Grumpy Thanksgiving

When I arrived at the Alz center for the facility’s Thanksgiving dinner, the parking lot was full so I had to park on the street. I had intended to get there a little early, anticipating that for normal people, a dinner event that starts at 5:30 calls for an arrival of, say, 5:20. But I don’t operate that way for the most part, and I overbook or procrastinate or otherwise plan my arrivals to match the start times of most events, meetings, interviews, etc., that I attend. I got to the center at about 5:28. I might have lower blood pressure if I would stop doing this.

I walked back to the program area and it was packed. Lots of extra tables were set up and most families appeared to be in place. I looked for Mom but couldn’t find her. I walked around and around. Finally, a man held up a sign that said “Caldwell,” and I said, “That’s me.” “You look just like your mom,” he said. She had been sitting at this table earlier, but had moved, he said. I finally spotted Mom at another table, where she was sitting with other residents. I kind of made a big deal about saying hello, but she was frowning. I asked how she was, and she said, “It’s really bad.” She hasn’t said anything like this in awhile, and it stung me a little bit. I walked her over to our table, and we sat down and filled out our menu for the dinner.

An aide came over and told Mom, “See? I told you she’d be here. Everything is OK now.” And she stood Mom up and danced with her a little bit. This was all I needed to hear – Mom had seen this commotion, these extra people, this unfamiliar arrangement. And someone said I would be there. And then I wasn’t there, and I wasn’t there. And Mom got frustrated. Probably felt like people were lying to her. Was overstimulated by the noise and the people. And it made her grumpy. I tried to ease her mind and talk her out of being blue. She wasn’t worried or recalling any fights or anything. She just seemed low. It made me low, sort of. For just a brief moment, I thought I could cry. I’m so used to Mom being in a good mood now so I felt sorry for myself for having to endure a bad mood. I sat with my arm around her. We were quiet some of the time. She seemed to want to complain about how she had been feeling, but could not articulate a thing, really. I asked her if she was mad at me and she said no.

Our food arrived on styrofoam plates with all the usuals: turkey, stuffing, mashed potatoes, all with gravy, green beans, corn, cranberry sauce. Plus for Mom, a slice of ham and sweet potatoes. The residents got one of everything. The guests got what they filled out on their menu. Mom had iced tea and I had water. We ate, and Mom would mumble things about how bad her day had been. I apologized for being late. But she didn’t even realize anymore that what had made her mad was the fact that I wasn’t there. She just recalled feeling angry and frustrated, and was having trouble shaking those feelings. I also noticed that she had deep, dark circles under her eyes. She seemed almost woozy. I thought she was probably tired.

In fact, she was tired. She wanted to go to bed before dessert, but I asked her to wait for the pie. I knew she’d like pie, and I wanted some, too. She had pumpkin and I had pecan. We ate those quietly. We chatted briefly with the family sharing our table. The daughter of the resident in that family said her mother liked Mom’s Crocs, and she had bought her mother a pair. She wanted to get her light blue ones, but couldn’t find them. So she settled for dark blue. We talked about how comfortable they are. That resident was dressed in a fall-themed blouse, had her hair done and was wearing earrings and a necklace. She also moved in in August. I asked her if she likes it there. She said yes, and then she said, “The people who work here have to have a lot of patience to deal with these people.” I said, “Patience is generally just a good thing. For dealing with all people.” I wondered if she was sort of recently diagnosed, given how well she talked and how good she looked. It confused Mom a little bit for me to talk to the other family. Eventually, Mom said, “I’m done.” She seemed just slightly antsy. She asked if we should go home now. I avoided responding to that. I suggested we just take a walk, and she liked that idea. We excused ourselves and walked down the hall to the lobby. It was crowded and noisy, too, so we headed back to the program area.

We stopped and talked to the activities director, who noted that in an art project the day before, Mom had cut out a magazine picture of a handsome man. Mom also had talked adoringly about the 3-11 shift aide, James. She called him her boyfriend whenever he neared our table. I told the activities director that Mom seems to have some renewed interest in men these days, and she said, “Well, I don’t blame her.” Indeed.

Mom said again that she was interested in going to bed. I figured that could do no harm. I took her to her room. Dog/cat was there. She snuggled with him. I took off her shoes and put some socks on to keep her feet warm. I covered her with her new bedspread. I turned off the light but opened the bathroom door to let a little light in. She said, “I’ll probably be in bed in about two seconds.” Meaning she’d be asleep fast, I’m sure. I suspected that was true. I kissed her goodbye. On my way out, I talked to the activities director again. I said Mom had seemed a little overstimulated by all the people and that she seemed tired. “She had a long day,” she said. “A good day, but a long day. She did a lot of dancing today.” So that was it. Mom was just plain exhausted. I was glad to hear that she had been dancing earlier in the day, even if it meant she had the grumps for me.

