Archive for December, 2009|Monthly archive page
My brother Jeff and I visited Mom at the Alz center today to give her her Christmas presents. I was sort of fretful about how to plan Christmas with Mom, and assumed I had to do so before the actual Christmas day. And then Jeff suggested in a comment on a previous post that we could do Christmas while he was visiting, after Christmas – the most appropriate idea. So we had Christmas Monday with her today.
It was Jeff’s first chance to see Mom’s new nursing home. We met in the parking lot so I could show him how to get in – there are security steps to take on the way into the building and on the way out. We walked back to the program area and found Mom sitting at a table with two women who I believe are friends of hers – they tend to sit together, anyhow. I told them we were going to whisk Mom away from that table and take her to one of the lounge areas to give her some presents. We stacked the gifts beside Mom’s chair and handed her things to open one at a time. She opened a pillow from my sister Laura, which has an image of Starry Night by Van Gogh on one side. Also from Laura, a Bob Evans gift card. From Jeff, fuzzy blue pajamas and matching socks. From me, a lipstick and two pairs of pants. I don’t think she knew why she was getting gifts, but she seemed to enjoy it.
Jeff and I had planned to take Mom to lunch at Bob Evans. But we arrived a little later than we planned because our icy windshields had to be scraped. And I had failed to call ahead to tell the kitchen Mom wouldn’t be there for lunch. So we agreed to skip the lunch. We took Mom’s items to her room. Jeff folded her pajamas and put them in the top of her closet, and I hung up her new pants. I put her lipstick and socks in a drawer and the pillow on her bed. I’m just now remembering I forgot to put her name on her new clothes, but I did remember to write it on the pillow. Her closet is in some disarray, still, with clothes on the floor or shoved onto the shelf. And the buffet functioning as a dresser continues to fall apart a little bit, as does the new little chest of drawers Patrick and I got to replace it. This is frustrating. I have left the frame of the buffet there to provide a surface to hold pictures and stuffed animals. But I obviously need to take the second drawer out of there and ask Patrick to see if he can repair the other drawers.
I feel a little embarrassed about this at the moment, because an old college friend of Mom’s visited her yesterday. Perhaps he thought her room was a little disappointing, if he saw it – Mom doesn’t know where it is but he might have located it based on her photo outside the door. He was in town for an annual party hosted by another old friend of Mom’s. Patrick, Mom and I were invited to the party, but I had declined – it was early evening on the same day we were arriving home from Michigan, where we spent a few days celebrating Christmas with Patrick’s family. I knew Jeff would be here, as well as my youngest sister Elizabeth, and it just seemed like too much to manage to get to the party. I told both friends in their Christmas cards this year that I wasn’t sure it was a terrific idea to take Mom to the party anyhow – that she can get confused in unfamiliar settings and may or may not relate well to the old friends who now, inevitably, are strangers. Her friend from Cleveland ended up taking her to the party. I asked Mom about it today and she had no recollection of it. There were a few items in her room that suggested she had come home from the party with a couple of gifts: a Carl Jung action figure and a book full of pictures of Matisse art. Great gifts for the old Bonnie, but, sadly, the humor of the Jung action figure and the beauty of Matisse are completely lost on her now. As for what the friend might have thought of Mom’s room: I’m just going to have to let that go, I guess.
Jeff and I got Mom situated for lunch and, as usual, we left when her food arrived and she had started eating. When I saw her plate, I wished we were taking her out because the lunch foods were not among her favorites: ham loaf and turnip greens. I was able to fill out a list of foods she doesn’t like, but I don’t recall the turnip greens as an option. I’m pretty sure I would have said she didn’t like them. She took a bite and said she didn’t like them. I cut up her ham but left before I saw whether she ate it. I showed Jeff around the rest of the place, and we greeted a family in the lobby that I know from the support group. We left the lobby to look at the other side of the building and when we returned, there was Mom, sitting on a lobby couch. She had escaped from lunch because she didn’t like the foods. I bought her a bag of potato chips and we sat there and shared them in the lobby. And then I took Mom back to the program area and asked her if she might like to take a nap. She pointed to a couch and I set her up there, using her purse (with dog/cat inside) as a pillow. She seemed perfectly satisfied. I kissed her goodbye and told her I’d be back tomorrow.
