Archive for October, 2011|Monthly archive page

Two weeks, small changes

After seeing Mom in such good shape right before my trip, I let two weeks slip by before I could get to see her again. After my conference I took another out-of-town trip, to see friends in Chicago, and had some deadlines at work that prevented me from getting to the Alz center during the week. I arrived Sunday about half an hour before lunch. Mom was walking around in the program area. I went up to her and said “hi” enthusiastically and hugged her. She seemed to enjoy the greeting. I walked beside her and she took my hand. We walked toward the lobby. I noticed that as she spoke, she sometimes got hung up on a syllable: My-my-my or be-be-be at the beginning of a word. There is a chance she was tired, or maybe even just fooling around, but I took it as a potential change in her speaking ability – something I will watch for the next time I visit. She still chattered on in her typical way, telling stories and using her hands a lot, sometimes making motions as if she were fingering imaginary thread. It’s a weird little thing I’ve seen her do several times – I think of it as a hallucination, but that might be overstating what is really going on.

We sat in two chairs in the lobby and continued to chat. I told Mom I hadn’t seen her in awhile because I had been out of town. I tried to give her a thorough examination, checking her skin and touching her hair, looking for any bruises or bumps. She looked good. Her hair was clean. Her breath smelled pretty bad. I do worry about her teeth – I don’t know whether she is agreeable to having them brushed. She did have some food on her clothes, I assume from breakfast or a snack. Her black velour pants had flecks of crumbs in the lap area, and her blue shirt had a blob of some unrecognizable brown substance on the front. She was wearing a red fleece jacket, as well, reminding me that I need to swap out her summer clothes and replace them with her cold-weather wardrobe.

I saw the cart of trays heading to the program area, and I encouraged Mom to get up and walk with me so she could have lunch. I sat her at a table with a male resident and his wife, who sometimes comes to support group. Her husband is in his mid-60s and very advanced. Several of his brothers had Alzheimer’s, too. It is a sad story, and I think his wife has a lot of emotions percolating just under the surface. I cut Mom’s chicken and poured her milk, and put her bib on her. She used her fork properly for much of the meal. I chatted with the wife, who was feeding her husband. He just transitioned to pureed food a few weeks ago when he began having problems swallowing. Seeing that makes me wonder how Mom’s eating will change over time. For now, she’s doing great. She ate almost every bite of her chicken, mashed potatoes and carrots. She slurped at her ice cream cup. And then she ate her apple pie with her fingers. When it was clear that she was done, I took her tray away. That may have been a mistake. Mom reached for another woman’s plate then, and I told her it wasn’t hers. I moved the plate as far away as I could. But I could see Mom’s mood changing. She does not like to be corrected and apparently she doesn’t like to be told no, either. I asked her to get up with me and walk me to the lobby. She resisted but eventually got up.

We held hands and were walking toward the lobby when two aides came up to us from behind. “Can we take Bonnie with us? She’s wet,” one said. I hadn’t realized it, and I looked at Mom’s butt, and there was a big pee stain on her pants. “I didn’t realize,” I said. They knew I didn’t know. “Do you want to take a shower?” an aide said to Mom. “I don’t think so,” Mom said, in a brief moment of near lucidity. The two aides encouraged Mom to change directions and go with them, and I walked away. I could hear Mom protesting and imagined she was trying to put the brakes on any movement toward the shower room. I recalled that when we had first taken a walk, Mom was saying “peep-peep” from time to time. I wonder if she was saying she had to pee. Mom has been in disposable underwear for years now, really. But that was my first experience with her wetting herself through to her clothes. It made me a little bit sad.

Bad news, good news

I am out of town at a conference and thankfully about to head home. I got a call from the Alz center just minutes ago. Mom’s roommate passed away Sunday night. It is hitting me harder than I would have expected – possibly from the fact I am very tired. But also I feel so much for her daughter, who has been by her mom’s side virtually every day but a few since November, when she first showed signs that she might be nearing the end of her life. She held on for a long time, and so did her daughter. And she was such a dear, with probing eyes and a clear awareness, even without much language, of what was said to her.

And then there is Mom. She is doing really well, the social worker told me. And I have felt that way, too. I stopped in to see her before I left town on Friday. Sometimes a visit feels like a “must-do” task. That day, while I was caught up in the anxiety of getting ready to leave town, visiting Mom cheered me up. Her brightness improved my day immensely. I didn’t stay long at all. She was with Mr. R on a couch, and they held hands the whole time I was there. Mom talked and talked, and I told her a few things. And I hugged her and told her I’d see her in a few days.

