Archive for August, 2009|Monthly archive page

Settling in

I am exhausted today, despite the decent night of sleep. I guess it’s catching up with me a little bit, all this fuss over Mom. I did go back to work. And got some work done. But I also went to the Alz center to fill out the required admission paperwork. When I got there, Mom was just entering the lobby. “Isn’t this amazing,” she said when she saw me. The activities director, meeting me for the paperwork, said Mom had attended church this morning. I sat Mom on the couch in the lobby and said I would be meeting with Meg and would come out and visit Mom a little later.

An hour later, I emerged and found Mom on that same couch in the lobby, sound asleep.

Mom and dog/cat take a little morning nap.

Mom and dog/cat take a little morning nap.

I figure if she can relax enough to fall asleep in this public space, she is feeling pretty good. Two different staff members have told me about seeing Mom plop onto the same couch. The business manager who happened to be in on Sunday said at one point Mom had her legs hoisted over an arm of the couch and was lying on her back, fast asleep. This cracks me up. Mom really never met a couch she didn’t like. Today, I woke her up and combed her hair and walked her into lunch before I left.

Saturday and Sunday visits went well. I got all of Mom’s clothes and belongings labeled with her name. I painted her nails on Saturday and we took a walk in the secure outdoor area. She also played a little shuffleboard. On Sunday, she played a little game knocking balloons around with those swimming noodle toys, and later, we watched Jackie Gleason on TV in the program area for a little while. I said I needed to get going to the grocery store and she said, “Go ahead and do what you need to do” and said she would be fine staying there and watching TV. She has said she’s afraid of getting lost, that she is afraid in general. But she isn’t really saying these things with the feeling that she had before when she was making complaints about moving. Perhaps she is saying them out of habit now. But she does not seem fretful. Staff report that her appetite is very good – and she does not eat as well when she is stressed, I have found. A receptionist saw her walking around and sitting in the lobby Saturday with a friend, though I don’t think she remembered doing that by the time I showed up later that day. I imagine she feels uneasy sometimes, that she knows she’s someplace new. But it is not causing the profound anxiety that she had at the other nursing home, where she was agitated so much of the time. As Patrick says, it wasn’t just the administrator at Whetstone telling us that it wasn’t working out with Mom; Mom was telling us, too, in the only way she knew how.

New digs

So, there I am again, at work, thinking I can finally catch up after 1 1/2 days of scrambling to get Mom on waiting lists for other facilities in town. My phone rings, and I think to myself, if that is Noah the administrator, I might say or do something I regret. Instead, it’s the social worker. Telling me a bed has opened at the Columbus Alzheimer Care Center, and they have accepted Mom for admission and are ready for Mom to move in. Today. This was quite a shock, but there was no way I wasn’t going to jump on this chance. I told her I’d set everything in motion and we’d move her today. I called Patrick and asked him to take the day off of work. I e-mailed my sister, brother and brother-in-law to tell them it was happening today and I’d talk to them later about details. I e-mailed my boss, who was out the office, and said I needed another day off to move Mom. I updated my Facebook status with the good news. Patrick came to my office to pick up boxes, and we were off.

My plan was to take Mom to lunch and for ice cream while Patrick moved her belongings. When I got to her place, I saw Mom listening to music in her lounge and I went to the nursing station to ask if I needed to sign her out…permanently. Not necessary. They gave me some paperwork to give to her new nurse. They shared stories of her latest antics – mostly a refusal to have her hair washed in the shower. The activities aide, a young man who Mom had immediately liked, said she had spent an hour with him one day just walking around. He could tell she wasn’t mean like some people are. I thanked them for their efforts with her and said I’m sorry it didn’t work out. I said a special thanks to Stephanie for being so nice to me. I went up to Mom and asked her if she wanted to go to lunch and she said yes with no hesitation. She got up and said goodbye to her roommate, who said, “Come back,” and Mom said, “I will.” I almost choked up right there. Walking out of the building, I started right in on the news that I was moving Mom. I told her I was concerned that she wasn’t happy, and I found a new place where I thought she would get the right kind of care – she wouldn’t have people following her around all the time, telling her what to do. She seemed intrigued by the idea.

We went to Bob Evans for the usual, pot roast hash for her and a big salad for me. Then we went to Graeter’s for ice cream to take up some more time and so we could both have a treat, darn it. By this time it was 1:30 and I just wanted to get Mom to her new location and start that process. We went in and went to her room, where Patrick was separating out all breakable items to take home and sorting pictures to give to Mom for a new plexiglass frame (no glass allowed in this facility). Mom seemed to like the room. She sat in a chair while we worked on putting things away. Her roommate, B, was asleep in a chair for awhile. She woke up and came over and ran her hands over some of Mom’s T-shirts that had bright pink stripes. She can’t talk anymore, but she is mobile and she is curious. Patrick got what he needed and left – poor guy has a long class tonight for his new grad school program, plus a hand injury from work. I finished putting Mom’s clothes away. A nurse came to examine her. Looking at pictures had reminded Mom of her grandmother and she was trying to talk about the past. She finally got fed up when the nurse asked to look in Mom’s mouth, so the nurse left and said she’d try again later. I filled out an inventory of Mom’s things. The roommate came over and took Mom’s alarm clock and walked out of the room and dropped it in the hall. While I ran to my car to get Mom’s laundry, she took Mom’s glasses off of her face and dropped those in the hall, too. I found Mom lounging on her bed, not concerned about her missing glasses. B also sat next to Mom on her bed and held one of Mom’s teddy bears for awhile. She has a sweet disposition and I want to share with her, and I think Mom will be inclined to, too.

The room is bigger than her previous room, and is brighter. The facility discourages bringing much into the place to avoid falls, theft and the use of items as projectiles, I think. The TV is discouraged, and I don’t think Mom will miss it. When the housekeepers made the bed, they put a crocheted throw on for her main blanket. I love that. I need a knitting project, and I am thinking perhaps I can knit a throw for some future patient in this place.

Mom on her new bed. The buffet in the background has been in our family all of my life. Now it's her dresser.

Mom on her new bed. The buffet in the background has been in our family all of my life. Now it's her dresser.

A small stand, Mom's closet, and the door to the bathroom.

A small stand, Mom's closet, and the door to the bathroom.

The view from Mom's window. She's on the window side of the room this time.

The view from Mom's window. She's on the window side of the room this time.

We decided to take a walk around the place. On our way out of the room, an activities director stopped me to ask some questions and have me sign a few forms. I ran into my neighbor, a social worker for a hospice organization in town, which was a pleasant surprise. Then Mom and I went and sat in the lobby, and a nurse came to talk to me for a bit about what happened at Mom’s previous location. She also said to me, “I’ll bet you’ll sleep well tonight. You are probably exhausted.” This is the first time a staff member at a facility in which Mom lived has ever said such a thing to me. Later, when I was leaving for the evening, she said, “Hang in there, Emily.” This is among the reasons Mom, and I, will be better off at this facility, where the staff members know how hard Alzheimer’s in particular is for a family.

Mom in the lobby, with the front desk behind her. It's a really nice space. A little later, it filled up with residents watching a sports bloopers program on TV.

