Archive for February, 2010|Monthly archive page

Sexy time

A nurse called me at work in the middle of the day earlier this week. Usually, these calls are quick, telling me about paperwork, or getting my verbal approval for something. But she said, “Do you have a minute to talk?” I jumped up from my seat and started walking toward a more private area of my building, all the while telling her that yes, I had time. She immediately told me everything is fine, Mom is OK. It’s not an emergency. They are good at doing that. But there is an issue about Mom that she thought we should discuss.

Apparently, Mom has become what the nurse called sexually disinhibited. Where she was flirtatious and affectionate before, she now, at least with one gentleman in the facility, is overtly sexual, some of the time. As in, she takes his hand and puts it under her shirt, or into her pants. This is the same man who planted a big kiss on Mom recently, which I wrote about. I will call him Mr. R.

The nurse was very clear that the facility does not consider this a problem, exactly. It is fairly common and something they have seen many times before. But often, families don’t like it. Especially spouses, of course. Well, in this case, Mom is long divorced and Mr. R is a widow. So that’s one hurdle cleared. In this case, though, there are apparently a few women interested in Mr. R. One is tiny, as in quite short, and the other is very skinny. Mom is neither. So if the women were to become aggressive with each other, there is a chance for injury, most likely for one of the other women. So far, that has not happened. We talked a bit about the dynamics of the situation, about how Mr. R’s son has been informed and seems to think this is not a big deal. Apparently, his dad had some lady friends after his wife died. My mom had boyfriends, to be sure. I was aware that she had a sexual life when I was young, but I haven’t thought about her in that way in a long time. It is sort of weird, but it is not upsetting, as it is for some family members of Alzheimer’s patients.

I finally asked what happens if intercourse occurs. It had to be asked. The nurse said that at that point, Mr. R’s son and I would probably need to meet with staff. With people with this kind of mental disability, there is concern on the part of regulating agencies that no one is being abused. I get that. Apparently regulations are tighter than they used to be. So that kind of family meeting could be in my future. Though when I brought this up at support group the other night, the doctor running the group noted: “They are both old people. If the time comes that they want to consummate the relationship, they simply might not be able to do it.”

Also in support group, the granddaughter of one of the residents told me that she saw my mom with Mr. R recently, and they were sitting on a couch caressing each other, touching faces, things like that. She thought it was sweet. Another group member knew who Mom was, and said she is really friendly and social, even coming up to strangers and saying, “I am listening in on your conversation.”

The doctor chimed in that he sees this more sexually oriented behavior that she is engaging in as a phase, but also that it is a quality of life issue, and there is no reason to be alarmed by it. If residents are lonely, and want companionship, what harm is there in that? he said. I completely agree. I was just concerned that it might be weird, because the place is so open, so everyone sees just about everything. But the staff members are used to it, and the families who have said anything to me so far have not made a big deal of it.

Today was my first visit with Mom since I heard this news. I found her in the program area, sitting in an activity circle. The activities director pointed to me, and Mom got up and came over to me and gave me a big hug. We started walking down the hall and she pulled me toward her again for another hug. We sat in the lobby briefly, and she seemed just a little antsy, so I said we could take another walk. As we headed toward the hallway, she spotted a man coming out of the dining room, trotted playfully up to him and hugged him. He hugged her back. She walked toward me. “She seems happy,” he said to me. No big deal. In the program area, she spotted Mr. R, who was sitting on a distant couch with his tiny woman friend. She said, “There’s my boyfriend.” She started walking toward him, and I followed her. She sat in a chair next to the couch. The lady friend was sleeping. Mr. R didn’t say anything. I pulled a chair next to Mom and said hi to Mr. R. We didn’t stay long. Mom got up and said we could keep walking. She went over to him and said, “You be a good boy.” He said, “I’ll be right here.” No muss, no fuss. No fondling. I was relieved.

I eventually got Mom situated at a table for lunch. I think she was tired today – she seemed just slightly disoriented. Still in a good mood, though. Her hair was greasy – the first time she has looked like that in quite awhile. When lunch arrived, she dug in with enthusiasm. The menu included salmon patties – once a favorite of hers at MCL Cafeteria, even though she didn’t like any other fish. “I like this,” she said. With her busy eating, I got my coat and left.

