Archive for January, 2012|Monthly archive page

Three years

I began writing this blog on Jan. 14, 2009. On Jan. 14 of this year, I noted the blogiversary in my mind and mentioned it to my husband and another blogging friend while we were out at dinner. I then wrote a post on Jan. 16 but didn’t mention that an anniversary had just gone by. Perhaps I knew then that I would take a little breather from the blog and from Mom. Until yesterday, I hadn’t visited her for almost two weeks. I can’t say why, for sure. She was perfectly pleasant when I last saw her, talking and being social and sort of funny. I can say I have been feeling a little bit sad about her. I looked back at some old posts when I realized I had hit the three-year mark, and it was a reminder of how much Mom has changed in that time.

Taking care of her was more difficult back then. Already a needy woman, she was so very needy at that time – which was one reason I felt the need to start a blog. As her bank account emptied and the move to a nursing home neared, I hoped that her disease would progress so that she would be less with it and therefore, in my mind, more able to handle the transition to a nursing home. Well, her disease did progress, but she didn’t handle the first transition well at all – and I think her state of mind wasn’t the issue. For those two weeks she lived in a traditional nursing home, she was simply in the wrong place. Once she arrived at the Alz center, she settled in immediately. And as I read some old posts from her first months at the Alz center, I was reminded of how well she was still doing at that time. She would say “Hallelujah” when I came to visit. She knew my name and my face. We could still go out to eat at a restaurant. She carried dog/cat and wore lots of jewelry. Now, she doesn’t know what jewelry is.

So, now her disease is very progressed. And I find myself regretting those wishes I had that she would lose her mind quickly for my convenience. I did truly think it would be best for her – I assumed that the sicker she was, the less aware she would be of the change in her living arrangement. And being less aware, I reasoned, might mean she’d be less afraid, or angry, or both. But I can’t deny that I hoped, too, that her tolerance of the change would mean there would be less heartache and fewer headaches for me.

Now I can look back with a clearer head and realize she put up with so much early in her illness and handled it all relatively well. I can say this after hearing lots of stories from caregivers whose loved ones had a much more difficult disease process. After she had a minor traffic accident, I took her car keys away. That was it – no more driving. Six weeks later, in the course of two days, my siblings and I moved her out of her apartment and into a much smaller assisted living apartment. With that move, she began eating meals with strangers and was subjected to regular visits from nurses, a housekeeper and other staffers. Her most common complaint was that she was living in a cave. She could still call me on the phone then, and she did, with frequency. She was fretful sometimes, and scared and confused. She made the occasional nasty remark, but she was not mean to me, or to the strangers who in short order became her friends. She would imagine that her cat was missing or call me convinced that something – something she couldn’t explain – was somehow out of order. Those days are long over. She stopped calling by the summer of 2009. What a treat it would be to pick up the phone now and have Mom greet me on the other end.

This past Friday night, I watched an old Frontline program I had taped, about the funeral home industry. There was one very sad story about a young couple burying their toddler son. And that made me cry. But there were also many images of the undertakers handling elderly bodies, washing them and dressing them and putting makeup on their faces. Those images got to me. The employees were very tender with these bodies, and I’d like to think it wasn’t just because they were on camera. I recalled preplanning Mom’s funeral and thought about how many decisions still lie ahead. And I thought about how I used to obsess about Mom’s death when I realized she had dementia, because at that time I had no idea how much living she could still do in spite of the disease. And I thought about how I am not in any hurry to see her life end now that she has become this fragile but resilient little buddy of mine. And I cried and cried.

My eyes puffy from the night before, I went to the Alz center on Saturday morning. I found Mom on a couch in the program area.

Mom at rest, not long after breakfast had been cleared away.

I pulled up a chair and looked at her. “Bonnie,” I said. “Bonnie, are you awake?” She opened her eyes and looked at me and closed them again. She straightened her legs. I touched her hands and rubbed her arm but didn’t talk anymore. She fell asleep. I could tell because she twitched a little and made funny movements with her mouth. She opened her eyes and reached up and touched my arm and then rested her arm and fell back to sleep. I thought about crying again, but I didn’t. I sat there for 20 minutes. She never woke up.

A busy mind

Mom talked nonstop during my visit with her today. I found her lying on a couch by herself. She looked like she might be considering a nap. I pulled a chair up and touched her hand, which was resting on her right thigh. She didn’t acknowledge my touch. But she began to talk. These are just some of the things she said:

“I am so pissed off at her.” She continued on this topic for awhile, and I wondered if she was actually recalling a negative experience, or if there was a chance she was pissed at me. If that was the case, she didn’t seem to attach the negative feelings to me. I wondered what could have possibly happened.

“Nancy was here.” And I said, “Nancy? Was here?” Nancy is Mom’s sister, and I’m pretty sure I would know if she had visited. It is also the name of an old neighbor of Mom’s. Mom sometimes tosses out these names and it doesn’t mean anything. But then she said, “Yeah, isn’t that something?”

“The horses ran by.” She talks about horses a lot.