Mom in the lobby, with the front desk behind her. It's a really nice space. A little later, it filled up with residents watching a sports bloopers program on TV.

A view down the hall to the other wing. There are two wings, and Mom is in the smaller one, which actually typically houses patients with more advanced disease. Eventually, she can move to this other wing - for now, she is occupying the first available bed. I think staff will help her get to this other side for activities and more interaction with residents.

A view down the hall to the other wing. There are two wings, and Mom is in the smaller one, which actually typically houses patients with more advanced disease. Eventually, she can move to this other wing - for now, she is occupying the first available bed. I think staff will help her get to this other side for activities and more interaction with residents.

We watched sports bloopers on TV for the 4 p.m. activity. Lots of patients were wheeled in for this event. A few were able to walk in. Mom was surveying this new landscape, and I sensed she might think there were too many sick people around. She was worried about one woman who was leaning forward way out of her wheelchair. At dinner, I think Mom had similar feelings, like she was surrounded by people sicker than she is. I hope to encourage her to go to the other side of the building, where most patients are not as advanced as they are in her wing, so she’ll feel a little more comfortable. She put dog/cat and three other stuffed animals on the dining room table and said maybe the other people at the table would like them, too. I told her she has a nurturing side to her – that she likes kids, and she cares about people who seem sick or in need of help. “Really?” she said. But it’s true. She turned to the woman to her right, in a tipped-back wheelchair, and said, “What’s your name?” The woman was named Frieda. Mom didn’t tell her her own name. I had told Mom I would be leaving when she had dinner – this was while we were still watching bloopers. She got a little fretful at that time and said she was afraid to be alone. That she was nervous. I told her staff would look after her and do all they could to make her feel at home. I told her I would be back tomorrow, but I had to get home to let the dogs out of their crates and check in on work. She didn’t like it, but she was not particularly angry. Sort of resigned to it. “Let’s not do this again,” she said. I assume she meant let’s not move again. She also said, “Am I going to be here the rest of my life?” I told her let’s think in terms of one day at a time. We don’t have to decide anything about her whole life now. She let me kiss her goodbye.

I took one more photo before I left.

A picture of Mom from high school, taped above her bed. She had this photo taped to her wall in her assisted living apartment, so we have kept it close to her since then.

A picture of Mom from high school, taped above her bed. She had this photo taped to her wall in her assisted living apartment, so we have kept it close to her since then.

A nurse and a social worker

I got some facts today that have improved my outlook about Mom’s circumstances. The most important: There is some law on our side. The nursing home is required to give us 30 days to vacate after they provide written notice that they want Mom to move out. There is no written notice as yet and ideally there never will be one. But at least now I know they can’t actually dump Mom. I called the county long-term-care ombudsman to find this out. I did not lodge a complaint against Mom’s facility that would set off an investigation. But I asked questions, got some information about the places I am considering, and just generally wanted to talk to a disinterested third party about what was going on. Getting the information about the law made me very glad I made that call.

I also talked to the nursing director at Mom’s facility and the social worker handling Mom’s case. Though it remains true that Mom is probably not a good long-term candidate for their facility in their eyes, the nursing director was reassuring about the care Mom will receive until she leaves. I left her a voice mail saying I was seeking a second opinion beyond what Noah had told me. She called back within about an hour and a half and we had a lengthy talk. She had read the nursing notes about Mom to familiarize herself with the details. She said she has seen Mom camp out by the front automatic doors, as if she wants to pounce out of the place at her first opportunity. She also had a couple of more details about Mom’s toilet issues. In addition to pooping in a chair in one man’s room, she pooped into a trash can in another room. So that is undesirable behavior – not something that should get her kicked out, but part of the package. She is entering other residents’ rooms with some regularity, which is among the reasons she really needs to have the one-on-one. The nursing director was at least kind, acknowledged that this turn of events sucks for me, said she can imagine I am shocked about the whole thing, and said she promised Mom will get good care until I can find a new place for her. I told her I was really worried about that – not because I had any indication the staff were mean but because I imagine less is invested in short-timers in general. I made a point of telling her how many aides and nurses I had talked to and how involved I have been. She also asked me to seek her out and introduce myself to her. So I feel that she is not going to avoid me. And even if it is only a public relations move on her part, it is helping me feel less completely hostile about what’s going on. She made the mistake of also recommending the secure ward in their Grove City facility, where she also used to work. She said, “Now this isn’t a ploy or anything,” and then talked about how great that place is. I can’t help it, I just refuse to go there. But maybe I will tour it just out of curiosity.

While I was talking to her, the social worker left a voice mail on my cell phone. My first nursing home choice for Mom had called her to let her know I did not get either of the two beds that were open yesterday. But a bed is expected to open up next week. Sadly, this means someone is dying. I know the deal about how most beds open up in nursing homes, especially those devoted to Alzheimer’s care. So I called the social worker back just to clarify how this will work – will she get notice about an available bed or will I? She said either of us could. She said she’ll check in with that facility Monday. I told her it is my first choice for a variety of reasons. Finally, she said, “How are YOU doing?” This goes a long way, I must say. I told her I am better today than yesterday, that yesterday I was really mad. And she said she could understand that. Everyone wants Mom to be safe, she and the nursing director said. I want Mom to be safe. Even if she did get completely comfortable there, it is true with Alzheimer’s that she might walk out a door someday with no warning, as long as she can walk. I understand that part of all of this. I totally do. Anyway, the social worker offered to be MY social worker if I need to talk. So that is progress.

I also toured two other facilities, one another all-Alzheimer’s center and another with a secure ward within a regular nursing home. The all-Alzheimer’s center I toured is a very close second to my preference, the Columbus Alzheimer Care Center. Its patient rooms are the most home-like I’ve seen. The rest of the place isn’t as open and bright, but it would certainly do. The activities room was packed. The staff I encountered were terrific. Mom’s neurologist is the medical director. It’s farther away from my house, about 7 miles, but that is not a disaster. I did not get a call from admissions today as I was supposed to, so that’s an irritation. The other place I toured would be a desperation backup only. The facility itself is cosmetically really nice looking. But the Alzheimer’s ward was depressing, the activities room was empty, the dining area was tiny and the residents looked really out of it. The nursing and aide staff did not acknowledge me in any way while I was looking around. I think it might be all looks and not much substantive care.

Meanwhile, I decided to visit Mom today, too, an hour and a half before lunch. I went in just assuming no one knows anything. I chatted with staff, said hi to the nurses, checked Mom’s room. An aide told me she was in the activities room, and I found her there, waiting for a music program to start. Her one-on-one was sitting at a table in the back of the room, and I sat down with her for a little while. She said Mom seemed OK, not angry about anything. Not exit-seeking. Not mean to the aide. She was looking forward to the music. I then went and sat next to Mom on the floor. We sang along with the tunes performed by a woman playing a guitar. Mom had dog/cat, so that is good news. (I liked this about the aide: I said, “Oh, good, she has her dog.” “That’s cat,” the aide said. Righto, missy.) I wrote Mom’s name on dog/cat’s tag while I was sitting there. I noticed Mom wasn’t wearing a bra and her hair was a mess. This could have to do with what she lets people help her with, I think. I ran my fingers through her hair to try to brush it a bit. Her hair seemed clean, so I figured she must have had a shower recently, and the nursing director confirmed that later, that she had been agreeable to a shower a day or so ago. After the program, I walked Mom to the dining room and waited until her food arrived and I left. She didn’t say a whole lot, but she did say, “This is a good place.” That, plus just walking the halls, made me weepy. By the time Mom has to leave, she will have come to feel at home. And I realized this is affecting me, too. I like this place. I am comfortable here. I know many staff members’ names. I know a few residents by name and personality. I know where things are, where the best lounge is, the shady spots in the courtyard. I will be experiencing a loss, too, when I move Mom out of there.