On the way out, I ran into the son of a resident. He knows Mom. He knows many residents. He said he has seen Mom get “kissy-face” with Mr. R but nothing more than that. I told him, remembering that Mom once engaged in a short little dance while holding his hands, that I hoped she hadn’t made any gestures toward him that made him uncomfortable. “Oh, no, nothing like that,” he said. He said Mr. R is always a gentleman. And that he hasn’t seen any conflict between the women in Mr. R’s “harem,” as he called it. This man himself joked that he has several girlfriends among the residents. He had called Mr. R a lucky man. I said, “I guess you are a lucky man, too.” He got a chuckle out of that.

Song and sympathy

During my last visit with Mom, on Thursday of last week, she got a song stuck in her head. Interesting that that can happen to someone with almost zero short-term memory. We were sitting in the lobby, where there is always a radio playing quietly on top of a decorative chest against a wall. The song “King of the Road” came on. You know, it’s that song with the line: “I ain’t got no cigarettes.” That is the only line I know, besides “King of the Road.” Mom started humming along with it, and sang the words “King of the Road.” And a little later, as we walked down the hall back toward the program area, she started humming the tune again, and we both sang together, “King of the Road.”

On this day, I arrived after lunch, taking advantage of being in the neighborhood after I got a haircut. I couldn’t find Mom in the program area or her room. An aide said she had last been in the lobby. I went back to the lobby but she wasn’t there. I went over to the skilled nursing area, and there Mom was, sitting in a chair against the wall, just hanging out. Picking her chin. When she saw me, she stood up and reached out to hug me. I sat down next to her briefly and then we decided to take a walk. We got as far as the lobby before she was ready to sit.

During our visit on the lobby couch, the medical director of the center came out of a back room. He came right over to say hello to me and to tell me that the wife of our most regular of regular support-group members had died two days earlier. Her whole family (six children) had been to support group the night before, a session I missed because I had a massage scheduled. Usually, he attended with only his oldest daughter. The doctor said the husband was doing as well as could be expected. That despite his occasional emotional discussions of his wife during meetings, he had been stoic when talking about his wife after her death, and held up well during the meeting. I was stunned to hear the news in some respects, though I had known since Mom moved in that this particular resident’s disease was very advanced. I didn’t ask for any details of her final days and how it happened. But I was full of sadness for her husband, who has been wholly devoted to his wife for the entirety of their marriage – 62 years – and who still visited her every day during the close to three years she spent at the Alz center. Often, her daughter was very matter-of-fact in discussing her mother’s illness at support group, but I’ll never forget a meeting back in the fall, when she started to talk during the group meeting and just stopped and said, “I miss my mother.” And quietly cried.

Mom sat next to me while the doctor told me this news and we briefly discussed the funeral arrangements. I said I wouldn’t be able to go to visiting hours because I had a weekend business trip so I would send a card. When we were finished talking, Mom gave the doctor a cheeky grin and the doctor shook her hand after shaking mine. Mom had no clue what we had been talking about. Which was the way we both wanted it. I also decided not to tell Mom I would be going out of town. I used to always tell her when I’d be away, for some reason. I didn’t see any point in telling her this time just in case it made her anxious, and mostly because she wouldn’t remember anyway. And for the first time, while traveling, I didn’t even think about buying her a little giftie from the trip. I used to try to do that – bring chocolates, or a new pen, or a little stuffed animal. It’s funny to think about it now, because I tend to tell friends and family that Mom doesn’t need any gifts when they ask me what she might want. And yet, I felt that same compulsion at times to bring her something, as if it would show to her that I thought of her while I was away. To be honest, on this trip, I didn’t dwell on her much at all. Admitting that is one of those things that can make a daughter feel guilty. But I also think I am due this relief of worry – because I have worried a lot about her, and I know now that she is in excellent hands.

Mom, my Valentine

The Alz center hosted a Valentine’s Day lunch today for families to attend. This wasn’t nearly as popular as the Thanksgiving and Christmas events, which I guess is no surprise. At Thanksgiving, the staff filled up plates for residents and families based on our requests and served them to us. At Christmas, we went through a buffet line for snacks, cookies and punch. Today, I got a tray off of a cart. Just like Mom does for every meal.

