Archive for April, 2010|Monthly archive page

Be careful what you wish for

A year ago, Mom needed me. She was losing her ability to call me on the phone. She wasn’t remembering to change her clothes or her underwear. I brought her cat food, and scooped the cat litter. I flushed her toilet and tidied up her little apartment from time to time. I brought her cookies sometimes, and I maintained her disposable underwear supply for her. She was running out of money but didn’t know it, and I was taking care of her finances for her – as I had been for years by this time. She was more emotionally fragile then and was comforted by my presence. She had friends that she enjoyed spending time with at her assisted living facility, and spent most of every day sitting in the lobby chatting with them. But she still needed me. And I felt the burden of that need.

If you had told me then that within a year, Mom would be content and settled into a new nursing home and busy with a boyfriend who occupied virtually all of her time, I would have carried myself for months on that promise that someday, she wouldn’t need my help anymore. I also would have been skeptical, after I had been Mom’s focal point for several years, that she would so easily let me go.

Last Friday, it occurred to me that this is just what has happened. I visited Mom before lunch. She was sitting on the couch with Mr. R, and they were engaging in some deep kissing when I arrived. Another family member of a resident who spends lots of time at the center told me that Mom had “turned Mr. R into a one-woman man.” Meaning his other girlfriend apparently isn’t in the picture anymore. I actually haven’t seen her around lately, and that could mean any number of things. But apparently Mom and Mr. R are now monogamous.

And what that means is that Mr. R is now Mom’s primary source of companionship. As we sat together, me in a chair next to Mom’s side of the couch, she and Mr. R held hands, and he sang along with Elvis tunes playing on the sound system. “He’s my best friend,” Mom said. “I love him.” “I can tell,” I replied. “That is so nice.” And I felt what I guess was the sting of a little bit of rejection. My eyes teared up just a little bit. Mom used to tell me that I am her best person. But I guess that is no longer the case. What she did continue to tell me during this visit, though, was that I am beautiful. And every time she said it, I told her I am beautiful because she is beautiful – that I take after her. And she did look good on this day. Her hair was wavy and clean, and she looked very rested. She had white pants on, and a pink striped T-shirt, and her pink Crocs. Despite our friendly exchange, I fear that I became sort of bad company during this visit, sitting quietly and absorbing the facts of this transition.

The thing is, Mom’s devotion to Mr. R and his devotion to her are good things. Talk about quality of life – they are engaging constantly in expressions of affection for each other, whispering to each in a language that they can understand. Mom is at peace, more than ever before in the course of this illness. She doesn’t need my presence to feel comfort or safety. That is good for her, and frankly, it is good for me. My new once-a-week visitation schedule is making room in my life for more exercise, daily walks with Patrick and the dogs, errands for my own needs rather than hers. And Mom-free weekends, something I haven’t had for about four years. So this is really a win-win. But I think it might be common to caregivers of all kinds, to feel sort of sad that someone could possibly replace them as the best person in their loved one’s life.

This is not to say I will stop visiting. A conversation with a friend recently clued me in to how many people think about Alzheimer’s – that when the memory is completely gone, and the patient no longer recognizes family, there is really no point to maintaining a connection to that patient. That is so completely not the case. Mom still remembers me for the most part, either my name or that I am her daughter or both, though she doesn’t really know what having a daughter means anymore. But when she no longer knows my name, or can no longer say it, she will still know that somehow, I am hers. Several people in my support group have talked about this, and I see it when I visit the center, that patients with very advanced disease can still experience the comfort of a familiar face, sound or touch. They may need it then more than ever. And whether Mom needs me or not, the truth is, I need her. It is part of my life now, to look after her, and I get more joy from the relationship than I ever would have predicted.

I can’t imagine that Mom could sense anything about my emotions on Friday, but the visit ended in a very fine way. Mom’s lunch arrived, and she moved from the couch to a table. I poured her milk for her and put her bib-like towel around her neck. Mr. R came to the table to wait for his tray to arrive. I said, “Now that you’re eating, I’m going to head back to work.” I leaned down to kiss her goodbye, and she turned her face up toward mine and said loudly, “I love you!” And I said, “I love you, too.”