Kicked out

So, I’m sitting at my desk at work, trying to concentrate on a news release that should already be done. I’m not doing half bad at sticking to it so I can finish it off before the end of the day. It’s about 11 a.m. My phone rings. It’s Noah, the administrator from Mom’s facility. Do I have a minute? I have butterflies. A call from Noah is not a good thing at this stage of Mom’s transition.

I wish I had recorded the things he said. Obviously I’m calling about your Mom. It’s not working out. She had a bad night again last night (her second bad night; the first was her very first night). She hit a staff member. (Was she hurt? I asked. No, she’s OK.) She approached a door again. I talked to the chief of nursing, and the feeling is that no change after two weeks means she is not going to change. (I wish I had said: Did you talk to a single floor nurse? She has changed quite a bit since her first day, according to nurse Stephanie). I think you should probably look into a secure Alzheimer’s unit for her. She’s always agitated when I see her or try to talk to her. (I wish I had said: She probably knows you better than any of us and hates you, you asshole.) So, there is no willingness to try some medication to affect her mood, I ask. No, I also talked to the doctor and he doesn’t want to medicate her any further. OK, well, my first try will be to the Columbus Alzheimer Care Center, where I have attended support groups a few times. All Alzheimer’s all the time. They will know what they’re doing there. (I didn’t say that last part out loud.). Well, Noah says, you might want to consider one of our other facilities – we are part of a chain. We have a secure unit in our facility in Grove City. It’s really nice, recently renovated. I was the administrator there before I came here. That would be three strikes against it: Noah ran the place, it’s in Grove fucking City, and it’s part of the same rotten corporation currently removing my mother from a facility. I don’t think so. My dad and brother both immediately said: isn’t that a conflict, for him to recommend another facility in the same corporation? Could he have had an agenda all along? Is this not even possibly illegal? Crazy with the drama of it all, I hadn’t even thought of that. (And interestingly, I asked the social worker with Mom’s neurologist to recommend any places and offer her insight about this facility Noah mentioned. She did not recommend his former facility, she said.) And finally: How soon do you think you could make arrangements for your Mom to move? Well, I will do the best I can because I want her to get the hell away from you, I thought. Out loud: I should be flexible so I can devote time to it right away.

So then I cried and called Patrick. It didn’t take long for a new emotion to emerge: Move on. Mom will be better off. Get to it now. Get her out of there. Take her Medicaid dollars away from them as soon as possible.

I called the Columbus Alzheimer Care Center and scheduled a tour for later this afternoon. The place is bright, has wide open spaces, has fake wood floors to foster cleanliness (A lot of the male residents think they can go to the bathroom just anywhere, my tour guide noted). The rooms are bigger. The residents can roam and wander as much as they want. They are expected to. There are activities that residents are guided to. Staff have worked there four, seven, 10, 14 years. It was founded by the man who still serves as the medical director, a former chief of neurology at Ohio State. I got a good feeling and filled out some paperwork. There are two beds open and the competition can be fierce. The sooner Mom’s facility could fax over some information, the sooner I’d be in the running for one of those beds. I called the social worker at Mom’s place and asked her to send the fax. I said I was in a competition so time was of the essence. I can only hope she followed through, that she has more of a conscience than her administrator and wouldn’t, you know, drag her feet to reduce my chances of getting Mom placed there. She did not make small talk, didn’t acknowledge this unfortunate turn of events. Fine. I am looking at a couple of other places, but am really hopeful about this center. They want to fill their beds, so an eager family might be just the ticket.

I also left a voice mail for the admissions staffer at Mom’s place, asking her to fax me a copy of the admission papers I signed. I should have gotten a copy the day I admitted her but I am dumb that way. I just said matter of factly that I need those papers, either by fax or by a copy left for me at the desk, tomorrow. I hope she wonders why I’m asking. I just want to know Mom’s rights. But I also hope to make everyone squirm if I can. I at some point will remind them that I spent Mom’s life savings and two years of her small income, probably about $80,000, at their assisted living facility, and the thanks we get is a push out the door after an arbitrary two-week deadline for her to adjust. I also did not visit Mom today. I figured I would not be in good shape to discuss anything with any staff I might see, nice or not so nice. But I also thought: You don’t like her? Well, you’re going to get an extra large dose of her because I am now too busy to visit her and take her off of your hands. Not necessarily good for Mom if she is suffering, but I can’t truly alleviate her suffering until I can take her out of there permanently. Also not exactly taking the high road, but I think I deserve to unload a little bit on these people.

Dog/cat is missing

Yesterday, Monday, was the first day in nine days, I think, that I didn’t see Mom. I went back to work, and I was sort of busy, and we had a special staff lunch, and I wanted to go to an exercise class after work, so I just didn’t make time for Mom. I called her nursing station late in the afternoon to see how she was doing. I said I was wondering if Mom had had “a reasonably not terrible day.” That made the nurse laugh. Mom is back with a one-on-one at all times, or at least during waking hours. The one-on-ones are now staying back when Mom approaches a door to see what she’ll do. Often, she will just look outside and then walk away. She did have one moment yesterday when she bolted out the main front door, which automatically opens when a person walks by. She apparently told her aide there was nothing she could do to stop Mom. This aide coaxed Mom back in and by the time they got around again to the nursing station, Mom was fine. The nurse I was talking to was the same one I had talked to Friday night. She is gentle and kind, and I appreciate the concern she expresses, and her high hopes for Mom to continue making progress. “Watch out,” I said, “or you’re going to be my favorite. You’re so nice to me.” She laughed at that, too. I can imagine the staff members have many and mixed emotions about family members. I’m hopeful that I am doing things as “right” as I can as far as they are concerned. Being there, not being bossy, giving them relief, asking them questions, giving them information that might help them. I continue to come across people who knew Mom on the assisted living side for one reason or another, and that is a comfort.

My weekend visits were shorter. On Saturday, I visited Mom about an hour before dinner. I frankly sort of forget how it went. That’s a good sign, that it was rather uneventful. She seemed to be doing OK and I dropped her off at dinner at her table with Zolie and Ruby, the people my sister and I sort of picked to be her dining companions. I do recall that on that day, Mom was just having 15-minute checks. So she was sort of on her own, with staff hunting her down to see what she was doing every 15 minutes. And she didn’t try to escape.