Fashion statement

The last two times I have visited Mom, yesterday and today, she has had on one blue Croc and one pink Croc. Yesterday was particularly special. When I got to the program area, she was walking at a pretty fast clip across the room. She spotted me and came toward me. She was wearing a maroon and gray winter-themed sweater, turquoise cropped pants that I did not recognize, her disposable underwear outside her pants, and a pink Croc and a blue Croc. I’m not so surprised when she ends up wearing someone else’s clothes. I imagine that is typical. But I was a little surprised about the underwear situation. I asked her how she was and she said, “I just pooped.” So that gave me a clue, at least, that perhaps she had been left to her own devices in a bathroom and this was the result. I took her to her room to sort it all out. There was a male resident resting on her roommate’s bed. He offered to leave, but I told him it was fine to stay, and I would just take her into the bathroom and close the door for privacy.

I took Mom’s underwear off of her and she said, “They’re not wet.” I threw them away anyhow. I took the pants off of her and threw them into the bottom of her closet without examining their status. I gave her a clean pair of underwear and a new pair of pants – gray sweats. Since she had had to take her shoes off, I put both pink Crocs back on her feet. And I gave her some socks, too. While I was changing her, an aide opened the bathroom door. When she saw us, she apologized. I told her not to worry – there was certainly nothing happening that she didn’t in fact do several times a day. When we left the bathroom, the man was gone.

We went out and sat at a table. I had gotten there shortly before lunch, and the tray cart arrived fairly quickly. I got Mom her tray. While I was standing there, the same aide apologized again for walking in on us. I said, “Really, it is not a problem at all.” And then she said: “She had her underwear on outside her pants, didn’t she?” And I said yes, and I had just decided to go ahead and fix that. It’s tough to stay on top of these things for the staff, I imagine.

Today, in fact, I got a better sense of how it can be for the staff when Mom’s toilet overflowed. Before that, however, I observed that Mom once again had on a blue and pink Croc. I had brought a small chest of drawers for her room, so she sat on her bed while I sorted through some of her clothes, bagged up summer shirts to take home with me and put winter shirts in this little dresser. The buffet we were using as a dresser had started to collapse. I left the top of the buffet in place and slid these drawers underneath it. Not pretty, but that way Mom still has a large surface for her many stuffed animals. While I was folding her clothes, she said, “I’m proud of you.” I honestly have no idea the last time Mom said that to me. And I liked it. In this case, it was an expression of gratitude, and she has been generous with those lately. I’m not sure why she elected to say she was proud this time, instead of thankful.

While we were in there, Mom would reach down and straighten her other pair of mismatched shoes so they were lined up right next to her. An aide later told me that she had seen Mom’s shoes and suggested Mom go to her room and change them. Going in, Mom had blue on the right and pink on the left. When she came out, she had pink on the right and blue on the left. “Don’t make fun of Bonnie’s shoes,” Penny the nurse said from across the room – for fun; we were laughing, but not making fun of Mom. Just amused by her actions. “That’s her fashion statement,” Penny said. And I suppose it is true.

Mom and her mismatched Crocs

After I had arranged Mom’s clothes, she said she had to pee. I told her to go into the bathroom while I finished up. I didn’t watch to see how things went and a short while later, she walked out of the bathroom, getting her pants situated. I went into the bathroom and flushed the toilet, which was…full. Mostly paper, but she had topped it all off with a small bowel movement. As I was flushing, I said to myself, “It looks like your toilet might be leaking.” And then it overflowed onto the floor. I shut the door and headed to the nurses station. I told Penny, who pointed me toward a housekeeping cart, which had a plunger. I offered to take the plunger, but the staffer told me she would take care of it. When she saw the mess, though, she said she would need some help. She came back a bit later with a man from the maintenance staff. While he went in to tackle the problem, she stood outside the door with the front of her sweater pulled over her nose. I offered to get in there for the worst of it – it was my mom’s poop and I could deal with it, I said. The maintenance man would have none of it. “This is nothing we haven’t seen before,” he said. He was very nice. I don’t know what to think because I don’t know the extent of Mom’s bathroom behavior all day. Someone needs to check that toilet, though, because she will never, ever remember to flush it. She probably stopped flushing a year ago.

On Thursday, I will eat at this center for the first time. It’s the annual Thanksgiving dinner, a week early, and family members are invited. Patrick has a class so it will be just me and Mom. I’ve told her about it a few times, but I’m sure when I show up Thursday, she will be surprised to see me.

The ladies at the table

I took a little break after last week, when my sister was here and Mom had two outings in two days. I didn’t visit over the weekend. I did finally get there today, a day I had off for the Veterans Day holiday. I arrived shortly before lunch, as usual. Mom was sitting at a table in the program area with three ladies I recognized, but had never met. I joined them at the table. We chatted a little about this and that. Mom asked how our relatives are. And then she said, “How’s Frank?” She grinned, and she said, “I just made that up.” We don’t have any relatives named Frank. I was glad to see her in such a good mood.

