Polio Place

Post-Polio Health, Volume 27, Number 3, Fall 2011.

Dr. Stephanie T. Machell is a psychologist in independent practice in the Greater Boston area and consultant to the International Rehabilitation Center for Polio, Spaulding-Framingham Outpatient Center, Framingham, Massachusetts. Her father is a polio survivor.

QUESTION: I am a caregiver of a polio survivor. At times I feel taken for granted. How can I handle this situation without hurting my partner?

Response from Stephanie T. Machell, PsyD:

Caregivers, like parents and spouses and others we love and depend on, are often taken for granted. No matter how much someone appreciates your care, in the daily routine that caregiving becomes, the person may forget the importance of expressing appreciation and gratitude.

It’s hard to be a caregiver, especially for a spouse or partner. It changes the relationship and can create inequalities and resentments. There is ambivalence for both partners about their new roles. The one receiving the care may be appreciative of what is given but fear becoming a burden and resent not being able to do what he or she once did. The one providing the care may be happy to help but resent the extra work and loss of freedom. Both may long for the carefree earlier days of the relationship.

It’s especially hard for polio survivors to receive care. Being taken care of may bring up memories of the original polio, which may include negative experiences of caregivers who were anything but caring. Or it may bring up feelings of helplessness and dependence that can be hard to handle for someone who has always believed it was essential to be fully in charge and independent. Expressing appreciation for care, even when it’s felt, might make the polio survivor feel more vulnerable.

Can you talk with your partner about how you feel? Couples often fail to discuss such sensitive issues until they come up in indirect ways or in angry and hurtful words – or until the caregiver becomes ill and unable to carry on. Such a serious and important discussion would be best held at a calm and neutral time. You might start by asking your partner how he or she feels about the way things are going in your relationship. Or you could talk first about what you value about being able to care for your partner, or ask what it’s like to receive care. You could ask your partner how he or she feels about what you are doing and if there is anything he or she especially likes or dislikes.

This may be a chance for your partner to express gratitude or appreciation for all you do. If not, you can let your partner know how you feel and see how he or she responds. If talking about it doesn’t work, or if your partner can’t or won’t do so, there may be less direct ways he or she expresses appreciation that you can observe.

For instance, he or she might look more comfortable or smile at you when you have done something helpful. You might also notice the positive effects of what you do for your partner, like having more energy.

Feeling taken for granted could also be a sign that you need a break. It’s important to care for yourself so that you can care for your partner. Find a way to take time out. If no family or friends can help, there are resources available for respite care. Use them and take the time to do something that will replenish you. You will return refreshed and revived and better able to care for your partner.