Sunday is more memorable. I visited Mom shortly before lunch. She was lying on her bed. There was a one-on-one in her room. She informed me that Mom was back on the one-on-one schedule, in part because of what she had done the night before. Sometime after dinner, she had walked into a man’s room, sat in a chair and took a dump, right there, in her pants. This would be the third poop accident I know about that has occurred somewhere other than in her own bathroom. If she’s anything like me, she has intestinal issues when she is experiencing a lot of stress. I wonder if that could be a contributing factor. Or can she not find a bathroom fast enough? She is eating the same food, so I imagine she is not adjusting to a new diet. I wonder if she is just becoming more incontinent all the time. It is dreadful to think this way, but I wish, if that is the case, that she were less mobile so her accidents would be less likely to occur in such distant places. She had objected Sunday morning to have any help with grooming on the lower half of her body. The aide had managed to change her shirt, but Mom wouldn’t budge about the pants. She had, however, had a nice shower on Saturday, I was told. I agreed to change Mom’s pants and disposable underwear. After that was taken care of, we went to the lobby to read part of the newspaper. We walked in the courtyard a little bit. She seemed fairly typically confused but her mood was pretty level. I dropped her off at lunch and as far as I know, she was fine the rest of the day.

Today, Tuesday, I did visit, after her lunch and my lunch. I found her walking in her hallway with an aide, one who had been with her last week. She said Mom seemed to be doing OK. I asked Mom how she was and she said, “It’s really bad.” But she just about immediately forgot that, because she never said it again. She looked a little messy. Her hair was all crazy and I think she was wearing the same socks from at least Sunday. This isn’t typical, but I wonder if she is putting up a fuss when an aide is helping her get dressed. I noticed right away she was not carrying dog/cat. She had a black stuffed dog instead.

Scooby Doo, where are you??

Scooby Doo, where are you??


I asked, “Where’s cat?” which was stupid, because Mom would not be able to tell me. The aide pointed to her room. I told the aide I’d be there for about 45 minutes. We went to Mom’s room. I brushed her hair and put some lipstick on her. I looked everywhere for dog/cat – in the two closets, the bathroom shower stall, under the bed, in Mom’s drawers, in the laundry basket. I thought he might have gotten dirty again. He was not in the room. I didn’t want to alarm Mom. I know he’s got to be in that building somewhere, and many people know he belongs to Mom. I gave up and asked her to take a walk. We were going to go to the lobby and look at the newspaper, but when we got to the aviary lounge, Mom sat on the couch there. There was a songbook on the piano this time. I asked Mom if I should play something. I can read music, but I no longer trust I can play both left- and right-hand parts of songs anymore. I played the melodies of a few songs: “We’ve Only Just Begun,” “Singing in the Rain,” “Try to Remember.” I sang along a little bit. A housekeeper came by and sang along, too. It was fun. Mom started to sing the words to “Edelweiss,” just the first word, really. I would have played it for her, but it wasn’t in the book. She can remember song lyrics every now and then.

Mom seemed sort of befuddled today. Not fretful, but sort of flat and at the same time talkative – but talking nonsense. She said she doesn’t have anyplace to sleep, something she used to say in assisted living. She was asking about her money, saying she had some out in the world somewhere. I told her I use all of her money to pay for where she lives. I think she was trying to say she wants me to use her money to move her back to assisted living or someplace else. I wonder if someone said something to her about money, maybe a resident. When I knew I would need to get going I tried to think of where to take Mom that would make it easiest to say goodbye – something to occupy her. We went into the activities room, where there was going to be a Bible reflection discussion, but the teacher hadn’t arrived yet. Mom’s roommate was in there, and I said hello to her and Mom said, “Hi, Honey” to her. I sat Mom in the back of the room, but she seemed uneasy, so I suggested she watch TV in a lounge instead. I walked her there and arranged a chair to face the TV, and she sat in another chair instead. I told her I was leaving and kissed her goodbye. As I was walking out, a new aide was walking toward her. At the nursing station, I asked if anyone had seen the dog/cat. The nurse and aide both had seen it yesterday and even this morning. The aide said she would try the dining room. I had looked at Mom’s table, but not anyplace else. I have not written Mom’s name on it – that is something I need to do. I’m supposed to write it on all of her clothes, too. For some reason, I find that annoying. But it’s a good idea, I suppose.

A little tough love

Things have been mostly good with Mom since the Wednesday night concert. That was quite an event, held inside because of rain. The dining room was packed with residents and a few family visitors. The facility offers free food and door prizes. When I got there, Mom was eating a hotdog and popcorn. This was shortly after dinner. I’m glad she has an appetite. When she doesn’t eat well, it usually coincides with stress, like the most recent cat death and the move to the nursing home. We sat through the music, clapped and sang along. When it was over, I went with Mom back to her room. It was 8:30, typically her bedtime. She got into bed, but was still in her clothes. Now that she has aides around, she changes into pajamas every night and into a new outfit every day. I was turning her over to her aide, and I said I had to leave. She said, “Oh, no, don’t go” and reached her arms out to me. She has never done this, and it was terrible. I told her it would be OK, that she would be asleep soon. She calmed down and I kissed her goodbye. As I was driving home, I felt upset. I guess this is how parents feel. I thought of the time I was visiting my sister and her husband at their house in Connecticut 20 years ago, when their baby Julia was just about four months old. Laura was trying to teach Julia how to fall asleep by herself. This often involves letting a baby cry. Laura was shattered by this whole thing, and at the time, I thought, is it really that big a deal? I can see now why that was so painful. I opted against parenting, and I’m glad for a variety of reasons. Now I am getting a taste of it, but mostly of the difficult parts. I do not get to see a child grow up and become her own person. Instead I am watching my mom become more and more like a child every day. It is an interesting experience, and certainly is teaching me a variety of things. I hope that, when the stress of this move has passed, it might make me more patient – with Mom and just in general.

I returned Thursday in the morning. Both Mom and her roommate were taking a nap. I relieved the aide for awhile and read a magazine while Mom tried to sleep through all the noise in the hall. A little after 10 a.m. she decided to get up. We went to the lobby to read the newspaper. I had a deadline this time: an 11:30 date with friends for lunch. And a friend was visiting later in the afternoon, and I would be picking him up at the airport. I left Mom in the lobby with her aide and went to lunch. I had a fun night out with my friend, an old college roommate on his way to Athens to attend his niece’s wedding. He, Patrick and I had dinner and drinks. The next morning, we hung out until my friend had to meet his brother for a ride to Athens. I had spent more than 24 hours away from Mom by the time I went to see her around 2 p.m. on Friday.

I found her sitting in a little lobby area surrounded by staff. “Here comes her daughter,” one staffer said, and I said, “What’s wrong?” They laughed at me for that – there was nothing really wrong. Mom was being just a little bit grumpy – there was a birthday gathering in the courtyard, and she didn’t want to attend with her aide. But when I arrived, Mom said it would be OK to go out there with me. I relieved the aide and we sat outside with a pretty large group of residents. They were served homemade sno-cones and there was music playing. This is a monthly event to celebrate any birthdays of the given month. Mom seemed fine. A social worker came over to us and introduced herself to me and asked how things were going. I told her there had been lots of improvement since a week ago, when Mom spent hours trying to escape. She then did an assessment on Mom right there, asking her a series of questions, I assume to gauge her level of memory loss as well as her mental health. The questions included the usuals, what day is it, what month is it, what season is it, what kind of facility is this. Then she asked Mom about whether she is happy, whether she feels helpless, whether she has hope for the future, whether she has regrets about the past. Mom answered, when she could, in a generally positive way. This was a relief to me. I figured she didn’t really comprehend that she was being examined about her potential level of depression. When it was over, I suggested we go to the lobby to read the newspaper.

