Archive for February 2013

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Alzheimer’s and a Shocking Declaration of Love

Thursday, February 21st, 2013

I found Ed in his room dressed nicely in black Dockers and a crisp red and white pin-striped shirt one day when I arrived with Peter, my little Shih Tzu.

Ed lifted his head and saw us.

“Oh, the lee-tle one,” he said, perking right up. “Pe-tair. ‘lee-tle’ Pe-tair. Come here,” he said, reaching his arms out. “Hi, Ma-r-r-ie,” he said, finally turning his attention to me. “Can I hold Peter?”

“Sure.”

I put “lee-tle’Pe-tair” on Ed’s lap as I had done so many times before.

Ed started stroking him slowly.

After a while I went into Ed’s bathroom to wash my hands.

I put Peter back on Ed’s lap and he resumed “padding” him. When it was time to leave, I started putting on my jacket.

“I love you,” Ed said.

I was startled. In 30 years, we’d never said those words to each other. We just knew it and never felt the need to say it.

“I love you, too,” I said simply.

As I was driving home I asked myself, “Why did it take 30 years and one of us getting dementia to say “I love you?”

Three Mistakes I Made – Are You Making Them, Too?

Monday, February 18th, 2013

In the early and mid-stages of Ed’s dementia I did many things I was later not proud of. At all.

Ed had a short temper and as his Alzheimer’s progressed he began losing his temper more often. He got angry and yelled at me frequently. At that time I wasn’t aware that yelling back was not a good solution. I later learned that quickly changing the subject would lead to a better outcome.

Another behavior I was later sorry for was that I corrected him when he said things that were either not true or else total nonsense. A geriatric social worker friend who saw this advised me to just agree to whatever he was saying unless there was some compelling reason not to – and, she added, there was rarely any reason not to.

Another example of total insensitivity was when he told me he was working at a bank three days a week and they hadn’t paid him a penny. I promptly answered, “No, you aren’t working anywhere.”

He seemed hurt and confused. After some thought I came up with a better response. I realized he was concerned about his finances, and I said, “Don’t worry at all, Ed. I’m taking care of all your bills.” He thanked me profusely, and he told me that made him feel much better.

A final example of what I later realized was total thoughtlessness was that I frequently asked him if he remembered some event or person.After months of trying to spark his memory of many events I realized this was a stupid mistake. Of course he couldn’t remember. If he could remember he wouldn’t have been in an Alzheimer’s facility.

I was proud of myself when I finally learned to stop all three of these ridiculous behaviors and interact with him on his level – not mine. It made me feel closer to him and it clearly made him more relaxed and contented.

 

When Your Loved One Is Ready for Hospice Care – And You Aren’t

Monday, February 4th, 2013

I want to share the experiences I had near the end of my beloved Romanian soul mate’s life. First of all, I was in denial. Even though Ed’s medical team at his long-term care facility told me it was likely that he would pass away within six months, I continued behaving as though he would live another year or two, or even more.

I did eventually overcome my denial and decided to call in a hospice organization. But the very word “hospice” scared me. I felt as if ordering hospice care for Ed would be tantamount to signing his death warrant. I knew that was ridiculous, but that’s how I felt.

I delayed the call for weeks, telling myself he didn’t need it quite yet. The truth was that I wasn’t able to deal with it quite yet. Seeing how weak and frail Ed was, I finally felt compelled to take action.

I consulted Dr. Doug Smucker, a colleague who was a family physician at the University of Cincinnati and who was specialized in end-of-life care. I had a lot of questions about hospice care, including whether I could stop it if I changed my mind later. (He told me I could stop it at any time, for any reason, and that if I changed my mind again I could resume the services.)

After answering all my questions, Doug looked at me kindly and said, “You know, Marie, the real question for the caregiver is how to help the patient have the highest possible quality of life in the time that is remaining.”

That completely changed my thinking about the situation. It gave me a new and positive goal – to bring Ed as much happiness as possible. It led me to think about all the special things I could do for Ed — visiting him more often, taking my little Shih Tzu to see him, having that violinist come back and play another concert, reading to him from The New York Times, and buying him even more of the stuffed animals he loved so much.

After that talk I spent many hours pleasantly thinking up special things to do for and with Ed. Once I got my mind off his looming death we were able to have a beautiful, pleasurable months-long conclusion of our life together.