Miscellaneous memories

Two of Mom’s friends have recently told me about memories they have had about Mom. One is funny and one is decidedly not funny – it’s not sad, but it sheds light on Mom’s path in life.

First, the funny one. I frequently have lunch with a group of former and current employees of Ohio State, and one of them happens to be an old friend of Mom’s from her bridge-playing days. About a week ago, she recalled that she had recently remembered something funny about Mom. The friend was having a small party years ago, probably the late 70s or early 80s, and Mom was sitting on the couch talking to someone. She had slipped off her shoes – blue flats – and they were close to her feet. Eventually, Mom looked down to find that the friend’s dog, a bulldog that I remember fondly, had pooped in one of her shoes. My immediate thought upon hearing this story was that those shoes were toast – as in trash. But no, Mom apparently wanted to keep them. So her friend spent a good long time trying to clean the poop out of the shoe. Mom could be a little bit cheap that way. Not exactly frugal – that would suggest she bought things of good quality that would last forever. But Mom was more likely to buy things of medium quality and then hope they would last forever, often wearing them past their prime. These shoes were probably nothing special. But that’s part of what makes it funny, I think.

Another friend who recently joined Facebook and subsequently found this blog told me that Mom had once said that she never got over being counseled to go into social work when, as the friend wrote to me in a message, “her obvious talents were in math.” “What a difference that might have made,” the friend also wrote. So true. Mom didn’t ever say anything like that to me. But I do think of her employment history as very unsatisfying to her. She told me about her early work, at the state mental hospital in Columbus, but what I remember most about what she said was that she once encountered a woman she had known in college who had since been diagnosed with schizophrenia. That was a startling experience for her. What the work was like for her, I simply do not know.

The first job I actually remember her having when I was a young girl was as an adjudicator of Social Security claims. On a couple of occasions, she took me with her to work. She did claims work for another insurance company, bookkeeping for the Columbus Dispatch, and clerical work at Ohio State for the libraries, a College of Education department and the registrar’s office. In the midst of all that, she took an accounting class for fun and, if I recall correctly, scored better than anyone else in the class. She had been valedictorian of her high school class. I’ve always thought of college as a special time in her life, but perhaps that was mostly for social reasons rather than academics or career preparation. For as long as I can remember, Mom has hated full-time work. Her last job exhausted her. I imagine she did not get much joy out of it at all. So she retired when she could. But for financial reasons, she quickly returned to part-time clerical work. Eventually, the illness interfered with her work, though she didn’t realize it at the time. She and her boss parted ways in a mutually agreeable way, thankfully.

Mom was a liberal and a union activist. She was the first feminist I knew. It is so disappointing to know that, presumably because she was a woman, she was discouraged from pursuing a career in the field that might have given her a lifetime of job satisfaction. Who knows – it might have even been better for her brain. We will never know.

Pretty in pink

After my guilty Sunday, I visited Mom before lunch on Monday. I found her on a couch near her room with Mr. R. They were just sitting, not being overly affectionate, at least at that moment. As I walked toward them, I heard Mom say to him, “There’s my daughter.” She doesn’t always know that I’m her daughter. She might not have known my name. But I was impressed at the nonchalant way she said that. I bent over to hug her and sat in a chair near Mom’s side of the couch.

I asked how she was doing, and she seemed to be just a little off, as if she were remembering a negative interaction or experience but couldn’t articulate what it was. Someone was mad at her, she thought. She made mention of the hairs on her chin, so I got out my tweezers and plucked away for a little while. She did have pretty significant growth going on there. So it took a little while. She still tried to talk from time to time, which interfered with my plucking. She looked at Mr. R and asked him if he was mad. And he said yes. And she said, “Oh, I didn’t know that.” And I thought he might be mad that I was there, taking Mom’s attention away from him.