While we were sitting there, Mom said to one of the women that she could not remember her name, so they re-introduced themselves to each other. I took that opportunity to introduce myself to all of them, and to get their names as well. I like the idea of addressing as many residents by name as I can. I think it makes them feel good to be acknowledged. I brought up that former Ohio State football coach Earle Bruce had spoken at the facility recently – I had gotten a notice about it in the mail, but I didn’t attend his talk because it was in the middle of the work day. One of the women at the table talked at length about his presentation, and about how good it was. She said she was skeptical about him in advance. She said, “I remember when he came to Columbus.” She is very high functioning. She also recently admired my purse, and said it was “sharp.” I don’t get compliments like that too often.

An activities aide came by and I told her I liked it that Mom is getting her nails done as part of the activities schedule. This woman happened to be the one who had painted Mom’s nails yesterday. While she and I were chatting a little bit and introducing ourselves, a nurse came by and said, “They look exactly alike,” meaning me and Mom. And the woman who had talked about Earle Bruce said, “Yes, you really do favor each other.” I do think I look like Mom, but I’ve always also thought I had some features that clearly came from my Dad – my fair skin, blue eyes, sort of full lips and what I call the “Caldwell smirk.” My nose is sort of a Mom-Dad combo, but really more similar to Dad’s. But I think my movements mimic Mom’s, and my expressions match hers, and perhaps the overall Emily package has a strong resemblance to Mom. Meanwhile, Mom typically seems to think, “How is it that we look alike?” because I’m not sure she understands that she is my mother.

Since it was close to lunchtime, the bibs came out. A woman from another table came over to our table and took one of the bibs. She put it on her chest. I got up to button it around her neck. “Eat,” she said. Mom said, “She talks like that.” I said, “Well, she is getting her point across. She’s ready for lunch.” She then left and went back to her table.

Mom expressed a need to pee, so I took her to her bathroom. A male resident was in her room, standing in the middle of the room and looking toward the window. “Hello,” Mom said to him. He didn’t say anything. I just took her into the bathroom and closed the door for privacy. I pulled off toilet paper for her and after she peed, I handed it to her. She stood up and pulled her pants up without using the paper. She handed it back to me, and I threw it in the toilet. I suggested she wash her hands, and she got them wet and said, “Now what?” I pulled some towels out for her and told her to dry her hands, but she didn’t seem to understand the instruction. I tried to dry her hands a little bit and then threw the towels away.

Lunch arrived: pork and mashed potatoes with gravy, and a serving of cooked cabbage. Mom didn’t really recognize what the cabbage was. One of her table mates is on pureed food so she had only a spoon on her tray. She asked me to get her a fork. I didn’t succeed at that task, on purpose. I thought there might be a chance that she shouldn’t have a fork. Since lunch was a little late, I had been there for 45 minutes, and I was glad I had gotten a little extra time there. And then I left to do a little shopping – retail therapy, you might say.

Girls’ day out

My sister Laura visited for a few days on her way to New York to see her daughter. She arrived Wednesday evening, with just enough time to have a little dinner before we headed off to the weekly support group I attend at the Alz center. We were sad to find the meeting was canceled – a very rare thing – because of floor work being done in the facility lobby. But this also offered an opportunity to visit Mom after dinnertime, something I had not yet done at this place. We found Mom in the program area, and she was very glad to see both of us. She said several times, “What a surprise.” I showed Laura Mom’s room and we sat in a little lounge area. A nurse came by to give Mom her medicine – instructions that Mom had a hard time following – and this nurse also recalled that she had seen Mom’s pink Crocs in another resident’s room. At that moment, perhaps inspired by the presence of two of Mom’s kids, she went and got those Crocs and gave them to me. I put them in Mom’s closet. For the last week or so, she has been wearing her blue Crocs instead:

I put these cute striped socks on Mom before our outing on Thursday.

Mom seemed just about the same in the evening, but the feel of the place was somewhat different. It apparently was shower time for some residents, and one woman asked Mom to give her a shower. Mom directed her to the nursing station. Two other residents came to sit with us, talk to us, ask us questions, and the like during our visit. An aide was making his way through his group of residents, taking them by hand and leading them to their rooms, where he likely changed their clothes, perhaps helped them with a bathroom trip, and put them to bed. Mom said several times that he was her boyfriend. He stopped to talk to us and he said of Mom, “She is very concerned about me.” Meaning, I think, she pays a lot of attention to him. I hope he doesn’t mind. He seemed quite nice. He works the 3-11 shift. I hope he likes his job. Laura and I left so he could put Mom to bed. We told her we’d be back the next day to take her out to lunch.

