Archive for January, 2011|Monthly archive page

Two years of blogging

I missed my blogiversary. It was Jan. 14. I didn’t realize I had missed it until last Wednesday, which was Jan. 26. I was driving to support group, wondering what I might talk about, and realized that here it was, January, and that this is the month during which I started the blog two years ago. I have gone over before the reasons I started the blog. Mostly, I was a mess at that time. Really stressed out, consumed with Mom’s care and especially her financial situation, feeling very alone and upset a lot of the time. And I thought maybe, just maybe, others in similar circumstances could benefit from a no-nonsense report about the disease. Blogging has definitely been a therapeutic activity. Not just the act of writing about Mom and my emotions about her, but because it has really helped me redirect my thinking about this part of Mom’s life and my life.

I felt so sorry for myself in the many months leading up to and after Mom’s Alzheimer’s diagnosis. I was concerned for Mom, but I could see plainly that I was going to be stuck looking after her. That is how I thought about it. But over time, and especially while reflecting about Mom in this blog, I have come to actually value this experience, or at least to stop hating it and thinking about myself so much of the time. I have learned a lot about what might be going on in the Alzheimer’s mind, and have had the chance to consider the hell that Mom must have been going through in the early months and years of her illness. How frightening it must have been, and how deftly she really handled it, all things considered. So much sucks about it all, no doubt about it. But I try not to dwell so much on that, and instead try to be a cheerful and comforting presence in Mom’s life. And at this point, that is what she is in my life.

All that said, I had a somewhat disappointing visit with Mom today. I found her sitting with Mr. R on a couch in the program area. I approached the couch and said hello, and she greeted me, but not with any particular enthusiasm. I pulled up a chair to face her and plopped down. She spoke off and on, but in her typical nonsense fashion. She had one sock on, and I noticed that her bare foot looked a little crusty, like she has probably developed a fungal condition. I asked her how she’s been feeling, and even that didn’t yield a normal answer. The last time I saw her, her lips had been very chapped. They looked better today. I asked her if her lips feel OK. She didn’t seem to understand. I pointed to my mouth and asked her if her lips hurt. She really didn’t understand. And then she asked me, out of the blue, where my house is. I told her it’s about three miles away, not too far. And she nodded, but I suspect the answer wasn’t meaningful – does she have any idea what a mile is?

Mr. R ignored me. He rubbed the skin on his arms over and over, and studied his hands. I think his skin is irritatingly dry. But he wasn’t scratching; he was rubbing. He rubbed his fingers. Just once or twice, he rubbed his legs. He also removed his upper teeth at one point. “Do you need more room?” Mom asked him. His rubbing was making a lot of noise, and his arm was bumping into her. He didn’t respond.

Across the room, residents were watching a movie on DVD. We could hear the music from the movie. At one point, people in the movie were singing “Amazing Grace.” I asked Mom if she could hear the music, and I sang a few lines of the song. She didn’t seem to understand the question, or at least she couldn’t produce a meaningful response. One thing Dr. Liss, who runs support group, tells us is that Alzheimer’s is primarily a failure of retrieval. So I guess Mom occasionally can make sense, like asking me where my house is, but can’t always find the words to form a proper response to a question I have asked. The good thing is, she doesn’t seem frustrated by this. And I trust she has no idea that that is what her main limitation is – because can you imagine, having all that information still in there but being unable to access it, and being aware of that? She sat as peacefully and contentedly as always, with her hand on Mr. R’s leg much of the time.

After about half an hour, I decided it was time to go. I asked Mom if I could hug her goodbye, and she said yes. She then said, “Maybe you should come back sometime and we can play.” And I said, “Yes, playing is always a good idea.” She said, “Monday, then.” And I said, “OK, I’ll see you then.” I enjoyed this little exchange. On the way out, I paused to talk to a resident and her daughter – this resident was a good friend of Mom’s in assisted living, and she just moved to the Alz center a few weeks ago. The daughter told me that her mother recognized my mom, but Mom, not surprisingly, doesn’t recognize her. While we were talking, Mom and Mr. R walked by. Several minutes later, I headed down the hall toward the lobby. Mom and Mr. R had turned around and were approaching me. Mom did not make eye contact or look in my direction. Mr. R waved at me.

I decided Mom didn’t really recognize me today. That left me feeling bummed, but I know enough about the ups and downs with this disease that I am aware that her lack of recognition of me today isn’t necessarily a permanent thing. So I’ll just see what happens next time.