We sat on our usual couch and I gave Mom the funnies. I read through a couple of sections. I noticed Mom was occasionally looking at the paper and occasionally just sitting there picking her chin. There were several people in the lobby area chatting, but eventually it cleared out. I had another deadline today: a 4:15 massage. I wanted to leave by 4. A little before then, Mom started to complain that she is very alone at this facility. She said I should have told her earlier that she was moving. She had said a few things that suggested to me she might have had another visit to the assisted living side, but I didn’t pursue any information about it because 1) I didn’t want Mom to remember it and 2) if I had asked an aide about it and found out it was true, I would have been pissed that she was allowed over there when I have instructed staff not to take her there anytime soon. I could see she had developed a bit of a black cloud over her head. I told her we should walk in the courtyard to look at the trees, flowers and birds. As we were crossing to another door, she sat down in a chair and complained some more. She noted that there were no people around outside and she didn’t like that. We walked inside, and found one familiar person there – Audrey, a former assisted living resident who moved to the nursing home before Mom. She is feisty and has said she doesn’t want Mom to follow her around. I appreciate her honesty. But on this day she also said she had been diagnosed with pneumonia, and I wanted to get away from her as fast as I could. I took Mom to the lounge to see if she wanted to watch TV. I told her I needed to get going. I found out she would not have a one-on-one for the rest of the day – she is being weaned off of that. Which I think is a good thing, but I was bummed that it was coinciding with her bad mood. A nurse came to give her her antipsychotic. I expected that would calm Mom eventually. I took Mom to her room, turned on “Bonanza” on her TV and suggested she just rest for awhile to see if it made her feel better. It was 4:10 and I had to get out of there. So I kissed her goodbye and left. Once again, I felt terrible. But I figured that, like a child, she has to learn to find her own happiness to some extent.

I actually dozed off during my massage, which was just wonderful. I came home and fed the dogs and played with them so they would get tired. The nurse said I could call to see how Mom was doing, so I called around 6:30, after she would have had dinner. The nurse said Mom had been wandering from time to time, not agitated pacing, just walking, and staying in the vicinity of her room and the lounge by the nursing station. She had eaten dinner with no problem. This nurse said Mom knows how to find her room and seems capable of finding her way back to section 3, her hallway and lounge area. Mom never went toward any doors to escape, though. I said I guess it’s just time for Mom to figure some things out for herself, and that I found that necessary, but difficult. This was when I brought up the concept of tough love. She said it is hard to let go, but it’s probably the right thing to do. She was very kind, and I was grateful for that. She said I could call again before her shift ended if I needed to. When we hung up, I burst into tears. I repeatedly said to myself, “I’m sorry, Mom. I’m so sorry.” It makes me sad right now to think about it. This was an intense, but short, burst of emotion. I calmed down pretty quickly and generally was able to put these most troubling thoughts out of my mind.

I’m home alone for a couple of days while Patrick visits his parents in Michigan. I thought I would watch some sort of mindless movie on TV, but instead I watched “Away from Her,” a movie about Alzheimer’s, for a second time. And while I watched, I scanned a book, “Alzheimer’s A to Z.” The book is for caregivers. It mostly has anecdotal information about what patients might do and strategies to deal with these things. I actually find it a little elementary and only marginally helpful. I decided to turn off the TV and read some crime fiction in bed with the dogs. I put them to bed before 10 p.m. and fell asleep fairly easily. I woke up at 7:30 a.m. So I really shouldn’t complain about being tired today. I’m contemplating a long walk in the sunshine and an eventual visit with Mom that I think I will time to occur shortly before dinner. I’m hoping for a happy Bonnie today.

Better days

Jeff and Tom left yesterday morning. They stopped to see Mom before they left. With trepidation, I sent Jeff a text asking how Mom was. He sent back two messages, one saying the nurses were reporting she had a rough morning and one with a little more detail about how she yelled at people at the nurses station. I’m sure she behaved better once Jeff and Tom got there, so they didn’t see any of this firsthand. I went over right after lunch. I found her walking the halls with an ice cream in her hand. She was with Tiffany, a nursing scheduler who might be my favorite staff member so far. She laughs a lot and hugged and kissed Mom the other day. She is giving Mom a chance to show her good side, and I appreciate that. Tiffany turned Mom over to me. I also ran into Mom’s one-on-one for the morning, who said Mom cussed out the nurses station and had done a lot of pacing. Mom also had had a messy bathroom accident in a public restroom and wouldn’t let anyone help clean her up and absolutely refused a shower. The one-on-one managed to change Mom into some new pants and bag up the soiled pants. She also bagged up Mom’s dog/cat because it got poop on it. I told her I would give her some relief from Mom for the day. She was maintaining a decent attitude, but I’m sure she had just about had it. Mom continued to complain to me about her, but I tried to explain that everyone is there to help. Sometimes, Mom just cannot be convinced that a person is really on her side. So Mom still has one-on-ones, but she hasn’t tried to escape since Friday.

I told Shana, the aide, that I would give Mom a shower. She set me up in the bathing area with towels and washcloths. The shower in Mom’s room doesn’t work, and it’s pretty common for residents to be bathed or showered in the staff bathing areas because they have lots of space to move around, plus draping for privacy. I coaxed Mom out of her clothes and all of her jewelry, which wasn’t easy. I sat her on the chair in the shower and just started the washing process. I washed her hair and face first to get that part over – she doesn’t like her face to get wet. I scrubbed her as well as I could all over, and though I didn’t see any obvious poop on her butt or legs, I tried extra hard to get those areas clean. I dried her and put her in clean clothes, got her many bracelets back on her wrists and took her to her room to dry her hair. I put lipstick, powder and blush on her. She looked pretty good. I also decided that it would not do for her dog/cat to be gone for as long as it might take me to get it cleaned at my house, so I took it out of the bag and gave it a bath in Mom’s bathroom sink. It didn’t look visibly soiled, but I gave its fake fur a good scrubbing and dunked its whole body under water. I tried to wring water out of it and hung him on the shower curtain rod in her bathroom to dry. Mom was a little upset about not having him to carry, so I tried to accelerate his drying with the hair dryer. But it wasn’t making much progress. I gave her a black stuffed dog as a substitute until dog/cat gets dry, and that seemed to work.

We went to the lobby to read the newspaper. We walked back to Mom’s room, and she was ready for a little nap. I had brought a couple of magazines for her, so I read People magazine while she slept. Her second aide for the day came in and I told her I was hoping Mom could be part of the manicure activity at 3:30. Instead, her aide, a recent cosmetology school graduate, gave Mom a private manicure in her room. She also told me she would give Mom’s roommate a manicure, too. I left them as that process was starting.