We arrived Thursday morning to pick her up just as the kids from the daycare were finishing their visit with the residents. One little girl was turning 2 that day, and residents were singing to her and hugging her. The activities director asked Mom if she wanted to hug the girl. The girl hugged Mom’s legs. She was quite cute. I put a fleece jacket and socks on Mom and we headed to Bob Evans – lucky for us, there is one close by, just as there had been one close to Mom’s assisted living facility. We all had eggs. Mom did very well. She ate every bit of her food. She drank coffee instead of Coke. She studied the menu from time to time. She would read some things out loud. I noticed she pronounced breakfast as “brake. fast.” She is slow and can’t get every word. I didn’t react. But it is a really sad thing, for Mom to lose her ability to read. For most of my life, I knew her as a person who just loved to read. She was always in a book club. She wrote some poetry. She was an intellectual, really. And now she doesn’t know how to properly read the word breakfast.

Mom seemed to really enjoy looking at the menu - not to select something to eat, but because the words and pictures caught her eye.

After breakfast, we went to KMart across the street. Mom grew to just love shopping at KMart shortly before her symptoms started to show. I don’t know why she was so attracted to this store in particular. Cheap prices are a good guess, however. She was frugal, especially after she retired. Laura had noticed that Mom’s roommate had a bedspread on her bed, and Laura wanted Mom to have one, too. We scouted around the bedding and eventually found a twin-sized striped comforter that Mom approved of. We walked around a little, wondering if Mom might like something else. In the past, taking Mom shopping had become sort of difficult. She would wander around, pick something out that may or may not make sense for her to own, and eventually we would find her walking aimlessly holding onto an item. It was as if stores were too stimulating for her. This time, she stayed with us, didn’t seem very curious about what we were looking at, didn’t pick out anything that she might like. Laura showed her a nightgown that she might like, but Mom said she didn’t really think much of it. Since it didn’t seem to entertain her, we figured we had shopped long enough.

Mom's new bedspread.

Next, we took a drive. Laura rents a car when she visits, and she scored a Volvo for this trip. I often do the driving around town. I drive a 6-year-old Ford, so it was nice to drive this car. Laura expressed interest in seeing her alma mater, Ohio Wesleyan University in Delaware. She sat in the back, and Mom sat next to me up front. I took 315 North, a scenic route. Mom seemed calm and fairly quiet. She didn’t talk much. She didn’t fall asleep. We drove through the OWU campus and downtown Delaware and Laura talked about various school memories. One of those is when Mom got drunk during a weekend visit to Laura at school. I believe she ended up kissing a young man at some point during that weekend. It is not a good memory for Laura. It might be funny to think about now, but at the time it was embarrassing for Laura. And for Mom, one would think.

We turned around to head back to Columbus with coffee or ice cream in our sights. We asked Mom whether she would prefer a coffee drink or ice cream. “Ice cream,” she said. Not a surprise. We went to Graeter’s on Bethel Road, also close to Mom’s facility. We decided to take a few pictures at this point – photos of Mom, me with Mom, Laura with Mom. And a kind gentleman asked if we’d like a photo of all three of us together.

Emily, Laura, Bonnie

When we took Mom back to her place and put her bedspread in place, we agreed she seemed tired, so we encouraged her to lie down and take a nap. I showed Laura the rest of the facility – the skilled nursing side of the building, and Mom’s former room. And we decided we were tired, too. We returned to my house, and we both took a nap.

Mellow Mom

I seem to be on a two-visits-per-week plan at the moment. And that’s just fine. I am actually considering skipping a visit this weekend and then visiting Mom Monday around lunchtime. And then my sister is visiting later in the week and we will spend much of the day Thursday with Mom. This is nice for me, to be developing a routine, and it seems to be working for Mom, who was as calm today as I have seen her in months.

I arrived around 11:30 a.m. and found Mom sitting in a chair that was part of a big circle in the program area. The activities calendar said there had been a Halloween bash at 10:30, so I assumed this had just ended. Music was playing rather loudly, and most people were still sitting in the circle. One staff member was dressed as a princess. Another was a hippie. I learned later that the kids from the daycare had come over in their costumes to mingle with the residents. I’m sure it was adorable. Mom had no memory of it. I noticed Mom had on her light blue Crocs today instead of her pink ones, and I pointed it out to her. She also had on blue socks. She didn’t recall that she had a pink pair of shoes. I told her it is nice to change things up every now and then.

I sat next to Mom for a little while. She didn’t make any significant show of emotion upon seeing me. Though she eventually says, at some point while I’m visiting her, that she likes having me around. Or that I am her best person. Today she said she’s lucky to have me. I said I’m lucky to have her. And she said, “Well, thank you.” I suggested taking a walk around the place but she said she had to pee first. So I took her to her bathroom. And I looked into her room, just to see how everything looked, and there was a male resident, who I didn’t really recognize, sleeping in her bed. I looked in her closet to see if I could find the pink Crocs. I didn’t see them there, or anywhere else in the room. I decided not to be worried about it, especially since she has the blue pair to wear. Mom did a good job with her hygiene this time, and her diaper looked good. I was pleased with that. And then we took a little walk down the hall, through the lobby and to the other side of the building. I looked into her old room, where her former roommate was sleeping as her husband talked with an aide, from hospice, I assume. I heard him say he had been associated with General Eisenhower.

