Archive for the ‘Looking back’ Category
I popped in on the Alz center on Valentine’s Day. Two weeks had passed since I had last seen Mom – partly because Patrick and I had been out of town. I realized as I pulled into the parking lot that I had never received a mailing about the annual Valentine’s Day lunch. The lot was pretty full, and I wondered if I had missed the event. The receptionist greeted me with an artificial rose and said, “Happy Valentine’s Day.” I thanked her and asked if there had been a lunch. Not this year, she said. There is new management – could that be why? I wasn’t really sad about it because Mom hasn’t seemed to enjoy these lunches all that much. Lots of extra noise and extra people don’t typically sit well with her anymore. If she doesn’t enjoy them, I don’t enjoy them. The receptionist said there was a monthly birthday party planned for the next day, with cake, so that residents would be getting a treat soon.
Mom was sound asleep on a couch in the program area. I sat on a chair next to her and watched her for a bit. She didn’t show signs of waking. She had on a cute assortment of clothes – her turquoise fleece pajama pants, a pink T-shirt and a brown button-down shirt. She looked good and, of course, relaxed. I stopped at the nurses’ desk and asked Mom’s nurse how Mom has been lately. All fine. No problems and no significant changes. Not surprising, since I had received no calls. But it was good to be reassured. “I heard some really loud singing recently and when I looked to see who it was, it was Bonnie,” she said. That sounded good to me. Loud singing is typically done by a happy person, I reasoned.
When I was visiting with Patrick’s family, my sister-in-law bought some small Valentine’s Day gifts for her daughter – some shower gel and a bracelet. I remember when Mom used to do the same kind of thing – just offer a little something to observe the day. And I recalled a card I got her when I lived in Athens years ago – it featured a black-and-white photo of a woman in a black dress with a long string of pearls that she was holding in a way that made the shape of a heart. I really liked that card, and sent it to Mom as a valentine. I probably thought I was being cool and unconventional. But really, I was just sending my mom a card. I probably didn’t say in it that I loved her, because we didn’t exchange those words much at all. But I hope it was obvious that I did love and cherish her.
Today is my blogiversary. Four years. Oddly, that doesn’t seem like such a long time now that I am in my late 40s. But at the same time, it means the number of years of my life spent looking after Mom is adding up, and, considering how physically healthy she seems to be, will likely exceed 10. That’s plenty of time to be a caregiver, but it pales in comparison to some people I know – especially two older gentlemen I met in support group who have cared for wives with Alzheimer’s for 13 years and 16 years.
Four years would feel like a very long time if I had been miserable for the duration. Misery led me to begin the blog. It functioned as a journal for me to get difficult emotions off my chest. I began blogging and therapy at the same time, in fact, in January 2009, when I was at a very low point. Mom was in assisted living, so I knew she was safe. And that was an enormous relief. But she also needed me. For all sorts of things. I was her liaison to the rest of her shrinking world, it seemed – to cat food and litter, to clean underwear, to her neurology clinic appointments. Friends did visit her with regularity back then, and she had friends in assisted living. But from my perspective, Mom’s expressions of any kind of need always fell on me.
So while I struggled with both the workload and the conflicting emotions – I was sad to see her confused and losing her memory, but also wished the decline would accelerate so she would be unaware of her own problems – I also reflected through this blog on what it might be like for her. Seems to make sense, I’m sure. But I was so absorbed with my own experience that it took me some time to think of her as more than a needy patient who was becoming more childlike by the day. And in defense of caregivers, it’s pretty easy to become self-absorbed. Caregiving is difficult, and time-consuming, and frustrating, and heartbreaking, and often feels like a very lonely pursuit. But for Mom’s sake, and for my own, I’m so relieved that I was able to look at and consider the bigger life picture, thanks to the blog. I ended my own misery and was able to focus on what has become my No. 1 priority where Mom is concerned: her peace of mind.
