Unhappy anniversary

I was already planning to write a post today because it is the 9th anniversary of Mom’s Alzheimer’s diagnosis. Nov. 3, 2005. I remember much of it well; other details, not so much. Mom, my sister Laura and I visited my coworkers after the appointment because my office was right across the hall from the neurology clinic at the time. What a surreal scene, Laura and I numbed by the diagnosis even though it wasn’t necessarily a surprise. And Mom probably just going with the flow. She hadn’t had a strong reaction to being told she had symptoms of dementia and that her condition closely resembled the Alzheimer’s type of dementia. None of us cried or anything. Just a lot of nodding our heads.

And then NPR announced the death of Tom Magliozzi of Car Talk, from complications related to Alzheimer’s. That really makes me wonder what happened. He and his brother retired just two years ago. It strikes me as so unexpected for someone who is only 77 years old (Mom’s age, too) to die of Alzheimer’s so soon after ending a highly visible professional life. Could it have been pneumonia? He could have fallen and had a brain injury. Maybe had difficulty swallowing and choked? I really want to know even though it certainly is none of my business. And as I said on my Facebook page: “If one is going to have Alzheimer’s, I believe that less is more. He is free.” It’s terribly sad to know such a robust radio character experienced this terrible disease. And yet, he and his family have been spared the prolonged agony of a very slow decline. Considering his death is a shock and a difficult loss for so many listeners, the news spread quickly over social media. And of course I personalized it: His brief Alzheimer’s experience made the reality of Mom’s illness that much starker as I ‘observe’ the anniversary of her diagnosis.

Mom is still imprisoned, still a blank slate, but thankfully still apparently at peace. I had hoped to visit her over the weekend – I took a vacation day Friday with thoughts that I would visit but didn’t even get out of my pajamas for a shower until 4:30 p.m. Then yesterday I was determined to go, but I felt a little sick. Today, with the anniversary at the top of my mind, I felt such urgency to see her that I went to the Alz center before work, arriving around 8:15. On my way there, I had my usual thoughts: Could she be dramatically different since I saw her last? Is she still content? Will she respond well to my presence?

I found her sitting in a chair near her room. She was sort of out of it – tired, I assumed. Still waking up. I recalled the aide who said during my last visit that Mom doesn’t like to be rushed in the morning. I rubbed her arm and head and just sat with her. An aide came to get her for breakfast, and she and I heaved Mom out of the chair and led her to a table. She seemed a little miffed but kept shuffling along as we held onto her arms. We sat together waiting for her tray. An aide asked if I would be around to feed her, or did I need to get to work. I opted to stay. I still think of Mom as able to feed herself, but I’ve been told before and again today that aides like to help Mom eat to prevent clean-up of the enormous mess she makes. “I like to make sure she gets her nutrients,” an aide said today.

And so, I fed Mom her breakfast: French toast, a boiled egg, cereal and juice. She ate every bite. The dietary director has told me a number of times that Mom likes to eat dry cereal. But I poured milk over it and fed her bites that way, and she had no complaints. I praised her repeatedly. She was passive for most of the meal, but by the time I was giving her a final drink of juice, she was laughing at me. A little fuel was all she needed to become her usual self. I enjoyed our time together. I’d like to be there more, to help with her meals. It’s a pleasant way to spend time with her – a little bit intimate, in some weird way – and I’ve anticipated that I’d want to help the staff as much as possible once she needed help with eating. It will be interesting to see if I can pull off more frequent visits at mealtime.

4 comments so far

  1. Laura on

    That is nice of you to feed Mom. I wonder if she would let me when I visit??

  2. momsbrain on

    I think she absolutely would let you. She hadn’t seen me in several weeks, and I don’t typically feed her. She sees the fork coming and opens up.

  3. Lesley Austin on

    Hello Emily,
    I haven’t visited here in quite awhile, but today is the second anniversary of my mom’s death and when I visited my old blog, I saw the link to yours. Of the three other women linked there, you are the one still in the midst.

    I am really just writing to send you love and support for your continuing care and the sharing of it. And I am glad you brought up Tom. M. Many of us who have lived or are living with Alz. must have had the same wonderings and thoughts.

    Hope you are having a peaceful day today,


  4. momsbrain on

    Hi, Lesley-Thank you so much for checking in. I just read your blog’s latest post. I am glad you find happiness in the memories even though I imagine many are bittersweet. Your blog has such an airy feeling about it – very calming and gentle. I appreciate that. And thank you for the love and support! As you know, a caregiver can never get too much of that. I found it very interesting that you thought your caregiving relationship with your mother would be longer but that you were OK with its brevity for everyone’s sake. I had the opposite expectation – that by now, my mom would no longer be alive. Her progression stalled for years. Now I am seeing some physical decline – mostly just a slowing down of everything she does. But I don’t really have expectations anymore – I’ve just got to go with what happens for as long as she lives. I’m grateful for her generally good mood since she is enduring this illness for so long. And I know several people who endured it, or are still in the midst of it, for longer than Mom and me. I just didn’t expect her health to be particularly good because she smoked for years and was fairly sedentary. But physically she is in pretty good shape. And so, we carry on. Take care-Emily

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