Not there much; not much there

And just like that, though of course not at all just like that, Mom is not very communicative. Doesn’t display much of a personality. Barely vocalizes. Can’t seem to sit herself up in her chair. Rarely walks anymore. But does still have an appetite and eats her entire meal.

I am pretty sure, but not absolutely certain, that the span of time between my last visit and my visit today was the longest in the history of her illness that I had gone without visiting Mom. More than a month. As I was walking into the Alz center, I was thinking, people have told me I’m a good daughter. I don’t feel like a very good daughter today.

And yet, I don’t have much to offer. Or, more accurately, Mom doesn’t have much capacity to absorb the affection I show to her or the stories I tell her or the compliments I give her. That’s a giant rationalization, though. I’m a believer, in many instances, that something is better than nothing. Some human contact is probably better than no human contact for someone with advanced Alzheimer’s. The staff and other residents interact with Mom from time to time, but only I am completely devoted to her – when I’m there, anyhow.

She couldn’t seem to open her eyes for quite awhile after I arrived. I had intended to get there in time for lunch so I could feed her. Turns out I was early. Mom’s tray is on the second of two carts so we sat at her table and I rubbed her shoulders and arm and tried to encourage her to wake up. A table mate chatted with me from time to time, saying she liked my hair and my earrings. The last time I had visited at lunch, this same resident was very weepy and a little bit difficult. Today, she was calm and seemed content.

When Mom’s tray arrived, I started to feed her bites: pork with gravy, scalloped potatoes and cooked carrots. Red jello for dessert. Except for opening her mouth when the fork was within range, she remained unchanged. No shift in position, no real awareness that food was on the table. I praised her for every bite. She occasionally seemed to respond with a little smile and once, a laugh.

When she was finished, I tried to stand her up to take a short walk. I pulled on her arms and she said, “Ouch ouch ouch,” the same way she had after her fall before Christmas. I got behind her and tried to lift her, all the time saying I thought it would be fun to take a walk. “I don’t realize,” she said, before completing her sentence with nonsense words. It’s interesting to me how a negative experience can bring out some understandable words. I gave up and pushed her chair back toward the table. Her toe got stuck against the foot of the table. I pulled on her leg and she yelled out in pain.

A nurse came to check on her and took off her sock. No signs of an injury to the foot. She told me it takes two people now to get Mom out of a chair. She doesn’t walk much at all. After lunch, the aides put Mom to bed for a nap. That I knew. I don’t know what had come over me, to think about taking a walk. I have always been against the idea of pushing patients beyond their capabilities or their interests, because that is usually something a family member needs but it doesn’t necessarily benefit the patient. And there I was, trying to satisfy my need to see that Mom can still walk when she clearly had no interest in getting up. And no need to get up, either.

She can still tell when I am coming in for a kiss goodbye. But she opens her mouth. She doesn’t know how to pucker anymore. On the way out, the receptionist said Mom isn’t very with it anymore, but she’s a good eater. Eating might be the only pleasure left for her. Human touch and conversation, at least today, had no effect.

10 comments so far

  1. Becky Honeywell on

    Heartbreaking. I’m so, so sorry. It must be so hard, the feelings of helplessness. My mother, who was in early middle stages of alz., died last May of a heart attack.While the unexpectedness of her death -and the
    grief – were overwhelming, there are days I’m thankful she went so quickly. I miss her every day, but so much of her was gone years before she physically left us.

    I still read your blog, and share your pain – and your joy when you find it.

  2. Jennifer Knowles on

    The disease really is “The Long Goodbye”. It is brutal on those that watch the inevitable progress of their loved ones. I’m sure your Mom as my Mom would have never wanted to live this way. My Mom was always very vocal that she never wanted to live in a retirement home let alone skilled nursing.

    I have not seen “Still Alice” yet but will watch it when it comes out on demand. “The Theory of Everything” was brutal to watch but spot on with the debilitation. I cannot believe Steven Hawkings is still alive!!! It must be a different form of ALS in some way. My dentist also lost his brother to ALS and we are both perplexed with how long he has lived.

    Take care and keep writing. You are doing an amazing job!!!

  3. momsbrain on

    Dear Becky, I’m sorry about your mother’s sudden death. But I understand exactly how that can be a good thing for everyone, including the patient, as odd as it sounds. Prolonged living in such a compromised state is something I wouldn’t wish on anyone. Thank you for reading. I have had many joyful moments, and I wouldn’t be surprised if Mom is more perky next time. I won’t be surprised if she isn’t, either…

  4. momsbrain on

    Hi, Jennifer! I want to see Still Alice, too, definitely. I read the book a long time ago. I haven’t seen the Theory of Everything – though I am curious about it as well. It’s so unfair that your family has experienced two of the worst neurological disorders. Thank you for your supportive words!

  5. Laura on

    I’m so sad to hear this. She looked so alert in your last photo of her. I’m really hoping next time is better. xo

  6. momsbrain on

    Hi, Laura-I feel the same, that maybe next time she’ll pep up, and that I just caught her on a really tired day.

  7. foodhoe on

    awww, that is sad. It’s so hard to watch every little bit of their personality erode… But at least she has an appetite and can still walk on her own. My mom is out there too, but once in a while she looks at me and smiles, and that makes me happy.

  8. momsbrain on

    Hi, foodhoe! A smile does go a long way. Nice to hear from you.

  9. dementedgirl on

    Yes, heartbreaking. We started looking at care homes last month, and they were full of people in a similar state – a very hard reality check for husband and I… You ARE a good daughter.

  10. momsbrain on

    Hi, dementedgirl. I’m sorry you are experiencing that most difficult search for a safe place. I do not want to tell people how to feel, but I will just say that I think moving a loved one into a facility can be a loving act for everyone’s sake, and it’s OK if it offers relief for caregivers. There is no shame in needing relief. And thank you for your kind comment.

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