Archive for April, 2011|Monthly archive page

Transition time

The social worker at the Alz center ran support group last week. I was talking about Mom hitting someone, and how I am having a hard time knowing what my role might be in trying to be helpful when it comes to her eating problems. I sort of talked on and on about Mom being restless and unable to sit still for two meals that I had been present for recently. I asked about the finger food plan and what that means. I noted that Mom’s weight loss seems to be getting to a point that might make me consider worrying. One thing I don’t have to worry about, the social worker said, is that Mom has suddenly become a hitter. She thinks it was an isolated incident and a reflexive act on Mom’s part, and doesn’t necessarily suggest Mom is going to become combative on a regular basis.

And then, the social worker said: “I think Bonnie is going through a transition.” I think so, too. I don’t know if her definition of transition and mine are the same. Mom’s behavior is changing with regard to eating – that could be a transition. Mom is withdrawing a little bit from Mr. R. That is definitely a transition. For me, it is Mom’s appearance that is telling me she is going through a change. And it bothers me – which pisses me off, because from the beginning I have considered myself completely prepared for the inevitable decline, in all of its manifestations. That I can get bummed out about Mom’s appearance is not something I really want to admit to, or deal with.

For so long, she has looked sort of “normal,” like she could pass for a family member at the Alz center if you didn’t look too close. Not anymore. She is so thin. Her face is drawn. The hunch in her shoulders is more pronounced. Her face is peaceful, but also has a blankness to it. She carries herself a little differently. She has developed a hammertoe from walking around barefoot so much of the time. The whole package that is Mom’s being, though, is transformed. I’ve been trying to think of how to describe it. I think she’s sort of like a house that has not been lived in for awhile. She is vacant. The disease’s effects have moved beyond the brain now. With the brain going unused, the rest of the body is sort of caving in, too.

I have been visiting more frequently lately. Twice, I was there at lunch time, hoping I could help Mom get through the meal. The first time, we had another woman sitting with us. We had a few interesting minutes together before Mom got up.

Other resident: Is there any butter?
Me: I don’t know. Mom, this looks good. Why don’t you try a bite?
Other resident: I need more butter.
Mom: I’m ready to go.
Me: Maybe we can just sit for a minute and eat a few bites.
Mom: Mmm, that’s good (after drinking her milk in one long gulp).
Me: I know how much you like milk.
Other resident: Get me some butter!

Mom wanted to start walking. I joined her, and brought along her dessert, a small cup of vanilla ice cream. We walked, holding hands, and she talked off and on. We went through the lobby and over to the skilled nursing side. We hit a dead end and turned around. We sat for awhile in the lobby on the second pass. I offered Mom her ice cream, which was so melted now that she could drink it. “Mmm, that is so good,” she said after slurping up as much as she could. A little while later, she was ready to walk. We went back to the program area, and I looked for her tray. It was already put back into the cart to be returned to the kitchen. Someone has poured a bunch of milk all over Mom’s plate.

With Mom being put on finger foods, I thought she would no longer have a tray arrive at mealtime. But no, that’s not the case. It is either state law, or Alz center policy, or both, for everyone to get a tray for each meal. So Mom receives whatever might be on the menu plus two slices of bread to make a sandwich that she can take on the road with her. The thing is, she could never assemble a sandwich herself. For a more recent lunch, she was served turkey and home fries. Seeing she had two pieces of bread (and before I had heard about the sandwich concept), I started nibbling on one, thinking that if I ate, Mom would eat. That didn’t work. I fed her a few potatoes by hand. She did respond to that, but she is not really in need of being fed just yet so I don’t want her to get used to that. The aide presenting her tray had given Mom her piece of corn bread and said, “You’ll like this.” Mom did bite into that immediately and then put it down. When she said she was ready to go again, I put some of the turkey between the two pieces of bread and picked up the rest of the cornbread. And off we went.

She held onto my arm as we walked our familiar path. “I think you’re wonderful,” she said. Of course, I just loved that. I told her she is wonderful. We walked, and I would feed bites of corn bread or sandwich to her from time to time. We eventually circled back to the program area, and once again, her tray was already gone. I did take in some Clif bars last week, and will be checking in tomorrow to see if she is eating them.

For so long, Mom enjoyed the pleasure of a good meal. It makes me sad that she is losing the ability to relax and really feel the sensation of the food, the tastes of the comfort foods that she has always loved. She does still enjoy snack time and is especially fond of ice cream. The social worker’s theory is that Mom would do better if she could receive her tray a little after the lunch hour, when things have quieted down. It’s as if the hustle and bustle of mealtime is a distraction to her, and gives her the urge to move around. I don’t know if a resident can receive that kind of special treatment, and I wonder if it could prompt a new set of problems with people who want to eat when Mom eats, even if they’ve just had their own meal. But I like the idea of giving it a try.

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A slap in the face, in more ways than one

Tonight, I had a call from an Alz center nurse. Someone whose name I do not recognize. She just called to tell me Mom hit someone today – another resident’s family member. And she just wanted to let me know.

I realize that the staff has to make these calls to family. But why at 8:30 p.m.? I am all stirred up by this news, with no opportunity to really resolve anything. If I understood the story correctly, at dinner, a tray was placed in front of another resident at Mom’s table. Mom reached in for some food, probably dipping a finger into ice cream or some other type of dessert. The man’s family member, I think, tried to correct Mom. So Mom hit her. In the left eye.

