Archive for March, 2012|Monthly archive page

A life lesson

Last night at support group, one of my friends there said I have come a long way. When I asked her to explain, she said I just seem more at peace with what’s going on with Mom, that I talk about her with such affection, and that I talk less about how lonely I feel sometimes as her caregiver. I seem less angry. I’m glad it shows, and I think, after the week I’ve had, that maybe I have turned a corner (or at least started turning a corner) on the anger front.

Something very bad – very sad – happened on Monday at work. Someone I care about, someone who has been a mentor to me for many years, is out as the result of a reorganization. I have been telling some friends that I feel like I’ve experienced the phases of grief over the past three days. And then today, I woke up thinking that the best thing to do is accept what is going on. Remember that I love my job, and make the best of it. Don’t live with hate in my heart. Spending my days full of anger isn’t good for anybody, I reasoned. And it’s certainly not good for me. It has been liberating to feel this way, and I admit, it’s unexpected.

It makes sense to think that my evolving approach to Mom’s illness has influenced other aspects of my life. I spent months – years, probably – full of resentment about being stuck as her caregiver. Her need for my care and attention revived in me all sorts of negative memories of my childhood, when she often wasn’t around to give me care and attention. After the Alzheimer’s diagnosis, I looked to my future, and to Mom’s, full of dread. I have learned over time that plenty of caregivers get stuck in this place of resentment, anger, grief and dread. And I am so relieved that I didn’t get stuck.

It has helped that Mom is content, and that on most days she is so sweet to me, and feels moved to tell me that I am beautiful, or wonderful, or both. I might have completely different emotions if she were mean to me. It also has helped to learn that when she is not at her best, she is still doing her best. She has a diseased brain, and reason and negotiation mean nothing to her. So when she feels a threat and lashes out, she is taking care of herself in the only way she can. And it’s not personal.

I still have lots of anxiety about lots of things, and I am still inclined to react emotionally first and with a more level head sometime later to virtually any old thing that might be said or done. When I am dissatisfied about something, I have an unfortunate tendency to make my displeasure known. On the road, I feel genuine rage sometimes. I don’t suck it up as much as I think I should. I am still working on being the person I’d most like to be.

Who would have guessed that Mom, in her current state, is helping me become that person? Through her, I’ve learned that even the most damaged people can still find pleasure in life – often from the simplest things. What many consider to be a bleak existence can be marked by endless laughter, dancing and singing, and consistent and comforting social interaction. When something bad happens, it doesn’t have to define the rest of one’s life. Something so bad, and so sad, has happened to Mom, and to our family and her friends. But we carry on, we learn to live with it, we make the best of it.

My relationship with Mom is as warm as it has ever been. So what if she doesn’t know I’m her daughter? Her instinct is to trust me and to hold my hand and to tell me story after story. This future of hers, and mine, has turned out brighter than I ever could have imagined.

Disorganized and pleasant

I had a very detailed care conference today with several senior staff at the Alz center. There are new regulations dictating nursing home practices, and some of those were kicking in today. We will now complete quarterly forms reiterating what is already in Mom’s chart: She completed a living will and has a DNR, we will not do a feeding tube if she no longer can swallow, I want her daily-living care to be provided at a level she can tolerate (ie she is not forced to shower, but it does take several staff to encourage her to get into the shower). Things like that. And this is fine – more work for the staff, but a way for me to revisit my convictions about Mom. Never a bad thing.

For the conference, we went around the table.

Dietary: Mom weighs 178.2 pounds, down 2.4 from the last quarterly meeting. Her weight cycles up and down a little bit. She eats 50 percent to 100 percent of her meals. I have heard that sometimes she will skip a meal. But she loves her ice cream at every meal, and eats it first. I have seen this. In the morning, when she is served cereal, she will begin eating dry cereal with her hands before the milk can be poured. She is using her utensils more often these days. That is another cycle. So interesting.

