Archive for May, 2010|Monthly archive page

‘What’s your name?’

The last time I visited Mom, she certainly recognized me when I arrived. She and Mr. R were sitting on a couch together in the program area, as usual. I hugged her hello. She asked Mr. R to scoot over to make room for me on the couch. We sat together and chatted a little bit. Mom was not in great form conversation-wise. I suspected she might have some recollection of an activity she had done earlier, or an event that had happened sometime recently, and talked in circles about things that, in the present moment, did not make sense. I just nodded and went along with it. At one point, she reached down and started to pull up my pant leg. I wondered if she was having a physical memory of something – getting dressed or undressed? Being showered? I really don’t know. She was definitely confused. But perfectly content.

And then she looked at me and said, “What’s your name again?” She seemed a little sheepish. I said, “Emily.” “OK, that’s right,” she said. And it was fine. I said, “Do you recognize my face?” And she said, “Oh, yes.” It was not a test for her – I just never want her to think I’m a stranger. I don’t want her to fear me. I don’t suspect she would now that she is in the Alz center – the atmosphere is so loving and comforting that just about every human contact is a positive experience for the residents unless they are in crisis for some other reason. I do believe she will always know I am her person.

I filed her fingernails. They are so long, and I had once again forgotten to bring clippers. She seemed to think the filing tickled, or was a little uncomfortable, but she let me do it. And then I plucked some hairs from her chin. At some point, I made a reference to Mr. R being her boyfriend. And he said, “We’re just friends.” And I said, “Oh, I’m sorry. OK.” They had been kissing when I arrived. So they are very good friends. Eventually Mom suggested we get up and go somewhere, so the three of us took a walk. As we headed toward the lobby, Mom said, “I’m so happy.” Nothing beats that. We crossed the lobby and walked to the skilled side, and then turned around. Walking back toward the program area, Mom and Mr. R were holding hands. I took her other hand. Once again, Mom said how happy she was to have her two good friends with her. “But you’re more than a friend,” she said to me. “You’re such a good person.” I replied, “And so are you.”

Later in the week, at support group, when it was my turn to talk I said I am suffering from some hurt feelings. That Mom is so wrapped up in Mr. R and that, being on borrowed time with Mom, I am missing out. When I had arrived for the visit, a family member who is always around had told me I should just tell Mr. R I want to be with Mom and that he would understand. Maybe so, but it wouldn’t necessarily be what Mom wants. And it could create temporary conflict between them. As I talked about this in support group, I told the doctor that I heeded his advice: Do what is best for Mom, not for me. That can be hard for caregivers – to figure out what is best for the patient, and then to do it. With Mom, it’s pretty easy to tell she is quite content to hang out with Mr. R all day, every day. The doctor reminded us that loneliness can be one of the worst consequences of Alzheimer’s disease. That social interaction improves quality of life dramatically. I am lucky that Mom has found a way to fend off loneliness. The comfort I get from knowing she is happy outweighs any other emotions I might have.

Accounts receivable

It’s lovely to come home on a Monday evening to find a phone message from the apparently incompetent pharmacy management company that thinks it is going to collect $2,000+ from Mom for a balance on meds the company provided but didn’t properly bill me for for months. I wrote about this in January – the company had allowed a $4,500 or so balance pile up (in the span of four months – ridiculous, outrageous costs in the first place). Twice – TWICE – I had informed these people of Mom’s Medicaid billing number immediately upon her account approval in October. In January, the company told me Medicaid didn’t cover Mom’s pharmacy costs because she wasn’t enrolled in a Medicare D program. No one had EVER told me about any such requirement along the way. All I had ever heard was that Medicaid covered nursing home meds. In January, when this blew up, the business manager at the Alz center coordinated Mom’s insurance info with my help and was supposed to give that info to the pharmacy company so the company could go back to Mom’s insurer and get the reimbursement.

When I talked to the company at the time, I said I would start paying $150 at a time when Mom’s checking account allowed for that, to make a good faith effort to pay something on the account. In February, I got a statement from Mom’s insurance company that appeared to be a rejection of part of the claim. I didn’t really understand it. I didn’t hear boo from the pharmacy company for awhile, and then I got bills for about $2,000. So half the bill had been paid by Mom’s insurance. It pissed me off to think the insurance wouldn’t cover the rest – we weren’t close to being even six months out from the actual provision of the meds. But over this, I have no control. As far as I know. If Mom was going to be liable for the rest, it was going to be paid off in $150 increments for as long as her checking account will allow. That’s how I had left it with the company.

