I am not a child, I have dementia

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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.

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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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12 thoughts on “I am not a child, I have dementia”

  2. My husband’s mother is suffering with dementia and has transitioned to a care facility… As well as dementia, she has broken her leg, and has a fixator implanted, but can no longer transition with out a “hoyer lift”…
    She doesn’t want to eat,.. And on top of it all, osteoporosis has made her bones “mushy”, so her spine is rapidly deteriorating making it difficult for her to sit up for any length of time…
    It makes me feel so inadequate..
    But for her, whenever she may have a lucid moment, it must seem like he’ll on earth .

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  3. Hi Patti- thank you for sharing about your mother-in-law. I can’t even imagine a worse thing than suffering from dementia because really, isn’t that bad enough? But to hear about these other conditions, your mother-in-law is a strong woman by far. I dont think that I would want to eat either. That is most likely the only thing she/they have left to control in life. I know I dread when my grandma is lucid on a bad day or in a bad moment. I am right with you in regard to feeling so inadequate. In the bad days/moments she apologizes that she makes me “suffer” but in the good days she says she remembers us together when I was a child and even that makes her happy-sad. And almost every night I hear her pray and tell God she’s ready. What can we do? All we can do is to continue being a constant in their lives so that when they do have a lucid moment, they have something positive to hold on to on a bad day. Patti, I will surely keep you, your husband and your mother-in-law in my thoughts and prayers -may you all find strength and feel nothing but love and peace as you continue on this journey with your mother-in-law.

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  4. Reading this brought tears to my eyes. I think it’s because I’ve met your grandma absolutely adored her. She even gave me a crayon and told me I’m pretty ☺️ Even though she has dementia I can see her strength and love and she loves life. Perfect name for your blog actually because both of you embody these qualities. It also touched me so much because I know you Missy and I see you everyday at work and you always are put together and strong and no one would ever guess all the things you are dealing with at home. You are one of the greatest women I know and I find strength and inspiration from you everyday.

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      • You and i are alike in that we are too tough for our own good, we are not good at expressing our feelings or verbalizing it, instead we internalize it and put the weight of the world on our shoulders. We will try to do everything ourselves without asking for help. We don’t express our feelings (except maybe to our hubbies) enough cause that’s just awkward and unnecessary haha but I want you to know that you’re never alone and I’m always here for you if you need a helping hand. Plus I haven’t told you this but you’re the first friend I’ve ever had that has truly truly made me a better person, opened my eyes to so many topics, made me want to learn and know more, and just to do more and be more. I heart you!!!! No hugs though cause that’s weird lol

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  5. Words are so powerful! People should handle them with care, and not be over-simplistic about it. We understand the world through language. It’s awful to see old people treated like children, because they were told to behave like that.
    I’m glad you’re helping your grandmother, loving her and helping her. Now, you are her mind. I’m sure her heart is full.

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