I Am in Dementia Prison with My Mom

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story by caregiver, Janet Barberg

My husband and I have been caring for my 92 year old mother for over five years. It has taken me almost that long to even  admit and verbalize that my mother has dementia. I always would just say that she was forgetful and then as time went on I added the word confused. In the last year she has also become anxious and panicky when we leave her home alone for a short period of time. Tonight, after I ran an errand for less than two hours, I returned to a frantic mother. She exclaimed, "I can never be left home alone again!" I feel the prison walls going up and I am in dementia prison with my mom.

I feel anger as she acts like my three year old granddaughter. Why is she so fearful? My mother was a teacher, a feisty, adventuresome, brave woman. I grieve over the loss of who she was. I finally decided to reach out for a support system so here it is in the wee hours of the morning and I googled for help and God led me to this site.

Since Mom has macular degeneration, using written notes is no longer feasible as her eyesight has deteriorated the last few years. She asks the same questions over and over and over again.  For instance, if a new great-grandchild is born, she will ask many times a day for several days the name of the grandchild.  Every day she will obsess over several questions. I get weary of answering the same question and I get an edge to my voice and I know that hurts Mom's feelings. I feel guilty for the anger I feel inside and the impatience I have towards her.

My husband is very kind, patient and loving towards her and he is understanding of me, also. What a saint God has blessed me with for a mate.

I do get time off. One sister takes care of Mom's medical and financial matters.  The other sister takes care of Mom when I need a break.  She lives several hours away and will keep her for several days at her house.  My oldest brother takes Mom to her church on Sundays and has dinner with her afterwards. My other two brothers who live farther away call her regularly.  My daughter, who is a nurse and her two teen-age sons also help when I have to be gone.  We are blessed to have so many family members helping. But the day to day care is still about seventy-five percent mine and twenty-five percent my dear husband's. I started this at about 2:30 a.m. and it is now past 4 a.m. but it has been helpful for me to write my story.

 

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