Social work: Mom is not as lethargic as she was in the winter. Several staff seem to think the winter brought on some seasonal affective disorder, and many residents were grumpy, along with Mom, just a few weeks ago at what we now can probably consider winter’s end (it is 83 degrees today in central Ohio, a record for this date). The added sunshine seems to have lifted Mom’s mood. Her two boyfriends keep her somewhat busy. Mom isn’t napping as much. She still has disorganized speech – that is a good term for it, I think. She talks a lot, but just doesn’t say many complete sentences. (Today when I visited her briefly, one thing she said was: The United States of America. Sometimes the activity staff read the news to residents. I wondered if something about the election cycle stuck in Mom’s head.)

Activities: Mom is in and out of activities and her participation is best when it is voluntary. She rarely responds in the affirmative to staff encouragement to join a group activity. She might stay 10 or 15 minutes when she does participate, and then she indicates she is done and walks away. She sang and danced in the Tuesday morning sing-along yesterday. I was glad to hear that. She can catch a beach ball or balloon and bat it back, but most other games are too complicated for her: bingo, bowling, shooting soft basketballs, things like that. She will occasionally thank staff members or say to them, “You’re good.” She rubs their backs sometimes as a sign of affection. “She’s very pleasant,” the activities director said.

Nursing: Mom’s skin is in good shape. She saw an optometrist in February and the dentist cleaned her teeth on Jan. 12. I was very glad to hear that, as I still worry about Mom’s teeth and bad breath. He lab work is all in normal ranges. The last time a doctor checked her over, she was fine. She’ll see an audiologist in May. I am very curious about how these various appointments go and how Mom’s vision and hearing could possibly be reliably gauged at this point. But I am glad there are providers paying attention to her – as long as she doesn’t scream at them. Speaking of screaming, her next podiatry appointment will be in about six weeks or so, probably.

I mentioned Mom has been wearing the same shirt the last four times I’ve visited. That could be Mom’s choice, it could be an aide picking an easy pullover, it could be Mom is changed so often that she cycles through that shirt frequently (I think that’s actually it). Mom had lots of food on her pants today, so I imagined she would be getting a clothing change at some point. And apparently now that it’s warmer, she has yanked off her shirt once already. All the staff indicated that she has a reputation: Bonnie does not like being hot. That is something I remember about the old Bonnie, too.

Out of sorts

I am concerned that Mom has taken a turn for the grumpy. I visited Sunday just after lunch. She was sitting in a chair by herself, arms crossed and legs crossed. She said something in a huffy way. I pulled up a chair next to her and said I was sorry she was having a bad time. She recited a few syllables that didn’t really tell much of a story and then she said, “Shut up! Shut up!” I wondered if the music was bothering her – she was sitting right below the boombox. But the songs were oldies – real oldies, like Dean Martin types of songs.

I started rubbing her shoulders and arm. “I used to give you backrubs all the time,” I said. I tried to be gentle but also to exert a little pressure that could feel good. She would drop her head. I figured she was tired. At one point, she opened her eyes and looked at me for an extended period. I was a little worried that she might hit me so I backed away. She put her head down again, and I started rubbing again. I stroked the back of her head. This did seem to calm her. Eventually she started to try to sing along with one of the tunes, and she waved her arms as if she were dancing. I snapped my fingers. I thought we might have turned a corner in her mood.

Her aide came up and asked Mom if she’d like to go to the bathroom. She coaxed Mom out of her chair. I told her I’d stay behind unless she wanted me. Another aide went along. I went and stood outside the shower room door to listen. Mom screamed twice. I was glad they were changing her, though. I had noticed her diaper seemed to be bunched up around her left thigh. She came out and I greeted her and we walked around a little bit and she made her way to a couch. She reclined immediately. At this point, I studied her face – I had noticed she had some bruising on the right side of her forehead. It looked old. No one had ever told me about it but there was no bump and it didn’t seem to bother Mom when I touched it. She quickly nodded off. (A nurse looked at Mom on Sunday and another called me today to say Mom had been acting fine and no one knew the source of the bruise. I know it can be hard to track residents’ movement, so I’m not upset that Mom has a bruise. I was just surprised not to get a call informing me of it.)

