It has become pretty clear that I don’t visit Mom very frequently these days. I don’t write about every visit, so I see her more frequently than I blog about her, but it’s fair to say that on occasion, I let a significant amount of time pass between visits. I don’t think I would say I am avoiding Mom. When I’m with her, we laugh and smile and chat and walk and hold hands. I give her little massages and run my fingers through her hair. I examine her and, for so long, I’ve seen nothing that causes alarm because her status has been stable. What I’m avoiding, I’d say, is what follows: Every time I leave the Alz center, I choke up on the way out the door. I rarely produce real tears, but without fail, I say, out loud but to myself, “Oh, Mom.” I think about what could have been if she hadn’t gotten sick. I wonder if she comprehends anything I say to her. Now that I am middle-aged and sense that I am like her in many ways, I miss talking to a mom who has a thoughtful response based on her own experiences.

This avoidance is also behind my reduced blogging, I suspect. While the reflection on Mom’s life and illness has done me a lot of good over the years, it also can be taxing. And it can hurt. And so, over and over, I let another evening go by without writing about Mom.

I was wrapped up earlier in August with the fact that as of Aug. 28, Mom would had lived at the Alz center for five years. Five years. Seems incredible to me. For days and days, I knew the anniversary was coming up. And then it came and went without any notice from me. I couldn’t believe it when I realized that. I may have been especially looking forward to the long Labor Day weekend. Maybe busy at work. But it didn’t occur to me that the anniversary had passed until I went to visit on Labor Day, Sept. 1.

I wondered if that was something else to avoid – the mixed emotions I have about Mom reaching a five-year anniversary in this nursing home. I hope it’s become clear that I don’t wish that she would die. But there is little joy in an anniversary related to a prolonged existence like this, even if she can laugh and dance and enjoy her meals. The good thing is, of course, she doesn’t know she is living under terrible personal circumstances. But I know. Every day, and every night.

I find her stability mostly bewildering – how can it be that her decline has been so slow for so long? That for so many years her brain’s slate has been “wiped clean” as I tend to put it, as far as memory and clear thinking are concerned, but her physical functions persist? The most evident change is the loss of words despite her constant vocalizing. Some words still slip out, but rarely. Whenever someone asks, I say she can walk, talk and feed herself. She shows signs of enjoying social interaction with me and others. She still cracks herself up, or laughs at something I say or do. Her default setting is content for the most part. Even her combative approach to showering and hygiene has tapered off.

An aide told me when I was there on Labor Day that he has Mom figured out: When she wakes up in the morning, she doesn’t want to be rushed. She needs to sit up on the bed and collect herself, shake the cobwebs out, before she wants anyone helping her stand, go to the bathroom and get dressed. He is also the aide who, in the past, said that when Mom was angry in the shower and yelled “I hate you,” he would reply, “I love you, Bonnie.” The Alz center staff is so terrific.

So, I’ve stopped avoiding long enough to mark this occasion, the start of Mom’s sixth year at the Alz center. One can only guess what it might bring.

8 comments so far

  1. Laura on

    Good post, Emily!

  2. momsbrain on

    Thank you, Laura! ❤

  3. patwhite67 on

    I felt so sad for you, again, reading this article. No one else understands the loneliness of a daughter without a mother unless they walk the path too.

    Emily, I send my best to you. Pat

  4. momsbrain on

    Aw, thanks, Pat. I certainly won’t know how it feels until she’s physically gone, but I have a certain resentment about the fact she is here but not available to me – as selfish as that might sound. Resentment at the disease, of course, and not her.

  5. dementedgirl on

    I too have taken to visiting MIL less regularly – she is still living “independently”, but I have had to take a step back for my own sanity…

    Don’t beat yourself up about it…

  6. momsbrain on

    Hi, dementedgirl. I try not to give myself too much of a hard time. I’d say the same to you – and when patients are still independent, it can be a much bigger challenge. At least it was in my experience. Thank you for commenting!

  7. sandy on

    Momsbrain, I’m with you. I find it to be quite disheartening to visit my mom, I try to see her twice a week, but she doesn’t recognize me at all which just makes me feel sad. Now that she is in a wheelchair, she sleeps most of the time and has become slack jawed. It kills me seeing her like that, so I don’t stay very long and beat myself up about it.

  8. momsbrain on

    Hi, Sandy. Twice a week is impressive in my book. It’s the bane of the caregiver: we can never do enough – or at least that’s how we feel, anyhow. Just another part of Alzheimer’s that is Not. Fair. Take care.

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