For once, I was early. When I arrived, Mom was sitting in a circle in the program area, listening to music. She was wearing pink pants, a pink, red and white striped T-shirt and her pink Crocs. She looked very Valentine-y. I sat next to her and we started clapping our hands to the music. She eventually reached over to hug me, saying she was so glad to see me. And then she reported that she had to pee.

We made our usual trip to her room so she could use the bathroom. She didn’t need any help from me. I checked out her room, and everything looked like it was in good order. We went back to the program area and were encouraged by a staff member to find our seats at a table for lunch. For awhile, I was cozied up to Mom as the fifth person at a square table. But when another resident’s son and daughter-in-law arrived, they all moved to a different table and I took a regular spot. We were sitting with two residents I know fairly well by now. Staff put out red tablecloths and small bouquets of artificial flowers. Mom admired the flowers. I took a picture of her.

Mom, with combed hair and lipstick. And flowers. She is scheduled to get a haircut soon.

Our trays arrived. We were having chicken parmesan with spaghetti, broccoli on the side, a salad and a piece of cake. And water and milk, the regular drinks for all the residents. The more advanced patients, or those with no teeth, eat their food pureed. One woman at our table had pureed food. Today, she emptied a packet of sugar onto her pureed spaghetti. She also didn’t eat much, but instead seemed inspired to do a lot of talking during lunch. Most of what she said didn’t seem to make much sense. I detected a little ornery streak in her. She was sort of like a kid during a meal, looking for attention rather than eating. The three of us at the table didn’t pay all that much attention to her, but I would occasionally try to respond to something she said. While we ate, a staff member brought Valentine cards around to each resident. Another staff member brought a pink carnation to the table – for me.

When we were done with lunch, Mom seemed a little antsy. She said, “We might as well go now.” I proposed that we take a walk. In the hallway, with lots of windows, she got cold, so we went back to her room and I found a red fleece jacket for her to wear. We walked down the hall and a staff member walked by and said “Hi, Bonnie.” Mom replied, “How ya doing, kid?” That struck me as very funny. I don’t think I’ve ever heard Mom address someone that way. While we were walking down the hall, Mom reached out to me for a hug. She is so affectionate lately. When we got to the lobby, a man sitting in a chair, someone visiting his mother, said, “Hey, Bonnie,” and reached out and grabbed her hands. They did a few little dance moves together. Mom greeted the rest of the family, and I introduced myself. Mom put her arm around me and said, “This is my best person.” We sat on the couch for a little while. I looked at my watch, and Mom said, “I know you’ve probably got to get going somewhere.” I was surprised at her awareness. She was actually in really good shape today. She recently went through some speech therapy, and I wonder if it has helped her. Or if the lowered drug doses are clearing her mind or something. She didn’t do a whole lot of talking, but she did a better job at conversing than she has in awhile.

“Do you come here often?” she asked me at one point. I said I would like to come more often, and that I hope to make more trips to see her once the weather is a little better. “I like it when you’re here,” she said. I had an appointment at 1 p.m. to meet with the student researcher about the project assessing Mom’s comprehension of pictures of our family. So I walked Mom back to the program area, where I encouraged her to stay and wait for ice cream while I left to return to work. This was when she showed some confusion, standing up and sitting down a number of times, not wanting me to leave but absolutely willing to wait for ice cream. I finally got her planted in her chair and walked away sort of quickly without looking back. I imagine she soon forgot I had been there and turned her attention to her ice cream. Even if she forgets, I know she’ll be glad to see me again the next time.

Support group tidbits

At my last support group meeting, I was struck by some of the new stories I heard. And I was so pleased for one regular attendee, whose three out-of-town daughters sent surprise cake and flowers to our meeting in observance of their parents’ 60th wedding anniversary. Knowing how much she does for her husband with Alzheimer’s, who is at home with her, I was glad to see that her kids were giving her that support.

