Archive for November, 2010|Monthly archive page

In the news

The Alz center was in the news last week for a day or two. Apparently police were investigating a single case of alleged abuse of a patient by a staff member. A news report about that case led a woman whose husband died at the center to file her own police report about injuries he had when he died that a hospital physician described as unusual.

My reaction is that I am not alarmed. I am hopeful the family members of the residents who ended up with unexplained injuries might have been mistaken – that the injuries, at least in one case, could have been self-imposed by the patient. Or that maybe another patient caused the problems. But I am also not delusional. I know that there are bad apples out there in ALL professions, and that the actions of these bad apples should not harm an entire facility or institution’s reputation.

What did bother me, but didn’t really surprise me, were the viewer comments posted on the TV news station’s website after the story aired. I often read comments – I am interested in other people’s opinions, for some reason. But I should really stop it. The Internet has been kind to me in many ways – this blog, for instance – but it has invited so many irrational comments by people empowered by their anonymity to say the cruelest and most thoughtless things. And I get really riled up about it, which is why I should really stop reading comments on news sites.

I read all 106 comments on the website after the first report. So many people are quick to complain about nursing homes – those with experience and those without. There is so much judgment out there, and SO much ignorance about long-term care, and especially about how different this particular nursing home is from others. One commenter said the place should be shut down – and to that person, I ask, will s/he take in my mom, then, and provide her with 24-hour specialized dementia care? Also among the comments were a couple of notes from a woman from support group who had her husband at home for years before moving him into the Alz center in August. She briefly said she thought the care at the center was fine – excellent, even – and that she is there every day to see what it’s like. She used her actual first and last names. And more than one follow-up commenter accused her of being an Alz center staff member fraudulently posing as a family member. The nerve of some people. I have a feeling she doesn’t really care. I thought about posting under my own name that she is a real person, and also voicing my support for the center. No matter how compelled I feel to participate, though, I just can’t bring myself to engage with people who obviously don’t give a damn what a person WHO ACTUALLY KNOWS WHAT IS GOING ON AT THE CENTER thinks or knows for a fact.

Now, if there is an abuser on the staff, I certainly will be distressed to find out this is the case. But I trust the leadership of the center to do the right thing in the event that this turns out to be the case. I know many staff members by name and many others by sight. And I see how they act when no one is likely to be looking. They are gentle and loving with the residents for the most part. And they are working constantly. I think people who do this work are generally regarded as low-skill workers because they don’t need advanced education to be nursing aides. Perhaps that is the case. But at the Alz center, they have to have a heart. And I know that most of them do.

Messy Thanksgiving

Last year, I remember that I arrived a little late for the Alz center Thanksgiving dinner, and Mom had gotten agitated, and it was hard for her to shake that emotion. What a difference this year has made. I was alone last year because Patrick had a class. This year, he joined me and we got to the center later than most people, but before the food had arrived for anyone. When we got there, staff members pointed us to our table. “Good luck rounding up Bonnie to sit here,” someone said. Patrick and I went to find Mom and Mr. R sitting in a distant corner, on chairs against a wall because their couches had been moved to make room for all the extra people. Mom saw me and stood up and came to me and hugged me. I asked her if she wanted to come sit with me and Patrick at a table for dinner, and she said yes. And we asked Mr. R to join us. Mom and Mr. R sat together with Patrick next to him and me next to Mom.

I asked Patrick to take a picture of me with Mom. Her hair had been recently cut, and it is shorter than usual. I should also note that she has had this shirt on just about every time I have visited her lately. I imagine they might be letting her pick out her clothes. She had just a bit of body odor. And her pink pants were spotty, too, but that could have been from today’s breakfast and lunch.

Mom and me, before dinner arrived.

Mr. R’s food arrived first. I can’t help mentioning that he had no family there; I’ve only ever heard that he has a son. Then my plate arrived. And a short while later, Mom’s and Patrick’s plates were served. It’s an all-hands-on-deck event for the center staff, and they do their best with the serving of more than double the number of people they usually feed. Mom had been holding a comb when we first arrived, and it was lying on the table. She picked it up and started to use it as a utensil. I didn’t even notice at first. I took the comb and wrapped it in a napkin and put a fork and spoon on Mom’s plate as a guide. And she picked up a knife and started to use it as her main utensil of choice. She would stab her sweet potatoes and lift them to her mouth. Sometimes she would make it and sometimes food ended up on her shirt. Same with turkey and a few bites of mashed potatoes. She drank plenty of water. She pointed to the stuffing on my plate and said it was ugly. She really didn’t eat very much. She has an unfortunate habit of sort of poking at her food in a way that stirs it up. She eventually reached across the table and took one of Patrick’s sweet potatoes, which prompted him to dump the rest of his yams onto her plate. And she placed a napkin over her food. “Rest in peace, food,” Patrick joked. “Is he talking about his pants?” Mom asked. She later retrieved the napkin and took another bite or two. She went through several utensils, as well, and I went through about four napkins cleaning off her shirt and her face. Because she was using her knife, she sometimes scooped big bites into her mouth, and left a lot on her lips and cheeks in the process.

