Love and a caregiver’s journey
June 22, 2016 § 4 Comments
We are 72 and have been married for ten years. I have know my husband since 2002, 14 years so far. I was always fiercely independent and after a brief marriage in my 20s, I never gave marriage much thought while enjoying a wonderful career, 33 years in New York and 22 years in Los Angeles. He is the love of my life. And he has dementia.
Slowly my sweet husband is declining into darkness, a place where there is only uncertainty, indecision and confusion. This blog will record my struggle and our adventures, some humorous, to comfort and provide a safe place for my husband to live and simultaneously (the real challenge), express my spirit creatively.
In 2011, my husband finally retired after 37 years of government work. The daily commute from Virginia into DC was exhausting with little time to rest. He was determined to work past 67, his Dad’s retirement age. His six month performance reviews were trending downward towards average from exceptional. The dementia was already in progress, we know this in hindsight.
Diagnosed two years later with moderate stage dementia in 2013 and no ability to do arithmetic or critical thinking. Whoosh, gone. Just like that.
I figure that we are five years into a debilitating decline. I have hardly done any artwork since the diagnosis.
I am the sole caregiver and I am paying for his care with all the love in my heart. This is my choice and he could not ask because to inquire one needs rational thinking and he has none.
At the semimonthly caregivers group today I learned the difference between loving someone with dementia or a terminal illness. The seriously ill can tell you what hurts and when one drug or treatment makes them feel better than another. They have some days that are better than others. I ask the same questions when my husband comes home from day care as I did when it was work such as how was your day, what was lunch or snacks, did you like the activities and then I listen closely as he tries to share a few words so I can string them together to form a thought. I’m not good at this and unlike charades, there is little body language to offer clues. We hug, tells me he loves me and asks what’s to eat.
Love this and love that you are letting us peek into your everyday lives❤️
Thanks Susie! Appreciate your comment.
I am so sorry to read that you are having this experience. I can’t imagine being a care-giver the way that you are. I can have an understanding of your loss and pain because my mother (my lifelong best friend) is suffering from dementia as well. Although she knows who I am and I can still feel the love that she has for me, our relationship is nothing like it was for so long. I miss her, even when she is in the room with me. My heart goes out to you and your husband.
thanks lynn. so sorry to read about your Mom. i touch his hand and i know by his touch that he’s there. dementia is the only disease that your loved one is fully present and long gone. i started making what i am going through public because his 4 adult children have stopped making contact.