The scream

I visited Mom Tuesday when I was in her neighborhood after getting a haircut. When I arrived, I stopped and talked for awhile with the daughter of Mom’s roommate. In November, the roommate had what now is called an “acute episode,” and we all thought she was close to death. She is still with us, with the major change since then being that she now uses a wheelchair all the time. She can stand up, however, and she taps her hands to music, and she eats sometimes but not always, and her face still shows expressions of recognition and interest. It’s a tough thing to understand. Her daughter goes to the Alz center every morning and at lunch time, mostly to reduce the burden on staff who otherwise would have to feed her mom. She is going away for the weekend, and it will represent the first time since around Thanksgiving that she has gone two days without visiting her mother. It’s really amazing.

And then I was off to check in with Mom, who was in a chair with her legs hoisted over the side. Mr. R was on the far side of a couch just a few feet away. I wondered if they had had an argument. I said hi to him, but he ignored me. I sat across from Mom and chatted with her. The bruise on her head was gone. She looked pretty good, though her clothes were covered with food stains. At one point, she looked in Mr. R’s direction and said, “Hey, Pete. Pete.” He didn’t respond. His name isn’t Pete. A little while later, she said, “My husband. Bill,” while looking at him. No response from him again. His name isn’t Bill, either. The funny thing is, I am pretty sure Mom has never known Mr. R’s actual name. I’ve never heard her use substitute names for him before this.

A visitor was playing piano and singing, and I offered to take Mom over to that area to listen and maybe even sing along. We stood in the general area of the music, looking for seats, and two aides came up and noticed that Mom’s clothes were dirty. “Let’s change you,” one of them said. One went off to get a new outfit for Mom – a blue T-shirt and blue-and-white striped pants – while the other took her hand and started leading her toward the shower room. Mom took my hand on the other side, but we eventually got separated by a table. I didn’t realize until later that Mom had an inkling that she was going to the shower room and she did. not. want. to. go. there. The aides got her into the room, and an activities staffer came up to talk to me while I waited outside the door. I told her I hoped the aides hadn’t decided to change her for my benefit. I didn’t really care that she was dirty. But she said they make the rounds and take residents in as needed. And then I heard a scream. A high-pitched scream, from behind the shower room door. If I hadn’t known it was Mom, I never would have guessed it. In her old life, she might yell and swear, but I had never heard her scream like this. The activities staffer told me it’s not uncommon to hear Mom do that, as well as others. Lots of residents don’t like being changed – the nudity might bother them, or the touch of a stranger’s hand, or the feeling of water on their skin, or especially any cleaning of the genital area – many Alz patients cannot stand it.

Mom surfaced from the room in new clothes and walked quickly away, toward the lobby. I thanked the aides. I said I hoped she just screamed and didn’t fight. “She kicks, bites, scratches, hits, whatever she can do,” an aide said. “It’s our job. It’s OK.” I was just shaking my head. “She’s special. I like her,” she then said about my mom. I also asked about how Mom’s incontinence is – and how her bowels behave. She had just had a very long pee and a big bowel movement on the toilet, they told me. One of the aides said she can see it in Mom’s eyes when she needs to go the bathroom. And apparently Mom can still hold it, for awhile, anyway. I don’t know all the details about this, actually. The aide who likes Mom then also told me, as we watched Mom walking barefoot down the hall, that the visiting podiatrist had tried to treat a callus on one of Mom’s feet, but she fought against that, too. He did manage to cut her toenails. He thinks the callus must hurt. But Mom never wears shoes anymore, and doesn’t often keep her socks on, either. And she still does a lot of walking. It made me wonder again about the twisted signals in Mom’s brain. Maybe she doesn’t feel pain. Or she doesn’t know it should be bothering her, or how to avoid it.

I found Mom sitting in a chair in the lobby. She seemed calm, and I’m sure she would soon forget the trauma of the shower room. I bent over to hug her. She was not very responsive. Her neck smelled clean, like maybe the aides had given her a quick rub-down with a washcloth. I told her I was going back to work, and she said, “OK,” and she sat quietly, not even really noticing that I was leaving.

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3 comments so far

  1. patwhite67 on

    Emily,
    I am so glad to know that Peggy took a brief break from being with her mom. I don’t know how she has done it, going both breakfast and lunch.
    Thank you for sharing the thoughts about your mom. You know, when you were talking about how sensitive she is to — as they say in the south, ‘being messed with’, that is something my mom does not like at all either. I found out she actually hits at the little aide who subs for Linda, her regular nurse. It’s like our mothers are here for the most part in appearance, but personality wise much has changed. Pat

  2. Judy on

    Nudity doesn’t seem to bother her. Each time she has fallen or lingered in the bathroom she hasn’t had clothes on. I put her gown on and then get my sweet man to help her up. Shower is problematic at times but she enjoys having her hair shampooed. I also changed the shower head to one that has a gentle flow. Another cyber hug. Judy.

  3. momsbrain on

    Hi, Pat – I agree about Peggy. I feel like I’m hearing that more and more patients have problems with hygiene assistance. And it’s hard to blame them. What a vulnerable situation they are in. But hitting, kicking, biting – ugh, it is sort of distressing to hear about, even though I know it’s the disease doing that.

    Judy – My mom was always OK when I showered her in assisted living, but that was two years ago now. I don’t know if she would consider me a familiar face anymore. The nurses told me about a year or so ago that something about the sensation of water bothered Mom in the shower. But she gets her hair washed by the hairdresser – I wonder if that feels less risky somehow to Mom, and more soothing. I’m glad Chrissy doesn’t give you a hard time about this particular task!


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