We went back to the program area and sat at a table to wait for lunch to arrive. Mom said at one point, “I need a … container.” And she held her hands in front of her. “A purse?” I said. Somehow, I knew that’s what she meant. And she said yes. I happened to have noticed her purse under her bed when I had been in her room before. I told her I’d get it and come right back. When I went to her room, the napper was gone, but he had left behind a giant pee spot. I got Mom’s purse and brought it back to her. She pulled out a little white stuffed dog toy and said, “This is my pal.” She put him in the middle of the table. I went over to Penny, the nurse, and told her about the strange napper’s pee. I asked her if I should tell an aide, or if I should just know it will eventually be seen and leave it be. She said she’d let an aide know. “And then your mom will leave a puddle in the same spot later,” she said. Possibly true. Probable. She wasn’t giving me a hard time. Just sort of telling it like it is around the place. Lots of pee, everywhere and all the time.

At the table next to us, a woman gently rubbed the feet of a male resident who I assumed was her husband. She looked kind of young to have a husband with Alzheimer’s, but I have seen people of a range of ages at this facility. Later I saw her stroking his face. He put his hand out to her, and she kissed his palm. I don’t think he ever spoke a word. But she talked to him for quite awhile. That can be how it is for quite a few family members who have a loved one with Alzheimer’s – talking, but not being spoken to.

Mom said, from time to time, “I’m trying to think of something to say.” I urged her not to worry about that. She wasn’t fretful, though. Just interested in trying to converse. I took that as a cue, and I just started telling her little stories. I had seen a video on Facebook earlier in the day of a beagle that can play dead. I demonstrated that to her, and she laughed. I asked her about the kids and the Halloween party. She didn’t remember it, so then I told her a little bit about what I had heard. She asked how my family is. I said fine. And I told her she is a big part of my family. That puffed her up a little bit.

Eventually, lunch arrived. An aide handed me Mom’s tray, knowing now who I am. Today was fried fish day. Mom doesn’t like fish. They gave her meatballs instead. I am always glad when I see that the kitchen reads the questionnaires about what residents do and don’t like to eat. I got the tray belonging to the woman sitting at Mom’s table. I poured her milk and buttered her bread, just as I had done for Mom. I enjoy helping a little bit. And paying attention to other residents. I kind of assume other family members might do the same for Mom. It’s just that kind of place.

Sunday visit

I went to see Mom on Sunday morning, about 45 minutes before lunch. She was sitting at the same table she had been at on Thursday, with two other women. I sat down next to her and asked how she was doing, and she said, “OK, but the pee is coming soon.” I said if she had to pee, we ought to go use the bathroom in her room. She got up and walked with me, and she said, “I feel so much better when you’re here. Let me hug you.” So we stopped to hug. It might have been the tightest hug I have ever given her.

When we got to the bathroom, she hiked up her shirt to start pulling down her pants, and aimed her butt at the trash can in the corner. “Over here,” I said, pointing to the toilet. “Oh. They’re similar,” she said. She was laughing. I said, “I guess…they are both…receptacles.” We laughed some more. I checked her closet, and found that one of the packages of underwear I had brought in had been opened – a good sign. I could hear Mom fussing in the bathroom. It turned out the extender seat – a raised plastic seat that’s put in place of a regular toilet seat so the user doesn’t have to lower him- or herself so far – was wedged up against the new roll of toilet paper, and Mom couldn’t get any of the paper off of the roll. I reached in and worked the roll around several times to pull off some paper for her. But it wasn’t enough. She had realized she had to poop, too. She was very dramatic about completing her bowel movement, grunting and leaning backwards. I told her not to rush. To just sit and let things happen naturally. And I turned the wedged roll around and around to get her plenty of paper. It was sort of a funny scene. She finished, and I flushed the toilet for her, but it didn’t completely empty. I tried again, and the water level rose dangerously high. I urged Mom to wash her hands. And I watched the toilet. It didn’t overflow. But I just left it. I figured if an overflow was in the toilet’s future, that didn’t have to be my problem.