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Broken hearts all around

Tonight’s support group was a tough one. There was a pretty good turnout, a few regulars and lots of new people. And there were lots of tears. I have often said I feel lucky as far as Alzheimer’s caregiving goes. Mom was never outrageously combative. She never got mean. We had rough times, sure, but she handled much of the transition associated with the disease – the loss of driving, a move to assisted living, a move to a nursing home – generally pretty well. Especially compared to some of the stories I hear. And the early days are the hardest in so many ways. Of course, it totally sucks and hurts to see Mom decline and observe her as a shell of her former self in her current condition. But all the things that the patient and the caregiver have to figure out in the early days of the disease are upsetting and exhausting, sometimes frightening, and always new and therefore uncharted territory. So my opinion is the early stages are the hardest for everyone involved. At this point, I feel lucky still, with a mom who is content, safe and so loving and affectionate.

Most others who were at support group tonight, I think it’s safe to say, are not feeling lucky.

A man and his daughter came to recall their wife and mother, respectively, on what would have been her 80th birthday. She died almost a year ago. Her husband still comes to most support group meetings. He lived and breathed her disease for 17 years, keeping her with him at home for 14 of those years before his own health forced him to move her to the Alz center. “I get emotional,” he always says when he tears up. Of course he does. They were married for 62 years.

A woman talked about how she feels like half of herself is missing now that her husband has moved to the Alz center. She put it off for a long time but knows it was right for him and best for her, too, to move him in August. He has adjusted well, but sometimes he is mean. She also is still mourning the fairly recent loss of one of her sons, as well as her best friend’s son, who died at age 36.

A brother and sister have a mother with vascular dementia. She is living at home with her husband. These adult children both wept talking about their mother’s confusion and anxiety, their dad’s attempt to adjust to taking care of his ill wife, and their realization that their mom’s health problems are a wake-up call about mortality in general. A bright spot: the mother’s illness has really pulled the family – mom, dad and three children, all local – closer together.

A man talked about how his mom, living at home with her husband, repeatedly says she wants to go home. His solution: He lets her gather up her belongings, sometimes even the dog, and they load up in the car and go for a drive. Fifteen, 20 or 30 minutes later, he circles back to the house and announces that they are home. This strategy has worked numerous times. But every time he does it, he fears that this will be the time it doesn’t work. And then what will he do? His father described how his wife doesn’t recognize his older self, and that she will tell him she is waiting for her husband, and where is he, anyway? “It’s like a knife in my heart,” he said.

A woman really struggling with moving her mom to the Alz center has cried every time she attends the meetings. Her mom often talks about wanting to go home. She is fairly high functioning, but can’t safely live in a home setting. This daughter is just consumed with guilt and sadness. She is very close to her mother.

We often have Ohio State nursing students observe our meetings. This time, one student cried throughout the meeting while listening to our stories. I have never seen that happen before. I asked her at the end of the meeting if she has a relative with Alzheimer’s. No, she said, “It’s all just so sad.”

Yes, it is. It really is.

All to myself

I visited Mom on MLK Day, a day off for me. Last year, I had visited on this same day and found a lot of college volunteers doing community service by visiting dementia patients. I was impressed by those students and thanked them personally. I waited until later in the day this time, hoping to miss the volunteers. I thought that would increase my chances of having alone time with Mom. If I have to share her with Mr. R, I at least wanted to avoid sharing her with volunteers, as well. That is my selfish way of thinking about visits these days.

I walked into the lobby and there Mom was, by herself, walking toward me. I went right up to her and gave her a big hug and told her I was so glad to see her. And I was so glad she was alone. I signed in and took off my coat, and she took my hand and we started walking. We went toward the skilled care wing, stopped at the nursing station there and turned around. We went back to the lobby, and Mom complained about being tired. We sat on a couch and just sprawled out and hung out there for awhile. I noticed her fingernails were quite long and ragged, so I trimmed them. I offered to pluck the whiskers from her chin. She didn’t know what I was saying I was going to do. So I pulled one, and she winced. I pulled another, and she jumped. So I stopped. No need to cause her any pain at all. So her chin will be hairy forever more.

