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Caregiving: When others don't "get it"

Caregivers in our community regularly encounter friends, family and strangers who don't understand what caregiving means or how much work it involves. We spoke to caregivers on our Caregiver Email Group to ask about their experiences dealing with people who don't "get it" and their advice for other caregivers.

The Challenges: What Caregivers Encounter

"Some people think I am treating him like a kid when he is having a difficult time [with his PH]," shares Bonnie, who cares for her adult son. "People do not understand why I need to stay at the hospital when my son is admitted, especially if it is not the hospital where his PH specialist practices."

Liszet, who cares for her mother, shares a similar experience: "I get constant questioning about why I have to be home a lot. [My friends] think it is my unwillingness to socialize or that my parents are keeping me from having an independent life. … Even when I explain my mother's health condition, they still question my motives for staying by her side when there are professional caregivers or home nurses with her."

Outsiders' confusion is often exacerbated by the ups and downs of PH. Paula, who cares for her husband, shares, "Sometimes people think that I do too much for him. They cannot understand that he can do things one day, then not be able to do the same thing the next day … [My husband] puts his best face on when we are in public. It is hard for people to understand that he is not able to function at that level full-time."

On the flip side, some caregivers feel that they are given far too much responsibility for their loved one's continued health. Paula says, "Doctors tend to rely on my records and my concerns to guide them. Sometimes I just don't have the energy to rise to the occasion. One dentist called me a saint. Another provider called me an angel. I am a tired person who is not always sure she can give all that is needed. I have been told he would not be alive if it were not for me. To that I say, 'That is too much responsibility. Does that mean that when he dies, it will be because I did something wrong?'"

Additional Challenges: What Caregivers Feel

In addition to the challenges caregivers encounter from people who don't "get it," several caregivers told us that they often feel at less than their best or unable to keep up with everyday activities - and that they can't explain this to family and friends who don't appreciate how intense and consuming caregiving can be. "I think the exhaustion that can go with caregiving is hard to explain," Paula shares. "Sometimes I am just too tired to do things or go places or even clean the house and do the laundry. I fall behind in everything. I just explain to people that it has been a hard week, and the housecleaning has been left undone."

Another challenge that many caregivers expressed was how to explain caregiving in such a way that doesn't make their loved one feel debilitated. Liszet tells us, "I constantly feel pressured to explain the situation. But even then, I feel guilty for airing my mother's health struggle." Paula echoes, "The only way to explain caregiving is to do it in terms that make my husband feel uncomfortable. It is hard for people to need care."

Advice from Caregivers to Caregivers

Caregivers told us that there ARE people out there who "get it" - and those people are other caregivers. "It is nearly impossible to explain caregiving in a way people can understand. I think we do best when we connect with other caregivers. If you don't have friends who can understand, or even if you do, consider joining a support group. If there is not a PH support group, join another kind. If you have even one or two people who understand, that can get you through a lot," says Paula.

As for those around you who don't understand? "They won't really understand unless they have been in that situation. If they don't understand, I can't waste energy trying to make them," says Bonnie. Instead, she continues, "Find support, physically and mentally, from others who do understand."

But there will be people out there who genuinely want to 'get it.' With those who are making the effort to understand, "Be patient," counsels Tammy, who cares for her husband. "They are learning along with you."

Looking for ways to connect with other caregivers? Check out www.PHAssociation.org/Caregivers for opportunities!

By Michal (Lynn) Rachlin
Former PHA Patient & Caregiver Services Coordinator

This article first appeared in Pathlight Fall 2014.

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