Archive for November, 2009|Monthly archive page

A gift wrapped in sandpaper

Naturally, I have been thinking about things for which I am thankful these past few days. There are many things. Too many to name. I really am a very fortunate person in many, many ways.

And even in the context of Mom and her illness, there is no shortage of things to consider gifts. This blog, for example. Deciding to write it has been helpful to me, and the return on investment is huge. The writing itself gives me a chance to vent, to reflect, to organize my thoughts. To share information and stories. To stay in touch with people who care about Mom, or me, or both.

And the feedback I receive is just so wonderful. The support I feel from the comments made by people near and far warms my heart. It is amazing how meaningful it can be just to know others are thinking about me and Mom. Some people think that’s just a little thing – to say ‘I am thinking of you.’ That is a BIG thing. There are lots of things to think about all day every day. To know that I might occupy someone’s thoughts means a lot to me. People who call me a hero or amazing are, well, exaggerating, I think, but to be told that feels very good. I can’t deny it. My Aunt Nancy sent me an Avon care package and a card thanking me for taking care of Mom – that was such a sweet surprise. I also appreciate hearing from people who are experiencing similar issues with their own parents or other family members. I am not alone; we are not alone. Things could be so much more difficult. Perspective is a powerful thing.

My relationship with Mom stands as the biggest gift of all. I heard an author on the radio today talking about her book about change, and how people adjust to change, often gradually. She described some change as “a gift wrapped in sandpaper.” (Edited to add: the author’s name is M.J. Ryan.) Sometimes, it takes a long time to peel away the sandpaper to see the fruits of the gift. I thought that was very applicable to my experience with Mom.

I was so frustrated with her when her symptoms began to surface and I didn’t understand her behavior. I was positively angry and felt hopeless when she was diagnosed. I felt doomed to be her primary caregiver, and was just sure it would be the most miserable experience possible for potentially years and years and years. There have been periods of misery, for her and for me. I have felt resentful about being saddled with this job. There is bound to be some serious difficulty ahead, as she gets sicker.

But I would say the sandpaper is gone. I do not dread spending time with Mom. I don’t consciously feel stress every time I think of her. I absolutely no longer dwell on the negative parts of my past with her. And being with her on this unfortunate journey she is on has given me a chance to establish a new relationship with her based entirely on affection. Patrick says I have become Buddhist when it comes to Mom – I am able, now, to live in the moment with her, appreciate the present, let go of the past, and not worry about the future (at least not constantly). We visit and enjoy the simple pleasure of being in each other’s company. We laugh. We hug and kiss. She is at a place now where she is aware of the gratitude she feels about having me around, and she expresses it to me regularly. While there once was a time when I felt that I could never do enough to satisfy her, I now receive words of praise just for walking in the door.

Yesterday, when I arrived to visit her, she seemed very glad to see me. She was sitting in the lobby, and I walked up to her to give her a hug. While still sitting, she took my hand and put it against her face, and she said, “I love you.” I honestly don’t recall the last time she said that to me. She may never say it again. But for that moment alone, I am so thankful.

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Default setting: worried

When I arrived at the Alz center Tuesday about half an hour before lunch, the receptionist was handing out cookies to guests and staff members. And perhaps residents, I don’t know. She asked me if I wanted one, and I said yes, and she gave me two. They were mushy chocolate chip cookies, still warm. I ate half of one and put the little cookie envelope in my purse. I walked back to the program area, and I saw Mom walking around with dog/cat in her hand. She was headed in one direction, and then she turned around and started walking toward me. And I walked toward her, waving. And she said, “It’s another miracle.” And we hugged.

We sat down for a little while at a table and played with dog/cat. Mom said she was feeling worried, but she didn’t know why. I told her I didn’t think she has anything to worry about these days – that she has everything she needs right there with her, and that I would take care of anything she didn’t have. She touched her chin a lot, and she would repeat that she was feeling worried. She said I looked worried. And I probably did, because I don’t want her to worry.

She said a few interesting things: “This is just my position, to be worried all the time.” And later, to me, “You’re a perfect person.” I assured her I am not perfect, but that I do my best. I told her she was pretty close to perfect herself.

We walked to the lobby and sat on a couch. I shared the rest of my partly eaten cookie with Mom. She got a little chocolate on her cheek, which I didn’t manage to clean off until a little while later, when the staff passed out the bibs for lunch. This center has virtually no public trash cans around – for safety and to avoid messes, I’m sure – so I didn’t go to the effort to use a tissue to clean off her face knowing that I’d either have to hold onto the tissue or ask someone for a restroom key to get access to a trash can. A small inconvenience – but I figured not a soul would notice the chocolate on Mom’s cheek. And I was right.

While we were sitting there, Mom continued to pick at her chin and I offered to pluck her facial hairs. She tilted her head back and I plucked away. There weren’t too many – I’m sort of staying on top of the growth now. I had been bending over sort of awkwardly, and when I was finished, I sat down with a heavy sigh. “Just another thing to do,” she said. I assured her it was no big deal.

It was an interesting visit – she seemed pretty observant of my behavior and tuned into it, and she was definitely on edge about something herself. I probably told her six or seven times over the 45 minutes that I was there that her life is set up now so that she can be free of worry. She worried a lot before her illness. She had lots of anxiety, about all sorts of things. I have lots of anxiety, about all sorts of things. But I try not to let my anxiety about her show when I am with her.

While we were back in the program area waiting for Mom’s lunch tray, I heard a little commotion in the hallway. A male resident was naked, a nurse said, and he had gone to the bathroom. An aide put a gown on him and took him toward a shower room. On his way to that room, the resident kicked a door. I gave Mom her tray and hoped she remained unaware of the angry resident. I kissed her goodbye.

Because of the bathroom accident, the door from the program area to the lobby was closed and locked, so I had to wait for someone to let me out. And this is an example of my useless anxiety: I feel guilty whenever a staff member has to let me out. Yet those are the rules – I am not allowed to know the codes to open any exit doors. No one knows them but staff. And yet there I stand, worrying that they will think I am a bad family member because I pick an inopportune time to leave – the same time that someone has to clean up a public pile of poop. I’ve got to get over this, I think. Mom is presumably going to be living at this place for a fairly long time.

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:

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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.

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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.

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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.

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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.