The thought occurred to me of what it might feel like to be in the shoes of an person residing in a nursing facility having been diagnosed with Alzheimer’s. How might if feel from their point of view when family members, doctors and caregivers visit and attend to them? So I closed my eyes and imagined what it might be like in a few different scenarios.
The intention here at the outset is not to mock, belittle, trivialize or devalue the feelings of what an AD patient must endure, but to turn a spotlight upon some of those experiences which they must put up with.
“You think I cannot understand you but I can!”
“Each week son, you come in to visit me. You always say hello and your body language tells me that you have a genuine concern. But invariably, as soon as that resident CNA stops in the room, the two of you start talking about me in my presence as if I were nothing more than an old wheelbarrow with a flattened tire. I may not understand all of the words that you say anymore, but I can damn well understand your body language and that woman’s tone. The both of you talk about me in my presence like I am not even here. It feels outrageous, hurtful, insulting and crushing! If I could say it to the two of you, it would be, ‘shame on the both of you, and by the way, you can both go to hell,’ that’s what I’d say.” ---William Bellamy
“You think that I am soundly asleep and oblivious to the world but I am not!”
“My wife always makes some noise or commotion when coming down the hall to enter my room. Whether it’s the jangling of her keys, or the scuffing sound of her right shoe on the floor, I know that it’s her coming. So I quickly close my eyes as I fall back upon the pillow to feign sleep.
Why do I do this you ask?
This is my way of avoiding seeing her looks of pity rather than empathy as she gazes down upon me. She’ll draw up a chair at the foot of my bed; never close up near me, then pulls out her darning needles to knit and work on a garment while she sits there.
I sneak a furtive peek at her through my squinted eyes. The look on her face betrays the fact that she is relieved that I am sleeping. Relieved that she doesn’t have to make an effort to engage with me in anything meaningful. Relieved that she doesn’t have to enter Alzheimer’s World on this visit today. It is obvious to me that she doesn’t feel comfortable coming and she always keeps her distance. We have been married for 40 years. Has she already written me off and not worth the effort to try and reach anymore?” ---George Steinmetz
“The grandchildren are not afraid of me, yet you believe otherwise.”
“You bring in my grandchildren but hold them back from the side of the bed, not allowing them contact or a closer presence. Why the hell not? Children are observant and honest little souls with curiosity that often overrides apprehension. Let them come up to me, let them talk to me, let them hold my hands, for they will accept me as I am and love me as they find me. If I were to die today, I could find peace alone with just these sweet grandchildren each clutching one of grandma’s wrinkled old hands. My grandchildren are merely curious, concerned, wanting to stay connected to their grandparents. Why do you deny them a part of what life, loving and dying is all about?” ---Bessie Archibald
“The doctor always makes his rounds to see me; he just doesn’t connect with me.”
“My doctor comes to see me once each month. He comes on Saturday mornings before his golf games. This I know because he’s dressed in his blue polo shirt and tan hat perched upon his head. I get a perfunctory and insincere hello, then a few pokes and prods. He jots down a few notes on a clipboard. I try to speak and verbally respond, but it takes me some time to compose my sentences. The doctor smiles and continues with his writing, not looking back up at me to hear me out. I wish I could speak clearly and with better pronunciation than I do now but this goddamned disease has robbed me of that! The doctor gives me one more glance then strolls out the door and down the hall to his next patient. He has six more AD patients like me to see on this floor before he leaves for his golf game. I will see him again next month. The routine and lack of warmth and patience is always the same. I am not a human with feelings and dignity to this doctor any more. Just a source of billable time to Medicare." ---Floyd Dructor
“She’s preparing to leave me, but I see all of it unfolding.”
“My girlfriend comes to see me now just once a week. A pattern of disengagement has already begun. I have sensed and watched it as it has unfolded. It breaks my heart and spirit, yet I cannot put together the words to tell her how I feel.
I once enjoyed her closeness, her kisses, her words of encouragement. There were sometimes tears, but lots of her pretty smiles with those cute pink dimples. Now, she sits further away from me; as if I smell. She brings or holds things now in her hand like her purse to avoid extending a hand out to hold onto mine.
I was diagnosed with early onset familial Alzheimer’s just 2 years ago. We had gotten together a year before my fateful diagnosis. I am 37 and she is 34. She cannot accept nor cope with what has happened to me. In the 3 years that I have had my AD, I’ve had to be placed in a care facility about 4 months ago. The first two months, she came to see me every day. Then last month, her visits began to occur less. I have accepted my fate, but I am not dead yet. Her behavior tells me that she has given up on me. I love her, yet she is in the process of casting me adrift in a Titanic lifeboat. I am still John Smith! I am still here. Don’t give up on me!" ---John Percival Smith
A Lesson to be learned.
Learn how to enter and live in Alzheimer’s World. You have the ability to do this. Your loved one who has this disease is locked within the dark fog of this realm and cannot leave. Don’t give up on them because they now inhabit a strange land. Learn the language and customs and take periodic safari’s to that land. Your loved ones deserve this act of courage and bravery on your part.
Jeff Dodson is a blogger and an advocate of Caregiving
and topics involving Alzheimer’s Disease. He lives and writes
out of Elk Grove, California. He is also reachable on MySpace
and Facebook. E-mail him at: www.imaginatic.com/
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