I met last Wednesday with a nurse, the social worker and the chief dietitian at the Alz center for my second care conference about Mom. These will be quarterly for as long as Mom lives there, as I understand it. I just appreciate the chance to hear reports about Mom from people who see her every day. And I also see it as yet another brief therapeutic activity – a chance to bounce some thoughts off of staff to see if my head is in the right place about what I think and feel concerning Mom.
The activities director couldn’t be there, but she left behind a report saying that Mom participates quite a bit in activities and can self-initiate during the activities rather than requiring coaching from staff the whole time. In fact, she can still get a little grumpy when someone tells her what to do. The dietitian reported that Mom has gained about five pounds in the last quarter. Mom has a great appetite and typically finishes her meals. Sometimes, she plays a little with her food. She sometimes can cut meat herself, but sometimes asks for help. I told the staff members that I always cut her meat if I am there when her food arrives. And I wondered if that would somehow lead to more helplessness on Mom’s part. But that’s not really how Alzheimer’s works, necessarily. She won’t remember that I cut her meat recently. So if she needs help some days but not others, that is just part of the disease process.
The nurse said Mom seems to be a patient whose disease fluctuates. She has good days and bad – not so much in terms of mood, but in how much she is impaired by the illness. Her mood generally is good. In fact, the medical staff weaned Mom off of Wellbutrin, one of two antidepressants she was taking. She had been taking that mood cocktail for at least five years. The nurse said Mom had no ill effects from the gradual omission of the drug. I was pleased to hear this. I told them that my main concern is that Mom maintain a decent mood. Now, if her mood slips, we can add that medication back in. But if she doesn’t need it – well, something about that just makes me feel good.
The social worker, a new staff member, said she still didn’t know much about Mom, but definitely recognized her by her Crocs. Mom has been wearing the blue ones lately, but she apparently does emerge from her room on some days with one blue and one pink Croc, and she will not change them to make a matching pair. This reminded me that I had been wondering about how Mom gets dressed each day. She apparently still likes to pick out her own clothes. She probably needs help getting into them. She might reject an outfit picked out by a staff member. And I asked if there was any laundry confusion left over, because there were some clothes in a box on the floor of her closet. That box had held disposable underwear at one point and I wondered if aides were mistaking it for a hamper. But the nurse said there’s a good chance it is Mom who is tossing clothes into the box. Why, I wonder, hadn’t I considered that possibility? At any rate, I said I had rearranged some of the shirts in Mom’s closet so they were front and center. Mom has some nice clothes, I said, and there is no reason she shouldn’t wear them. Unless she doesn’t want to, of course…
Mom apparently is in a group that some staff members call the “clucking chickens.” They are ladies who sit together in the program area and occasionally make comments about others. They can be a little catty in their remarks. Only staff members really hear what they say, or understand at whom the remarks are directed. I don’t know how much Mom participates in the clucking. She does occasionally make observations about others to me, but they aren’t usually mean-spirited. The nurse also said Mom likes to be helpful to other residents. And on this day, in fact, during our conference, Mom was keeping residents organized during a visit from an eye doctor, the nurse said. Mom might be a little bit bossy sometimes, but the residents respond to her instruction. I think this is interesting. I think the old Mom would have been more inclined to just keep to herself under similar circumstances. Or might have disliked being told what to do. Maybe this is a defense mechanism – a way to be the boss rather than to be told what to do. After the conference I was going to go back to the program area and observe this behavior in action, but I thought I might just mess up the flow. And I had to go back to work. So I turned around midstream and left the building instead.
During the conference, though, I also asked about how families tend to handle Christmas. The staff members said families do what works best for them, and that could be just about anything. “Every day is Christmas,” the nurse said. So if I don’t see Mom on Christmas day, it’s really OK. She won’t know the difference or feel abandoned by me. When I brought Mom to my house last year to open gifts on Christmas morning, she seemed confused. She didn’t take her coat off. The decorations didn’t seem meaningful to her. Frankly, it bummed me out. So I am thinking of taking gifts to Mom at the Alz center and then taking her out to lunch. Or maybe dinner, depending on what day I do it – but it won’t be Christmas day. Patrick and I will be visiting his family that day. I asked if taking gifts to the center would make other residents jealous. “They don’t have those feelings anymore,” the dietitian noted. I asked if staff members think family members who don’t see residents on Christmas are terrible. They don’t give off that sort of vibe, but I am insecure that way, unfortunately. “We don’t judge anyone,” the nurse said. And I believe her.
