‘Life is life’

I have seen Mom three times in three days. And it has made me think that in some ways, the more often I go to the Alz center, the easier it is. It’s a very familiar place to me, of course. But going often like this took some of the dread away. It was an interesting little lesson for me.

I visited Sunday morning, shortly before lunch. It had been awhile, probably 10 days, since I had last seen her. At support group last week, I lamented the fact that I am letting so much time pass between visits. But I also felt compelled to admit it to the group for some reason. I always say I don’t feel guilty about having Mom in a nursing home and that is true. But I do feel guilty about visiting her less frequently. So I wanted to talk about that a little bit. “You probably just need a break,” one woman said. The doctor who runs the group pointed out that Mom has no concept of time so she is unaware of how much time passes between my visits. I know that is true, too. But this is about my choices, my behavior, and less about her. She might not be missing out on anything, but I think I am. I am sensing a downward slide on her part, I guess, and I want to be there for her for as long as that means something to her. Even when she is much more advanced, I know she will benefit from my visits, from a human touch and kindness even if she doesn’t know I am still connected to her. But I shouldn’t be wasting my own chances to experience her happiness to see me.

This is all relevant to how I felt about my visit Sunday. I found Mom lying on a couch with Mr. R sitting in a chair next to her feet. She even had a pillow. When I got in her line of sight, I smiled and said, “Hi, Mom.” She looked fairly blank. She did sit up, and I told her she didn’t have to. I apologized for waking her, and I assumed she had been asleep, because she seemed sort of distant. She didn’t seem happy to see me – or unhappy about it. Just very passive. “Where is your house?” she asked. I told her it was just a few miles away. And then we exchanged pleasantries and statements to each other that weren’t necessarily related to a specific topic or theme. I plucked some hairs from her chin, but I noticed that she seemed to have fewer hairs than in the past. I wonder if the hairdresser has worked on that. Mom’s hair looked nice, and I figured she must have had a recent cut. I hoped to be there when lunch started so I had an easy reason to leave, but it was late in arriving and I had to go to attend my own lunch – a gathering of support group friends who had participated in the research study that Mom participated in. The student and professor also attended. And two spouses – with Alzheimer’s – that I had heard about for some time were there. I was so glad to meet them, so I have a face to picture the next time I hear stories about them at group. So I told Mom I had to leave, and I just got up, hugged her and walked away. And she turned back to Mr. R, picked up the pillow on the couch, and put it back. I was forgotten.

I went back on Monday to talk to a nurse about expectations the staff had about an upcoming doctor’s visit for Mom. She was going to go out of the center to see a dermatologist about the persistent rash on her arm. I had thought I would go to the appointment, but I had been assured a few times that it was OK if I didn’t go. But I wanted the details just for my own information, and I wanted to let someone know I would be bringing Mom a new pair of shoes because her Crocs and another pair of shoes are all missing now. The nurse didn’t have much information in the chart, and transportation hadn’t been arranged yet. Apparently they have a squad take residents to outside doctor’s appointments, but an aide goes along as well. I got the name of the doctor, but by the time I had to leave, we still didn’t know where the office was. I looked it up later and found it was way out on the east side of the city, so I decided that for sure I wouldn’t go along. This visit was brief, but while I was standing at the nursing station, Mom came up to me and hugged me. She had spotted me and came to me specifically to say hi and hug me. So that made me feel better about the Sunday visit. I couldn’t stay long because I had my own doctor’s appointment to get to, but I was cheered by this visit.

And then I went back today, the day of the dermatology appointment, to deliver some shoes. I found some knockoff Crocs at a drugstore and thought they would do the trick for a one-time outing. They were a different style from Mom’s old Mary Jane Crocs, and I’d like to get her more of those. I took them in during my lunch hour today. I went to the nursing station and dropped them off. The nurse confirmed Mom was scheduled for a 2:30 pickup and a 3:30 appointment. I confirmed I would not be attending the appointment. I saw Mom walking around, and I positioned myself in her line of vision and she came up to me again to hug me. And she seemed tickled to see me. So we started walking toward the lobby, and then we turned around and went back to the program area. We pulled up chairs together and sat for a short while. All this time, Mom was speaking in short sentences that seemed to indicate her pleasure with the turn of events. And as we were sitting in the chairs, she said, “Life is life.” And I said, “That is so true. Sometimes it is good and sometimes it is bad, but it’s always life.” We had a few laughs. She said she tries to be nice, and I said she IS nice and funny, and that so many people like her, and she made a hilarious face, as if she were all puffed up by that news, and we broke up laughing. And then lunch arrived and I sat with her briefly until Mr. R joined her and then I slipped away.

I got a call from an aide at 3:12 today. When I saw on caller ID that the Alz center was calling, I guessed that something had gone wrong with the appointment. Mom had balked at sitting in a wheelchair to be taken to the squad to be transported to the dermatologist. Many staff tried to convince her to go. Even the center administrator gave it a try. But they don’t believe in forcing their patients to do something, especially when they are putting up strong resistance. So they canceled the appointment. I felt sad that Mom had probably been scared. I felt discouraged that she missed the appointment. I felt guilty that staff had to endure that (though I know it is not a big deal to them). I will check in with them again to see if we should reschedule, and if I should take her. Thankfully, the rash has gotten better. So it can wait, I think. This is as good example as any that life is life.

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4 comments so far

  1. Lisa Gurney on

    I loved your blog entry. It is so interesting that we are going through the opposite struggles…I am trying to go to the home less, and you are trying to go more. Which one helps? Which one is “right?” There just isn’t a pattern or a blueprint.

    Thank you for leaving a comment on my blog. I HAVE come to know and love many of the residents at the home. What I need to do is focus on the positives that I have there…the enjoyment I get at doing the activities with Ma, conversing with the people. Thank you for reminding me of this.

  2. momsbrain on

    Hi, Lisa. I hope it didn’t feel like a lecture. I just feel sad that you are struggling so much, and wanted you to know that even with all those difficult feelings of hopelessness, anger and despair, there can be other emotions, too. Believe me, when Mom first got sick, I was mostly mad – at nothing in particular. I feel fortunate that I have turned that around for the most part. But it was not. easy.

  3. Sherri on

    I think the reason you feel guilty so often is because you have always been a conscientious person. You did all you could – and, like you basically said, the day was just what it was – the outing did not work out that day – might another. That is how life is – good and / or bad. I’m sorry that your mom probably felt a little scared, though.

  4. momsbrain on

    Hi, Sherri. Thanks for the support. The good thing is, if Mom felt scared, it is long forgotten. And also, her rash is totally gone, so maybe she doesn’t even need to be rescheduled.


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