Wednesday, August 14, 2019

Caregiver Guilt: "When Will You Be Back?"

Recently I was talking with a friend about the challenges of family caregiving.  She regularly drives many miles to help her mother, who has dementia and is living in another city in her own home.  My friend tried inviting her mother to share the daughter's home.  To put it mildly, that plan did not work. 

Her mother wanted to go back to her own home.  Paid in-home caregivers are often essential components of any such plan, and my friend, as an only child, is the person "on call" whenever one of them cancels at the last minute, as well as visiting regularly to plan meals, do shopping, take her mother on outings and the many loving tasks that tend to fall to family members.   

My friend says that one of the hardest parts of each visit is that her mother always asks, "when will you be back?"  The mother probably isn't intending to put pressure on her daughter, but the pressure is still there, accompanied by the daughter's thought, "Am I doing enough? -- Should I quit my job and move here to be closer to my mother?"  

My sister felt this kind of pressure with our mother, even though she spent almost every evening with her, especially during her last year.  My sister would finish her long day as a primary school administrator and drive 45 minutes in rush hour traffic to be with Mom at dinner and to visit with her while she watched some television, helping her get ready for bed.  And my mother would ask ,"Will I see you tomorrow?"  "Of course,"  was the usual answer.   I know my sister felt guilt, even though she was doing everything imaginable to ease the strain for our mother, as her daily life became complicated by deepening dementia.

My father had slightly different questions for me as the "out-of-state" daughter.   As soon as I arrived from my latest flight on good ol' Southwest Airlines plus a taxi cab drive, he wanted to know,  "When are you leaving?"  I would chuckle and say in mock protest, "I just got here; you can't get rid of me yet." (Of course, with dementia, such questions are often asked not just once, but are repeated multiple times in the course of the same hour.) Eventually I realized that what Dad enjoyed the most was the break in the routine from being trapped at home with dementia, as he would usually ride along with whomever was taking me back to the airport.   He liked rides in general, but he especially appreciated a car trip with a purpose, a purpose he still understood.  

My mother had her own variation for me.  She would be startled when she realized I was leaving at the end of a visit, and she would ask with a worried frown, "Will you be back in time for Christmas?" Whether it was the coldest day in January or the hottest summer day in Phoenix she would ask me about my Christmas plans.  But, that's not  a bad "default" setting for someone with dementia, is it? 

I was always able to say, with sincerity, that yes, I would be back in plenty of time for Christmas. 

https://lawprofessors.typepad.com/elder_law/2019/08/caregiver-guilt-when-will-you-be-back.html

Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care | Permalink

Comments

sad article, if you can call it that.
It is always difficult.

Posted by: Ben Sherman | Aug 19, 2019 10:21:07 AM

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