Mom and I sat on the chairs in the little lounge area near her room to chat. She said she didn’t have any clothes but those that she was wearing – pink pants, a pink striped T-shirt and her Navajo-patterned heavy fleece jacket. And pink crocs with no socks. (I wonder if the staff members don’t know she has an entire drawer full of socks. She never has them on these days.) I told her she has a closet and a dresser full of clothes, and that staff will help her pick them out, and that they wash her clothes every day. She seemed impressed by that. As we were sitting there, I noticed a male resident across the program area from us. He came out of his room with jeans on, but no shirt. I didn’t see him for a little while, and the next time he was in my line of vision, he was wearing nothing but his adult diaper, which was sagging quite a bit. “You have to have clothes on,” said a nurse, who was following him around. She put a hospital-style gown on him. I didn’t see him anymore after that.

Mom and I took a little walk down the hall to the lobby. Mom didn’t seem to recall that she used to nap in the couches in the lobby. There were some families visiting there. And then another male resident, who had followed us down the hall, began to talk to us. I had no idea what he was saying. But I said, “We’re all going back down the hall to have lunch pretty soon.” I’m pretty sure he said he had already had lunch. He kept talking, and we walked down the hall together, and Mom and I stopped to sit on a rocking bench in a little alcove. This man sat across from us on a couch, and he kept talking. And I would nod, and say OK. And remind him that it was almost lunch time. This is a man I typically see keeping very quiet, sitting at the same table as us and not saying a word. I wished I could give him the proper response. I just tried to give him positive feedback of some kind. I hope he wasn’t as frustrated as I was.

I returned Mom to her table and we sat and waited for lunch. Another woman at the table got her tray first and started to eat. I kept looking at the cart to see if I could find Mom’s tray – it has her name on it – but I figured it was behind other trays and I didn’t want to go rearranging all the trays so I just stood around and waited. I went back to her table and the woman at the table had slid her tray over in front of Mom, as if to share with Mom. It was so sweet. She doesn’t talk much, except to say hello. I told her she was being generous but that Mom would get her food soon. The other woman at the table had to be roused from her nap to start eating. An aide finally handed Mom’s tray to me and I put it in front of her. I went to get her a napkin/bib thing that everyone wears and when I came back, I could see she didn’t know how to cut her ham. So I cut it up for her and told her how good it looked. And I pointed out her pumpkin pie – a past favorite of hers. “I have a piece of pie and so does she,” Mom said about the woman who had shared with her. “I’m not sure how that’s going to work out.” I told Mom everyone gets pie so it should be just fine. She likes sweets, so I imagine the pie was the most important thing on her plate. And then I told her it was time to go and I kissed her goodbye.

Catching up

I went to visit Mom, finally, today for the first time in nine days. The last time I had seen her was on Oct. 13, when my Aunt Nancy and Uncle Gary drove over from Springfield for a visit. I met them at the center. Nancy brought Mom chocolate chip cookies from one of the best bakeries in Springfield. We found Mom in the program area and sat with her for a short while on the couches and chairs near her room. Mom had a cookie. She seemed to think she recognized Gary. We tried to chat a little. Gary and I talked about Ohio State football. I showed Nancy some pictures. When Mom’s lunch arrived, we sat with her briefly and then decided to leave so she wouldn’t be distracted. I felt like she seemed just a little bit stressed about the visit, like she wished she had been prepared for it or something. I have often felt she wants to perform for people other than me – like she would try just a little harder to be as present as possible, as chatty as she could be. It makes me sad that she feels any stress like that, but it’s also an interesting phenomenon, that she can make some sort of extra effort for people she doesn’t see very often.

I then went to Texas for a professional meeting. And I saw some close friends during that trip who also live in Austin. I felt a little bit of dread in advance of the trip – about being away from Mom and, even more, from Patrick, about the fatigue associated with travel, about the demand for social activity that goes along with such professional meetings. But it all went smoothly and was quite enjoyable. It was definitely good to have a few nights out with friends I rarely see – my senior year college roommates, in fact. My friend Steve and his wife have a child I hadn’t met. My friend Cam is living in the perfect city for him – all live music all the time. We enjoyed each others’ company.

And the meeting was so interesting, and there were so many people there, that I was able to just listen to workshop presentations and lectures for the most part, and keep the social activity – at least with strangers – to a minimum. I didn’t see a whole lot of my co-workers who also were there, and I didn’t get to catch up as much as I would have liked to with the friends I have made in this association. I was disappointed to feel the way I did. Often, I can be quite chatty, can really get into talking up a stranger with whom I clearly have some common ground, and I certainly enjoy talking to people I know a little bit or a lot. But I was just in a different place on this trip. Preferred to be a little more withdrawn for whatever reason. I wasn’t depressed. I wasn’t fixated on Mom. I wasn’t having a bad time. I was just avoiding the crowd to a certain extent. Isolation was OK with me. I wonder if I over-isolated, however, and missed out on some social activity that might have given me a boost.

