Dementia Does Not Define Who We Are

Yesterday I was sitting in my office shuffling papers from one side of my desk to another. This process is called “hoping to clear my desk by the end of the day”. The pile on my left is the completed, ready to go live in a filing cabinet; while the pile on my right awaits sorting, signing, discarding or to be stuffed in a drawer for later use.  State and Federal regulations mandate every slither of paper that sits on my desk; care plans, UAIs, notice of this, notice of that, blah blah blah. I find the paperwork side of my job to be a chore….I would prefer to be out mixing and mingling with the folks….but I must do what I am required to do. Ho hum….

As I was shredding, tossing and scribbling away, in walks one of the residents; Sam. He proceeds to pick up a few of the documents on the left side, carefully reading out-loud the first sentence.

“Individulized Care Plan. Resident requires assistance with bathing due to dx of dementia and progression of the disease process.”imageofcareplan

Sam, clearing his throat, returned the paper to the pile and began to speak.  ” Disease process…went, year I saw.” Chuckling, he continued ” Wait a minute, okay, yes, did you get it?”

” Yes sir, I sure did. Thank you so much.”

” Good, good. Thank you.” He replied.

Pleased with himself, he began to venture back into the hallway and was gone.

Sam has dementia and often fails to find the right words to express himself. Even though I had no idea of what Sam was trying to say to me, I knew whatever he was trying to convey was important to him, and simply needed validation.  You see, Sam is more than a dementia patient. He is so much more than the man we see on the outside. He is the father of 5 daughters, a former head Deacon in his church; a talented  baritone for his church choir and a former MD.   A doctor.

Prior to the onset of dementia, Sam knew more about disease than I ever would hope to know. I am sure he has treated countless illnesses and diseases  during his medical career; everything from the common cold to the most serious medical complications.      Yet, standing in my office, Sam was not able to carry a conversation or understand what is going on around him.    In his mind, I believe deep down, he is still a doctor. I believe he thinks he is making rounds as he checks in on the other patients….unaware that he, himself, is now a patient…………

As I walk through the facility, every resident has a similar story. Each person, at one time, was no different than you or I. They had responsibilities, obligations, and people counted on them to get the job done. Homemakers, factory workers, construction crew members, doctors, school teachers, college professors, military officers and enlisted WW II  soldiers….on and on the list goes.                   The point is, they are now simply defined by their disease.  Their contributions to society have long been forgotten.  They depend on the nursing staff to meet their needs instead of being depended on.

I truly believe long term health care today has become more of a warehouse  than a place to recieve personalized care. We as health care providers spend so much time on paper compliance that we lack the time to get to know the residents we are caring for. Nursing home nursing assistants usually carry a case-load of up to 30 patients. Who has time to do anything but meet the need with such high numbers?   In most instances, if Sam had wandered into such a busy nursing home, he would have been ushered out, redirected and removed.  Long term care facilities, in general, allow the disease process to define who the resident is, discounting who they once were.

It is sad how dementia residents are treated just because they have dementia. I hear things in my building such as “Sam sit back down”, ” Emma, come back here”, ” Ray dont do that’!”  If I didn’t know where I was, I would think I worked in a day care center.   My staff is trained to treat our residents with respect, dignity and understanding.  But we all fall short of seeing the person underneath the mask of dementia.

One day, you and I both will be 95 and  will possibly need nursing home care.   The young 20 something year old nursing assistant will wander into our room;cell phone in ear and begin stripping us of our shirts and pants without saying a word to us. They will continue to talk to on their cell, ignoring our presence as they wheel us to the shower room; down the hall with only a sheet draped over us for privacy.  Another nursing assistant will enter the shower room and the two will carry a full conversation while wiping our bodies with a soapy facecloth. You and I are invisible to them. We are something they touch, but are not touched by.   They will dry us off, clad us in a sheet and wheel us back to the room, dressing us in a pink shirt with red pants. They lack the time to find clothing that matches……..

You get the point.

It is my hope that long term care workers will look for the person they are caring for and see past the disease process and not allow dementia to define who they are.   I hope that when I am 95 and needing care, that the staff will talk to me, and validate what I am trying to convey, regardless of whether it makes sense to them or not.   You know why? It  probably makes sense to me.  I may shuffle into the administrator’s office, thinking it is my own. I may start sifting through the papers on the desk………..It is my sincere prayer that the administrator simply smiles at me and says….” Wanna run the place today Jessi? I hear you did a bang up job back in the day………………”



4 thoughts on “Dementia Does Not Define Who We Are

  1. I soooo understand what you’re saying…. It’s a job… it’s a job that involves cleaning, feeding, giving medication to.. but it’s a job. There are some workers that take a little time to learn about the people but they don’t really have the time. One thing I did when my mother had to go to a nursing home. I put up some pictures of who she was before she deteriorated… and a picture of her home… and a little note about who she was. I hoped that those caring for her could just get a glimpse of the mother, grandmother, lovely lady she was before her illness progressed… Diane

    Liked by 1 person

  2. my mother in law had dementia, it was very sad and frightening, especially when she did not recognize her son, she passed away not knowing who he was .
    l noticed recently that my husband was forgetting where he put things , then he was getting lost when he drove the car, We went to the Doctor ,and after several tests he informed us that he had dementia, l pray that l will be able to take care of him,

    Liked by 1 person

    • I am so sorry to hear this! Dementia is so difficult for those affected and their loved ones suffer along-side of them. I will keep you and your husband in my prayers. May God bless and keep you- Jessi


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