Today, the Alz center hosted a Christmas party for residents and their families. I took the afternoon off to attend the whole thing, which ran from 2 to 4. When I arrived, I found Mom (with an activity aide’s help) sitting on a couch in the far end of the program area, talking with a gentleman resident. The party was just getting started, and I urged her to come with me to sit in the circle in the program area to hear the entertainment, a man with a guitar, wearing a Hawaiian shirt with poinsettias all over it and singing Christmas songs. We left the resident behind on the couch, but I don’t think he really minded. I invited him to join us, but he didn’t seem to be interested. The entertainer sang “Jingle Bells” first, and many residents, including Mom, could sing along. He sang some older tunes, which were familiar to me but that I didn’t really know, and the residents could sing along with many of those, as well.
The activities director encouraged everyone to get food, so I went down the hall to fix a plate for me and Mom. I got us each a meatball, a chicken finger, two pieces of cheese and a frosted cookie. And a cup of punch. I handed her her punch, put the cookie plate on my lap and held the food plate between us, and gave Mom a fork. She put the fork down, picked up a meatball and tossed it into her punch. I try not to act mortified when things like this happen. I told her it might taste better if she ate it plain, and she picked the meatball out and took a bite. She sipped the punch and said it didn’t taste very good. I put it on the floor and gave her my punch. We got through the rest of the snacks without much trouble, though Mom did get lots of crumbs on her lap. She liked the cookie best. I probably should have just given her a cookie and she would have been satisfied. Later, when I was brushing crumbs off of her, I noticed one up near the collar of her shirt. I brushed at it and brushed at it and it stuck. I realized it was a booger. Once again, I tried not to show my dismay. It really wasn’t that big a deal. It just took me by surprise.
Santa and Mrs. Claus came around to each resident for a visit, and staff members took pictures of residents and families with the Claus couple. Eventually, a staff member handed Mom a wrapped gift with her name on it. Mom asked if she should open it now and I said absolutely, she should. She studied it, then started tearing at it. “I’m really going to have to rip it up,” she said. I told her that’s a fun part about Christmas – you get to tear the wrapping paper off of your gifts. I was tickled with the gift – six pairs of socks. I had been considering getting Mom some socks. Now I don’t have to.
An hour into the party, the entertainment changed. An Elvis impersonator, who had been in the lobby when I arrived singing to the residents in the skilled nursing area, was coming to sing with us, and the guitar player was moving to the lobby. Elvis started with “White Christmas,” and then sang some songs I didn’t really know. He then sang “Peace in the Valley,” a song I know because I am a Johnny Cash and June Carter fan rather than because of its Elvis connection. A lot of residents knew that song, too. I really like that song, so I was warming up to Elvis. He walked around to shake hands and he shook Mom’s hand and put his hand on my back, and I just loved the whole thing. He was a good entertainer, not over the top, had a nice voice, really worked the room. During one song, a resident stood right in front of him and started touching the beads on his outfit. She just stayed there, and he held hands with her and let her admire him.
The activities director started dancing with some residents, and I asked Mom if she wanted to dance, and she sort of sheepishly said yes. So we danced together, doing a little twisting. It was fun. She eventually said she was tired and we stopped. I alternately laughed and also wanted to cry. There are so many residents there who cannot dance, let along walk, whose faces didn’t register that they might be enjoying the music. Who didn’t recognize Santa and didn’t realize there was a party going on. One activity aide went around to many residents in wheelchairs and held their hands and danced around their chairs. She seems to be a favorite of Mom’s. Every time Mom spotted her, she’d say, “I like her.”
When Elvis finally wrapped it up with “Silent Night,” I was exhausted. I think Mom was, too. I helped put away a few chairs and Mom seemed a little restless. “I don’t want to be left here alone,” she said. She often says something like this when I show signs of leaving. “I don’t know what I’ll do,” she says. I always tell her she’ll be busy, she’ll be eating soon, she’ll have stuff to do and be surrounded by her friends and she won’t even know I’m gone. I hope that is true. Though a staff member did come up to Mom at the beginning of the party and said, “See, Emily did make it.” Apparently, Mom wasn’t sure I had been informed about the party. I asked her if she had been worried that I wouldn’t be there and she said, “I don’t know. I don’t have a very good memory.” I was just glad she wasn’t feeling upset the way she had been at the Thanksgiving party.
