Dementia Chose Me

I did not choose dementia. For whatever reason, dementia chose me. I realize there is currently no cure; or at least I might have known that when I was first diagnosed.

I can remember some things, but not all. I am not stupid. I am also not a child. Do not speak to me as if I am not in the room or in baby talk. I am here and deserve the dignity and respect of any other human being.

I am a victim of this progressive disease and can do nothing about it. I have no control over how it affects me. It bothers me that I can’t take care of myself or my loved ones. Instead, I have to be cared for. I do not like having all these strangers in my house. I especially do not like that I am told what to do by people I do not even know well. Actually, everyone tells me what to do. Before dementia, I used to work, raise children, drive, converse, travel, and do things for myself. I cannot now or am not allowed to. People treat me differently. Some ignore me and some stare. Others are not gentle with me and seem to ignore my pain. My world has narrowed. I carry many, many disappointments.

Some of the things you must do for me or to help me are demeaning and embarrassing. I can become fearful, frightened, and agitated all at the same time. I resist what you do to help me for many reasons, some of which I am not sure of. I can become easily confused or bewildered. At times, I can be aggressive, or depressed, or apathetic. My emotions are not as controlled as they used to be, and it is exceedingly difficult for me to make decisions.

I do not understand what all the fuss is about concerning taking pills and bathing. If the medication is so important, why don’t you take it? I could wear the same clothes every day and not be bothered by it. I still hate to shave but you insist I do. The bathroom can be a scary place and I hate to be cold. I like to be left alone and not bothered.

Most of the time, I can tell what you are saying by your tone of voice and your body language. These are easier for me to interpret than words. I am well aware of when you are upset with me even if you don’t say anything.

I despise repeated questioning and being told dozens of times what to do. I may be unresponsive at times. Raising your voice does not help. I need more time to process what you say or when you tell me what to do. Repeating what you say only makes it take longer. It complicates things. One thing that does help me is keeping things the same. If I have the same routine and we do things the same way each time, I become accustomed to it and can expect what will happen next. This decreases my anxiety and frustration.

Noise bothers me most of the time. I can’t filter out what I don’t want to hear. Too much chatter really irritates me, and background noise can easily cloud what you’re saying. It is frustrating and confusing all at the same time.

Most of all, be patient with me. It has been difficult getting old. This is not what I thought I would be. I hurt. I cannot tell you what I want to. I know I do not have much time left.