Archive for July 2013

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People With Dementia Can Still Experience Joy

Monday, July 29th, 2013

Ed minus Don - ResizedAmong the general public, Alzheimer’s is typically considered a horrible, cruel and devastating disease that destroys its “victims.” But when I recently interviewed experts on Alzheimer’s a slightly different picture emerged.

I recently interviewed Teepa Snow, nationally renowned expert on Alzheimer’s caregiving. When I asked if she thought people with Alzheimer’s can still enjoy life, she answered, “Yes. Almost all people with dementia, even those in the later stages of the disease, can enjoy life if they have the right support and environment.”

The entire book, Creating Moments of Joy: A Journal for Caregivers, is dedicated to this issue. The author, Jolene Brackey, writes, “We are not able to create a perfectly wonderful day with [people who have Alzheimer’s], but it is absolutely attainable to create perfectly wonderful moments – moments that put smiles on their faces, a twinkle in their eyes, or trigger [pleasant] memories.”

Carole Larkin, owner of Third Age Services in the Dallas/Ft. Worth area, is a geriatric care manager who specializes in helping families with dementia issues. When I asked her the same question, she answered, Absolutely. They can and do enjoy life. That enjoyment, when it happens, is moment by moment – pretty much the same way we enjoy life.”

Tom and Karen Brenner are the authors of You Say Goodbye and We Say Hello: The Montessori Method for Positive Dementia Care. Tom answered my question by saying, “Yes. And their enjoyment in life is based, in part, on our enjoyment of them. It’s like a swinging door – it goes both ways.”

Karen added, “We believe we can reach all people with Alzheimer’s, including those others consider unable to communicate in any way. It’s almost always possible to communicate – even with people who have lost their verbal skills.”

How I Accidentally Wrote a Book for Alzheimer’s Caregivers

Monday, July 22nd, 2013

I wrote Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy as a love story. It’s about the powerful 30-year relationship I had with Edward Theodoru, a delightfully colorful, wickedly eccentric Romanian gentleman and scholar.

My only purpose was to chronicle the relationship and share it with the public. The book narrates the story of our early romantic years together, including Ed’s quintessential old-school European manners, our subsequent decades-long relationship as soul mates, and our eventual triumph over his Alzheimer’s.

Come Back Early Today does not give advice to caregivers. But it does illustrate how Ed’s disease progressed and how I dealt with the numerous issues that typically arise when caring for someone with Alzheimer’s.

So you can imagine my surprise when most of the book’s reviewers focused heavily on the parts that describe how I cared for Ed when he had dementia. It shows how I managed everything from denial, getting a diagnosis, convincing him to go to a long-term care facility, arranging for a DNR (do not resuscitate) order, to end-of-life issues care issues and hospice considerations.

One day I unexpectedly received a letter from a Cape Coral woman whose husband has Alzheimer’s. She wrote:   “The main reason I am writing is to tell you how much I liked your book. Since my husband was diagnosed [with Alzheimer’s] I have read many books, attended some courses and joined a support group. Your book is the only one that gave me hope.”

That’s when I realized I had accidentally written a resource for Alzheimer’s caregivers that also includes a love story rather than a love story that just happens to illustrate solutions to several dementia caregiving issues.

I’m still intrigued (and gratified) by the unexpected responses to my memoir.

 

Alzheimer’s and Laughter – Sometimes It’s the Best Medicine

Sunday, July 21st, 2013

Alzheimer’s disease is a deadly serious topic, and deservedly so. But sometimes laughter is the best medicine. So I’m going to share two amusing stories about Ed. He also found them funny and we both had a good laugh!

Ed minus Don - Resized

 

 An Alzheimer’s Sneaky Thief

After finishing each meal at the Alois Alzheimer Center in Cincinnati, Ohio, Ed would always wrap the spoon in a napkin, put it in the breast pocket of his sport coat and take it back to his room.

Pretty soon his room would have spoons all over the place so the staff would go get them and return them to the kitchen. But sure enough, the next day he would start a new collection.