I had brought in a stack of clean short-sleeved shirts to swap out for Mom’s winter clothes. I told her I’d be in her room for a little while, cleaning her closet. I pulled a hamper out of the bottom of the closet and filled it to the brim with sweaters and fleece shirts and other items with long sleeves. I left a few lighter long-sleeved shirts. I organized the clothes on the hangers, putting pants together, and short-sleeved shirts, and long-sleeved shirts, and then a few jackets. Mom’s winter coat and raincoat are still tucked into the corner. I put hats and gloves on the top shelf and her few pairs of shoes on the floor. She wears only Crocs, and only pink Crocs these days, but I am keeping the other shoes in her closet anyhow.

When I came back out, she and Mr. R were still sitting. A staff member chatted with me a little bit, and told me she had hung up the poster I had made for the research project Mom was in – a series of photos of important people in Mom’s life. I had been in her room for about 20 minutes and didn’t even notice the poster, I was so absorbed in getting her clothes situated. I thanked the staff member for that. When I saw Mom sitting there, it occurred to me I hadn’t taken a photo of her for awhile, and I liked that she was wearing a pink shirt, pink pants and pink Crocs.

Mom in her pink shirt, pink pants and pink Crocs. Mr. R is next to her, but I don't think it would be appropriate to show his face without his son's permission.

When the staff member saw me taking this, she offered to take one of Mom and me together.

Behind me is the door to Mom's room. She doesn't spend time in there unless she is sleeping. The aide insisted that Mom smile, and it worked.

Before long, a staff member called Mom over to a table for lunch. Mom followed those instructions and seemed to forget about me and Mr. R until she was seated. And then I went over to her and let her know I would be leaving so she could eat. And then she spotted Mr. R in the distance, and she went over to him and stood over him, whispering to him. He came toward the table and got his lunch, too. I went to kiss Mom goodbye and she opened her mouth – not so much for a kiss, but as if she might take a bite. I thought she might be confused between the food in front of her and me swooping in for a kiss without warning. I backed away and we both laughed. And then we had a proper little kiss goodbye and I told her I would see her in a few days.

Finding my guilt

It has become clear now that I visit Mom once per week. At the most. I sometimes find myself pretending, out loud or to myself, that I still visit her twice a week. But that hasn’t been the case for awhile, beginning this past winter. And I mostly think that is OK – the weekly visit, not the denial. If Mom’s behavior were bad, or if she otherwise indicated she really needs me around, I would visit more often, as I did when she was in assisted living.

That said, I have just let a beautiful spring Sunday go by without visiting her. And I feel guilty about it. I had planned to visit her. I got an early start on laundry and read all of my favorite parts of the newspaper without interruption. Patrick and I had a nice breakfast, and ate outside on our little patio. I wasn’t going to take a shower before visiting Mom, because there was some gardening I wanted to do later. So that would save me some time. But by the time I was nearly dressed, it was 11:33. Too late to make a visit long enough to be meaningful before lunch. I declared to Patrick that I wouldn’t be going after all. “Good for you,” he said.

Well, maybe. I did the gardening instead. I love the results of yard work, but I am not a fan of doing the work itself most of the time. But it took my mind off of Mom for awhile. And then I showered, and I rested on the couch with a book for a little while. I helped Patrick with some transcription because I am a fast typist. We spent time together in the back yard reading our books. And then I made spaghetti sauce early so it could cook for a long time.

All the while, I thought about possibly visiting Mom later in the day. Trying a visit before dinner might be interesting, I thought. I wondered if she had a chance to go outside today, in the warm sun. I assumed she was spending time with her boyfriend. But I didn’t do it. I didn’t go. What I did do was put her warm-weather shirts in the wash so I can take them to her this week when I do finally visit and pack up her winter clothes to bring home with me.

I have said a number of times at support group, and here, I believe, that I do not feel guilty about placing Mom in a nursing home, or in assisted living before that. I have many regrets about my behavior in the early days of her illness. But I can’t have that time back to do things differently, so I try not to dwell on my impatience, and anger, and dread, and how those emotions influenced what I said to Mom, and how I said it, before I realized she was sick. I wish things had not been the way they were. But that’s about all I can do. And as for Mom’s life in institutions – well, I would say the quality of her life in assisted living was better than it was when she lived alone in a second-floor apartment in a crappy old building. And I know that the quality of her life now, at the Alz center, is simply as good as it could possibly be. She is not lonely, or scared, or sad, and she is kept busy all day long. And she has a companion.