An aide walked by and Mom said to him, “I’m hungry.” He briefly acknowledged her and said he would be back. I offered to get a root beer to share and she liked the idea, even though I don’t think she knows what root beer is. I got a can from the vending machine. As I got back to the couch, the aide stopped by and handed Mom a baggie with two cookies in it. Ah-ha – it was snack time, and Mom knew it. Funny how she hardly knows a damn thing but she knows when she sees this aide in the afternoon, it’s snack time. She ate the cookies with some enthusiasm. In the past, she might have offered me a bite. She didn’t this time. Which was completely fine, of course. I didn’t want a bite. But it’s interesting how her focus has changed in that way, to herself. I sipped the root beer. When she was done with her cookies, I offered her a drink. She examined the can and tentatively held it close to her mouth. I told her to point the hole toward her mouth and tip it. She was able to follow that instruction. She took long drinks. “Mm, that’s good,” she said. She mostly drinks water and milk these days, so I imagine a cold, sweet drink was very tasty. She took one last drink and spilled a little on her shirt. She laughed.

She seemed ready to walk again, so we took a trip toward the program area. We ran into Mr. R there, sitting alone in a chair. I pulled up a chair so Mom could sit near him, assuming that’s what she would want to do. She leaned over and talked to him, very close to his face. Then an interesting thing happened. A woman in the same lounge area was sitting on a couch – she was sitting on a low spot where a cushion was missing. That cushion was lying on the floor. She stood up and said, “These are mine, I’ll take them.” She started trying to collect the other two cushions to carry them away. Mr. R went over to her to help her – though he was trying to put them back onto the couch. Mom started walking away, and I followed. I liked this turn of events.

We went through the lobby and over to the skilled area again. I noticed whenever we transitioned from carpet to wood floors and back again, Mom would lift her foot very high as if to step over a barrier. She also said, “These shoes aren’t very good.” She was wearing only socks. I think her feet must ache from all the walking she does. In the skilled area, we passed a room in which a resident was sitting in a wheelchair. I recognized him from earlier days, when he spent time in the program area. “I want a cigarette so fucking bad I can’t see straight!” he shouted after we passed. Mom popped her head into a room and said hello to a woman sitting alone. Then we headed back to the lobby. I needed to get going to stay on schedule, to cook dinner and then get to a class at my gym. It is so uncommon for me to stay longer than expected at the Alz center. I suggested to Mom that she might like sitting on the couch to watch a Lucille Ball DVD with other residents gathered in the lobby. But she got a little confused when I tried to say goodbye. I hugged her and pointed her toward the couch and slipped away. I looked back and saw her standing next to the couch. I imagine she was momentarily confused, but that it passed quickly. But it still gave me a pang to think she might be aware that I was gone.

‘Who’s that girl?’

I visited Mom a few days ago. I had gone to the doctor and ended up with a prescription for antibiotics after all. My doctor’s office is pretty close to the Alz center, so it was very convenient to stop in for a visit. And though I was still sick, my symptoms were under control and I didn’t think I’d be too contagious to stop in. I looked around the program area. Several residents were watching a movie in a darkened corner of the room. I looked around, specifically checking all the couches, and couldn’t locate Mom. An aide started walking with me back toward the lobby, thinking Mom might be on the other side. As I crossed the lobby, I spotted Mom and Mr. R coming in from the other side. When she saw me, she approached me and hugged me, and put her hands on both sides of my face and said, “Oh, I love you so much.” You have no idea, really, how unusual that still is, for Mom to be so expressive and loving and affectionate.

She took my hand, and the three of us walked toward the program area. We selected a couch, and Mom and Mr. R sat down. I pulled up a chair to sit across from them. I told Mom I had been sick so I hadn’t visited for awhile. I asked her how she was, if she was sleeping OK, if she had any aches or pains. She didn’t respond in any meaningful way. But she was content, sitting with her arms crossed on the couch. Mr. R talked to me a little bit, telling me about a house in the distance somewhere. I just nodded and agreed with him. I wasn’t sure if he was remembering a childhood home, or his most recent home before he entered the Alz center. It’s really hard to say. But he was engaging in more conversation with me than he ever had.

We all got quiet. I was tired. Mom looked tired. She looked thinner than she has looked in months. Her face was so interesting to me, just completely at peace. The Bonnie face of five or more years ago often had a knitted brow, an unsettled look. Something was often bothering her. She lived an anxious life. I described it tonight in support group as an odd gift of the disease – that she is now completely without worry. There is nothing to worry about, after all. I took a picture of her.

We probably sat there for about 20 minutes. I announced that it was time to go, that I had to pick up some medicine. I stood up and put on my coat, and I went and stood over Mom and said, “Can I hug you?” And she looked startled and looked up at me and said, “Who’s that girl?” I said, “It’s just me,” and we both laughed a little, even though that question broke my heart a little. I said I wanted to hug her goodbye, and she let me, and I kissed her cheek.

