Understanding the emotional aspects of disability and caregiving

When you or a loved one becomes ill or has a disability, you may end up riding on a roller coaster of demands and decisions, particularly if you or a family member will be providing the caregiving. Which doctors, which treatments, home or institutional care, arranging physical therapy and other types of interventions, monitoring and paying medical bills, changing diets, learning new life skills – the list goes on and on.

Amid all of these challenges, it is all too easy for the emotional aspects of disability and caregiving to be ignored. Yet these emotional factors may be even more important than practical considerations to the well-being of the caregiver and care receiver.

This article focuses first on things the caregiver should know about the care receiver’s emotional needs, and then on things the care receiver should know about the caregiver’s emotional needs.

The emotional needs of people receiving care

The most important thing to remember is that all care receivers are individuals and have unique needs. Therefore, the following information is for general guidance: Every person and situation is different.

  • When people become disabled or discover they have a serious illness, they often go through a grieving period (or repeated grieving periods) for their lost abilities – and their lost dreams. It is not helpful to tell them, "But you should be grateful you’re still alive," or "You have to have a positive attitude." The grieving process is healthy and important.
  • If the care receiver makes a decision the caregiver doesn’t agree with, the caregiver should not immediately think or say, "Oh, you made a bad decision because you’re ill." After all, the caregiver and care receiver may not have agreed all the time before the illness/disability began.
  • The care receiver’s dignity as a human being must be maintained. This could mean anything from closing the door during bathroom visits to making sure that visitors speak directly to the care receiver, rather than speaking to the caregiver as if the care receiver isn’t there.
  • The care receiver’s method of coping must be honored, whether it includes not wanting to talk about the illness/disability, making jokes about the illness/disability, focusing on the illness/disability, or any combination thereof.
  • It is important to monitor the care receiver for depression. All too often, a caregiver may think, "If it were me, I’d certainly be depressed," and let it go at that. But whereas sadness is an appropriate emotion, depression is a treatable medical condition. Signs of depression include low energy, irritability, long-term sadness, lack of interest in activities that were once enjoyed, disrupted eating, poor sleeping, and withdrawal.
  • As with all relationships, good communication is key. If the care receiver feels a need to talk about his or her emotions and situation, the caregiver can simply listen and acknowledge what the care receiver says.
  • If the care receiver has an illness/disability with "invisible" symptoms such as fatigue or pain, it is helpful for the caregiver and other family members to learn as much as possible about the condition so that they don’t diminish or deny the care receiver’s reality.
  • Care receivers who are dying may need to talk at length about their feelings about their impending death. If the caregiver cannot handle this conversation, it is important to arrange for the care receiver to have access to another loved one, therapist, or trusted person who can.
  • If the caregiver is the care receiver’s spouse or other family member, it is very important that they spend quality time together that is not centered on caregiving. They can make dates, even if it’s only to watch TV or chat together holding hands.

The emotional needs of people giving care

Caregivers too are individuals with unique needs. Therefore, the following information is again only for general guidance.

  • When caregivers know and love the care receiver, they could grieve for the care receiver’s losses – and for their own. In a sense, the illness/disability happens to the caregiver too.
  • Caregivers may feel that they should be patient and giving at all times, but of course no one can achieve this. The care receiver can help by supporting the caregiver in taking time for him- or herself and by discussing the pressures the caregiver is under.
  • Caregivers may become overwhelmed by or even resentful of the time and energy that caregiving takes out of their lives, particularly if the care receiver’s condition grows worse. Here, again, communication is the key. If caregiving becomes too much, the caregiver and care receiver should discuss alternative caregiving options.
  • The caregiver may feel guilty about having a life outside of caregiving – or may resent the role as caregiver and not being able to have a life outside – or about missing the spouse, partner, friend, or parent how he or she used to be. The care receiver can help by listening to the caregiver’s concerns or by suggesting that the caregiver see a good friend, therapist, or support group.

While taking on the care of a loved one can be an overwhelming challenge, there are many positive aspects. With good communication, the relationship between the caregiver and the care receiver can grow in new and surprising ways. The caregiver can have the satisfaction of being there for a cherished loved one. And many families find that, after the initial shock of the illness/disability, they can be as happy as they ever were.

Sources

“Caregiving Support & Help: Tips for Making Family Caregiving Easier.” HelpGuide.org, accessed March 4, 2014.
http://www.helpguide.org/elder/caring_for_caregivers.htm

“What It Takes to Be a Caregiver.” American Cancer Society, last revised March 23, 2012, accessed March 4, 2014.
http://www.cancer.org/acs/groups/cid/documents/webcontent/003199-pdf.pdf

“Nearing the End of Life.” American Cancer Society, last revised February 6, 2014, accessed March 4, 2014.
http://www.cancer.org/acs/groups/cid/documents/webcontent/002899-pdf.pdf

This material is intended for informational purposes only and should not be construed as medical advice or used in place of consulting a licensed medical professional. You should consult with your doctor to determine what is right for you.

GCHHRZQES
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