I don’t often write about the challenges of living with someone with dementia, it is just part of our family life, but I feel a need to share today. On my birthday, my mother did not recognize me, when the children explained it was my birthday, she wrote a note and seemed to think I was her twin and that it was our birthday. She then sulked and was pretty difficult all day as no-one gave her birthday wishes.
I have to say I don’t celebrate my birthday usually, so this is not the issue. It is the frustration that when you live with someone with dementia there are never “good” days, there are days that are better than others, but life right now means waking up every morning in dread of what Mum will say or do today.
Usually my strength is positivity, and my approach to life has got us through some pretty tough times, but it is hard to find a positive when your mother talks to the wardrobe in French telling me it won’t get out of her room. She refuses food because apparently she no longer likes her favorite meals, she sits in her petticoat because she has forgotten what her clothes should be and never says thank you or uses my name because she has no idea who or where I came from.
Still, I make her breakfast that is healthy, balanced, nutritious and tasty that may get a glimmer of interest or enthusiasm which I take to her in bed to make her life easy and more enjoyable. Each morning the food is taken with suspicion at best, usually accompanied with a complaint about some girl who hovered around her room, a criticism that something else isn’t right, I pick the towels up from the floor which this mystery girl has been throwing all night and then wait for the next nonsense story which out of respect for her I listen to attentively and try patiently to answer. The answer is however irrelevant and probably unnecessary. Covid makes the situation so much worse, there is no escape, so this post is for all those brave, husbands, wives, sons and daughters who cope with “the stranger in their house” the person who may look like a loved one but only in body, the person who you loved and doted on has long since left.
I wish I could say it will get better, but this is not the case. Life goes on but time stands still, emotions surge that are not ones of love and fear of loss. I cry for what I have already lost and wish I had valued the times we had. I love that we can keep her safe in our family, but I hate she has no knowledge of the challenges she throws our way or understanding of the sacrifices that my children have had to make to their lives to accommodate her, we can no longer have holidays as a family as I have to look after my mother, it breaks my heart to get messages from my husband and children when I can’t join them because I have a duty to fulfill to her, a thanks for all the years she dedicated to us and any change would be a disaster for her.
I guess no life is perfect, with or without COVID, so I have no choice but to hold on and remember the present is the best time and try and to make it count, we have no idea what will come for the future and the past no longer counts. For dementia carers there is no tantalizing flickering light of hope at the end of the tunnel, there is more darkness and frustration to come. For those who care full time it is hard, and every day a small part of your heart dies as you watch more and more of what you loved about a person leave. For me there is little left.
I wish my Dad was here even a few words of encouragement, his sense of humor and understanding would help so much, caring for a dementia sufferer is the loneliest job in the world. The weight of responsibility is overwhelming and the pain immense. If you know a family who cares full time for someone, don’t forget to reach out and help. Everyday is a different mountain to climb, the height is determined by the person they care for, you cannot plan ahead each day is so different.