So today, the end of May, I get a call from accounts receivable. The woman sounds exasperated while leaving her message. Real nice. So I have spread documents all over my office floor, retrieved old e-mails from January, found Mom’s insurance card (thankfully, the Alz centered enrolled her in a Medicare D program so she has been covered by Medicaid since Jan. 1). I returned the call. All lines are busy, at 6 p.m. So I left a somewhat snotty message about how things are – how the company waited a long time to tell me there was a problem with Medicaid, so long, in fact, that it lost the chance to get reimbursed by Mom’s insurance company that actually DID cover her at that time.

It’s such a crock. And of course it’s stressful, because I am fully prepared for the company to say that I, as the so-called “responsible party” for Mom’s account, am going to be liable for this balance. Uh, no. I honestly don’t know the rules. I think I have signed something that says I am responsible for payment for certain things should they not be covered … I think that was at the nursing home. But it’s something that one has to sign in order to move Mom into the building. I could look it up to be sure, but I am not going to.

Meanwhile, under the current new pharmacy company and Medicare D coverage, Mom is billed a miscellaneous amount from time to time. Sometimes $36, sometimes $67, and I always wonder: How is it, that if under Medicaid rules she is allowed to retain only $40 per month of her income, that she is then expected to pay bills that exceed that $40? What if I weren’t here to manage her tiny amount of remaining money? I am just furious about this whole thing.

Elvis was in the building

I’ve delayed writing this entry for a week. I was sad last Friday after visiting Mom, even though much of the visit was fun. It was Elvis day at the Alz center, the finale to Nursing Home Week festivities. I had seen Elvis at the Christmas party and I enjoyed him, so I went back to see him again. Plus, it was time for a visit with Mom, too.

I found her and Mr. R in the program area, on their usual couch. Mom put her arms up for a hug and I greeted Mr. R with a wave. I sat in the chair next to Mom’s side of the couch. Elvis was already singing, so I listened for a little bit and watched the crowd dancing around him. Mom and Mr. R occasionally kept a beat with the songs, but they seemed content to sit there and not join the audience that had made a circle around the central performance area.

My view of Mom, with Mr. R getting his cuddles in.

Some little kids were visiting, dancing around, and Mom seemed to enjoy seeing them. Occasionally, I would get up and walk over to the outskirts of the circle to get a closer look at Elvis. Mom and Mr. R didn’t budge. When I was with them in their corner of the room, this was my view of the festivities.

Mom and Mr. R did not seem interested in getting a closer look at Elvis. Almost everyone else formed a circle for his performance, and some got up to dance.

So I just sat there, and Mom would turn toward me from time to time and look at me. “You’re the most beautiful person in the world,” she said once. I did like that. But I found myself not really thinking much of this visit. I suppose I could have tried to convince Mom and Mr. R to move closer, but I thought, why bother? They were obviously happy where they were. Mom showed just a hint of a struggle with her divided attention. I think she tried not to ignore me, but it was hard to really try to chat or anything because the music was loud. Eventually, an activities staff member came over and took Mom’s hands and said, “Come on, Bonnie. Come dance with me.” And she looked at me and waved her head in the direction of the dance floor, motioning for me to follow. She said to me, “You must just…” but didn’t finish. Yes, I just…don’t know what I should do. She got us into the circle near Elvis and put our hands together, and Mom and I started to dance. We held hands and waved them around together, and swayed to the music. I led for awhile and gave her a twirl. I switched sides and we danced some more. For about 1 1/2 songs, we danced together, and laughed. Mom admired my necklace. I told her how often I’ve been told how much she likes to dance. “Really?” she said. After the end of the second dance, I asked her if she was ready to sit down, and she was.

Elvis put on a nice show. It cheered me up.

She went back to the couch and leaned over Mr. R and gave him several smooches before sitting next to him. I took this as my cue to leave. I kissed her goodbye and walked out as Elvis was wrapping up. I waved and mouthed the words “thank you” to the activities staff member on my way out. In the car, I got the weeps. Just briefly. I felt stupid. I claim that Mom’s happiness is my top priority. Now that she has found it with Mr. R, apparently I feel left out. I was embarrassed that the staff member felt sorry for me. But I was also very touched by her gesture. Mostly, I just felt like all this time that Mom spends with Mr. R is a missed opportunity for me. At one time, I would have been glad to have her so completely distracted. But those were times when she was distressed. Now that she’s so happy, she is much more fun to be around. And I can only observe that happiness from a certain distance. It’s good for her. Very good. And for me. I don’t want a change to this situation – the companionship they offer each other is such a gift. I am still adjusting, I guess.

