What Is It Like to Live with Alzheimer’s Disease?

alzheimers

As an R.N. and previous owner of two senior care franchises, I have taken care of numerous patients with dementia or Alzheimer’s disease. Perhaps more importantly, I have spoken with dozens of sufferers in a quest to be able to empathize with and begin to understand their daily lives. While I write this from the perspective of a sufferer, it is a piece of fiction; a composite of several conversations chosen to highlight those aspects of the disease that I hope will help the children of sufferers to better understand what their loved ones are going through.

A New Day
My eyes pop open, and I am content. I know that my parents are in the kitchen making breakfast, and that my gal is waiting for me to call her like I have every morning since we started dating. My favorite tune — Spanish Harlem — is running through my head, the soundtrack to a dream. I stretch, and the arms that move up in front of my eyes are not mine.

My mood turns to shock and horror as I see thin-skinned, fragile hands turn back and forth in front of my eyes. What will my gal think if I touch her smooth cheek with these? I struggle to my feet – it is much harder than it should be — and I realize there are no parents in the kitchen, because this is not my house.

I look into the mirror and for a brief moment, I am terrified of what I see. The face in the mirror cannot be mine! And then, I see something in the corner of my vision; something small, but familiar.

A toothbrush…my gal…no, no, my daughter…no, my granddaughter (niece? Great-granddaughter?? The thought starts to slip away, and I focus on the toothbrush again). She bought me this new toothbrush just yesterday. (Or was it last week? Last year?? I remember it well; I loved that gift…but it looks well-used now.)

I’m not at home. I’m in a home — not sure where the kitchen is, pretty sure I just got here. I push the button on the thing in my hand (toothbrush!), and it hums, and I brush my teeth. Who ever thought of a powered toothbrush?

“There is a rose in Spanish Harlem…”

I’m thirsty. I poke my head out of my bedroom, not sure where the kitchen is, but it turns out it is right outside. I head over to the sink and realize I have a problem. My arm won’t lift above my shoulder, it hurts too much. But I want some tea, and the cups are all at my nose height.

I’m a mechanical engineer for General Electric; solving a simple problem of gaining six inches of vertical clearance so I can grab this teacup should not be all that difficult. The steps in front of me are simple; grab the cup, turn on the water, fill the cup, open a teabag, put the teabag in the water, wait, and drink.

I turn on the water. I open the teabag. I put the teabag in the…in the…oh. I set the teabag on the counter, and look around for the teacups. They should be in the cupboard above the sink…no, there is no cupboard above the sink. My wife would know where they are. “Honey,” (why does my voice sound so strange in my ears?) “Where is the cupboard above the sink?”

The question sounds bizarre to me, and I realize my wife is not home. In fact, she has been dead for three years. I have not clocked in at G.E. for more than thirty years now. Also, the teacups are in the cupboard above the dish drainer, and I can’t reach them because my shoulder hurts. Panic races up my chest, and I squeeze my eyes shut and wait.

Don’t panic, I can solve this. I’m a mechanical engineer for General Electric. I work with Dave, and if Dave were here, he would solve this problem in a heartbeat. I could solve this, too; I am a creative person who sees things for what they could be not what everyone says they are. I have an annual report that says so.

“Honey, do you remember Dave?”

She doesn’t answer. I wonder where she is. And why is the water running?

Oh. There is a teabag on the counter. “And did you want me to make this tea for you?”

Empathy Is Not Easy
It is impossible to predict what someone with Alzheimer’s will forget, or when. It is easy to be emotionally destroyed when they ask (in the middle of a pleasant conversation) who you are and what you want. We all want to think that we are special enough to our elders that they will somehow overcome their conditions and remember us.

The most important thing to remember is that every tiny bit of anguish and disappointment we feel is mirrored a dozen (or even a hundred) times more strongly in their hearts. Imagine what it must be like for them to live this way day in and day out…and do your best to overcome your own hurt feelings and offer them whatever support you can.

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About Peter Mangiola

Peter Mangiola is a senior care advocate with several decades of experience in the industry. Peter helps senior citizens by leveraging his vast knowledge of the healthcare industry and his expertise in identifying effective, affordable healthcare solutions. Peter has been a consultant, educator and regular speaker for many groups and organizations over the years covering a wide variety of topics; including Geriatric Care Management, Dementia, Alzheimer’s and Senior Care Health Service & Advocacy

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