Today, I decided to go over in the morning to see how Mom was doing. When I got there at 9:30 Mom was resting, and her aide told me she had had a good breakfast and a good bowel movement – no accident, and no fighting about the cleanup. Mom had on a new outfit and she seemed to be in a pretty good mood. I told her aide I would stay until lunch time. Mom got up then and we went to the lobby to read the paper. I like this routine. Mom tends to read mostly the life section, and looks at the comics. She can still read, but I don’t think she absorbs anything at all. Sometimes she’ll read headlines out loud to me. We sit together on a couch to do this. I’m hoping I can make this part of our pattern a few mornings a week. After we finished, we checked on dog/cat, who is still damp. I put him in front of Mom’s little fan so he might dry more quickly. We went to the lounge to watch TV, and there I found Mom’s coloring book and crayons that Patrick bought for her on Friday, the day she tried to escape. I colored a picture and then asked Mom if she wanted to color one. She selected a picture of a cat and drew a smile onto its face. She picked another picture, which had a little cutline that said “Neat and Sweet,” and Mom wrote “Neat” on the little cartoon animal’s face. She flipped to another page and followed an outline of a picture for a brief time. She doesn’t know how to color in a picture in the traditional way. This made me kind of sad. But I also told her she can do anything she wants: it’s art. I colored one more picture, and she said, “I think you’re having a good time,” and I said “Yes, I am.”

We decided to take a walk around the whole place – the building is shaped like a giant square with a courtyard in the middle. We stopped at a small aviary and admired the birds for a little while. There is a piano in this little lounge, and I plunked out a few things I know – the background music to Ave Maria and chopsticks. Mom sat at the piano and tickled the ivories a little bit. She has done that a few times. She likes to try, but she can’t remember anything she used to know. My brother played piano a few times while he was visiting. He is a professional musician, so he was really offering a nice treat to the residents. I wasn’t there for any of those short recitals, but I was glad he did it. I’m sure the residents appreciated it.

Mom likes to give the piano a try. Behind Mom is the small indoor aviary. This is a popular lounge area.

Mom likes to give the piano a try. Behind Mom is the small indoor aviary. This is a popular lounge area.

It was finally time to take Mom in to lunch. There was a pizza special today for people who paid ahead, which I forgot to do, so Mom was one of the few residents in the dining room. Her roommate also was in the dining room – she usually has a full table, but today Mom was able to sit with her so neither of them had to eat alone. I told the aide I was ready to go, and she and I chatted a little. She said Mom is very sweet to her roommate, and seems concerned about her. I’m glad she has seen that side of Mom – she has developed into a nurturer of little kids, animals, and, I guess, old and frail people. Mom’s roommate is tiny, and is in a wheelchair. Her husband recently died, and he shared her room with her. She has been lonely and waiting for a roommate, and the staff thought Mom would be a good fit. That warmed my heart, to know that people know Mom well enough to figure out that she can be kind and friendly when she is not afraid or confused. Today’s aide seems to like Mom, and I was glad to leave Mom with her for the day. I’m going back tonight for a concert; this facility has a free summer concert series and I’ve heard reports that Mom loves it. I think it’s about time that I see one of these shows, and it’s a good way to keep up the visits with Mom as she continues to adjust. And by the time the concert ends, it will be Mom’s bedtime.

More on the move, with pictures

Things went downhill sort of fast after Wednesday, the day Mom started living in the nursing home. Thursday is sort of a blur. My brother arrived Wednesday night. So Jeff, Laura and I went to Mom’s old apartment as early as we could on Thursday to go through things, sorting items to save and items to trash, items that might go to Mom’s new room and items that could be stored in my basement. Laura tackled the closet, bagging up four bags of clothes to donate and one bag that she wanted her daughters to go through just in case they might find something of Grandma’s that they’d like to keep. Jeff and I worked in the living area. We decided to keep every last photo until we can go through them and divide them up. There were lots of photos, everywhere. We did meet our deadline of 1 p.m., when a hauler came to take away some of the furniture that wasn’t worth keeping, plus lots of bags of trash. We left behind a few bookshelves, two nightstands and a lamp that we thought another resident might be able to use.

Mom's former bedroom, with two nightstands and a lamp left behind for someone else to use. Some residents arrive at the assisted living facility with very little, so we hope these will be put to use by someone in need.

Mom's former bedroom, with two nightstands and a lamp left behind for someone else to use. Some residents arrive at the assisted living facility with very little, so we hope these will be put to use by someone in need.

This walk-in closet was a nice feature in Mom's apartment. Her new closet is tiny. She has so many clothes, but we were able to reduce her wardrobe to a more manageable size.

This walk-in closet was a nice feature in Mom's apartment. Her new closet is tiny. She has so many clothes, but we were able to reduce her wardrobe to a more manageable size.

Jeff and I loaded up these last few items before turning Mom's apartment back over to the facility.

Jeff and I loaded up these last few items before turning Mom's apartment back over to the facility.

I took Mom to get a haircut in the afternoon. She seemed OK when I took her, in a decent mood, maybe sort of quiet. Not really complaining about the move. We ran into an old friend of Mom’s at the salon. She was getting her nails done by the woman who shares a space with my hair stylist. That was fun, to catch up with her, and for her to see Mom and now know that Mom was making this move. After the cut, Mom and I got burgers at Wendy’s. I took her back to the nursing home and went to my house for a brief rest. I got a call at about 3:30 from my sister, saying the facility administrator – actually the administrator for assisted living and assistant administrator for the entire place – had summoned us all to his office. By the time I got over there, he was just finishing up telling Laura and Jeff that Mom had been awake at 4 a.m., had cut off the security cuff from her ankle, and had headed out an exit door. The door normally would sound an alarm, but without Mom’s cuff, that didn’t happen. A staff member was able to stop her and eventually get her back to bed. But this made Mom an immediate target as a potential flight risk, and the administrator was already talking about the possible need to move her to a secure Alzheimer’s facility.

This kind of talk set all of us off. We were all angry that evening while we ate dinner at a restaurant as the family vacation/staycation began. Laura’s daughters arrived from California, and my sister from Cleveland and her husband had arrived. The next morning, I emailed the administrator and asked him to increase Mom’s sleep medicine, Trazodone, to improve chances she would sleep through the night. He consulted the doctor and agreed to that right away, which I took as a good sign. I went to see Mom fairly early. She was wearing a Christmas sweater over her pajama top. I could already tell she was getting some assistance with hygiene and dressing, but this appeared to suggest she might have done some dressing on her own. She was hot, so I encouraged her to change into a new shirt that Laura had bought her during the shopping trip on Wednesday. I left at lunch and as I was driving back to see Mom again, the administrator called to tell me Mom had tried to escape about four times that day. She was agitated. She hit a staff member. I told him I’d meet him at the nursing station. When I got there, I found Mom in a lounge with a staff member. She hit me when I got there, too. She doesn’t hit hard. But it’s upsetting all the same.

The administrator took me into an office and said he wanted a family member to be with Mom through the weekend during the day, and that someone on staff would be assigned as her one-on-one at night. I had experienced something similar when Mom had made her one escape attempt at assisted living. But this time I got more upset, because I felt that she was being unfairly judged as a problem patient before she had any chance to settle in. At about this time, my sister and her daughters arrived, and then my brother and his partner Tom, and then Patrick. And I sat in a chair and cried. I was upset that everyone’s vacation was being ruined. I felt that the facility was turning on Mom. I was tired. I eventually calmed down, and we spent a bunch of time with Mom, looking at pictures and just hanging out. She had no idea that she was in any kind of trouble, of course.

