be enough money to hire someone from the outside or you may not feel comfortable turning over that kind of care to someone else. But if at all possible, you need to at least make a little time for you in every day. You can’t possibly be your very best for the person for whom you are trying to care if you don’t carve out a little space for you every day. I think that underneath all of the pain your husband or wife would understand and they would know that if they were in the same position you would want the same for them.


    July 29th, 2013 at 7:45 PM


  • Mick Staley

    July 30th, 2013 at 5:57 AM

    I agree with the first 2 points in the article. Guilt definitely sets in if you try make time for yourself.

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