Another Mother’s Day

About a month ago, I received a mailing from the Alz center about Mother’s Day festivities: a two-hour party on Saturday and an ice cream social on Sunday. In my mind, I planned to attend the Saturday party, and perhaps the Sunday event. The rest of this week is also full of events to observe National Nursing Home Week. I put a few items on my calendar that I’d like to see: Celtic dancing on Wednesday and an Elvis impersonator on Friday.

The week before Mother’s Day, I thought each day that I could try to squeeze in a quick visit with Mom. I hadn’t been to the center since Friday, April 23, followed by some busy days at work and a weekend off from visiting. But I had another busy week, and didn’t get to visit. On Saturday morning of Mother’s Day weekend, Patrick and I talked about going to the party together. I wanted him to come for something like this, especially since I might feel like a third wheel if Mr. R was around.

We decided to take naps before we went to the party, which was to run from 2-4 p.m. I was restless. Couldn’t sleep. By about 1:30, I realized my heart was pounding. My mind was racing. I was having an anxiety attack, albeit a mild one, about seeing Mom for the first time in two weeks. I didn’t know what to expect. I felt guilty for letting so much time pass. I was afraid staff might think I’m an absent daughter. All the while, I thought hateful thoughts about Mother’s Day, which, well, just doesn’t have much meaning for me anymore and mostly makes me sad. I rushed through a shower, woke up Patrick and told him I was going to the party without him.

When I arrived, Mom was in the program area as usual, sitting with Mr. R on their usual couch. As I approached, she smiled and said hello and held out her arms for a hug. All was fine. She recognized me. She was with her beau. She was content. I sat for a moment and then suggested we go to the party, which was in a dining room off of the lobby. Mr. R came with us. I fixed a plate of cheese cubes and cream puffs for Mom and got a fruit cup for myself. Mr. R loaded his plate with six cream puffs and two chocolate eclairs. I got a cup of punch – pink with ice cream floating in it – to share with Mom. We sat at a table and ate. I tried to get Mom to sit in the middle, but she plopped down in the chair on the left, so I was between her and Mr. R. I imagine he didn’t like that. Mom got chocolate all over her lips and fingers. I tried to clean her up with a napkin. We sat for awhile, but it was sort of loud. So I suggested we return to the program area.

We found a different couch to sit on. Near the couch Mom had been sitting on earlier, a new resident was sitting in a wheelchair saying over and over, to no one in particular, but pretty loudly: “They won’t let me out of here. They won’t let me out of here.” She didn’t seem particularly distressed. Just stuck. And noisy. On this couch, I noticed Mom’s whiskery chin, so I got out the tweezers and plucked until she complained that it hurt. We took another walk to the party room to see the results of a raffle drawing, but it hadn’t happened yet. We went back to our couch. A staff member brought a vase of flowers over that had just been delivered for Mom – from my sister, Laura. I showed Mom the card. The staff member took the flowers out of the glass vase they came in and put them in a plastic pitcher. No glass is allowed anywhere. I took the vase home. I took a picture of Mom with her flowers and then suggested they be put on the nursing station counter for all to enjoy.

Mom and her beautiful Mother's Day flowers, sent by my sister.

Mom said she had to pee so I took her to her room. With one hand beginning to pull down her pants, she used the other to start pulling back the covers on her bed until I opened the bathroom door and guided her to the toilet. When she was done, I pointed to the memory poster on the wall – of Mom, family and friends, from the research project she was in gauging whether pictures are more meaningful when accompanied by captions.

Young Bonnie, looking beautiful. Mom no longer recognizes herself in this picture.


I asked her if she ever looks at it. She said yes, and she pointed to the photo of her from her college graduation (I think?) and said, “That’s my daughter. She is so beautiful.” I told her that was actually a picture of her, and that she was, indeed, beautiful. She didn’t seem to agree that it could possibly be her. She didn’t seem interested in the other photos at that time. And I was sort of discouraged, so I suggested it was time for me to go and that she should join Mr. R in the program area.