“Wasn’t that awful?” (pause, with no response from me) “She said to herself.” This made me laugh out loud, which made Mom laugh. That was classic Bonnie, to say something jokingly snide like that if she felt like she was being ignored. I loved it.

Throughout this conversation, I gently touched Mom’s hand or rubbed her arm, hoping that these physically comforting feelings might make her forget whatever she was pissed about. She was completely unresponsive to my touch. But she didn’t resist it. And she kept talking, sometimes in complete sentences, and sometimes in made-up words or what to me are meaningless syllables.

She abruptly sat up and then stood up. We took a walk around the program area, and Mom kept up the talking. She tapped one woman resident on the shoulder, and the woman said, “Are you crazy?” But Mom didn’t notice. Mom approached a male resident I didn’t recognize and put her hands on his shoulders. She was being friendly, but he said, “Hey, hey,” and she backed away. And she reached out to a university student who was visiting for a community service project. I explained, “My mom is very extroverted today.” And I thanked her for her volunteer visit.

We circled back to the couch, and Mom stretched out again. I leaned down to kiss her goodbye, and she said, “Where’s Roxy?” Roxy is one of our cats that lived with Mom for the last few years of his life; he died 2 1/2 years ago, beside Mom in her bed when she was in assisted living. I haven’t heard her say that name in a long time – even when he was alive, she often called him “Big Boy.” He was a fat cat.

When I made a motion to leave, Mom got up and started walking with me. Just then the lunch trays arrived, so I sat her down at a table and put a bib on her. A volunteer brought her tray. I poured her milk and buttered her bread and cut up her salisbury steak. Once I moved out of her way, she said, “I want that,” and grabbed a boiled potato with her hands. And then she began slurping at her ice cream cup. I could see she was focused on her food and was interested in eating, so I gave her one more kiss and told her to have a good lunch.

‘Sometimes I forget who I am’

Well, it appears I took a little vacation from the blog. It has been no vacation, that’s for sure. I’ve been wallowing in self-pity for the last several weeks – but it has had nothing to do with Mom. I came down with a cold, then I got a dental crown, then I had a toothache for 15 days, then I got a root canal, and then I was hit by a nasty sinus infection that really kicked my butt. I am on the mend now. Things could have been much worse – things could almost always be worse, for sure – but I just didn’t feel inclined to update the blog for awhile.

I have seen Mom a few times since I last posted. And she is doing great. My brother visited with her the week leading up to Christmas, when he was in town. He texted me some questions while he was with her, and I sent back some replies: What’s the deal with Mr. Beard? (He can appear grumpy, but he is actually extremely easy going.) Mom just got up and walked away. (Yes, she does that sometimes. It’s my cue to leave.) Christmas weekend went by, and we left town to visit Patrick’s family in Michigan. I fooled myself into thinking I would visit Mom on Christmas morning before we left. I didn’t make it. There really wasn’t time. And it’s OK, because she has absolutely no idea what Christmas is anymore. But even years into her illness, and on the fourth or so Christmas that hasn’t mattered to her, it still feels weird sometimes to count her out of it completely.

I visited her over the New Year’s weekend, and found her sitting at a table with a man who I have never spent much time with, but who I know to be the husband of a former longtime support group attendee. Ever since she moved him out of her home and into the Alz center, she hasn’t come to group anymore. This man and Mom were sharing the table, but they weren’t really together. I greeted Mom with enthusiasm. She began talking and she just continued to talk. She was very animated, and I was so pleased to see her in such a good mood. She laughed a lot and was full of smiles. I don’t recall most of what she said, but I do remember clearly that she said, “Sometimes I forget who I am.” To which I replied, “You’re Bonnie.” And that was that.

On my next visit, about a week later, Mom was a little more subdued. She was lounging on a couch with Mr. Beard. He seemed nearly asleep, and I thought Mom was probably tired enough to drift off into a nap. Something she said when I arrived confirmed my suspicion that sometimes when she talks, she is describing her perception of what she is seeing. I stepped away to push a chair toward her, and she said, “I can go get one.” I think she was offering to get me a chair. But it was too late; I had gotten it myself. I don’t know if she actually would have gone through the motion of getting me a chair, because that seems beyond her comprehension to me at this point. But something about her saying that just as I was pulling up the chair – I just felt that I knew that was what she was trying to convey.

I talked to her and tried to take a picture of her – she was wearing pajamas that my brother gave her a few years ago for Christmas. They’re fleece, and a pretty shade of turquoise, and I liked that they were functioning as a lounge outfit for her. But it was hard to get a good shot of her so I gave up. She was as pleasant as the last visit, but a little less clear of mind, if it makes any sense at all to describe her that way. We got up to take a walk, and then sat in the hallway on a bench that rocks. We rocked a little, and I put my arm around her, and we just quietly swayed together for a little while. I was on my way to my root canal, so I wanted to brush my teeth. I used her bathroom to do that, and when I came back down the hall, she was gone. I found her in the lobby, chatting with a gentleman friend on a couch. I kissed her goodbye and scooted away while they resumed their conversation.