Archive for January, 2014|Monthly archive page

Some self-promotion as I mark 5th blogiversary

First, may I just say that today is the 5th anniversary of the start of this blog. I’m glad I remembered this year on the actual day. Thanks so much for reading and commenting and supporting me.

I’ve had the interesting experience of being interviewed twice recently for stories about caregiving or Alzheimer’s. About a month ago, a writer for the website Caring.com sent me questions in email for a story, asking me about how blogging has helped me in terms of creating a community and offering me a source of reinforcement and support. The site is one that has recognized this blog, having deemed it one of “18 Great Caregiver Stories on the Web.” The story appeared online without any warning, and I knew only because my stats indicated a few visits to the blog came from the Caring.com site. This is my favorite passage: Writing her blog has also proved therapeutic, Caldwell says, allowing her to forgive herself for mistakes and gain insight into her emotions. “Writing about these experiences has been a way for me to support myself, in a way — to say ‘out loud’ what I think and feel and not apologize for it.”

And then, my colleagues at the university medical center produced a video story for release yesterday about a new self-administered test developed by an Ohio State neurologist that gauges cognitive function – and can be used repeatedly to detect changes over time. The doctor who created the test diagnosed Mom and treated her until she moved into the Alz center, so I am a big fan. When these video packages go out, many news stations run them as is. But the local CBS affiliate asked for a family member of an Alzheimer’s patient who could talk about the test and its potential value for other patients and families. My colleague (and longtime friend from college) asked me if I would be willing to be interviewed, and I did not hesitate to say yes. It turns out the national network asked for the local station’s video, and, lo and behold, today there I was in a video appearing on the national network’s news site. Apparently, this video – a combination of the package produced by the medical center and its partner production company and two short segments of the local video of my interview – was picked up in some other markets, including CBS in New York City. Gulp!

The most important piece of information is the existence of this test, which anyone can take at any time. A whole newsroom devoted to the story is online here if you’re interested to know more. But then there is my participation, which – what can I say? – tickles me. During the interview, I showed the videographer and reporter several photos of Mom and even videos from this blog – and they used quite a bit of that. It’s a real treat to see Mom’s images make up so much of the story, to show a real person with not just a disease, but a history and a current life that I and others try to make as worth living as it can be.

I definitely hope this blog helps lift others who are beleaguered by the caregiving experience, that it helps others know they are not alone even if caregiving feels like a very lonely experience. But there is no denying it helps me, too, as a therapeutic tool and, come on, I’ve got to be honest, it is a vehicle through which I get attention as a writer, as a caregiver, as someone who is rewarded by the interaction that results from the blog’s existence. And so, being considered a worthy source for a TV news story about Alzheimer’s is rewarding, too. With that confession, here is the CBS story. (It takes a moment for the video to load, and of course there is a commercial first.)

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Care conference, etc.

After that weepy Christmas party, the rest of the season went well. I saw Mom again on Dec. 20, when my brother Jeff came from New York for a quick visit to Columbus. I took the day off of work, and he and I spent some Friday afternoon time with Mom. She chattered on and we walked up and down the hall. Her mood seemed good. Mom held Jeff’s hand. I enjoyed seeing them together.

Mom and Jeff

I checked in on Mom the other day before a quarterly care conference. She wasn’t in a terrific mood. When I sat down beside her, she called me an idiot. And then she said some more things, and motioned toward the corner of the table as if she were placing something there. (I think she hallucinates; she often acts as if there is something in her hand that she wants to give to me. The activities director said she has seen Mom do the same thing.) I placed my hand on top of whatever it was that Mom thought she put on the table. And she very forcefully said, “No. No. No. No.” I’ll never know what that was all about.

She would look at me forlornly. She may have cracked one brief smile. So I left her in the program area and joined the staff for the conference. I talked to an activities staffer on the way out of the program area and she asked me how things are going. “Mom called me an idiot,” I said. And she replied, “She calls it how she sees it.” And I laughed. At that moment, me being an idiot was Mom’s reality. And it was funny.

I learned in the conference that Mom’s weight is stable. She is eating less – 50 to 75 percent average intake of her meals, which is a drop. But she gets high-calorie cereal twice a day and ice cream as well. “I won’t give her the high-cal cereal in the morning because she loves her dry cereal,” the head of dietary said. She has told me that many times, that Mom enjoys eating dry cereal at breakfast. Mom sometimes needs some coaxing to eat now, but there doesn’t appear to be anything resembling a serious loss of the ability to feed herself. My experience lately has been that Mom is easily distracted during meals, which could interfere with her focus on feeding herself and with her interest in eating rather than doing something else.

She still likes music and enjoys seeing children from the attached daycare when they visit. She might be convinced to dance, but that is rare. She calls the activities director ‘Emily’ sometimes.

I had a call recently about Mom receiving an intravenous infusion of Reclast to prevent osteoporosis. A nurse called before to inform me about it – I said fine, as long as Mom doesn’t fight too hard against the needle – and then called me again afterward to report that Mom did really well with the treatment. Mom actually leafed through pages of a magazine. I got the feeling based on the descriptions I heard that many staff members help in entertaining the residents during this treatment.

The nurse also asked me if Mom has a sister. “Yes, Nancy,” I said. And she said that was the name Mom was using to mention her sister. That seemed amazing to me – a moment of retrieval that I would have liked to experience. I visited my aunt, uncle and cousins just a few days later and told her Mom had talked about her. I took a selfie of Nancy and me. Some people think I look like her.

Nancy is also a caregiver. She takes care of my uncle, who has had lots of cardiovascular problems.

Nancy is also a caregiver. She takes care of my uncle, who has had lots of cardiovascular problems.

Hearing Nancy talk reminded me a bit of Mom. They both have the same slight accent.

I’ll try again with Mom another day, and hope she is in a good mood. That is partly about my feelings, but really mostly about her. I just hate to think of her feeling any hint of misery. Her inconsistent response to me is probably not something I should try to analyze. But I do wonder – is there any chance at all that she misses me, or does interacting with me just tire her out? Or neither? Could it possibly be both? I’ve convinced myself she has no awareness of the passage of time between my visits. But what the heck do I really know for sure?