My nieces, Lily and Julia, look over a scrapbook with Mom in a nursing home lounge.

My nieces, Lily and Julia, look over a scrapbook with Mom in a nursing home lounge.

Laura, my brother-in-law Tom and my nieces look at old pictures.

Laura, my brother-in-law Tom and my nieces look at old pictures.

Mom and my brother, Jeff.

Mom and my brother, Jeff.

Mom tests her new bed. Laura had asked the girls to bring stuffed animals that could play with Mom's dog/cat, which I thought was sweet and genius. Julia brought Dog and Lily brought Duck.

Mom tests her new bed. Laura had asked the girls to bring stuffed animals that could play with Mom's dog/cat, which I thought was sweet and genius. Julia brought Dog and Lily brought Duck.

Jeff, Tom and Laura visited with a social worker to talk about Mom’s behavior. The social worker was far more accepting of Mom’s issues, and said they were quite common. That it was way too soon to decide she is destined for a locked ward. That a team would decide this, not just the administrator. That they see this kind of thing all the time. The nursing supervisor assigning the one-on-one’s also was more flexible with expectations of family time, which I appreciated. But we were still on edge. I was supposed to go back to my house with Laura, Jeff, Tom and the girls to help them sort through some jewelry and pick out some items for themselves while Patrick stayed with Mom. But I had a hard time leaving Mom. She was doing fairly well, but I invest so much energy into trying to keep her as happy as she can be, and I felt like I was failing completely. So I just wanted to be with her. Patrick and I stayed with her, sitting over a puzzle for awhile and then sitting with her while she had dinner. She wondered why we weren’t eating.

During dinner, Patrick offered Mom's dog - which she calls a cat - some milk. Mom's dinner was a barbecue sandwich, onion rings and cooked carrots. Plus chocolate cake. Mom ate the cake first.

During dinner, Patrick offered Mom's dog - which she calls a cat - some milk. Mom's dinner was a barbecue sandwich, onion rings and cooked carrots. Plus chocolate cake. Mom ate the cake first.

Finally, we left and met up with everyone at Dad’s, where the family vacation/staycation was in full gear, with everyone present but our baby sister flying in from Oregon. I tried to keep my chin up. Jeff and Laura gave me the day off on Saturday, which was quite nice. I golfed with my little brother and went to a local pool with most of the family. Laura took the morning shift with Mom and Jeff and Tom spent the afternoon with her. For the most part, she did well. Laura sat outside in the courtyard and colored in coloring books with her. Tom and Jeff went to bingo. There were no reports of overnight problems. The family vacationers went to Cirque du Soleil that night – all 16 of us. The day had taken a toll, I think. Jeff was super-stressed and felt like he might be getting sick. Laura was trying to fit in a little fun time for her daughters, taking a late walking tour of the Short North. I was wondering if I would get a decent night’s sleep.

Sunday, I took the morning visit. We all broke for brunch and then I went back until about 3 or so, when Jeff and Tom stayed with Mom until she went to dinner. Laura and the girls came to say goodbye before they flew back to California. Laura was troubled, feeling unfinished about Mom. We had a big family seafood dinner at Dad’s. I went to see Mom this morning, and hung out with her for almost two hours. Some staff seemed to think she was doing well. One nurse seems to have a negative attitude about Mom, and it pisses me off. I heard that an aide took Mom over to assisted living for a visit last night, which didn’t turn out so well – that reminded Mom that she had moved against her will, and she repeated some things to staff there that she had said to me: she is not an idiot. She wants to die. Today, the administrator came by as Mom and I were sitting in the courtyard, where I had combed her hair, put lipstick on her and touched up her cheeks with some powder blush. He said he got all good reports about the weekend and that the one-on-one staffing would start to taper off. He and I agreed Mom should not visit assisted living again anytime soon. He acknowledged I will have to return to work. He seemed much more positive. When I left her, Mom was going to have a one-on-one for the rest of the day. The family staycation went to Zoombezi Bay and now are prepping for our last dinner together, a cookout.

I am off the rest of the week, and I am going to see if I can work on developing a pattern of visiting that works for Mom and for me. I am starting to feel some relief, and hope that everything will be fine sometime soon. But I know there could be a setback at any time, too.

Mom, doing her best to adjust to her new surroundings.

Mom, doing her best to adjust to her new surroundings.

Moving Mom

I hoped to write about the move as it happened, as in Day 1 and Day 2. But I was too tired last night to do any writing. And I was still unsure about how to assess how things had gone. For now, I’m willing to say things have gone better than I expected, but the situation is far from perfect.

We started Wednesday slowly. My sister, Laura, had arrived Tuesday evening from the West Coast. I scheduled the day to allow her to sleep in as she adjusts to the Eastern time zone. And also so Patrick could take just an afternoon off to help with some of the heavy lifting. Laura and I shared a bottle of wine Tuesday night, and after I went to bed, I learned later, she opened and started on a second bottle. So on Wednesday morning, she felt a little nauseated. Not tip-top. After some toast and a Frappuccino, she was much better. I felt physically fine, but full of dread in my mind.

At around 1 p.m., we headed over to the assisted living facility. Patrick followed with our truck. After introductions, Laura whisked Mom away for a day of ice cream, driving around and shopping. Patrick and I tackled some of the big stuff in Mom’s apartment. We are keeping an oak dining room table that Mom has had all of our lives in our basement until someone, maybe one of Mom’s granddaughters, can use it. We boxed up some small valuables, like Hummels, some glassware and odds and ends my grandfather had brought home from World War II, to store in our basement until we can divvy up these items. And then we took two cart loads of Mom’s belongings to her new room. We were able to fit a buffet table next to her new dresser, and we put lots of pictures and a clock on the buffet. We hung up pictures of Mom’s three kids, plus a picture of her beloved cat, Petunia. I filled her dresser drawers and her closet with enough clothes to last the rest of her life. Mom had a lot of clothes – we probably donated as many as we kept. We put two chairs into the room, including a nice white wicker chair, but it later had to be removed so Mom’s roommate could negotiate the small room in her wheelchair. That wicker chair is now on my front porch.

When Mom and Laura returned from their outing, we showed her the new room. We could almost see the black cloud form over her head. Her face went slack, blank, angry. She didn’t like the room. She didn’t show any interest in it. She objected to the whole thing. We introduced her to Kathryn, her roommate. Kathryn formerly shared the room with her husband, to whom she was married for 76 years before he died. Mom was nice enough to Kathryn. Laura and I explained to her that Mom is not crazy about the move, but that it wasn’t personal. Kathryn, in her very gentle way, let us know that she, too, is experiencing an adjustment. She made a very good point. She is a dear. We took Mom back over to assisted living for dinner, which we were told would be OK. While she was there, she got a dose of her antipsychotic. Laura and I worked for one more hour, bagging trash and collecting some of Mom’s hundreds of photos, until dinner was over. And then we took her back over to her new room.