Mom made a mess of the table, and dropped a lot of food on herself.

I ordered her a piece of pumpkin pie. She ate all of that, mostly with a knife, and in this order: whipped cream, pumpkin filling, crust. Mr. R ate about half of his pecan pie, and then his fork broke. We offered him a clean spoon, but he declined. Mom picked up his pie and considered eating it, too, but perhaps because the broken fork was still on the plate, she put it down.

We didn’t talk a whole lot. I asked her if she liked the food. If she’s been sleeping OK. If she has any aches or itchy parts. Patrick admired her haircut. When it was clear we were done eating, she looked at me and said, “Wanna go?” Mr. R had been sullen through most of the meal. Mom would touch his leg or rub his arm. At one point she touched him and said, “I love you.” She told me he is a good husband. I knew when dinner was over that he was ready to go. And truth be told, Patrick and I were ready, too. So we all got up, excused ourselves to the two other families at our table, and followed Mom and Mr. R down the hall. “We’ve been banished from the building,” I joked to staff members having their own dinner in the hallway after serving us ours. In the lobby, which was crowded, Mom turned to us and waved in a way as if she were asking us to follow her. We caught up a little bit. And then she turned, and they kept walking away, toward the other wing. “Should we say goodbye?” Patrick asked. “There’s really no need to,” I replied.

Table manners

On two recent occasions, I’ve been at the Alz center during mealtime. I no longer time my visits to end when a meal begins. It’s pretty easy to say goodbye to Mom now. Between her fixation on Mr. R and her general happiness, she has been quite content to bid me farewell when I have announced it’s time for me to go. So being there when the food arrived became a new experience again – because of the way Mom treats her food now.

I can’t recall now why I was there a few weeks ago when her lunch arrived. I think it was the week leading up to the failed dermatologist appointment, when I was in the center on four days in a row. The lunch on this day was salisbury steak, potatoes and gravy, and some sort of vegetable. When the tray was placed in front of Mom, she picked up the steak – which was covered with gravy – with her hand and took a bite out of it. And then she placed it on the table beside her tray, as if to set it aside briefly while she tended to other things. I encouraged her to use a fork. But it didn’t have much meaning to her. She eventually picked up the steak with her hand and took another bite. She would sort of twitch her hands over the tray, as if the sight of everything was a little confusing. But once she had located food, she knew it went in her mouth. I left before she finished. And I felt a little sad at this obvious sign of decline.

I was there again on a Sunday afternoon, at a time that I thought would be following lunch. This was the day Ed was visiting from Cleveland. I arrived early to see if I could locate shoes for Mom. It was about 12:45, so I assume Mom had finished her lunch when I found her sitting with Mr. R. But I learned that Mom apparently had rejected the notion of lunch, as had Mr. R, before I got there. So when I arrived, a staff member tried again to give Mom a tray. Mom sat down at the table, studied the tray, and picked up the small plate with a piece of chocolate cream pie on it. She used her fingers to dig into the top of the pie and put the creamy contents into her mouth. She took a few bites that way before putting down the plate. The rest of her lunch was the kind of food she likes – turkey and mashed potatoes with gravy. I cut up the turkey with her fork and suggested she try using it to take some bites. She did use the fork briefly. But her heart didn’t seem really in it this time. A man at the table tried to converse with us, which was distracting but also pleasant – Mom seemed to enjoy him despite the fact that what they said to each other didn’t make much sense. I eventually left Mom at the table and went looking for Ed in the parking lot. When I came back, Mom’s plate was very unattractive, as if she had stirred her food. I guess she didn’t have much of an appetite that day.

My neighbor, a hospice social worker, told me recently that she sees Mom almost every day because she has so many patients at the center. She said it looks like Mom has lost some weight. I hope that doesn’t mean Mom is not eating. I assume I would get a call if the staff became seriously concerned. I haven’t seen Mom in about 12 days. I visited her on the day I left for a conference, and I’ve been a little sick since I got back. That was a really pleasant visit. There was a man playing guitar and singing old songs, and the residents were seated in a circle around him. I sat beside Mom and we swayed to the music, clapped our hands and just enjoyed ourselves. She would occasionally know a word or two, such as “Don’t sit under the apple tree with anyone else but me.” At one point, the activities director came over and jokingly asked Mom who that pretty girl was sitting beside her. And Mom looked over to me, and seemed surprised to see me there. That is how fast the forgetting can happen.

