There are moments when I care for my grandmother when her eyes pierce me. This is a story as told through my grandmother’s point of view if she had the state of mind and the courage to tell.
“I am Ramona Melendez. I am 91 years old. I have dementia. I cannot tell you when it started officially but I can tell you what I’ve heard the doctors say to my family. Doctors say that dementia has brought me back to a child-like state. Now, my family treats me as if I’m a child and sometimes they even get mad at me and I can’t understand why. When I wake up in the morning, and no one else is around, I wander to search for my family. Sometimes I wander in search of food and other times I wander in search for the bathroom. My thoughts are just beyond my reach at times. For instance, if I change out of my pajamas to get ready for the day, I sometimes forget about pants and shoes. I don’t know why. I just cannot remember the next steps and sometimes I forget what I am doing altogether. Sometimes, I cannot even remember how to comb my hair. My family patiently teaches me the next steps and yet, by the next day or just a few moments later, I forget it all again. You see, that’s not the mind of a child. That’s the mind of a woman with dementia.
A child has the ability to learn and progress. I, on the other hand, have regressed. I have not regressed because I forgot the next steps and refuse to re-learn them with practice and repetition. I’ve regressed because that portion of my brain which held the information has deteriorated. I can no longer retain that information as there is no longer a suitable place in my brain for that information to live on. That is not the mind of a child.
Yes, I do enjoy the occasional children’s program, but I also enjoy soap operas and action packed movies. I enjoy them, not for the content, but for the animated acting. You see, I’ve lost most of my language. The words I know I should know, are no longer there. If you look into my eyes during a conversation, you will see my fright as I struggle to follow along with what you’re saying, hoping that I have not done something wrong. You’ll see my frustration and utter fear that no one will ever really know what I’m wanting to say as I try so desperately to cling on to my independence.
Maybe there are some ways when I appear like a frightened child but that’s when I am away from what little bit is familiar to me. When I wake up too early in the morning, wandering around in search for whatever it is I am trying to find and I cannot find anyone in the dark, seeing my granddaughter’s face is such a relief that I tremble and almost cry. I tremble and cry not because I am frightened of her, but because I was so frightened that I would be alone and not know what to do next.
If you know anyone like me, please be patient. If one day we wake up and are able to dress ourselves and go to the bathroom all on our own, but cannot even put on our shoe the next day, please do not be upset with us. We are not doing it on purpose. Do not be frustrated that after weeks and weeks of repetition we are still not getting the simplest of tasks. Do not think of us as children because we are wearing pull-ups. Do not think of us as children because without you we would not be able to bathe ourselves or feed ourselves. Do not think of us as children because we cannot have a discussion with you and would get lost even just turning the corner in our own home. You cannot fall for that overly simplistic and completely inaccurate comparison that the doctors say when they equate our state of mind to that of children. Can’t you see? Believing that we have regressed to a child-like state is where your frustration and anger and impatience will stem.
I do not have a developing mind. We with dementia do not have a developing mind. Our minds are dying. Be patient with us because we are looking to you for guidance at every turn. Be gentle with us because you and our routine are the only safe havens we have left. Be kind to us because we cannot even trust our own minds.
I am not a child. I have the lingering knowledge and independence of a 91-year old woman. There is history within me and there is passion for life. I just happen to also have dementia.”
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