Archive for April, 2013|Monthly archive page

The power of touch

As I sat next to my sleepy mom during my most recent visit, a resident nearby wailed from her wheelchair. I didn’t recognize her. I was sort of surprised Mom wasn’t bothered by the noise. Sometimes she doesn’t like a lot of extra sound. Soon, another woman sat down next to her. “You’re alright,” she said gently. And out of the corner of my eye, I could see she was stroking the woman’s arm and hand. And she quieted down. The resident looked young. I wondered if the visitor might be her sister instead of her daughter. I didn’t want to stare. Based on what I could overhear, this resident had just moved in recently. She seemed to be sick enough that she might have been in another facility before the Alz center. But maybe she was experiencing some fear or agitation about the new location. It’s hard to say. Her cries made me sad, and reminded me of the relief I feel about Mom’s content nature. I was glad the resident could be comforted by the touch of her trusted relative or friend.

Meanwhile, I rubbed Mom’s arms and then her shoulders, sort of awkwardly from a chair next to her. When she and I lived alone together when I was a teenager, I used to give her back rubs quite often. She seemed to respond to my gentle touches, nodding her head forward and closing her eyes. It was after lunch, and I had predicted she might be sort of tired. I knew she had enjoyed her food – I had noticed little dark specks on her lips and fingertips, and later saw that dessert had been blueberry pie. It didn’t take long until she seemed to be fully asleep. She had chattered a little bit before she dropped off, but she was so drowsy. I watched her for a little while and then got up to leave.

I passed a table in the program area and found myself looking at a woman I thought I recognized – but I couldn’t figure out who she was. And then I noticed the back of the head of the man sitting next to her, and recognized one of my support group friends. Finally, he had moved his wife to a facility, after having her at home with him for about 13 years. I am opposed to ever saying, “You should…” to anyone when it comes to dealing with dementia. But I always encouraged him to give strong consideration to moving her to a facility, for her sake and for his. To keep her safe, and to restore his health. Or at least I would say, “There is no shame in doing that.” I told him I hadn’t been to support group in awhile, and he said, “I know. You should come. You have important insights.” I have a soft spot for this guy.

I sat down between him and his wife. She looked great – she is such a doll, and very easy-going. She nodded off for her own nap, and I sat and visited with my friend for almost an hour. One of his kids is having a tough time with the facility – she is not very satisfied, I guess you could say. It is such an adjustment – for some people, the care can never be good enough, no matter how good it is. Especially when family have spent 13 years taking care of someone. I hope they can stick it out until they have developed faith in the Alz center. Even now, he spends at least six hours a day with her. I’m not sure how much that is doing for his health. I know he is glad his wife is safe. He said as much.

Since I had been at the center for so long, I went back to Mom and found her awake. I encouraged her to get up with me and take a walk. I took her back to my friend’s table and introduced her around. One woman said, “Oh, she knows me,” which I loved. Because Mom doesn’t exactly know anyone, of course, including me. And then again, I was introducing her to people she actually lives with. That I was just meeting most of them for the first time was a clear indication of how infrequently I visit these days.

As Mom and I found another place to sit so she could rest her head, two aides stopped to tell me Mom had looked one of them right in the eye during a bathroom visit and called her by a name that begins with an “M” and said, “I’m so surprised to see you.” I suggested one name it might have been – an old friend of Mom’s – but the aide couldn’t remember. But she said that Mom seemed so clear that she was encountering a familiar person from her past. I wish I had heard the name, though I’m not sure it’s meaningful. Mom also said out of the blue, recently, as I was sitting next to her, “Emily and Patrick.” It made me feel good, but I think it was nothing more than a brief retrieval of some words and not an actual recognition of me and my husband. Still, it’s nice to hear her say it.

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It could be worse

I didn’t consider Easter a special occasion that warranted a visit with Mom. I just thought it was about damn time I finally get back to see her. So I went to the Alz center on Easter. I’m not religious, and I don’t have children, so I don’t really observe the holiday in any way. But Patrick and I do associate the day with food, to some extent. In fact, the last time Mom was at my house was on an Easter Sunday when she lived in assisted living – probably 2008 or maybe 2009. I am sure we had ham and scalloped potatoes, and we had Mom over to eat. And shortly after finishing dinner, she was ready to go back to assisted living, to be with her friends. That stung at the time. Though it was also a great thing, that Mom had pals at that facility. I never had her over again, for a variety of reasons. Mostly because I didn’t think she would get any particular pleasure out of it. I still took her out to Bob Evans for lunches even after she moved to the Alz center. But I assumed being in a home environment might just be confusing to her.

So late yesterday morning, I found Mom lying on a couch, sleeping. I wedged myself onto the end of the couch near her head and started stroking her hair gently. She opened her eyes and smiled, but she didn’t get up. And then a nurse came over and sat Mom up and told her she should wake up for her daughter’s visit. I didn’t really think it was a big deal one way or the other. But this nurse said, “It’s Easter. We knew she’d be here today.” Mom sat quietly for a short while and then I suggested taking a walk to wake her up a little. It was almost time for lunch. We walked in a big circle around the program area, passing by Mr. R, who ignored my greeting. I finally got Mom seated at a table so she’d be ready for lunch. Her tray arrived quickly, and she began to eat right away.

Meanwhile, another woman I didn’t know was shuffling around aimlessly with her walker. I invited her to sit at our table. “I don’t know what the hell I’m supposed to be doing,” she said. She clutched her stomach. “It makes me sick to my stomach.” I said maybe she was hungry and that she should try to eat. She repeated her complaints. I coaxed her into a chair. “I don’t know where the hell I am,” she said. I tried to be comforting and encouraging. “That’s not a good feeling,” I said. “But you are safe and surrounded by people who will take care of you.” “I don’t know what the hell I’m supposed to be doing,” she replied. I asked her name and got her tray for her. But she didn’t eat. Another woman at our table, someone who has been there since Mom moved in, was dipping her knife into her water and then imagining that she was buttering her cooked carrots. It was quite sweet, really, and harmless. I recalled that at the Thanksgiving meal last fall, this same woman ate butter straight out of the containers on the table.

Throughout all of this, Mom just kept eating, taking bite after bite of her chicken, noodles, carrots and dinner roll. She did a great job, cleaning her plate. She picked up her spoon at one point and tried to use it for a few bites, to no avail. She is quite skilled at eating with her fingers, so I just moved her spoon out of the way. The unhappy woman stood up, refusing to eat. I helped her maneuver herself back to her walker, and she shuffled away, still very fretful. I wished I could say something that would ease her mind, but she was clearly inconsolable.

After Mom finished, I cleaned her hands and stood her up for another walk. We headed back to the couch she had been on before, and she immediately rested her head. I am always looking for signs of change, and I wondered if she might be a little more hunched when she walks. But mostly she is the same as she has been for quite some time: a cheerful storyteller who remains mobile and able to feed herself and who enjoys social companionship. Hearing the laments of her tortured table-mate was an important reminder of how much worse it could be – for Mom and for me.