That is the second time that Mom has forgotten I was there while I was actually there. It was partly my fault this time, for sure, because I just sat quietly for part of the time, feeling too exhausted to try to engage in a meaningless conversation. I don’t mean to imply that it’s ever her fault. But I wonder if there are things I should be doing to prevent it. At support group, I wondered out loud if I should try to be touching her while I’m visiting – if I should sit and hold her hand. Or if I should visit when I know there will be music, so we can dance. Or if maybe next time neither of us will be as tired, so it will be just fine. Or if I am just thinking too much about it all. I admitted I am feeling a little selfish – that Mom forgetting me while I’m right there significantly decreases my interest in visiting. And I already have enough guilt about the fact I don’t really visit particularly often. It’s as if I’m trying to decide how it’s going to be from here on out, like we’ve turned a corner. And I know better than that – there is no way to know with this disease how it’s going to be from one day, one minute, to the next.

Care conference, with Jeff

I guess it’s clear by now I have taken a little break from blogging. That coincides with a little break from seeing Mom. But that is mostly because I have been sick since the Monday after Christmas – the day we returned from a visit with Patrick’s family in Michigan. I had wanted to take our dog Bambino to the Alz center to see Mom during the holiday week, which I took off. But each day my minor cold symptoms got a little worse, and by Thursday I was thinking I probably had an infection that would require antibiotics. I’m thinking now, five days later, that I am going to clear up without those drugs. So that is helpful. I hope to see Mom tomorrow night before support group.

But almost two weeks ago, it was time for a quarterly care conference, and my brother Jeff was in town so he came along. We met with the staff members in charge of dietary, activities and social work, as well as a nurse. Mom has lost a few pounds – if memory serves, I think she is down about seven pounds since the previous care conference. She eats pretty well – sometimes it’s hard to keep her on the task of eating. She uses utensils off and on, so my concern that she had permanently turned to eating with her fingers was premature. Not that I am concerned about appearances. I just want her to maintain the eating function on her own for as long as possible. She is social and friendly and affectionate. She had drifted away from Mr. R a bit, but now seems to be very absorbed with him again. Sometimes when she can’t find him, she walks around, and staff members think she might be looking for him. She does a lot of walking in general. Her words seem to be fairly stable – the social worker said that when Mom was described as talking in “word salad,” she might have been sick or something, because her conversation has improved a little bit. She is down to just the basics for medicine: her thyroid replacement meds, one antidepressant, and vitamins and calcium. No more antipsychotic. And she’s doing just fine. I’m so glad, as I have said before, that her “default” setting is to be so content and at peace.

After the care conference, Jeff and I visited Mom briefly. She was sitting with Mr. R on a couch. Jeff and I pulled up chairs to be close to them. Jeff was to Mom’s side, and she turned her head and just looked at him – studied his face a bit. I sensed that she might be recalling something about him that she recognized. She was interested in him. Jeff had visited her the day before alone, and she had held his hand and led him around on a walk. I thought that also was a sign that she trusted him and felt familiarity of some kind. She doesn’t know he is her child or that she was ever a mother. But something good seemed to be happening. Apparently she talks about me when I’m not around – she says my name and that I am coming sometime soon. I was interested to hear that, because when I’m there, she also talks about me in the third person. I didn’t know she could still think of me in the abstract when I’m not around. Of course, I like the idea of being on her mind, whatever that might mean.

Jeff also accompanied me to support group that same night. It was a very small group, and we got off to an unusual start, talking about some political issues that typically are left at the door. But we moved on to discuss our loved ones. One fellow who has started to attend is struggling with his wife’s unhappiness in the center. He knows it is the right place for her and for him, but he asks for advice. We all try to offer something, but I sense he feels a little hopeless that anything will convince her that everything is going to be OK. She hasn’t been there long, so I’m hoping that as the weeks pass, she will start to feel more comfortable. She is blind, and isn’t likely to initiate social contact. She had friends in a previous center. I think that means she will find her friends at this center, too, with some help.

I did not see Mom on Christmas day. I gave her no gifts, and neither did my sister or brother, on my advice. I thought about her on the drive up to Michigan and I talked about her to my in-laws. I did not really feel guilty about not seeing her. As a nurse once told me, every day is Christmas day at the Alz center.