I’m thinking about the eating thing because Patrick and I will be having Thanksgiving dinner with Mom at the Alz center this Thursday, a week before the actual holiday. It will be interesting to see how Mom does with her food. When I spoke about the changes in her eating habits at support group, the doctor who runs the meetings noted that the norms associated with polite eating aren’t really important for Alzheimer’s patients. And I agree – I don’t care that Mom appears to be impolite or childlike. I don’t care about that AT ALL. I’m relieved that she still knows that food goes in her mouth, and that she still finds chocolate cream pie enticing. But to see her eat with her fingers, and to not recognize how to use utensils, is such a clear indication that physical functions are slipping along with her mental function. I have no delusions about how this is going to turn out. But I still don’t like bearing witness to these inevitable losses.

An ‘anniversary,’ I guess

Yesterday, I looked back four years, to Mom’s last election. Today, I quietly observed that this is the fifth anniversary of Mom’s Alzheimer’s diagnosis. Nov. 3, 2005. I still have the dated prescription pad pages – two of them, actually, that the doctor filled out with medicines and other recommendations now that the dementia diagnosis had been confirmed.

I took the day off of work. My sister Laura came in from California to go to the doctor’s appointment. Mom had already been through lots of testing – written and oral tests in the clinic, an MRI and nuclear medicine scan of her brain. I think Laura and I felt pretty sure about what we were going to hear. I honestly don’t know what Mom was feeling or thinking that day.

The doctor showed us the scans and talked us through the findings. In the end, he said the results pointed to a dementia that most closely resembled the Alzheimer’s form. He didn’t go into any great detail about what to expect. I think that right away, he suggested that Mom could be a good candidate for a clinical trial of the investigational use of an existing drug to see if it could benefit Alzheimer’s patients. Years later, I read a news story that indicated this drug, a diabetes medication, did not have any positive effects for dementia patients. I never knew if Mom got the drug or a placebo. Mom was later in another clinical trial that ended up being a bust, as well.

My memory of Mom’s reaction was that it was patient and quiet, like she was working just a little to absorb the news. She told the doctor she had spent many years as a heavy drinker, and asked if that caused the dementia. He said no, it was not a cause, but that the drinking probably left her with less brain to work with. She was going to get Alzheimer’s anyhow, but having an alcoholic past probably moved its development up to an earlier point in her life.

After the appointment, we visited my office, which coincidentally was right across the hall from the clinic. I don’t think we knew how to act or feel, so we put on happy faces and said hello to my co-workers. I imagine we probably went to lunch. We later called our brother to let him know of the diagnosis.

It’s weird, I remember being in the clinic room, sitting and listening to the doctor. But I don’t remember much else about the day, or my sister’s visit. I think at that time I was so full of dread of what was likely to lie ahead that I was consumed with feelings about my own future and not so much about Mom’s. I do think I realized at this point, though, that I needed to mellow out on her and be more patient with her. I’m ashamed at how long it took me to really fully grasp what she must have gone through during those early months and maybe even more than a year of being confused, having trouble finding words, losing track of her finances, being suspicious and distrustful but not knowing why, feeling withdrawn from her friends and family, maybe getting lost while driving. And who knows what else. I’m frankly glad those fears are behind her now. If it has to be that she is an Alzheimer’s patient, I am relieved that she has become the kind of patient she is: content, full of laughter and smiles, comfortable. Happy, I’d even venture to say.

Voting with Mom

Four years ago, Mom had been diagnosed with Alzheimer’s for a year, but she was still living in her apartment, still driving to the grocery store and to the occasional errand, and she still paid attention to politics. At least a little bit. She still took the daily paper and she watched broadcast television news, never having had cable. She wanted to vote in our gubernatorial election, and she wanted to vote for the Democratic candidate for governor. She didn’t know anything else about the election. But casting that vote mattered to her.

So I took her to the polls with me. There was a short line. I voted first, and then Mom took her place at a booth. And she was completely frozen. She didn’t know the first thing about how to operate the electronic machine. I walked toward her to help her, and a startled poll worker intervened, stunned that I was going to get involved in Mom’s private voting activity. “I want to vote for governor, and that’s all,” Mom said. The poll worker helped her find the candidate’s name. She helped her skip the rest of the ballot, and helped Mom finalize her vote. Mom was pleased. I tried to whisper that Mom had Alzheimer’s. But it didn’t really matter. The voting had taken place.

That was the last time Mom voted. Ironically, her assisted living facility functioned as a polling place. But by the time she had moved in there, she had lost interest in politics for the most part. A lifelong Democrat, she did retain some affection for Hillary Clinton. She never really seemed to understand the appeal of Barack Obama. I like to think that had her mind been clear, she would have been proud that our country elected its first black president in her lifetime.

Every time I go to vote, and I always vote, I have to sign the registration book so my current signature matches the signature on file. And every time I do that, I see Mom’s name right above mine. Bonnie Caldwell. She lived in my precinct, in an apartment around the corner, before she entered institutions. And her address has never been changed officially for those voting books. Because I would have to do that, and I haven’t done it. So she is still registered. So I think of her every time I vote. And I think about how her political leanings influenced mine. And that I am proud of my political views, and I’m glad I cast the same kinds of votes that she would if she still could.