Archive for October, 2010|Monthly archive page

Sent packing

Mom is definitely content and easygoing these days. No doubt about it. But she also shows her willful side from time to time. It’s kind of funny, as long as those of us on the receiving end don’t take anything personally that she says or does.

Mom’s longtime friend, Ed, was passing through the city yesterday. He visits with Mom just about anytime he is in Columbus, and often takes her out somewhere. He called late Sunday morning to let me know he wanted to pick up Mom and take her out for coffee or something. The timing was good – often, I have conflicts when Ed is in town – so I invited myself to come along so I could see Ed for the first time in a long time. We agreed to meet in the parking lot of the Alz center. As I was getting ready, I began to worry about a few things: We were picking Mom up after lunch. Would she have food on her clothes? Would Mr. R be around? And, perhaps most important, would the new shoes I bought her be on her feet? So I went over to the center a little early.

I spotted Mom with Mr. R on the couch near her room. Interestingly, she had the same outfit on that she has had on two other days I visited in the past week. I don’t know if that’s her idea or someone else’s. After seeing where she was, I went over to the nursing station to see if Mom’s shoes might be there, where I left them before the failed dermatology appointment. They weren’t there. While I was standing there, Mom came over to me and hugged me. “I love you,” she said. It was so sweet. I took her to her room and looked high and low for signs of any shoes at all. I found the pink Crocs put away in a bin, but one was completely useless, missing two straps. I found a single Teva-like sandal in the closet. Even the leather slippers that had been there a week ago were gone. Also missing were her blue Crocs and the more sturdy Mary Jane-style slip-on shoes Mom wore years ago, before she got into the Crocs. And the new Croc knockoffs I had just brought in were gone, too.

We went back out to the program area, and I learned that Mom had not eaten lunch yet. It was about 12:30. Mr. R had refused his lunch, which had confused Mom. The aides pointed her toward her chair and she sat down and started to eat. I pulled up a chair next to her and watched her eat, and helped a little, cutting her turkey. At 12:45, I left Mom and went to the parking lot to look for Ed and another friend he had been traveling with. I explained that Mom had no shoes and therefore really couldn’t go to a restaurant or coffee shop. We agreed to visit in the center and possibly go outside to the courtyard. The three of us pulled up chairs, surrounding Mom and Mr. R on the couch. We chatted a little bit with Mom, and then the three of us tended to chat with each other while Mom and Mr. R sat there – a definite hazard of visiting with someone who cannot follow a conversation. At one point, I admired Mom’s hair. Mom asked Ed about his hair. His friend said Mom had nice hair. “I have a chair?” Mom said. She doesn’t always hear well.

We eventually took a little walk, and then went outside, walked along the little path there, and sat for awhile. It was unseasonably warm and sort of breezy. At one point when the wind blew, Mom said, “Oh, that was nice.” I enjoyed seeing her take some pleasure from the nice day. Fairly soon, however, Mom said, “I’m ready to go,” or something along those lines. She stood up with Mr. R. We asked if she wanted to go inside, and she said yes. We had to wait for someone to let us in, and then we let Mom and Mr. R lead the way. We followed them to one side of the program area. Then Mom said, “I’m going to go over here,” and she took Mr. R’s hand and walked away from us rather purposefully. I could tell it was her way of saying, “I’m ready to not have company anymore.” Ed, his friend and I agreed we were ready to leave, too. Ed managed to shake Mom’s hand and Mr. R’s hand. I just waved and before I had even put my hand down, Mom had turned her back on me and headed toward her usual couch.

It was a new phenomenon, to have Mom kick me out. She wasn’t unkind about it at all, and she didn’t seem particularly agitated. She was just ready to return to what she knows – peaceful sitting, holding hands with Mr. R, familiar surroundings, her safe place. I’m frankly glad that she is able to take care of herself in that way, to plainly state what she wants and do what she needs to do to be at her very most comfortable self. I wish I were better at that myself.

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‘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.

Tax time

In April, after I finished filing federal and state income tax forms for my husband and me, I realized I still had work ahead of me: Mom’s taxes. I kind of think a person on Medicaid shouldn’t have to file taxes. And maybe she doesn’t. I guess that’s something I have to look into. But until Aug. 1, 2009, Mom was a regular citizen, earning her small income and using her retirement savings and investment income to pay for her apartment in an assisted living facility and her own medications. And then her money ran out.

So on or just before April 15, with panic in my heart, I filed for an extension for Mom’s taxes. I realized I didn’t have an IRS form telling me how much she earned from Social Security, probably because her address had changed and I hadn’t told anyone official. I changed her address with the IRS and Social Security, and eventually got a replacement form. And then I set it aside until this past weekend, just days before the six-month deadline to file before the extension ran out.

As usual, I dreaded doing her taxes. I never like doing the taxes, but I know how to do them and I take care of them at our house because I have a so-called small business (free-lance proofreading) and therefore my taxes are just slightly more complicated than they’d be if I didn’t do that free-lance work. I also generally take care of the finances. That is just how the household jobs balanced out when Patrick and I got married. Of course, Mom can’t do her own taxes. This is the fourth year I have done them for her with power of attorney authorization. Before that, she went to an accountant to have her taxes done, and I recall that she was very confused about her 2006 tax return that was handled by the accountant. I chose at that time to stay out of it and just assured her that everything was OK, and I was secretly glad that someone else was dealing with her confusion about money. Now, it is part of my caregiving job. So I decided that on Sunday morning, I’d do Mom’s taxes. And then I would go shopping.

It turned out Mom’s taxes did not take very long. Her income came from Social Security and the Ohio Public Employees Retirement System. Two easy answers. And I had kept the statements from the IRAs and annuities I had closed after her savings ran out and I had to free up every penny of her money so she could go on Medicaid. One other answer. And last year, I went through the trouble of figuring out how to calculate her medical cost tax deduction. This year, I used that figure to calculate eight months of similar spending while she was in assisted living, and then added up her four months of expenses at the Alz center, and that was that. For the second year in a row, she spent more on her medical needs than she earned in income. Such is life when you have Alzheimer’s.

So the tax return is ready to mail. And I also have prepared a letter to Mom’s Medicaid case worker, sending him a copy of a statement she received at the end of August saying her retirement income will increase just slightly for the next 12 months. It took me awhile to locate the Medicaid approval letter in which the case worker’s name appeared. I also noticed I was supposed to inform him of this change in Mom’s benefit within 10 days of being notified about it myself. So I have messed that up by about 32 or so days. I hope that doesn’t do any damage to her Medicaid status. I know that a higher benefit means I have to pay a little bit more to the Alz center each month; I assume I might have to pay retroactively for September, or something like that. I have yet to hear a single word from Mom’s Medicaid case worker since she was deemed eligible a year ago. Which has been just fine with me.