Chapter 6 – Trying to hold on

Often, adult children of parents battling with dementia find themselves distressed on multiple levels. Confusion, anger and resentment routinely take up residence in their lives. They find themselves struggling to break free from the grip of fear, uncertainty and longing. The once clear relationship they had with their parent slowly fades into blurry, gray shadows of memory. Sometimes the feeling of grief and loss is almost too much to bear.

Some days we visit but the conversation is not interactive. I talk she nods her head and I wonder if she hears what I am saying. I will tell her if it is something that she needs to record on her calendar as the note taking has become very important for her now. With having kept a diary for a great deal of her adult life it seems to give her comfort and confidence. If it is written it is going to happen. Then there are days where we chat and laugh and I am so glad that she is there with me at that moment! I see she is still ok to be on her own. I wonder about that and try to look at things objectively but I am not sure if I really can. I miss her, my best friend, my confidant, my life guide, I miss her.

I try to observe things daily, whether she is safe, whether she is ok there alone. She always has the door locked, it is a habit that she has had for years. She has her key on a lanyard so she locks the door and hangs it around her neck when she goes to her daily coffee outing or to get her mail. This has become a habit and she does it daily without fail, as far as I know. She is blessed to be in a building with all retirees and they all spend time with each other and she is well known and well loved. It is comforting to know that they all watch out for each other. The building has a controlled entrance and nobody gets in without being allowed in by one of the seniors. They are all very vigilant about who they let into their space! She tells me she is just fine in her home. I know she wants to stay there and I try to always put things in perspective, but that is not an easy task.

Like all of us some days are great, some days are challenging. While I feel that I have things in control for the moment, that is short lived. I was on my way home from work and had made my usual call to Mom and she had heated her dinner in the microwave (she told me) but something did not seem right. She sounded different and I couldn’t determine what it was, but I had to go to the apartment. As I entered her apartment I could smell smoke and while my heart skipped a beat I tried to remain calm. She had hand washed one of her sweaters. The home maker does her laundry weekly but she wanted to wash this particular sweater. It has been a Christmas gift from my kids and she would make sure it was washed properly. She had hand washed it and decided to dry it hanging over the oven door using some heat from the oven. She had the oven turned off and the sweater was on the floor, the bottom part was charred from falling onto the bottom burner of the oven. I tried to stay calm and help her clean things up. She began to weep softly and I comforted her that it was an accident and she was fine, we would clean it up. She was so sad about the sweater; sad she had let this happen. The guilt came flooding over me. She has not been cooking for months why had I not unplugged that damn stove!

After finishing the clean up, I unplugged the stove and also hit the switch on the breaker so it would not work even if it was plugged in. She was trying to determine what happened and we shared a few tears and I guided the conversation in a different direction. I heated dinner and we sat down shared a meal and a cup of tea. When I left that night it was like nothing had happened as far as she was concerned. I on the other hand cried all the way home dealing with the guilt. What had I been thinking, how could I let that happen! Somewhere in the tears I found some forgiveness for myself and thankfulness that she had not been hurt. This damn disease takes so much.