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I Hate Alzheimer’s
I hate Alzheimer’s, some days are good days, some are not. I am getting worse, I know it.
Nights seem to be worse. Last night I laid in bed, I thought I was in a strange bed, I was scared. I was afraid that no one would ever come back to get me, that I had been left alone. I laid there for awhile and then I cried a little bit. Missy heard me and came into the room and turned on the light. Oh boy, oh boy was I thrilled to see her. She asked me what was wrong. I told her I was in a strange place and I was so glad she came to take me home. She said, “Mommy we are home. Look you are in your comfy bed. Look around, see it is your pretty room.”
I was so happy. I asked her, “Why am I so scared? Why am I doing this?” Missy told me it was the disease. She told me not to be scared, that she would not leave me alone. But, I worry I will not remember that, and wake up scared again. Missy took me to the restroom, we talked for awhile then I was happy to go back to bed.
She got in bed with me, she told me she would not leave me alone. But, I told her, I remember when I was in the nursing home rehab, and I would wake up there and be scared and I would cry for her and yell out her name and she would not come. I remember the nurses told her then how I cried her name at night and from then on until I came home she stayed with me at the nursing home at night. She slept in a chair, and at night when I would cry she was right there to tell me it was OK. Plus she made me little whoobies to hold when I got scared.
Last night when I reminded her of that, she said she was sorry, that she would try never to leave me alone again, but I know…she can not promise that, things happen…so I am scared. I hate Alzheimer’s, I hate the loneliness it makes me feel, the sadness. I understand about the memory loss, but why why the loneliness and fear?
Today has been a good day, Missy has hugged me more than she usually does, though I have caught her looking at me with sadness. I am so sorry for all the family members that have to deal with this disease, Alzheimer’s not only changes the patient, it breaks the heart for their caregivers. I am lucky, I just hope I can remember that.
___________________________________About the Author: Barbara Taylor Vaughan is 90 and in the beginning stages of Alzheimer's. She started a Facebook page to help chronicle her illness and put a face on Alzheimer's. Barbara hopes educating others will inspire them to volunteer to help ease the suffering of those with the disease, families, caregivers. Her relationship with her daughter and caregiver, Missy, and her compassion and humor are inspirational. You can subscribe to her on Facebook where she has opened her page to offering advice to your questions about life and living with Alzheimer's "from a little old lady."
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More from A Patient’s Perspective
Alzheimer’s in the First Person
Barbara Taylor Vaughan is 90 and in the early stages of Alzheimer's. Barbara and Melissa Vaughan are putting a face on the disease by chronicling Barbara's illness. Melissa, living with Multiple Sclerosis, is Barbara's daughter and caregiver.
They hope educating others will inspire them to volunteer to help ease the suffering of those with the disease, thier families and caregivers. Barbara and Melissa's relationship, compassion and humor are inspirational.
We love them and thank them for their humanity and generosity of spirit.
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