We took a little walk, and the activities director passed by and wished me a Merry Christmas and admired my Christmas sweater. I told her Mom has a couple of sweaters, too. That made me want to go back to Mom’s room and prominently place her Christmas sweaters in front of the closet so they’re seen by whoever it is who helps Mom get dressed. While I was going through her closet, Mom stretched out on her roommate’s bed and covered herself with a jacket she had taken out of the closet. I asked her if she wanted to stay there and she said yes. I asked her if I should turn off the light and she said no. I arranged some of her clothes – including some of her nicer shirts in addition to her Christmas sweaters – in the closet in a way that I thought made them more visible. I don’t know why that matters to me, but Mom does have some nice clothes. And I want her to wear them sometimes.
Every Wednesday night that I can, I attend a support group meeting at Mom’s Alz center. It is the only weekly support group in town for Alzheimer’s caregivers – all of the others that I’ve ever seen listed meet just once per month, which doesn’t feel like nearly often enough. Before Mom moved into the center, I had visited it twice before but did not stick around. The first time, Mom had been recently diagnosed and I barely knew what to say. The doctor who ran the group asked me lots of questions, and he told me I needed to take her car keys away, pronto. I felt that I was being scolded. I could not imagine what would happen to my life if Mom stopped driving. I didn’t want to imagine what might happen if she had an accident. I was being told something I didn’t want to hear, and I didn’t go back. For a very long time. Of course, now that I know him, I realize he didn’t say that to be hurtful. I have heard him say it to others. It’s one of the hardest things for a caregiver to do, and one of the most important safety steps we have to take.
I went again not so terribly long ago. Perhaps a year or so ago, when the stress of being Mom’s caregiver was becoming too much for me to bear, I think I gave it another try. My memory of that session is not as clear. I don’t think anything bad happened. I think it must not have felt like a very good fit. Or something like that.
Now, with Mom in the center for just three full months, I have become a regular in the group. The other regulars have a stronger bond, I think, with each other, but I now feel that it is a good fit for me as well, and I know everyone a little better each week. There aren’t a whole lot of us. There is a man and his daughter, whose wife and mother have lived at the center for about 2 1/2 years. They have been experiencing the disease for 16 years, I believe. The man quotes a few phrases about having a spouse with Alzheimer’s that I think ring very true: It is like a funeral that never ends, and the caregiving spouses are widows and widowers with living partners. There is another man who has been caring for his wife for 10 years. He is very vocal about how hard it has been on him. He can seem gruff, and he knows it. I think his heart is completely broken. I really feel for him, and am glad he feels free to say the things he does. Last night, he seemed to want me to hug him, so I did. He’s one of those tough exterior guys who is melting on the inside, I think. There are two women caring for their husbands at home. The stories they tell are very different, because the disease manifests so differently in each patient. But they also have a lot of similarities. There is a woman whose mom has lived at the center for about three years. Before that, her mother lived with her and her husband for seven years. Her mother and mine are actually roommates, but we both agree that neither mother really seems to be aware of the other. And there is a woman whose mother lives in a nursing home in Virginia. She drives eight hours, I think it is, on as many weekends as she can to be with her mom. I can’t imagine the depth of her fatigue, making that trip. She is the writer of a blog in my blogroll, “Memories From My LIfe.”
Occasionally new people drop in to get a feel for what they’re in for shortly after a diagnosis in their family. A man whose mother died a year or so ago sometimes comes to talk because he still feels the grief of that loss. People who need to speak to the doctor time their visits during or after the group so they can meet with him. And nursing and social work students in geriatrics rotations attend sometimes to learn a thing or two about the disease and its impact on families. But there seems to be this core group that attends every week, and I have come to look forward to the meetings. There is a certain comfort in knowing we are all on common ground that can feel very unsteady under our feet. Certainly, we often laugh. We marvel at the problem-solving skills developed over time to ease life for the patient and for ourselves. We get lots of advice and information from each other, and from the doctor who typically runs the group. Every now and then, someone is unable to finish a sentence, or even get started, because it has been a bad week, or the pain of the losses associated with the disease are just too much that night. It’s interesting – it’s common in this setting to apologize for crying. And yet, this is one place where we should not have to apologize about how we feel. That’s why we’re drawn to each other in the first place – because having a loved one with Alzheimer’s can feel so bad.
