Time for a pity party!
You know when you’re just tired? Just tired to the bone so that you can’t think straight and your motivation just dries up? You sit there knowing there are things to do and yet you don’t do them. You just want to curl up in a corner and not exist any more… well at least not for a few hours or days or? The responsibility of somebody else’s life weighs heavy. Mothers and fathers will know this.
Life beckons… I used to travel, I used to be able to go out to dinner, I used to be able to go out for a few hours without worrying, I used to go to work 5 days a week. When you become a carer these things disappear. Your life revolves around bowel movements, dressing, showering, medications, incontinence, doctors appointments, wound dressing, mental stimulation, reassurance, and trying to grant their every wish and desire.
You love them so much it hurts yet resentment crawls in. My life has disappeared and I’ve now become a satellite which revolves around my Ma making sure her every need is met. But I’m burning out. I know this. Every time I lose my cool because of something; I know this. I never saw myself as a bad person in the past but those days are gone. Every time I yell at her, I really yell at the disease called dementia. The thing that will ultimately take her away from me if some other health issue doesn’t take her away first. Every day I see small changes which take her further away from me.
For the last few days she has been fixated on scones and talks about making them. She then asks questions about the stove and how long it take to heat up etc. Today scones called too loudly to her and she went into the kitchen with the purpose of making some. Knowing she can’t turn the oven on, has forgotten where all of the utensils and ingredients are kept AND that she’s never been able to make a decent scone, I go into the kitchen with her and make them while she looks through a recipe book. I didn’t know what else to do. I didn’t want her to realise she didn’t know where anything was and how to turn the stove on. So I just did it. What else do you do?
Of all the changes, I think the spatial displacement thing is the worst. Night and day don’t exist in her world as we know it. At 2pm in the afternoon she is saying it’s night time and that she needs to get ready for bed. She comments on how dark the night is. I can’t convince her otherwise. The other day she left her bedroom with her book on ‘Cyril’ (her wheeled walker) and I asked her where she was going. She told me to her room and turned around and went back in to her bedroom. She will lose her bedroom and the toilet. Yet find them other times. If I take her out driving locally she will not remember many places even though she has lived in the area for over 50 years.
I can cope well with the physical stuff but the mental stuff is a real challenges. One that I’m not coping with well. Carer’s of dementia sufferer’s have a set of ‘rules’ that I read periodically. I think I break most of them every day. “don’t say they’re wrong”, “don’t say remember” blah, blah, blah. I know these rules are supposed to make our life easier but unfortunately they just make me feel more guilty when I break them!
Caring for somebody with dementia is a day to day thing. It’s like riding a roller coaster. On some days or hours, you may have sane moments and others… well and that’s just me!