The woman is fine and was not actually injured or angry. Mom was agitated for awhile after the incident. But by the time I got the call, she was fine. All forgotten, of course. “Is there something I should do?” I asked. “No, no. We just want to inform you when these things happen.” Right. I get that. I just wish it had been earlier. Maybe I could have driven over to the center and apologized to the woman who got hit in the face. Or sat with Mom and tried to make her feel better. Or both. But visits after 8 p.m. are discouraged because the entire focus is on getting residents prepared for bed, and there are no front desk staff members available to let us out of the building.

“Mom is having trouble with food lately,” I said. Yes, the nurse said, and the staff is trying to keep her nourished with finger foods. I bought a box of Clif bars to take over on Wednesday, when my work schedule is a little lighter. I had a nice long visit with Mom on Friday, which I haven’t written about. While I was there, a nurse had suggested nutrition bars might be a good option for Mom, and she suggested I bring in a box. So we’ll see.

So I think I have reached a point where Mom doesn’t need me anymore, where she is settled and happy. And then I get three calls from the nurses in a week’s time with reports about various issues with Mom. She will never not need me, I guess. And no matter how well she seems to be doing, there are no guarantees she will stay that way.

Well, that therapy didn’t last long

An aide from the Alz center just called this evening to give me a report from a dietitian about Mom. She said that because it is difficult for staff members to convince Mom to remain seated during meals, the dietitian recommends finger foods for Mom as well as a high-calorie drink twice a day. So Mom can eat and stay on the move. I asked if the occupational therapist had already given up on working with Mom on re-learning proper utensil use and other eating skills. The aide said she believed this order came from dietary. But by the end of the call, she said, “I can’t really read this signature.” So it might be coming from the occupational therapist. I don’t see any other explanation but that Mom is not a good therapy candidate. The Alz center is small enough that the therapist and dietary have got to be working together on this kind of thing. I told her I thought it sounded like a good plan. With all the walking that Mom does, she needs to take in some calories.

I asked if Mom had become more mobile recently. The last time I visited in the middle of the day, Mom was contentedly sitting with her leg hoisted on a chair. The aide said that when the activity level is high in the program area, that’s when Mom wants to be on the move. Mealtime is a fairly busy and noisy time in the program area. I do recall that Mom seemed very distracted and restless on Valentine’s Day, when the lunch hour was more chaotic than usual, with visiting family members invited for the meal. At quiet times, Mom is more relaxed. “Right now, she’s lying on a couch with her feet up,” the aide said. That sounds like my mom. She also said Mom strays away from Mr. R with regularity, and sometimes it upsets him. I don’t know much about this element of the disease – the tendency to make a patient so physically agitated but emotionally at peace. I skipped support group tonight because I was exhausted and had a headache. So I will definitely have some questions for the next time I go.

What I did do today, however, was attend a memorial service. A support group friend of mine lost her husband. I have written about her a few times before; we had cake with her at the center on her 60th wedding anniversary – three of her four children live far away, and had sent cake and flowers to the center so their mother could have a proper party. She always so stoically described the events in her household. She often talked about how much she learned from attending support group – especially about letting go of worry about her husband’s idiosyncratic behavior. Certain things bothered her until she realized it didn’t really matter. But it can be hard to learn that lesson. And based on what the pastor said about him today, he lived a very orderly life before he got sick. So changes in his behavior must have been hard to adjust to.

She developed hip problems several months ago and needed surgery, so she moved her husband into the Alz center while she recovered. Once she had recovered, however, she and her kids had decided that he would do well to stay at the center. He has been there since shortly before Christmas, I think. Recently, at my most recent care conference, the staff members told me that sometimes he took walks with my mom. I didn’t know him well, but I thought he seemed very sweet. And he had twinkly eyes. At age 84, he was a handsome man. He died suddenly last week and I was stunned to see his obituary in the paper on Sunday. Today, after his wife and I shared a strong hug after the service, she took my hands and held them tight and we talked briefly about the sudden turn of events. She seemed to be doing really well, considering. It is not that the loss doesn’t make her ache to her bones, I’m sure. But maybe it is somehow easier to accept than the prolonged and painful process of watching an Alzheimer’s patient slowly slip away. I imagine for a spouse, there is nothing worse. It’s bad enough to see it in a parent.

Learning to eat again

An occupational therapist called me this week to say that she has been asked to help Mom maintain the ability to feed herself. Apparently Mom is using her hands more often and has trouble using utensils properly. She might use a knife to try to scoop up her food, for example. I have seen both of these behaviors before, but it must be getting worse. Mom is also distracted at mealtime. I have been part of that distraction before, which is why I’m not around during meals anymore.

The therapist needed my permission, which I did not hesitate to grant. Medicare and Medicaid should cover most if not all of the cost. I’m not worried about that. I’m worried that Mom might resist the therapy. I told the therapist that Mom has a tendency not to like instruction. This therapist sees Mom around and considers her friendly. I told her not to take it personally if Mom is mean to her about being told what to do. I’m sure the therapist has seen it all before, but I wanted to give her some advance notice so she’s not taken by surprise. And also so that she might start the process with strategies that somehow don’t appear to be instructions.

If Mom can’t make progress, the therapist said she would design a restorative program so that staff can cue her to be as independent as possible. The last thing the staff members need is another mouth to feed manually. Mealtime is pretty busy at the Alz center. I asked the therapist if I should try to be present at more meals to see if I can help Mom eat. I told her I am not delusional about my usefulness – those were my exact words – but that I just wanted to support the process as much as I can. However, if training is going to be required, I will need that training, too, if I am actually going to be useful. The last thing I want to do is sabotage the effort. So for the time being, I will stay away at mealtime. But I am curious, very curious, about whether this will help Mom learn to eat in an efficient and effective way. I certainly hope so.