What about the Children of Families with Dementia?

When I started writing my blogs and articles a few months ago, I did it because I couldn’t ignore my inner voice. A voice telling me to share what I am learning as I journey along this road with my husband and his dementia. I am surprised at the impact writing has had on my life. Besides releasing deeply buried emotions, it is giving me clarity about the road ahead. It is giving me a purpose to this time in my life. But one of my greatest joys and surprises has been connecting with the children in families with dementia; children of the caregivers, children of the ones suffering from dementia, and my own children. They are the ones commenting on my blogs, or thanking me when I explain how the brain works. It is helping them to make sense of why their parent is acting the way they do. It is guiding them to search deeper inside– to start looking at what they have in life, instead of what they are losing.

Last month I read a blog by a young man, Alta, in Pakistan–’ Boys Don’t Cry’. It was an emotional story about his Mom with Alzheimer’s and how his Dad sits beside her bed every day. He said he feels like he is losing both parents. I thought of my own children, Kyle and Amy. They are one of my biggest reasons why I am committed to finding ways to do more than just ‘survive’ day to day. I want the best quality of life despite these challenging times.

The latest report on a study of Alzheimer’s and dementia said that 40-75% of caregivers suffer a psychological illness related to their situation. But there was no mention of the children. What are their statistics? Dementia is no longer an ‘old persons’ disease. We are seeing an increase in young families being affected. How are these children, as young as 8 years old, dealing with the changes in their world? What support system is available for them? Are they like the tree that falls in the forest–the tree which doesn’t make a sound if no one is around?

The Alzheimer’s Society emailed a survey last week asking for input on where their money should be spent.  Although I dream of the day they find a cure for Alzheimer’s and dementia, I feel it is just as important to support the healthy people in our society. How can we support the families (including the children) living with dementia, so there is less strain on our health care system? So they don’t become sick—physically, emotionally or mentally. I would like to see more education and emphasis on a healthy lifestyle, minimizing the risks of developing this condition. Lastly, I would like see the day when the stigma of having dementia disappears. When people with dementia and their families can walk with their heads held high in public– instead of hiding at home with grief and shame.