I do feel guilty about the frequency – or lack thereof – of my visits with her these days. It is all self-imposed. I sense no judgment from anyone else. So why do I feel guilt? I don’t know. And why don’t I visit more frequently to make myself feel better? I don’t know. I guess I just don’t want to. And that makes me feel guilty, too.

Eating less

So, just two weeks or so after learning that Mom was consistently gaining weight, I was told Sunday that she is not eating complete meals. I went to visit about half an hour before lunch. After the previous visit, when I was feeling a little out of the loop, I wasn’t ready to commit to anything longer for fear I would feel awkward again around Mom and her boyfriend and the other girlfriend all at once.

When I arrived, Mom and Mr. R were sitting together at a table. Not on the couch this time. I approached the table and bent down to put my face in Mom’s line of sight. She stood up and hugged me. So I was immediately more at ease. I said hi to Mr. R and he said hello back to me. Off to a good start. I sat at an empty spot at the table. I thought we might just chat or something. Mom seemed to think we might be going somewhere. I said I wasn’t going to take her anywhere, but that we could take a walk. She asked Mr. R if he wanted to go. He said something along the lines of, he must have to if Mom wants him to. Though he was perfectly agreeable about everything.

We set off down the hall toward the lobby. When we got there, Mom and Mr. R sat on a couch and I sat in a chair near Mom’s side. I don’t think I was very good company. “Anyone who wants to can speak,” Mom said at one point. I laughed and said I was tired and therefore not talking much. “I don’t have any news,” I told her. I asked her if she had seen any dogs visiting lately. She didn’t recall. I asked her about the little kids she sees from the daycare and she remembered that she likes that. She also had a hint of memory about having a visitor. I thought it might be a student working on a second research project, talking to Mom about her quality of life. I told her she is in another study and that I thought she would enjoy it because young people come to visit her and talk to her. “Yeah,” she said, sort of absently. She picked at her chin while Mr. R picked at his upper lip. And we all just sat there sort of quietly for a little while.

The dining cart came out of the kitchen and was headed to the program area, so I suggested we go back there so Mom and Mr. R could eat. We got seated at a table just as both trays arrived. “Now you eat everything, Bonnie,” said the staff member giving Mom her tray. I asked if she was having a problem. The staffer said Mom starts eating, but hasn’t been finishing her meals lately. I was surprised to hear this. I said I should probably leave so I didn’t distract her from eating. “If you stay, she’ll eat,” the aide said. So I sat down.

The lunch was meatloaf, mashed potatoes and gravy, and corn – a very good Bonnie meal. Plus chocolate cake with vanilla icing. Mom used her spoon and took bites of corn and cake, mostly. She drank some milk. She loves milk now. When she was almost done with her corn, I asked her if she was going to eat any meat. She studied her plate. “I’m just trying to figure it out,” she said. She took some bites, also with her spoon. I couldn’t decide what to think about this latest trend. She recognizes what she likes: the cake. She had no problem with the corn. Is a nondescript piece of meat harder for her to recognize than, say, a serving of corn for some reason? Is there a color issue? Does all the meat sort of look the same? I don’t think she has a problem with the taste. She has never really complained about the food. Perhaps it is just a phase. It’s really hard to tell.

Her mood seemed about as good as it has been lately. Though at one point, she said, “I’m distressed.” She rubbed her arms from time to time. I told her she has had a rash and has been treated for it and maybe that has made her itchy and unhappy. She didn’t agree or disagree. “I wondered about where you live,” she said. I told her I live just a few miles away. She seemed to make reference to change. I wondered if new people have moved in to change the dynamic of the center. She reminded me a little bit of the way she tended to feel in assisted living. Just a tad unsatisfied about something that she simply could not articulate. But not sad or scared. So I think she is OK.

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