I often sat with him when he was eating and had observed this behavior many times. Finally, one day when he started his cleaning ritual I said to him, “Don’t take those spoons, Ed. They don’t belong to you. They belong to the facility.”

“Oh, no!” he said, loudly enough for everyone to hear. “I take them every day with no remorse!”

The Lee-tle Pee-lows

Spoons weren’t the only thing Ed pilfered from the facility. They had sofas in the lobby that had little designer pillows on them. For some reason Ed was drawn to those little pillows (or ‘pee-lows’ as he pronounced it) and took them back to his room, too.

The staff would go to his room periodically, retrieve all the little pillows and return them to the sofas. And just as with the spoons, he would begin stealing them all over again the very next day.

One day I said to him, “You really enjoy stealing your spoons, don’t you?”

Ed got a sly grin on his face.

“It isn’t just the spoons I steal,” he said proudly in his thick Romanian accent. “I also r-r-really love to take those ‘lee-tle pee-lows’!”

He began laughing and so did I. And – you guessed it – he kept right on stealing the spoons AND the ‘pee-lows’!

I invite all of you to share your own precious amusing stories.

For more humorous stories about Ed, as well as numerous serious stories, read Come Back Early Today:  A Memoir of Love, Alzheimer’s and Joy (available on Amazon) or visit my website, which has a wealth of information for Alzheimer’s caregivers.

 

 

What It Must Feel Like to Have Alzheimer’s

Sunday, July 14th, 2013

I’ve been publishing articles about Alzheimer’s disease for nearly two years. Most have focused on what it feels like to be a caregiver. But how does the person with dementia feel?

I recently interviewed Teepa Snow, nationally renowned expert on Alzheimer’s caregiving. I asked her to recommend what she considered the best book for Alzheimer’s caregivers to read. She suggested The Best Friends Approach to Alzheimer’s Care by Virginia Bell and David Troxel. I did and that’s when I realized I’ve been ignoring what it must feel like to have dementia.

Here’s the crucial thing In Chapter 1: They explain this in a way that makes the reader experience those feelings while reading. For example, take embarrassment. The authors state that we all had the experience of being called on by the teacher in school and not knowing the answer.  

“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 several other feelings. For the first time ever I experienced just a little bit of what it must feel like to have this disorder.

The authors advise us to take 10 small sheets of paper and write down one of our favorite activities on each. They say to study them one by one. Then they then instruct us to assume we can’t do any of them anymore and to wad them up and the papers away one at a time. They then ask, “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.”

Reading this book (available on Amazon) will definitely give us something to think about and make us far more insightful and compassionate caregivers.

 

Sometimes Forgetting Is a Blessing

Saturday, July 6th, 2013

The following story illustrates the fact that sometimes when Alzheimer’s patients forget things it is a blessing for them.

Ed’s physical health was deteriorating and they told me he would have to be moved to a different room in another wing of the facility. A week later they moved him.

“I want to go home,” Ed kept repeating plaintively to me and everyone who passed by during my visit the day of his move.

I felt as though I’d ripped him away from everything that had become familiar to him. From what he’d come to accept as his “home.” And there was nothing I could do to make it better.

The instant I woke up the next morning I heard Ed’s melancholy voice in my head, repeating over and over, “I want to go home.”

I burst into tears.

A little later, I drove to the Center and ran into Janelle, one of his new aids, outside his new room.

“How’s he doing today?” I asked, expecting the worst.

“Oh, he’s fine,” she said with a little laugh. “He stopped asking to go home.”

“He what?” I asked, stupefied.

“Yeah. He’s already forgotten he was moved and he’s settled into his new room as though nothing’s changed. He’s in a real good mood this morning,” she said, eyes twinkling. “Go in and see for yourself!”

I stopped and let her statements sink in.

“Yes. It’s often like that,” she said. “Residents often adjust to changes more easily than their loved ones.”

“I guess that may be one of the benefits of dementia,” I said. “You quickly forget painful things that happen to you.”

Nonetheless, even though Ed had forgotten about the move, the sound of his voice begging to go home reverberated in my head and troubled me for days. I was the one still in distress. I had learned that with Alzheimer’s, sometimes the caregiver suffers more than the patient.