Jun 24, 2011

Alzheimer's Off the Top of My Head -- Dotty, Radio, and the Next Steps

One thought that did come into my mind today is that there are a lot of Alzheimer's caregivers out there. We are everywhere.

By Bob DeMarco
Alzheimer's Reading Room

Right now Dotty has a headache and she is looking very dull. "Not there". Yesterday was a good day, clearly "more there". I'm riding the Alzheimer's emotional roller coaster these days. Don't get sad, it goes with the territory.

Yesterday, I was interviewed on the radio by Mary Reichard. Wow. Mary is really professional and she is one of us. Mary's father, Dr. Bill Sunderwirth has Alzheimer's disease.

Mary of course understands what it is all about. She asked great question, I hope the listeners benefited from my answers. I did get to mention what I now believe is the most important thing I can say, continue to live your life. Don't stop. I am thinking about this quite a bit this year.

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Before the radio interview, I listen to an interview of Mary and her mother, Karen, on the Internet. It was very real. I wish we could hear more Alzheimer's caregivers on the radio, hear them speak in their own voice. Karen Sunderwirth said a couple of things that moved me.

When asked if she found it hard to ask people for help she said,
"Yeah, because they're busy. They have a life of their own, and you feel like you're infringing on somebody else's life, and this can be a hard thing."
Sound like anyone you know?

Later Karen said,
"He likes people, so I try to make ice cream and have people over so that he has a good time, and I enjoy it. It's extra work, yes, but it's no more stressful than sitting around looking at each other, so I'd just rather do something, so I can do that."
I liked hearing this. Honestly, it made me feel rather emotional. This is the way to go in my opinion. If fact, I think I am going to follow her lead. I am not much of an ice cream eater myself, but, it just seems that ice cream is an integral and important part of Alzheimer's caregiving.

You can read and listen to the interview of Mary Reichard and Karen Sunderwirth here, Coping With a Spouse's Diagnosis.

Overall, I felt like I did a decent job on the radio show. I can say this, I am not as sharp as I was back in my Wall Street days. Hanging around here with Dotty has lessened my communication skills. I did get a little lost a couple of times. I really failed to put in the hook.

After thinking about this over night, I decided I need to do a few things. First, I am going to need to start making a series of short videos. This will help me sharpen up my communication skills. I won't scrip them, I'll do them off the top of my head.

Second, I have the technology to allow you to make a podcast. All you do is dial a telephone number and start talking. Perhaps some of you would "volunteer" to tell us a story. Or, maybe talk with your loved one and record the conversation via the podcast technology. After listening to Karen, I now believe that we need to start giving voice to Alzheimer's caregivers. It really is quite powerful. If nothing else we could reinforce this -- You Are Not Alone.

Third, I need to figure out how to use YouTube more effectively. I could do a call in show of sorts. You call in, we yak and it all gets recorded. In the first version the viewers would only get to see me.

One thing I like about being interviewed is that it really energizes me. It also gives me new insight into what I am thinking. I don't have anyone here to bounce my "ideas" off of, and this is something that really helped me crystallize my thoughts in the past.

One thought that did come into my mind today is that there are a lot of Alzheimer's caregivers out there. We are everywhere. Before I am through I want to talk to every one of them. After yesterday's interview, I am off to a good start.

More Insight and Advice for Caregivers

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 2,680 articles with more than 512,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room