My name is Lori and I am a daughter of dementia. My Dad was diagnosed 13 years ago at the age of 78. He’s 91 now, still living at home with my Mom who is 88, his caregiver. Their story, my story, is like that of so many in the world who suffer from dementia with little knowledge of how to manage, find resources and cope with the intense physical and mental demands of this disease.
I remember when I learned about Dad’s diagnosis. I had three young children, was on the verge of divorce and while I was concerned, I wasn’t too worried because Dad seemed “fine” to me. He had fallen while leaving the insurance agent’s office a year before this and had hit his head on the sidewalk. No one thought anything of it since he was a big, strong farmer who had made a living off the land, worked hard, played hard and lived fully. Mom had noticed some changes in him prior to his fall, that she had not shared with us kids yet.
Dementia was one of those words that didn’t mean much to me, just that it happened to old people. My Grandpa had “hardening of the arteries” and saw things that were not there, talked about far fetched tales, but that had been 20 years prior and I didn’t know at the time that hardening of the arteries was what they called dementia at the time. It was scary to visit Grandma and Grandpa, but we all did the best we could. I was in college so I wasn’t around it too much and honestly wasn’t sure what he suffered from.
There was one instance where I had gone to see my Grandpa in the hospital before he passed. He would not eat the ice chips from the nurses. I said “let me try.” I tried and he looked at me with cold eyes and wouldn’t open his mouth. He didn’t know me. I said “Grandpa, it’s me, Lori, and you need to eat these ice chips, please”. He seemed to hear me and suddenly his bright blue eyes softened and he sort of smiled at me and he took the ice chips. I’ll never forget that moment! He knew ME. Not long after that, Grandpa passed away. We’ll probably talk about Grandpa in future blogs!
My Grandpa was not the only person in my family who had suffered from some sort of dementia. My Aunt from Florida was one of the classiest ladies I ever knew. She was dressed to the nines, hair and makeup perfect, smart as a whip and the life of the party. She and my uncle traveled the country in retirement in an Airstream and would come visit us at the farm every summer and park that beautiful silver home on wheels in our back driveway. It shined and I shined when they visited. We would do word searches, read books and she would tell stories of their travels and the people they met. They volunteered for the Texas Rangers training camp games and she would tell so many awesome tales and was a big fan of baseball. She was so full of life. My uncle passed away when I was a teenager, but she went on living a very active life in Florida, volunteering, socializing and enjoying her life.
Every summer my family hosts a very big family reunion around the 4th of July. It is a huge affair that lasts a full weekend. One year in particular everyone was so excited that my Aunt was able to attend. She came in a beautiful royal blue silk dress and her hair was perfect. She was smiling and laughing with everyone. Something was different about her, though. She knew her kids and her siblings (there were 8 of them), but when I went to talk to her, it was like she didn’t know me. She laughed it off when I had to remind her who I was, but I was devastated she didn’t know me. We talked for a bit and she seemed to remember me and ask me about school and boyfriends, but I’m not sure I ever recovered from that. I asked my Mom what happened to her and she said that my Aunt was “slipping” a lot these days. A year after that, she was in a nursing home and passed away.
My Uncle was also in a nursing home in his 80’s. He had been an Air Force pilot with many medals. Married, with no kids, he and my Aunt loved all of us nieces and nephews like we were theirs. He told stories of valiant rescues and supply drops and lived his life on Air Force bases his entire life. He liked scotch and poker and lived a good life. He and my Aunt had two homes, one in Arizona and one in my hometown in rural Ohio. They spent summers in my hometown so we spent time together at family cookouts and visits to see them. My Aunt and he moved into assisted living since he had backed over my Aunt by mistake with his van a he drove everywhere. Yes, he backed over her and I think broke her shoulder. No one thought he should be driving after that. I can remember discussions between Dad and my Uncle about driving, but my Uncle wouldn’t give up the keys since his wife had never learned to drive. He drove around town and people talked about how bad he was.
My uncle also in his advanced age and stage of dementia said inappropriate things often. I can remember my parents telling me they would pick them up to go for Sunday dinner out somewhere and they were worried about what he might say to the waitress since he was known for his inappropriate comments. Almost every time I saw him, he would ask me if I knew where my kids came from. I would always say yes I do, but he would just laugh and everyone knew he was thinking inappropriate thoughts and my parents would cringe. So would I.
I never went to see him in the nursing home and I regret that. My Dad and Uncle visited every week after my aunt passed away. They brought him watered down scotch which he never knew was watered down. They tried to stop bringing him scotch and I remember saying to them “he’s 88, let him have scotch”. He was suffering from his own form of dementia and the scotch did not make things any better. Alcohol and dementia are not necessarily compatible, but I didn’t know that at the time. I just wanted to protect his dignity. I think he was 94 when he passed and he was honored with a military funeral and gun salute. He lived a long time, however, about the last ten he had succumbed to dementia.
I heard once long ago that if you’ve met one person with dementia, you’ve met one person with dementia. The journey is different for every person with dementia (PWD). We’ll talk more about the types of dementia in future blogs. Over the years, I’ve loved, befriended, met, witnessed many people with a diagnosis of dementia. It is true that no journey is the same.
My journey, your journey and everyone’s journey will be different. I’ve learned so much and been able to do so little. This blog will be here for those that seek an honest look at dementia, my experience, peppered in with stories of loved ones, acquaintances and experiences I’ve had in both my personal and professional life.
Professionally, I spent four years at the Alzheimer’s Association where I learned more than I ever dreamed of in classes and real life support groups, consulting and personal growth and understanding of this disease. I recently became a Certified Dementia Practitioner and a Certified Alzheimer’s Disease and Dementia Care Trainer. Sharing what I learned is important to me and learning from others’ experiences is my passion. The journey does not have to be alone. Together is better.
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