I had told myself that I would take Mom to lunch over the Thanksgiving weekend, as a little treat for her since I had extra time off. I didn’t manage to do that. I visited Thursday and then again on Sunday, staying for awhile before lunch and leaving when she began to eat. When I arrived on Sunday, she was in line at a table to have her nails painted. The activities aide gave her a really bright red this time, and I thought it looked nice. Maybe I can get her a new bottle of polish for Christmas. I have already bought her two pairs of pants and a lipstick. I’m all about practical gifts for her. And not too many, because she doesn’t really completely understand gifts.
All week, I had been planning to take her to lunch today, Friday. But as I was getting ready for work this morning, I thought, No, I just do not want to do that today. Maybe Saturday, when I have more time. Never on a Sunday, because there would be too long a wait at Bob Evans. But as the morning passed, I felt my mood brighten. I felt lighter. Not physically, but like the black cloud I have tended to have over my head seemed to be lifting. I was consciously aware of it, and it made me so happy. And I called the Alz center to tell the receptionist I would be taking Mom out to lunch.
When I arrived, I went and got her coat, hat and gloves before I even said hello to Mom. There were a few kids from the daycare visiting, so an activity was just nearing its end. An aide was also dancing with a resident. Mom was sitting quietly, picking her chin and holding dog/cat. She was wearing her glasses, which had been lost on Sunday. I know most losses are temporary so I tried not to worry about it. And there they were today. Mom was wearing good clothes for the weather – gray fleece pants and a yellow fleece sweatshirt over a pink T-shirt. Bright blue socks and pink Crocs. I told her I was taking her to lunch, and she liked the good news. When she saw me, she said, “This has happened again,” meaning I have come for a visit. My arrival is always a surprise, and, thankfully for both of us, a pleasant one. I bundled her up. And then she said she might have to poop. So I took her to her bathroom and she sat down and a few typical bathroom sounds occurred, and she said, “There’s the poop.” And I stepped away and before I could get back to her, she had stood up and pulled up her pants without using any toilet paper. And I noticed there was no toilet paper. I decided not to care and I guided her to wash her hands. I bundled her up again and off we went.
We were seated by a nice young man at Bob Evans who asked Mom about dog/cat and what his name was. This restaurant is close to the Alz center so I wonder if staff members know they might have an Alzheimer’s patient on their hands when an old woman walks in with a stuffed animal. Mom ordered coffee and I ordered water, and when both arrived, Mom picked up my water and drank from it immediately. The server brought me another water. As we waited for our food, Mom would occasionally take her fork and make a cutting motion on the placemats in front of us, confused that there was no food yet. She would laugh at herself, and say, “I keep thinking there’s food there.” Eventually, the food did arrive and we ate, mostly in silence, occasionally chatting. She would say, “Emily came and we went out.” And I’d say, “And we are still out.” She made references to Patrick and Emily. And I’d say, “That’s me.” And she’d laugh. It’s OK with me that she is forgetting me, as long as she can recognize my face as her person. I just want her to always know she is safe with me, that I am on her side. When we were leaving, after another visit to the bathroom, as I was buttoning her coat, she said, “You’re my best friend.” I said, “Oh, now…” And she said, “Really, you are. You do everything for me.”
Back at the center, other residents were still eating lunch, so Mom sat in a chair in the middle of the room. I took her coat and hat back to her room. I found some clothes on the floor in her room – a shirt and what looked like flannel pajama bottoms. Mom’s bedspread was in disarray on her bed. I figured someone had taken a nap in her room. And then I noticed a little skid on the floor, and a small piece of poop near my mom’s roommate’s bed. And I thought, yuck. I checked my shoes – no poop, thankfully. I just left the room and shut the door. It was lunchtime – no time to report an accident in my mom’s room. Perhaps the staff already knew, because whoever had been in there had probably come out of the room naked. I knew the staff would find the problem in time, and take care of it. I kissed Mom goodbye. I said, “I have to go back to work,” and she said, “I know.” And it was OK.