The Lights are Beginning to Dim - A Story

I am sure we all know someone who has or is in the beginning stages of dementia.  This is my first-hand experience of watching my relative decline. I have been going through this with my uncle for the past two years. 

I came back from living in another state for several years and for a short time lived with my parents.  Shortly after, my uncle, who was always independent and a self-made man, was diagnosed with early onset dementia and had to live with my parents permanently. Through the years my relationship with him was a very close one. He experienced us growing up and shared in both the good and tough times.  We always came through the varied experiences with greater love and respect as a family. 

It’s been over the past two years that I have seen his mental health decline. He was no longer the man I once knew.  He walked around like a lost man in a deep fog.  So deep that it felt like the lights inside this fog were beginning to Dim! 

As an outsider, someone who was going to be able to leave the situation and detach myself, the process of watching dementia progress was extremely difficult. It was excruciatingly painful and worrisome for my mother to watch her brother and be able to acknowledge what she was seeing and feeling.  There are tremendous implications for that person’s own life. 

You have to think about monetary issues, arranging caretaking for him, as well as everything in the present and future. 

What has been the most difficult for me is seeing the larger picture of dementia and its seriousness. My days are sometimes filled with sadness when I realize that this person keeps drifting further away. 

He would not remember the last thing he did, such as turning off the stove and leaving things all over the house.  While there, I felt responsible for cleaning up after him to make things easier for my mother when she came home from a long and difficult day at work.  As time went on, I felt angry because I was a caretaker and didn’t want the role I had put myself in. I felt angry and wanted him to “just take care of himself”.

Recently, since I have left the situation there been some change in my thoughts and feelings.  I realize that this is not laziness but rather a serious issue of deterioration, and I have found myself becoming more empathic.  I see the stress and fear in my mother, who is very stoic about the situation, and doesn’t share how she feels about what is happening. I can only imagine. I see her daily burden in caring for him.  As I look back over the years that I have known him, the person I knew, no longer exists.  That is very sad.

The point of my story is to say that when the Dimming of the Lights occurs for someone we know or love it is difficult for everyone involved, not just the immediate family. We can feel worried, helplessness or angry, always uncertain of what to say and when.  But most importantly, we can be there for the significant other or friend.  It is important to listen.  Offer help and support.   You might find yourself needing help, because it could bring up personal issues which maybe similar in nature.  Loss of a loved one, whether through mental or physical illness, never leaves us completely.  Our loved ones stay in our hearts forever