Remember the Person, Not the Disease
Remember the Person, Not the Disease
By: Michelle Remold
As I sat down to write this blog, I wasn’t sure how I wanted to start it. I found myself reading through quotes about Alzheimer’s and dementia hoping one would jump out at me. None of them really seemed to specifically fit this topic, so I kept reading when a theme seemed to jump out at me. The theme was when it comes you a loved one you can’t pretend it’s not there. This theme seemed to fit this topic well as I have been thinking about how sometimes it seems easier to ignore the disease or pretend it’s not there.
When my grandpa was first diagnosed with Alzheimer’s, family and friends seemed to visit frequently. However, as the disease progressed, those visits became fewer and further between until they weren’t visiting anymore. The common reasoning that was given for why they stopped visiting was that they didn’t want to see him like that and wanted to remember him the way he was. Growing up I heard that countless times but I hadn’t really thought about it until recently. I can respect the fact that they want to keep the good memories alive, but families deal with the decline of Alzheimer’s and dementia daily.
I write about my grandpa often and have attributed my career path to him. When he first passed away I would say that I had “my grandpa” for the first seven years of my life and I had “my grandpa with Alzheimer’s” for the last eleven years. I have so many memories of him before he was diagnosed with Alzheimer’s. Going on long walks, taking us to the park, sneaking me candy and gum when my grandma told him not to, his awesome back rubs, and the holiday parties they would have for us after school. As time wore on though I started realizing all the great memories I have from after his diagnosis. His laugh, his smile when he heard my voice, holding hands, coloring, reading to him, and dancing with him are all memories I have from when he was in the nursing home. Each memory is equally happy for me.
I have always known my grandpa was a key factor in why I chose Gerontology and why Alzheimer’s disease fascinates, but it never really hit me until recently how much of a role he played. As I look back on the memories I have of him, it has become clear to me that what I remember most are the characteristics of my grandpa, not his Alzheimer’s. It has also become much more evident to me now that it is important to remember the person, not the disease.
Michelle graduated from the University of Northern Iowa with her Bachelor of Arts in Gerontology: Social Sciences and a minor in Family Studies. She is currently pursuing her Master’s degree in Aging Studies and Nursing Home Administration from Minnesota State University Mankato.
What advice do you have for dealing with an attorney who thinks that because my mother has dementia and is in a nursing home, she does not need a private caregiver? Thanks to the privately paid caregiver, my mother’s dementia has actually improved over the last year. Without the privately paid caregiver, my mother would rapidly go downhill. Thanks.
Kathryn
It sounds like your attorney needs some dementia friendly training! Many times attorneys are looking at monitoring the dollars and sense of an estate and don’t understand the benefit of services. I’d be glad to have a chat with him or her if you like and see if I can help.
Lori
That would be so helpful, Lori! Thank you. Can we connect via email so I can give you the phone number for my mother’s attorney?
I’ll send you a private email
Lori
Totally recommend one on one private duty care in the early to moderate
stages, It helps in all aspects of the clients memory, and personally this is just my opinion working within the senior care population the nursing home’s are no place for treating any form dementia, they just do not have the time, these clients so gratefully need T.L.C! If you do need care in the late stage, look for specialized units that understand the reifications of a Deterioration disease, as a health-care professional I used the Global Deterioration Scale, it measured the progression of Alzheimer’s disease. This scale divides Alzheimer’s disease into seven stages of ability! Best of British Sally
Thank you Sally for your comment
Lori
This is so helpful to me, Sally. Thank you for taking time to write and share what you did.
Glad to hear that Kathryn!
Lori