what I hate about dementia
A page in the diary "Sue's thoughts on life"
Written by suew Sunday, 19 April 2009 23:28
I have just had a two week break from Ray and although he came home last Monday I am still feeling unsettled. It is hard to feel okay about certain things you have to live with when living with someone who has dementia.
Arguments - our mentor at Dementia support tells us to back off from arguments, to agree, to take time out, to distract the cared for person etc. I, being human, sometimes ignore all that good advice and tackle the argument head on. I know, if you argue with someone who has dementia you are mad too.
Incontinence - nothing like sitting next to your partner watching television and THAT SMELL assaults your nose. It happened tonight and by the time I had stripped him, cleaned him up, showered him etc forty five minutes had gone and the program it was enjoying was long over. I hate incontinence for what it does to him and what it does to me. Because of incontinence I blame the dementia for our spoiled relationship.
Uncaring behaviour - Ray no longer expresses emotions apart from anger and frustration. Sometimes when he is shouting at me he spits his teeth out and I am laughing too hard to hear what he is trying to say. Ray doesn't seem to relate in any real way to those who were once our friends, neighbours etc. He never expresses love except to our daughter on the phone. She always ends her calls: "Love you Dad" and he replies: "Love you too sweetheart."
Obliging me to be the "fixer" - I guess all carers experience this to a greater or lesser degreee. All the problems here are mine, according to Ray it is all my fault. I need to do something about them, I need to fix them, I need to solve them that is what Ray expects from me. Also that I should not complain while doing so. I feel like I am WAY out of my depth in trying to fix things lately. I was brought up to be a wife and mother not a builder, mechanic etc. Lots of what I have to do now are jobs I never expected that I would have to do.
Oblivion to what is going on emotionally etc with me - Ray never was the most observant husband but I sure do miss those occassional kind words, little shows of affection, small gifts etc. I think they all disappeared with the 2005 stroke when the vascular dementia first showed up. Since then he hardly treats me like a person at all, just the household help. When he speaks the words he addresses to me are mostly asking for something or telling me I need to do something.
I can understand why one carer referred to herself as a "widow with a living husband". That is what this end of my life feels like to me too. A sad feeling really.
I know a lot of others who come to this site are looking for help. I wish some would stay so we could form a community of people who share information and support and help each other.