Mom will get a new roommate, and I suspect she won’t even notice. But the social worker has a backup planned in case it doesn’t go well. And I got another piece of good news. A housekeeper at the center told me weeks ago that she had noticed that she hadn’t seen the box in Mom’s room that contained the ashes of her beloved cat, Petunia. I should have never left them there, but they had been part of her belongings for so long I hadn’t thought about it. The housekeeper found the box of ashes in one of the roommate’s drawers. Mystery solved. I will bring them home tomorrow.

I trust Mom’s roommate is at peace now, and for that I am happy. I know her daughter will miss her so much, and will now face a major life adjustment. I’m hopeful I can provide her some comfort along the way.

Digital Bonnie

I’ve been wanting to get some video of Mom so I finally tried it yesterday with my phone. I had a nice visit with her before lunch. She was in the lobby, sitting by herself on the couch. Another family member was chatting with her on her way out. This woman’s husband had just died a few days before, and there she was again, visiting with other residents. I gave her my condolences. Her husband was only 66. I don’t think I knew him. She left, and I sat with Mom for about half an hour. She was so talkative, so I just did a short recording to show how she will just keep talking, telling a story, acting out parts. She also touched her lips, which were very dry. I tried to put some lip gloss on them, but she was startled by it and backed away. When I tried again a little while later, I put some on my fingertip and touched that to her lips, and she accepted it with no problem. Interesting how that small difference made all the difference. After our chat, we walked to the program area and I sat Mom on a chair, put her bib on and got her tray. Lunch was a cheeseburger, fries and beans. Mom drank some milk and picked up her fork, which surprised me. She scooped a few beans and then stabbed her cheeseburger and ate a big piece from her fork. I cut up the rest of it to make that easier for her. While she was enjoying her lunch, I returned to work.

Here is a glimpse of Mom’s storytelling.

Lots of improvement

I guess I required a little break from blogging after the most recent posts about Mom’s pain and suffering. But I have seen Mom twice since that post, and she is doing much better. She was full of smiles on Wednesday of this past week:

She had been sleeping before I arrived, but Mom was very talkative during my visit.

I had a care conference with Alz center staff on Sept. 19. Mom has gained back some of the lost weight – 8.5 pounds in the last three months. Which I think is just fine. She is eating 75-100 percent of her meals. Some of her restlessness has abated, so she is more relaxed at meal time and willing to sit and eat. She doesn’t walk as much as she used to, either. One staff member said that Mom still can walk just fine – in the context of her recent injury, I had asked if she seemed to have any lasting effects. But this staffer said that some Alz patients lose the initiative to even stand up. I hadn’t thought of that, but I can certainly see that as an element of the disease’s progression. Mom isn’t immobile by any means. She still walks quite a bit. But she doesn’t walk obsessively anymore. And given the calluses that formed on her feet, I think this might be a good thing.

The activities director said Mom’s attention span is poor. Not necessarily a new thing, but perhaps becoming more pronounced. Mom still enjoys music and dance, but requires more extensive cues to participate in most activities. Mom’s relationship with Mr. R is also being observed a little more carefully now. The staffers in the conference and a nurse, when I ran into her a little later, told me about bruising on Mom’s hand – a result from Mr. R trying to pull on her recently. I’m not allowed to know any specifics about his care, but the staffers did want to assure me that Mom will be safe. And I appreciated that.

At the time of the conference, Mom was still on her second round of antibiotics for her eye infection. But even on that day, she was looking better. I went to see her after the conference. She was lying on a couch with her feet resting in Mr. R’s lap. Both were asleep. I didn’t stay long. I examined her hand, and there was bruising from the middle of the back of her hand all the way over to include her thumb. I imagined that Mom had let out a good yell when Mr. R did that to her. Mom stirred as I stood over and she said a few things, but I encouraged her to go back to sleep.

And then I got super busy at work and with a weekend of events with Patrick’s family plus two freelance jobs. I finally got back to see Mom on Wednesday. When I got to the center, a staffer told me Mom was asleep in a chair across the room. But Mom was awake when I got there. Her hair looked really greasy, which I found upsetting. But then I realized she was all cleaned up, and her hair was wet because it apparently had recently been washed. This was early afternoon, and I wondered if this meant Mom had gotten really messy at lunch. But a family member told me later that she thought it had just been shower time and it was Mom’s turn.

A pianist was at the center playing music, and I encouraged Mom to move over closer to the piano so we could enjoy the music. We sat next to each other, and I rested my hand on her leg. The music was classical, a previous favorite of Mom’s. Mom talked quite a bit, and was really acting out the personalities of the people that I just assumed she was describing. She pretended to cry, she pretended to get mad, all to make the story more dramatic. If only I knew what she was telling me. I found it very entertaining nonetheless, and I consistently reacted, mostly laughing. Mom’s eyes were clear and she showed no signs of pain. It was such a relief to see Mom looking so good and to just have a peaceful visit with her, listening to music. Eventually I kissed her goodbye and went back to work.