You lose a loved one, then they die.

When I was a sophomore in high school we were expected to do a certain amount of volunteer hours for the year. So I reached out to a local nursing home and offered to help. They said just stopping by and spending time with the dementia patients would be wonderful. Upon getting there I was so impressed. The place was clean, friendly, and filled with safe activities. The staff were all wonderful. The place was clearly well run and didn’t need me, but hey I came to spend time with the patients so why not? So I sat down and started talking with a women. I introduced myself about 5 times, repeated the same answers to the same questions in small circles of dialog, and was surprised by just how comfortable I was talking to her despite my introverted tendencies. I came back the next day and started spending time with the people in the activity room when a nurse pointed out one gentleman who used to be a musician for a living. So he and I sat at the piano and I tried to remember tunes from childhood piano lessons and then muscle memory took over from his dementia eaten brain and he played something lovely for me. As another women began to sing I saw a few more swaying or dancing to the music. This became a regular thing. Bringing music, playing music, singing and dancing. It seemed to brighten their day, and I know it did mine. Staff always joined in when possible which was lovely to see. When my volunteer hours were up I kept going. For about two years I would go about once a month to put on a little “swing dance” night with the help of a couple nurses. It always seemed to go over well.

I remember the first time I sat near a family while they were visiting a loved one. As they answered the same circle of questions I did. As they had to explain who they were to someone they’ve known all their life. I could hear two things in their voices, love and grief. The person they knew was gone, she was different. They loved her and visited her and spent time with her, but it wasn’t her anymore and it broke their hearts. I saw this more times than I care to remember. See dementia doesn’t just steal short term memory, it eats away at the whole brain. The personality of the person is affected as much as anything else. The person you knew is gone almost entirely, but still there. That’s a hard way to lose someone, and a difficult way to grieve.

Twelve years ago I went to visit my grandmother. To anyone on the outside she would have seemed perfectly normal, but I saw something else. There were slight snags in short term memory that weren’t there the last time I saw her, but no more than the average person her age (or the average me at any age without coffee). Except she had always had a better memory than the average person. And what she forgot would be unusual, like how to change a basic setting on a tv she’d owned for 5 years. But it was more than that. She cooked differently. The women who has had the same cooking habits since before my dad was born had suddenly shifted them. Her intense focus on her daily hobbies wasn’t there, and she struggle to fill her day. She’d never had that problem before. I knew within an hour she was in the early stages of dementia. I called my father that night and told him what I noticed and to please take grandma to her doctor. Go with her. And then I curled up in bed and cried. I knew what would happen, I would lose her slowly, bit by bit. I would grieve for her for years while she still lived and I still saw her.

A few days ago my grandmother died. Twelve years of watching her slip away. She is now at peace. I have grieved for the last 3 years when she hit a stage of dementia that made her unrecognizable. But still I loved her, still do. So instead of the continued sorrow, it is time to celebrate her life.

She lived a long life filled with a great deal of joy. She helped keep her parents and siblings healthy through the Great Depression while still knowing how to enjoy life despite how little she had. She raised two children, a son and daughter, and had a wonderful and loving husband for many years. She had a great career that she worked hard at and loved, but somehow always knew how to balance work and life despite the tough hours. When she retired she was never bored. She spent time with her kids and grandkids, her and her husband took in foster children for a while, she kept her hobbies up. When her husband passed she spent her free time teaching sewing and knitting classes at the local community center.

She practiced what she preached more than anyone I’ve ever known. In fact I think she practiced far more than ever preached, simply living the example without the need to say a word. She lived a life of balance and stability, she took care of her health, she had fun, she practiced things she wanted to learn and taught things she already knew. I learned a lot from my grandmother, probably more than I ever realized. The things I struggle with I still try to pull from her example, and I always will. I haven’t lost her completely despite the disease that stole her mind and then body. I will pass what I can to my kids so they at least will get some of the blessings I got from her. I hope that will be enough to honor the amazing women that she was.

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