The meeting featured a “meet the scientist” lunch, during which all kinds of experts hosted a table for science writers who wanted to hear about their research. I listened to a molecular genetics professor from UT Southwestern Medical Center in Dallas talk about his Alzheimer’s research. He studies a gene associated with the disease, ApoE. When he started his work, his interest was hardening of the arteries (atherosclerosis). Over time, he has shifted his focus to Alzheimer’s. The gene has roles in both diseases. I listened intently and understood what he said for the most part, and recall that he has traced just about the entire pathway defining this gene’s function. But that gets him only so far in terms of, say, being able to guide drug developers in how to interfere with that pathway, or enhance it, or whatever is needed to slow progress of Alzheimer’s, or prevent it, or treat it. One thing that sticks out to me is that he described a pivotal moment when his graduate student called him at home on a Sunday afternoon to describe disturbing mouse behavior. The student wanted to put the sick mouse out of its misery. But this professor realized that the mouse behavior was an indication that the genetic modifications made to the mouse were quite meaningful. He raced to the lab on a Sunday evening to check it out. This was in 1998, he said. Eleven years from that epiphany, there are still no solid answers for clinical application in this one small component of Alzheimer’s research taking place in this country. It is disheartening. At the same time, I was charmed by this man and his dogged pursuit. He is actually quite distinguished in the field. It is just such a complicated disease.

Today, I carted a box of disposable underwear into the Alz center – the ones that had been sitting in my cubicle for a long time. I walked right by Mom as I took the box to her room. She didn’t notice me. She was sitting at a table with two other women. I put the box on the floor in her closet, and I hope the place uses the darn things. The staff members have seemed to ignore the Depends I left in Mom’s little toiletry cabinet. I’m sure they are supplying their own, but before the Medicaid application was approved, I was supposed to supply them. I suppose I will be billed for the underwear the facility supplied between Aug. 28 and now, or whenever they receive official word that the Medicaid has kicked in. I know Mom is cared for. I just don’t know why they’re not using the stuff I have provided for Mom’s bathing, grooming and dressing.

When I walked up to Mom’s table, she opened her mouth and said, “What a surprise.” I hugged her and sat down at the table with her. I said hello to the ladies sitting there. They didn’t really respond, though one woman nodded at me. I told her I had been away for a little while and that I hadn’t seen her in a week. And that it felt like a long time to me. Patrick had told me that on Sunday, an old friend of Mom’s from Cleveland called to say he was in town and he wanted to visit Mom. He got directions to the new place from Patrick and, as far as we know, it worked out OK. I asked Mom if she remembered seeing Ed. She had no recollection of a visit from him, or from Nancy and Gary the week before, or, for that matter, the last time I had been there. I could tell her hair had been washed. She wasn’t wearing glasses, and I asked about that. “I lost them,” she said. I had seen them on the table in her room so I got them, cleaned them and put them on her face. We’ll see how long that lasts. I trimmed her nails and painted them pink.

A local performer came to sing and I sat in a big circle with the residents and listened to her for awhile. Mom said to me, while sitting next to me, “You look like a doll.” “I do?” I said. “Yes. You look good,” she said. “And so do you,” I said. The woman sang “My Blue Heaven” and Mom knew some of the words. Mom said repeatedly that she was a good singer. I said, “She’s going to be here for awhile to sing for all of you.” “Well, happy birthday,” Mom said. It was just an expression of satisfaction on her part. “Merry Christmas,” I responded.

The funny thing was, today was my birthday. Mom hasn’t known about my birthday for about four years now.

Messy stress

So, Mom is content in her new facility, the former nursing home owes us some money and the Medicaid application is approved. So why do I still feel a little edgy? I guess these things can have lasting effects. I have wanted to convey complete peace and serenity now that Mom isn’t pooping in trash cans, trying to escape or otherwise expressing her displeasure about her surroundings. I am now convinced she is going to be fine. But I haven’t yet felt quite fine. My therapist says maybe this is a period of let-down, that in some way I am having a physical reaction to having had to be on standby for the next crisis for several weeks. But shouldn’t that be over by now? Plus, why let the Medicaid application be so stressful? That was just a matter of waiting things out.

Perhaps the Medicaid wait was stressful because I received bills for more than $15,000 from two nursing homes and one pharmacy during that wait. They are addressed to me as the “responsible party.” No matter that Medicaid was going to cover virtually every cent of those bills once the application got approved. Seeing figures like that on a bill can make one a little jumpy. I have also carted around a large envelope of documentation about Mom’s finances since June 22, adding to it as I compiled things I didn’t know I needed to compile. This is what that pile of papers looked like Friday, on the floor of my cubicle, after I had gone rifling through the files while talking to the case worker on the phone:

Bank statements, IRA statements, POA copies, retirement and Social Security information, tax returns, you name it.

