Dementia Caretakers Experience
Thursday, July 9th radio program.
Dear Dr. Laura, I was on hold the other day (but lost the connection) because I wanted to share my three-year experience as a caregiver to my husband of 27 years. He was 88 when he passed away in hospice two weeks ago, and I am 74.
At age 85, he was diagnosed with Parkinsonism features and Lewy body dementia. I met him in 1997 when I was 46, and after seven years of listening to your talk show throughout the 1990s, I recognized him as the man who checked all the boxes of a good husband—and a genuinely good person to boot. We married and had a wonderful life together, including many sailing and boating adventures.
He never acknowledged that he had dementia. He would never say, “I don’t know,” but his behaviors gave him away, and that is how I knew where he was in the progression of the disease. He trusted me completely, sometimes calling me “Mother,” sometimes “Wife,” sometimes by my name, and other times simply guessing. He would do anything I asked him to do.
When he transitioned to special underwear (pull-up diapers), he asked whether I was going to wash them and use them again. When I tore the sides to remove them, he asked if I was going to sew them back together, never realizing how funny that sounded.
He was always kind and appreciative of everything I did while caring for him. He was never mean or abusive, and sadly, I learned through a Facebook support group that this is not always the case. For that, I was deeply thankful.
I chose to live in his world. I never questioned the confabulated stories he told. Apparently, he had an entire life I knew nothing about. I simply accepted where he was and treated many of those moments as entertainment.
So, here are the lessons and pieces of advice I would share: treat them kindly; ask rather than command; remember that they do not remember that they don’t remember; don’t take their behavior personally (with the exception of emotional or physical abuse), including forgotten birthdays and anniversaries; exercise regularly—both of you; bring in caregivers to help when possible; and stay connected to friends and the people who support you. They will be there when your partner is gone.
It was a wild ride, and I am glad it is over, but I truly loved him and was blessed to be with him until the end.
“Just J”
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