One newcomer to the group cried for about 45 minutes straight, before it was her turn to talk. I didn’t know exactly what was going on with her until she finally told her story. Her niece had been living with her mother for two years, but was moving to Florida. This woman’s father and two siblings had recently died. She is the only child left, and her mother has become too much to handle. Her mother is combative, bites and kicks and spits out her pills. So this woman was moving her mother into the Alz center in the next few days. And she was just devastated with guilt. She had promised her mom she would never put her in a home. Her mom is 99 years old. Many of us tried to assure her that she wasn’t doing anything wrong. Some said there is always guilt about placing a loved one in a nursing home, and that guilt never goes away. And you know, I piped up about that. “I do not feel guilty,” I said. “I am just going to go ahead and say that.” I have felt guilty in the past. I feel guilty sometimes when I let a lot of time pass between visits. But I don’t feel guilty about where Mom is currently living. “I did the best I could,” I said. “And my mom is happier now than she has been in a long time.” I said I didn’t want to give her false hope, but I thought there was a chance her own mother could thrive in the Alz center environment, too. “That makes me feel better,” she said. I just couldn’t help but say that out loud, especially in that setting – I don’t think we caregivers who try as hard as we can to look after our loved ones should be expected to add guilt to all the other emotions we already feel about what we and our relatives are going through.

Another newcomer told of her mother, living in Miami, who is behaving badly in the memory unit of an assisted living facility. The behavior was uncharacteristic and she wasn’t sure what she should try to do, so she was looking for advice. The doctor who runs support group almost always advises families to contact the Alzheimer’s Association, which has lots of information and offers resources. Apparently staff from the association will do in-home assessments to help caregivers “patient-proof” their homes. He asked this woman if she might be visiting her mom in Miami anytime soon, or if she had siblings who could. This woman is an only child and it’s hard for her to travel because – get this – her husband has Parkinson’s disease and isn’t doing very well and she herself was going through breast cancer treatment. There was an audible “oh, no” murmur in the room, meant to be a show of support for this unfairly burdened person in our midst. She had a remarkable attitude.

Another woman who seems to be on the road to becoming a regular recounted how she and her sister share 24-hour-per-day care for their mother by breaking up the week. She keeps a stiff upper lip as she talks about how difficult this schedule is, and about how she and her sister differ on what might be best for their mom. After she spoke, her friend took a quick turn to just say that this woman was her best friend, and she is hurting. At this point, the caregiver started to cry. Her friend said, “I’m a nobody, just here visiting and supporting my friend.” And I said, “You are somebody.” I think we were all moved by her devotion to her friend.

Finally, there were flowers and cake for one of our most regular of regulars, who was going to be celebrating her 60th wedding anniversary the next day. She had tried to talk to her husband about how long 60 years is – she flashed her 10 fingers six times to demonstrate how she tried to convey it to him. He didn’t really get it. He goes to day care several times a week, which I think has become more and more important for her. She got a massage recently – also a gift from her children. She never complains. Never. She even said, “I’ve had my fun. This is my time to take care of him.” But it has been about three years now since his diagnosis, and I imagine she is very tired, and frustrated. She talks about how hard it is to fill the time. How her husband seems very sad about what is happening to him. But she never talks about how sad I imagine she must be. At the meeting’s end, she shared her cake with us. It was so kind of her, and it was nice to be able to wish her well and congratulate her on her very long marriage.

Support group surprise: 60th anniversary flowers and cake.

Lower doses

My cell phone rang at about 6 p.m. The Alz center was calling. A call during the day could be about anything – financial business, an event notice, a question. But getting a call in the evening made me nervous. It seemed to me that it had to be bad news about Mom’s health or behavior.

It was Ben calling. Someone I don’t know. Possibly a nurse, maybe an aide.

He reported that the doctor had visited today and decided to lower Mom’s anti-psychotic medication. He’s cutting the dose in half. After seven days, if Mom does well, it will be lowered a little bit more. This decision was made because Mom has been very pleasant. “Is Mom OK right now?” I said. “Oh, yes,” he said. “So, you’re just letting me know about this?” I asked. Yep, that was it. He was just letting me know.

I believe I also wrote here that Mom is off generic Wellbutrin, a second antidepressant that she started taking around the time she was getting sick, but before any of us knew it. Mom briefly saw a psychiatrist at that time, but I don’t think it went well. He prescribed the Wellbutrin, but Mom always talked about him in an unflattering way, as if she had deep suspicion about him. I’m sure now that that was the disease talking. But I didn’t know it at the time and I really didn’t investigate. I thought she knew what she was doing. Poor Mom. She probably felt so scared at that time.

But now she is doing great. And can go off of another medication. And the doctor considers her pleasant. Which she is. I like this news.