A departure from the norm – on Caregiving and being a Caregiver

Originally, today I was going to post an apology and let you all know I would be taking a week or two hiatus to prepare for the final adoption review of the house. In other words, cleaning.

This morning my husband sent me a link to a news story on yahoo I feel the need to share.

So, first, some background:

At 75 years old, my mother stunned everyone that she had kept her mind so in tact. She managed her own investments with her financial advisor, read several books a month, kept up with news and politics, was an active member of several social circles and taught Sunday School at her church. She was phenomenal. When she broke her hip and had to go to physical rehabilitation, everyone again was so proud at how hard she worked and how dedicated she was to her physical therapy. I spoke with her every morning on my way to work.

Then came the time for her recouperation. We decided she would fly here and stay with me and my husband for six weeks. I enrolled her in an elderly day care program, I arranged outpatient physical therapy. She came, and we had a wonderful week together.

One weekend while my husband was away with his family, my mother had an old-fashing mother-daughter weekend. On Sunday we went shopping. We  bought clothes, we had lunch, we shared dessert. That night I helped her to bed and she shared her memories of her mother when she was a little girl herself.

The next morning I went to get her up to take her to get some blood-work done. When she seemed out of it, I thought her blood sugar was low. I thought she was tired when she said some things in the morning that didn’t make sense and slurred a little. I took her to the day program and she seemed fine. There was no weakness in her limbs, no drooping of the lips, face or eyelids. She chatted. Then we realized, she didn’t know where she was. Then she said her lips were numb.

I’ll spare you the nightmare that followed in the emergency room where nothing could be done, the following weeks and months in the hospitals with indifferent and condescending doctors who gave Mom throw-away diagnoses and little hope.

Since that morning, July 2 2007, I have been a caregiver for someone with dementia and two forms of amnesia. My mother lost short-term and long-term memory. This was on top of the prior mobility problems that require her to use a wheelchair outside the home, and require physical assistance in the home. Every day we need to remind her who in her family – including husband, parents, siblings – have passed away. On good days, she knows where the bathroom is. On good days, she knows I’m her daughter most of the time. On bad days, we need to remind her that she lives with us and isn’t going home. As she gets older, it’s harder and harder for her to follow a conversation. Then there’s the part when I look at her, desperately needing my mother, my best friend, my rock to be there, and knowing deep down some of the best parts of her are gone.

As I think I’ve mentioned before, I believe my role as a caregiver played a major role in my being fired from my last job. I could work from home if the plumber was coming, but not if my mother’s home health aide called in sick.

In the past few weeks, as my husband and I finally have the hope of realizing the interrupted dream of children, I’ve faced a recurring theme in my role as a caregiver: that to so many people around me, they begin to see that not as my primary role, but my only role in life. From doctors to friends to sometimes even part of my support system. Many of our so-called friends have questioned the wisdom of taking on children with my mother here. What they don’t know is how cheerful, affectionate, good-natured, grateful and funny my mother still is. Many times it’s a challenge to answer the same questions every half hour, but honestly, I know “healthy” people who are less loving and generous of heart than my mother still is.

So my husband sent me this article. It begins about a man who had an undiagnosed brain tumor. Knowing how terrified I now am of undiagnosed brain damage, strokes, brain injuries, etc., I wondered what I’d done to deserve this special form of emotional torture from the hubby. Then I kept reading, and I realized that the link came from the kindest part of my husband’s heart.

I want to share this with you. For those of you who know caregivers, please take it to heart. For those of you who are caregivers, well, may God be with us every day, forgiving us for the days we slip, and helping us the days we stand strong.


 I’ll be back when we’ve got the bedrooms cleaned up.


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