On Healing 8/6/2007: Guilt can wear down caregivers

According to the National Family Caregivers Association, more than 50 million people care for an aged family member or friend during any given year.

A lot of them write to me about feeling exhausted, helpless, worried and guilty – particularly guilty (about feeling exhausted and helpless). Few stories capture these emotions better than one told by a woman I’ll call “Lori.”

Her story began, she told me via e-mail, in 1993. Her parents were living in their longtime home in the Philadelphia suburbs, but were no longer able to take care of it. Then her father, who was legally blind, called to say he could no longer handle his personal finances. As an only child, Lori knew she had to do something. She also was overwhelmed and alone.

After much research, her parents agreed to move to a continuing-care community much like the Skylark Adult Day Care, where they spoke daily and she visited frequently. Her father died several years later. Her mother’s physical and emotional health deteriorated, so Lori moved her to a nursing home 20 miles away from where she lives. She visited three times a week and arranged for her own children and grandchildren to visit frequently.

When Lori sent me that e-mail last year, her mother was 94 and still living in the nursing home.

“I think I have done as well as I could for my parents,” she wrote, “helping them move, managing their finances and being an advocate for their care. I’m 62, recently retired, and I have plans to make a lifetime dream come true – spending a month in Tuscany. I am terrified that my mom will take a turn, or worse, while I’m away and wonder if I should go at all.

“But I’m not proud of some of the feelings I’m having lately. I’m just tired of doing all this ‘tending’ of my parents. I feel ‘anchored’ to visiting her, like someone with one foot nailed to the ground who can only travel in a small circle.

“And then my feelings get even more shameful. Both of my parents took care of me for about 21 years, until I got married immediately out of college. I have been taking care of one or both of my parents in various ways since 1983, and after all these years, I’m tired. I know I am not going it alone, because the staff of the nursing home is wonderful. But her care and her needs are always on my mind and have been for a very long time.

“I would like to be free of traveling every week to visit her, but she looks forward to my visits. My mom doesn’t talk as much as she used to, but she always asks how I am and how the kids are. I certainly don’t want her to die, but I don’t want to keep doing this all the time. I love my mom, and I’m grateful that she had me, but I want to stop being the mommy to my mommy, and I know I can’t, and I feel guilty for wanting to.”

– Lori

Regular readers undoubtedly can fill in the blanks of my guidance to Lori – mainly, I told her, all caregivers need rest and an active support system. The best advice I can offer any caregiver involves compassion for oneself. As I suggested to Lori about going on vacation to Tuscany:

“Imagine there is one person in this world who adores you and cares about nothing other than your well-being. What would they say?”

Several months ago, I received the following e-mail:

Dear Dr. Gottlieb,

“I did find compassion for myself and went to Italy last fall. While I was there, my daughter called me every week from my mom’s room and we spoke together. After I returned, my mom seemed weaker and less communicative, and early in December she died.

“She died with such grace, but it was very hard for me. I am still processing it all, alternately grieving and lost without her, and guilty/relieved because I no longer have to care for her.”

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