Don’t assume anything

At support group last week, and at many support group meetings for that matter, we talked about how different Alzheimer’s is in each patient. The doctor who runs the group likes to say, “When you’ve seen one case of Alzheimer, you’ve seen one case of Alzheimer.” (He declines to call the disease Alzheimer’s.) So we are able to find lots of common ground in support group, but we also find that each of our loved ones has some particular behavior or pattern of disease progression that is completely his or her own.

I said during the discussion that my mom’s disease strikes me as very weird. She scores a 4 on the Mini Mental exam. The maximum score is 30, I believe. A score of 4 suggests very little remaining function. Yet Mom can still eat, and walk, and go through the motions of conversing, and respond to some verbal cues to, for example, put on a pair of socks. And maybe can still take some verbal guidance for dressing and grooming and going to the bathroom. I said that with her test score, it seems like she should be immobile, or nonverbal, or both, or something close to that. “And I get this feeling it’s going to be a long time before she is any of those things,” I said, based on how Mom has maintained at a generally stable level of function in the year she has been at the center.

After the meeting, the social worker running this session pulled me aside. I had missed the most recent care conference because of a conflict with work. And I hadn’t yet picked up the notes. She told me that at the conference, staff members noted that Mom has begun to drift away from Mr. R at times. Perhaps it’s withdrawal of some sort. She is not necessarily gravitating toward others. And she said Mom’s ability to talk had become more impaired, that it is little more than “word salad” at this point. Word salad. A very interesting description. It’s true, I haven’t had an actual conversation with Mom for months and months. But sometimes she can still mimic the behavior of a conversation, asking questions and giving responses to questions, even though little to none of what she actually says makes sense. It was a bit of a blow, to be told that right after I had said out loud that I assume Mom has an indefinite period of verbal communication ahead of her. I have no false illusions about her status – I never take negative news about her disease progression particularly badly, because steady decline is to be expected. What I felt instead was a little bit of embarrassment, I guess. Though no one in support group or on the staff would judge me for what I said about expecting Mom to linger in a stable state for a long time.

I actually checked in with Mom after support group to drop off six pairs of socks for her. I took them to the nursing station, assuming Mom would be in bed. But she was in a distant corner, lying on a couch with her eyes closed, with Mr. R sitting in a chair at her feet. It was 8 p.m. The last time I had been back there in the evening, at 7 p.m., Mom had already gone to bed. I went over to the couch and said hi to Mr. R. “That’s my baby,” he said, pointing to Mom. Mom opened her eyes and sat up to say hello. I put a pair of socks on her and apologized for waking her. She was in her usual good spirits, but said a number of things that did not make sense. Mr. R also was talking, but about what, I am not sure. I didn’t stay long. When I began my goodbyes, he asked me to kiss him. He pulled me in for a little embrace, and I kissed his cheek. I guess he is friendly and frisky in the evenings.

Tonight, Wednesday, is support group night. I am a fairly regular attendee, but I ended up skipping the meeting this week. Had dinner with a friend instead – a support group of a different kind, for both of us, I hope.

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4 comments so far

  1. Jennifer Jayhawk on

    I was not familiar with the 1 to 30 chart. I don’t know your Mom but her pictures always look great. The fact that she is a 4 makes it even more stunning.

    We had Home Health Care coming in for my Mom. She loved it! She had a nurse two days a week and physical therapy two days a week. She improved so much she was dismissed from the program. She was now free to drive again!!! She got in her car and headed to the grocery store. Ran into several friends of my brothers, from way back, in the grocery isle and throughly enjoyed herself.

    I guess I am on the opposite end. How is it this almost 91 year old woman, is living on her own and still driving???

    A friend of mine, who’s sister has early on set Alzheimers and is caring for her 90 year old Mom in addition, said that the “early on set” progresses more rapidly. I did not know this. My Mom is all over the ballpark on any given day. You just never know who or what you are going to encounter.

  2. momsbrain on

    Hi, Jennifer. I think what you describe is a perfect example of how different the disease is in each person. And how the aging process itself is different, too. Living to 91 is quite a feat in itself! My mom’s disease doesn’t count as early onset, I don’t think, because it hit at just about age 65, and I think that is a cutoff. The decline has been steady, but not dramatic. But she is definitely seriously impaired now, and is living in a world of her own. I was pleased that when I visited her yesterday, she hopped up to give me a big hug, so she still recognizes me. Take care!

  3. Jennifer Jayhawk on

    In a blink of an eye things change.

    My Mother in Law went to an emergency room a week ago with stomach flu symptoms. She is now on life support until my husband can get there. He wants to be there.

    I am now trying to figure out what to do with my Father In Law. They were married, then divorced, and then living together. They had Wills drawn up but never signed them!

    The cobblers children has no shoes. My husband is an attorney. We have not done the paperwork either.

  4. momsbrain on

    Oh, Jennifer, I am so sorry to hear this. Does your husband have siblings?? Seems you have your hands full… It’s true, things do change so quickly. And for the record, my husband and I have not done any of this paperwork, either. My mom did her will about 12 years ago, but I did a living will/advanced directive with her when I was getting a power of attorney. Thankfully, she was all for it at the time even though she was already impaired.


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