Mom rested her head on the couch. The bruise was already sort of yellowish, not black and blue, so I figured she had had it for awhile.

Because I have noticed her wearing the same clothes over and over, I went into her room to check her closet. I found her new roommate in bed, her son sitting in a nearby chair and two hospice nurses tending to the patient. I apologized for disturbing them. This woman had just moved in the last day I had visited, on March 1, and was upright in a wheelchair. I said hello to her and she said hi back. She had deteriorated rapidly, and did not look good. The man said Mom was a little put out by the hospice situation. I said I wasn’t sure she even knew this was her room, and that I imagined she was not bothered by other people in there. But he then said she was being moved to another bed for sleeping but that she had made an effort at least once to return to her own bed. This was a surprise to me. I haven’t said anything to staff yet about this – I am stopping in tomorrow after I get my haircut and hope to find out what’s going on. But this, I really don’t like to hear. This is Mom’s second or third roommate since my friend’s mother, who was also Mom’s roommate for more than two years, passed away. With Mom acting out a little bit these days, I wonder if the source of her irritation is the Grand Central Station situation in her room. Mom has a reputation for being pretty easy-going, but I don’t want staff to take advantage of that, especially if it threatens to alter her generally good disposition.

Family council

Well, I have volunteered to try to lead a new family council at the Alz center. I didn’t really expect that to happen. The staff sent mailings out inviting family members to come in for meetings to discuss the possibility of establishing a family council. I was part of the last group to meet, and there were just four of us in attendance. Only about 15 people total showed up for four meetings. There are 100 residents at the center so, you know, not a lot of interest.

The social worker running the meeting gave us a brief summary of how the council might function. We would meet at the center. We can meet with or without a staff member present. We can collect complaints and relay them to the staff and administration and try to work toward resolutions. We could raise money, plan events, stuff like that, to improve the residents’ quality of life. My interest is in fostering better relationships between staff and families. For example, in this meeting, the administrator was present but I didn’t realize that was who she was. No introduction, no going around to say who we were and who our family members were. I am sure the staff is busy, but I think some sort of organized interaction between staff and families, especially when residents move in, would be helpful. Maybe some kind of orientation could be in place for new families – meeting certain staff members, receiving some basic information about the facility, things that are OK to do while visiting and things that aren’t safe. Stuff like that. The families of residents on the skilled side asked for a volunteer calendar so they could sign up for shifts. That is a great idea. There is interest in having a poster with photos and names of staff members. I think that would be a nice touch. And some family councils participate in featuring residents or staff in newsletters. I’d be totally into that.

The social worker and I stayed behind to talk some more about what should happen next. I am going to write a letter to the families, suggesting how things might get started and inviting others to be on an executive committee if they’re interested. She seems to think lots of families will be interested in using the council to convey complaints. Of course, she hears all sorts of things so she knows what she’s talking about. But I don’t come to this with a desire to get bogged down with complaints and nothing else. In fact, I don’t really have any serious complaints. I worry that families might not take to me if they are unhappy and they realize that I love this place. But I guess I will forge ahead and see how it goes.

I visited Mom after this meeting, which was last Thursday afternoon. And she seemed to be back to her normal self. She was lounging on a couch. No boyfriends in sight. I pulled up a chair and talked to her for awhile. She said, “It’s wonderful.” I hoped that meant she was glad to see me. She said my name several times, but not in a way that necessarily suggested that she knew I was Emily. She was in a calm and pleasant mood. I massaged her legs and arms a little bit, just to give her some good feelings that I hoped made her feel loved and safe. I didn’t stay long, but I was relieved to see her feeling so fine.