I pointed him out to her, and suggested she go sit with him, and at this point, I could swear that she had forgotten who he was. We walked toward him, and I wanted her to sit with him so I could leave. But she was antsy, and thought she wanted to go with me somewhere. I told her I was going grocery shopping and that would be no fun for her. Meanwhile, Mr. R was getting angry, and said Mom wanted to sit with some other man. I don’t know what led him to think this – she had greeted a male staff member at one point, and I have thought once before that he mistook me for a man. I found the deterioration of the situation very stressful. We all started walking toward the lobby, and Mom tried to take Mr. R’s arm but he pulled away. We got to the lobby, and I drifted away from them, and they started to talk quietly to each other, and they headed together back toward the program area, where I assumed they would forget any confusion or anger and resume sitting together on the couch holding hands. I escaped without saying goodbye.

And I didn’t go back again on Sunday.

Research report

The doctor who runs the Alz center support group offered to fill us in on some information from his latest trip to the American Academy of Neurology in Toronto. He started group a half-hour early for the presentation. It is clear during support group meetings that he feels frustrated about the status of research on Alzheimer’s disease. Tonight that became even more clear. I should credit him since I am going to write about his presentation: he is Leopold Liss. If I have the facts straight, he was Ohio State’s first cognitive disorders clinic director in the 1970s. He is very dedicated to patients with dementia and their families. He is the medical director of the Alz center.

He gave us a primer on the basics of Alzheimer’s, and the plaques and tangles in the brain that characterize the disease. Even now, 100 years after the disease’s identification, researchers don’t know whether the plaques and tangles cause the disease or are instead consequences of the disease. “We still need to have answers to some very basic questions,” he said. Also going on in the Alzheimer brain is a loss of function of synapses that transmit signals to and from nerve cells. This is why sometimes, a very sick patient can suddenly retrieve information that was thought to be lost forever. Somehow, the signals get through from time to time.

He also listed the most common medications used to treat Alzheimer’s – though “treat” might be an optimistic word. They are believed to slow the progression of the disease. The oldest drug that is still used, Aricept, which was approved in 1997, inhibits the activity of an enzyme that breaks down neurotransmitters in the brain. But it is not enough to stop the disease in its tracks. A more recent drug, Namenda, acts on a different part of the brain. It was approved in 2003. The lack of more drugs for Alzheimer’s is particularly disheartening for Dr. Liss. “It’s frustrating, because we don’t have anything new. And the problem is, where are we really going right now?” he said.

He read excerpts of a few news releases from the neurology meeting, including one that had some promise. Scientists used intravenous immunoglobulin, a blood product injected to treat certain immune deficiencies and autoimmune and inflammatory conditions, in a small number of Alzheimer’s patients and saw minor improvements in brain anatomy and cognitive function as a result, compared to controls. That gives rise to the idea that inflammation in the brain is a significant contributor to dementia, something that many researchers think is the case. These researchers now are going to study the experimental treatment on a much larger sample of patients.

Reputable researchers also have performed plenty of research seeking to show how to prevent Alzheimer’s, and Dr. Liss noted that several news releases from the meeting covered recent studies in this area. But he also read from a recent National Institutes of Health announcement about an independent panel that found that currently recommended interventions for prevention aren’t really backed by adequate evidence. I noticed this news the day it came out about a week ago. For people like me, children of Alzheimer’s patients, the idea of prevention is, as you might imagine, very important. We can’t help thinking we are at higher risk for the disease even though that is not necessarily firmly established, either. This is my main motivation for exercise: maintaining blood flow to my brain. The NIH statement said that most of the most typically recommended behaviors for possible prevention – exercise, healthy diet, pursuit of cardiovascular health, an active brain – are not harmful and have other benefits, so all is not lost. The panel closed its statement by recommending that the United States expand efforts relating to caregiver issues and invest more in research about how to prevent and cure Alzheimer’s.

In summary, Dr. Liss said, “We have very little to offer and are grasping at straws.”

I did not stay for the support group meeting that followed. I had developed a headache. But I did slip back into the program area to see if I could squeeze in a quick visit with Mom. I couldn’t find her anywhere. It was quiet in this usually bustling area, with a group of about a dozen residents around a table listening to a story and a few single residents scattered about on couches or chairs. I saw Mr. R on a distant couch, by himself. A staff member told me Mom was in bed. It was 7 p.m. “After dinner, she likes to go to her room,” he said. I didn’t want to disturb her, so I left. When I told Patrick about that, he said it “sounds like heaven.” I thought so, too – spend the day in a busy social setting holding hands with a boyfriend, have three square meals, play some games, do an art project, listen to music, dance and sing, maybe go on a field trip. Fill up on dinner and go straight to bed. Wake up the next day and do it all again.