What It Feels Like to Have Alzheimer's -- And Why We Need to Know

I have to admit almost all have focused on the caregiver. We can feel contentedness, pride and joy. We can also feel sadness and loneliness. The list goes on and on. But how does the person with dementia feel?
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I've been publishing articles about Alzheimer's disease for nearly two years. And I have to admit almost all have focused on the caregiver. Many have focused specifically on what it feels like to be a caregiver.

We can feel contentedness, pride and joy. We can feel elated whenever we make a meaningful connection with our loved one.

We can also feel sadness and loneliness. At times we are angry, depressed and frustrated; at other times we may be embarrassed by our loved one's behavior and we can feel sorry for ourselves that we have to go through this experience. The list goes on and on.

But how does the person with dementia feel?

Although I've thought and written about how to deal with various behaviors that result from the feelings of people with dementia, I am embarrassed to admit I've spent very little time contemplating how these people really feel deep down inside.

I recently interviewed Teepa Snow, nationally renowned expert on Alzheimer's caregiving. And I published an article here about her recommendations for planning activities for people with dementia.

At the end of the interview I asked her to recommend what she considered the best book for Alzheimer's caregivers to read. She suggested we read The Best Friends Approach to Alzheimer's Care by Virginia Bell and David Troxel.

So I bought the book and started reading. And that's when I realized what I've been unwittingly ignoring. I've been ignoring what it must feel like to have dementia.

In Chapter 1, "The Experience of Alzheimer's Disease," the authors go into detail about this topic. But here's the critical point: Not only do they discuss the feelings Alzheimer's patients have, they explain these in a way that makes the reader experience those feelings him or herself while reading.

For example, take the feeling of embarrassment. The authors state that we all had the experience of being called on by the teacher in school and not knowing the answer to the question.

"How did we feel?" they ask. "We remember the feeling of our collar tightening, voice faltering, palms sweating, and face blushing." Then they call to our attention that "The person with Alzheimer's disease is in a giant classroom every day, one in which he or she never has the exact answer."

That really made me stop and think. How would I feel if I lived all day every day in such a situation?

They go on to provide similar examples for every feeling about which they write -- loss, isolation and loneliness, sadness, confusion, worry and anxiety, frustration, fear, paranoia, and anger.

I was shocked. For the first time ever I experienced just a little bit of what it must feel like to have this disorder.

As I thought it over I became aware of some of the mistakes I've made in interacting with people who have dementia. Mistakes I would not have made had I read Bell and Troxel's book.

I have recently started volunteering to visit two ladies with Alzheimer's who have few visitors in the memory care facility where they live. When I last visited one of them I asked her to tell me about her daughter. She said she didn't have a daughter. I then stupidly held up a photo of her daughter and reminded her she'd just told me she did have a daughter.

Her face fell and she quietly said that yes, she did have a daughter. I could tell she felt embarrassed by her forgetfulness. I was sorry I'd made such a blunder. I could have said, "That's OK. I forget things like that, too," but I didn't even think to say that.

I made similar mistakes when visiting my beloved Romanian soul mate, Ed. He once told me he'd talked to his father, who'd been deceased for more than 50 years, the previous evening. Again I was inconsiderate and told him his father was dead. He got a hurt and confused expression on his face.

Fortunately I caught myself and told him, "Oh, I'm sorry. I'm sure you did talk to him last night." His hurt look went away and we continued the pleasant conversation we'd been having.

Near the end of the chapter, Bell and Troxel advise the reader to take 10 small sheets of paper and write down one of their favorite activities on each. They say to study them one by one. They then instruct us to assume we can't do any of them anymore and to wad them up and throw them away one at a time. At that point they pose the question, "How do you feel?"

They continue:

"If any of us experienced memory or judgment problems, if any of us was afraid of something, if any of us had to give up most or all of his or her favorite activities, it would be perfectly normal to be depressed or anxious, to hide things, to wander away from a possibly threatening situation or to strike out at someone we think is trying to hurt us."

Finally, they invite the reader to imagine what it would feel like to have dementia. There is even a form where we can write down how we think we would feel.

I strongly suggest that all of us who love someone with dementia study this book and feel some of what our loved ones are going through day after day after day. The experience will definitely give us something to think about. And surely, it will make us far more insightful and compassionate caregivers.

For more about Alzheimer's caregiving read my book, Come Back Early Today: A Memoir of Love, Alzheimer's and Joy, and visit my website, which has a wealth of information for Alzheimer's caregivers.

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