This time, we fiddled with the controls for Mom’s bed, lifting her head so she could easily see her TV. She started lounging, and she was relaxed. “I’m feeling better,” she said. “I am SO glad about that,” I told her. She ate a few Oreos that we had brought for her. She also ate a chocolate from Kathryn’s end table, which we tried to discourage. We turned “Friends” onto her TV and decided to leave. My dad and his wife were having us over for dinner so we could not have to do one more thing after the move. And that was great, to drink a tall glass of water, eat a dinner of summer salads, and then crack open a beer after a busy day. That was Day 1 of Mom’s move.

Bad reaction

I visited Mom briefly on Thursday, right before dinner. She was sitting in the lobby by herself. Most residents had already gone into the dining room. The facility administrator had recommended that I ease her into the information about moving. We were chatting, and I casually told Mom she’d be moving soon to a new room in the same building. “Oh” was all she said. She was pretty cheerful. A little bit flat. I liked this nonreaction she was having.

I didn’t go back until today, Sunday. I visited after lunch. When I got there, Ginny and Alice were in the lobby, but Mom wasn’t there. They didn’t recall seeing her at lunch. They assumed she was asleep. Sure enough, I found Mom on her bed, lying on her side with a yellow throw over her, the other side of the bed covered with clothes. A box on the floor by the bed had been emptied of some of its contents, mostly puzzle pieces and pictures. Mom woke up with a start, but was quick to get out of bed and ask me what we were going to do. I asked her if she had eaten lunch and then gone to sleep. “Well, you know, I just don’t remember,” she said. She was in a pretty good mood. I changed her clothes for her, put some deodorant on her. “Do I stink?” she said. She didn’t, in fact. I just thought it was a good idea to freshen her a tad. I told her again that she was going to be moving soon in the same building, and that Laura and Jeff were coming to help with the move. “That sounds fun,” she said. She needed reminders about who they were. Then she said “I’ll get to see all my relatives.” Yet another good reaction. I asked her if she wanted to go see her new room and she said yes.

We took the elevator to the second floor and walked down the main hall that leads to the care center – what this place calls its nursing home. On the way, Mom said she had to poop. So we turned around and headed back toward a public restroom. Though there were two other women in the bathroom, Mom left her stall door open. The older of the other women in there did, too, because she had a walker, which kept the door propped open. They carried on a conversation about an upcoming bingo game. Once that was done, we headed back toward the care center, then to the right, and then to the left down the hall to Mom’s new room. It turns out 237, the one I had selected, is not available after all, nor is the other room that was going to be empty. Both are going to be occupied by residents who are going to be displaced by a renovation. So Mom will be moving into 333, and she will have a roommate – a woman whose husband lived in the room with her until he died. The administrator and the social worker tell me it will be a good fit.

We popped our heads briefly into the room, where the current resident was eating and watching TV. I showed Mom her side of the room quickly. I informed the woman that she’d soon get a roommate, my mother. I asked her if anyone had told he she’d be getting a roommate and she said no. I am really hoping that’s not true, that I am not the first to spring this news on her. I am hopeful that she also has dementia and just doesn’t remember that she has been told about her pending roommate.

I told Mom these rooms are smaller, and that she won’t have as much furniture. But that all she’ll need to do is sleep in there, and otherwise she can do what she does now: visit with her friends in the lobby of the assisted living building. The administrator said that would be fine. I think she’ll even be able to eat over there. I told her we’d be putting her belongings in the new room for her. She no longer seemed to think it would be fun. She looked around as we walked the halls on our way back to assisted living and said, “Is everyone here sick?” I said no, some might be sick, some might be in wheelchairs, some might just need extra help. I told her the doctor wanted her to live on this side so she’d be safer, with more staff around. That’s my story and I’m sticking to it. She seemed to be getting increasingly fretful.

We returned to the assisted living lobby, which was empty except for one woman who was sleeping in a chair. Mom and I sat on the couch. She was not happy. She began to speak in full sentences, to be very expressive of her dissatisfaction with this new arrangement. “I never imagined this would happen to me,” she said. I said the same thing over and over, that her days will be pretty much the same, that she’ll sleep in a room with a roommate, and then wake up and spend her days again the way she always has. “This is an embarrassment to me,” she said. I told her I didn’t see any reason to be embarrassed. She gave me a look of disdain as if to say – that that is easy for me to say. She said, “I don’t want to spend all day in a bed.” I told her she certainly will not be bound to the bed at all during the day. She did not like the small size of the bed, and she said she hasn’t had a small bed like that in her whole life. I told her it’s kind of like dormitory living in college, where your room just has the essentials and you spend the rest of your time somewhere else. “I wish I had more information,” she said. “I don’t want to live in a hospital.” She was upset I hadn’t told her sooner, though I’m glad I did not. Two aides came by and asked what we were talking about, and I told them Mom would be moving to the care center. One said, “Really? Why? I didn’t think she’d need to go over there. She’s not that much trouble.” I felt like kicking her. I tried to mouth the word “money” but said out loud that doctor’s orders are that she needs a safer environment. The two aides came up to Mom and rubbed her arm and told her it would be OK, that they would come get her and bring her over to assisted living each day. I was grateful for that. Mom could not be cheered up.

At about this time, three of her friends showed up, including a woman who also has dementia, and who has become so much trouble that she is moving back to New York state to a nursing home. She is a wanderer, I’m told. Funny, though, I think she does better at chatting than Mom does. But I haven’t spent any real time with her for a long time. Mom was asking me why she’s the only one who has to move, that her friends are able to stay where they are. What is it about her that is so different, she asked. I told her friends what we were discussing, that she’d be moving to the care center but would still spend her days in assisted living, hanging out. They were very supportive. One said, “We’re all in the same boat. Our bodies might change, or something else might get worse.” She tried to convince Mom it’s not a big deal. I did not like it one bit that Mom was so able to articulate her questions and concerns. It’s as if this intensely negative experience was bringing out the best in her ability to function, which is just plain bizarre. She was reminding me of the Mom of several years ago, very negative and suspicious and assuming the worst.

She had this same reaction when she moved to assisted living. She said she was moving to a cave. She made fun of the physical disabilities of all the people around her. She felt way too normal for the environment. But she really adjusted pretty quickly. Despite this reaction now, I have every confidence that Mom won’t remember for long that she has moved and her new living conditions will become the norm for her. But even knowing that doesn’t make me feel much better about the prospects of her fretting and complaining and asking ‘why me?’ for the next week and who knows how much longer, until she develops new habits. It’s not just inconvenient for me – it hurts me to my bones to have her feel this way. These emotions she is having are the very emotions I am hell bent to prevent. And I just can’t right now. She is already taking a medicine to calm her. Plus two antidepressants and a third that doubles as a sleep aid. But if she goes on for very long with this kind of attitude, I will ask for more medicine to improve her mood. I just can’t stand to think of her suffering.

I asked her if she wanted to walk me to my car, and she said yes. She walked out with me, still frowning. She tried to open the passenger side door. I told her I was leaving to get groceries and do laundry. That I wasn’t taking her anywhere just now. “Oh. You’re leaving now?” she said, apparently in disbelief. And she turned around and walked away, along the sidewalk and back into the lobby. No hug. No kiss goodbye. No turn back to wave.