And though I am very lucky in terms of my employment, where I am surrounded by coworkers who are friends, my schedule can be flexible and the steady stream of work arrives at a usually friendly pace, I have several stories piling up in advance of a science meeting that will take place at the same time I am traveling for my own professional meeting at the end of this week. And I had to finish up two other timely stories as well. That, coupled with the insanity of last week, when I went a little berserk dealing with Mom’s former nursing home, caused me to not be very attentive to the details of keeping my desk organized. This is how it looked when I left on Friday:

The mess to the right of my computer...

...and the mess to the left of my computer. I've never been known as the world's tidiest person, but I find this level of mess sort of embarrassing.

Finally, the approval of the application means Mom’s disposable underwear will now be provided by the facility in which she lives and the cost will be covered by Medicaid. But because I didn’t know when the application would be approved, I had ordered her latest supply from Amazon.com. This box is also on the floor of my cubicle:

Four packages of 14 pairs each of adult size XL underwear - if only I had thought of Amazon.com a year ago.

I am kind of irritable these days, sadly. I also have had heartburn every day for a week – something I have never experienced before. And fairly regular headaches. So please pardon me while I feel a little sorry for myself even though things are generally going my way. Sometimes, the rest of the body has to catch up with what the mind already knows, I guess.

APPROVED

Mom’s Medicaid application is approved. At least verbally. I should get a letter in the mail soon. I’m so glad I can stop carting around a huge envelope of documentation with me wherever I go. I was doing that just in case the case worker or a nursing home might call with a question or a demand for more documentation.

I spent about a half hour on the phone with my Medicaid case worker before we settled this. I haven’t heard boo from her for almost two months but today she called me urgently to talk about the case. It’s a good thing we talked. She was convinced I hadn’t successfully reduced Mom’s bank account to under $1,500 for August and was going to approve for only Sept. 1 and later. Meaning Mom’s 20 nights of nursing home care in August would be private pay. There is something called Act 52 for these kinds of application problems that allows for gradual payment of bills not considered eligible. But I couldn’t see why she said Mom had too much money when I could see her balance at the end of August was about $1,080. She said we were at $1,510, and asked me several times if I might have a bill from August for $10 in purchases for Mom that I had forgotten about.

She and I both had our computers going, I was flipping through my paper files, and we finally figured out that she was counting an old retirement account of $400 or so against Mom’s August bank balance because she had forgotten to notice that it had been cleared. In early August. So she fixed that on her computer, and with a few keystrokes said approval moved up to Aug. 1. “Now I can approve that bad boy,” she said. These case workers are so overloaded. Even though I was in a panic about the approval date, I tried to stay calm and just ask her if we could take another look to be sure. I’m so glad I did that. She was actually quite nice. She called me “Hon.”

I think I might have a few drinks tonight to celebrate. Good news for a Friday afternoon.

Resolved

I was giving Mom’s former nursing home 24 hours to respond to the e-mail in which I questioned their handling of Mom’s assisted living credit. And then I was going to call the county long-term care ombudsman and file a complaint. Lo and behold, I returned to the office this afternoon from an appointment, and there was an e-mail from the business office coordinator. I was almost afraid to open it. I was braced for a fight, had been talking about this issue at my appointment, had had heartburn all day, and was just generally full of resentment about the whole thing.

The first words were: I want to apologize… Good start. …as I did not review the amounts before I emailed you. Well, that was dumb, don’t you think?? She provided a detailed breakdown of Mom’s deposits, her additional credit from assisted living (meaning I overpaid them for the month of August, stupid me, but I was being cautious), the cost of the carpet replacement (NOT $1,600), and the fact that there is MORE THAN SIX-HUNDRED DOLLARS remaining as a credit that can be applied to Mom’s nursing home bill (which could be for a whole month, or just half a month, I have no idea, because I don’t know all the rules). If it’s only half a month, Mom will get a little something back after all is said and done. Assuming Medicaid is approved.

Please know that the Facility would never claim a credit amount ‘because it’s there’ as that would be a violation of the Resident Admission Agreement. I guess she had to say this for the record. Maybe my sarcasm didn’t come through.

To her credit, she was polite. Just gave a straight response to my cranky questions. Began with an apology. Provided the correct information. If only she had done that the first time.

I wrote back that I accepted these terms and authorized application of that credit to Mom’s nursing home account. Because Noah the administrator was still being copied, I took the opportunity to say that had anyone told me between yesterday and Aug. 12 (or Aug. 14, I guess, when we officially vacated the assisted living apartment) that the carpet was damaged, and that we would be responsible for paying for its replacement, that could have prevented my intense reaction to her message. I still don’t like it, but it would have made sense, and been courteous, and been appropriate, to inform me of this at the time the decision was made to replace the carpet and bill my mom for the cost.

Still no word from Noah, who I believe is ultimately responsible for this entire mess. And really, whatever, I don’t care. The biggest problem with this now is that I was all worked up with rage and then had no place to put that energy when I got this e-mail. So I cried a very little bit. And now I have a splitting headache. But in the long run, it is a good thing that this particular problem is put to rest.