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?

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3 comments so far

  1. Becky Honeywell on

    Hi – just again, want you to know how i look forward to your blog posts. Your mom is more advanced in her Alzheimer’s then my mom is right now, but so many of the behaviors are similar. Mood swings, not eating, etc.
    Thanks so much for sharing your journey.

  2. sayte mccomb on

    Emily, I am still reading your posts as soon as your write them. We may have difference circumstances, but we share so many of the same “ups and downs”, the same questions that hold no concrete answers. Your words often bring me new avenues of thought, when new roads are much needed. Other times you give validation to the confusion I am trying to validate and make sense of. Earle was here last week, visiting for our Moms 95th birthday. My brother is a shining star for me in all this, and I have a feeling yours is for you also.

  3. momsbrain on

    Becky, Thanks so much for reading the blog; I hope it might help with the occasional insight about what to expect – though every case is different… I tend to think the early stages are harder for everyone as the patient and family figure out what works best. The later stage is definitely sad, but I do tend to think Mom is at peace because she is unaware that her brain is so compromised. I hope you are doing OK with your mom’s illness, and that she is doing OK.

    Hi, Sayte! Nice to hear from you. I do think there is a universal caregiving experience for any disease and/or aging experience, and then lots of individual components. Ups and downs – that sounds universal! I’m not sure what prompted my most recent series of questions. Sometimes I think I know everything there is to know about Mom’s illness – but really, there is very little I will actually ever know about her mind and what is in there. Earle had mentioned there was a milestone birthday coming up, but I’m not sure I realized it was 95. Incredible. I hope you all had a nice celebration. Take care…


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