Guest Post: Joy in the Most Unexpected Places…

Kay's Parents (courtesy of Kay)

Kay lives in Austin, Texas, and blogs at My Random Acts of Reading. After reading her comments here about her experience with her parents’ dementia, I asked whether she would like to write a guest post. Here is her telling and touching contribution. Thank you, Kay!

My name is Kay and I am the daughter of two people who both suffered from Alzheimer’s and dementia before they died. Tinky asked me if I would share some thoughts here on Pulling Taffy about my parents and the journey I completed with them over the last four years. I told her in a comment of my experience with the dark clouds that dementia brings to an individual and the family that cares for them. I also mentioned that if you look hard enough, even the darkest, most forbidding clouds have a silver lining – joy in the most unexpected places.

My parents were committed to each other and were married almost 63 years before my father died in 2008. My Dad was diagnosed with Alzheimer’s in about 2003, but we had known that he was having problems long before the official word. He did not believe the doctor and fought many of our decisions and efforts almost to the end. Dad was a career state policeman and spent many years fighting organized crime. When he declined into the past, his memories were very dark and dangerous. He was an expert marksman and had also been a Green Beret. About 18 months before he died, it became clear that for his own safety and indeed for my mother’s, he would need to live in a care center. We accomplished the move as best we could, but it took him quite some time to settle in and begin to adjust. Dad was always sure that he would find the way out and home. After a while, he began attending some of the activities, of which there were many, and joined in with other residents.

My Dad was not a singer at all. He and Mom were very involved with their church and Mom was an excellent singer. He always kind of mumbled along with hymns because he didn’t think he had a good voice. His care center used music extensively in their activities, finding that oftentimes residents would respond in positive ways or even be soothed by songs. Dad forgot that he was uncomfortable singing. He forgot many things of course, certainly that I was his daughter, but he became the most enthusiastic singer. Sometimes he would get frustrated with my mother and me when we couldn’t remember the second or third or fourth verse to a hymn. He’d proudly and joyfully bellow out whatever song was chosen with a big smile on his face, singing all the verses.

As we had to work harder and harder to distract Dad when we visited, we’d bring him a treat of chocolate ice cream in little cups. He had always been fond of ice cream, enjoying making homemade peach best in the summers. He and my mother would sit together and even though he wasn’t always sure exactly who she was, he loved for her to sing to him. She’d sing and I’d feed him ice cream. He’d be calm and gentle for a time. Those are very special memories for me.

Mother’s dementia was a bit unexpected to me. I knew that she often repeated statements and couldn’t comprehend or remember things. However, I thought it was due to her intensive time of caring for Dad at home and having to constantly answer his questions over and over. It became clear after Dad passed away that there was a definite problem. She lived in assisted living, more for the companionship of others than any other reason at first. It proved to be a good choice though because she was not nearly as strong as Dad physically. She declined fairly rapidly and we moved her to the memory care unit of her center in January of 2010.

I was sorrowful that she too would have to experience the uncertainty, fear and dark shadows of dementia, but I was much more experienced this time around. I knew what to talk with her doctor about and what I could request and try. I was much more proactive about many issues and called in hospice care at a much earlier time than with my father. Mother’s dementia was softer and gentler. She was the kind of person who took everyone under her wing and reached out to anyone she felt needed a friend. She continued that to the very end, making a new friend and trying to assist that lady with feeding herself when Mom couldn’t even manage her own food. Mother loved singing and reading the Bible and those activities were calming to her even on her most fearful days. Sometimes, I would just start humming a song when she was so agitated and she would usually respond gladly. I’d grab her Bible and open it randomly and somehow the perfect passage would be there and, again, she would be soothed.

One special memory I have is the day that I took my wedding dress with me when I visited Mom. She had made that dress for me 30 years before, struggling with the slippery satin and lace, covering the long line of tiny buttons with satin individually. I took along a picture that was taken of both of us on my wedding day, enlarged so that she could see it more clearly. She sat there holding the dress and actually remembering many anecdotes that I had never heard before. Her care center had little vignettes of normal life scattered up and down the halls in order to stimulate conversation or memories for the residents. I left my dress, the picture, and a little narrative about that special day there at her center so that she could see it as she wheeled up and down the hall. It’s there now, used as a special touchable display, even though Mom passed from this life in May of last year.

I urge anyone who has a family member diagnosed with dementia or Alzheimer’s to prepare carefully for what is to come. Get the legal documents in order and plan for the time when decisions will be hard or impossible to make. And, trust me, that time will come. After that, live in the moment. Glory in the moment. Appreciate and enjoy the moment. Hug your family members and tell them you love them each and every time you leave them. Smile and look for bits of joy…they will be there…in unexpected places.