This is not to say I consider myself the ideal caregiver. Not by a longshot. But I am not an angry or resentful caregiver, and that is significant progress. I didn’t want the job when Mom started showing signs of illness. I fixated on what I considered Mom’s misgivings as a mother as a way to justify my own lack of interest in taking care of her. Some time ago, though, without ceremony, I forgave Mom for the bad times in my childhood that I attributed to her, and I forgave myself for holding onto that anger for as long as I did. For some, it’s easy to stay stuck with the anger. I am so fortunate that blogging helped me get unstuck. It will be interesting to see what the next year has in store for me, and for Mom.
Today is Mom’s 75th birthday. I don’t care much about birthdays – at least my own – but I have been sort of sad about this one. Mostly, I think, because it has prompted lots of thoughts about Mom, and about the most recent milestone birthday that we celebrated in a big way – her 60th birthday. Her friend Eve hosted a party. Jeff, Laura and I (and Patrick) were all there. Several friends of Mom’s traveled to attend. One friend gave her a rice cooker – a funny thing for Mom, who probably never cooked rice once in her life. She gave it to me, and I still use that cooker to this day.
I have no recollection of what we did on her 65th birthday. By her 70th, she was damaged enough by the disease that we didn’t make a big deal of the number, just the day, because she could still enjoy a fuss on her behalf. I’m also reminded of my 40th birthday, when Patrick threw a surprise party for me at Buca di Beppo. Mom was just a couple of weeks from being diagnosed with Alzheimer’s, but she kept the secret of the party, showed up on time and had gotten me a shirt at Kohl’s. All tasks that probably weren’t so easy for her by then. She was a little adrift at the dinner party – it was loud and there was constant activity as guest after guest gave me a bottle of wine – Patrick’s suggested gift. It was a genuine surprise and a fun night. I’m so glad Mom was there.
Today I visited her after lunch with Hershey bar in hand. She was just finishing her meal, wiping up beans and corn with her fingertips. She stood and I cleared her tray. We took a walk; she held my hand. When we got to the lobby, she turned and said, “I love you, honey,” and gave me a kiss. We sat on a couch and she immediately turned so she could partially stretch out, with her knees bent and her feet wedged under my legs. I handed her pieces of chocolate bar one at a time. Once she got the pieces in her hand, she knew just what to do – pop them in her mouth. But it was hard to convince her to just take one from me. I would have to touch her hand with mine, and transfer each piece. There were several unsuccessful attempts, so I ate a few pieces, too. Several staff members stopped to say hi to her and to me. To one woman, Mom turned up her head and exchanged pleasantries – “Hi, Bonnie. How are you?” “Fine. How are you?” To another, she muttered nonsense words. So interesting how that works.
To me, she said, “You’re helping me.” And, “Where’s Emily?” I gently massaged her legs. I could see a dark red patch on the inside of her left elbow. Nurses called me this week to let me know she seemed to have a skin disorder and then again to let me know Mom was being treated with a cream twice a day for seven days. It’s an angry red patch, but Mom didn’t scratch once while I was there, which suggested to me that the cream’s anti-itch properties appeared to be working.
One aide asked me if I had brought a cake today for Mom. “No, just a candy bar,” I said. “Well, maybe you can bring a cake later.” I admit I bristled in response. Just like Mom, I do not like to be told what to do, especially when it comes to her care. I am all for giving Mom the pleasures of a visit, loving touch and social contact, and the sweetness of a tasty treat. But a cake? She wouldn’t even realize what it was. If I thought for one minute she’d be delighted by a cake, I would bring her a cake. But I know, after all this time, that she was quite satisfied with the candy bar.
Patrick sensed my sadness this morning, and sent me flowers this afternoon. Seems silly for me to get flowers for my mom’s birthday. But then again, they gave me some cheer. That guy spoils me so…
For several years, Mom and I would drive to Springfield sometime during Memorial Day weekend to visit the cemetery in which her parents are buried. We’d meet my aunt, uncle and one or more cousins at the cemetery, and it seems that more often than not, we would circle the place a number of times, always forgetting precisely where Grandma and Grandpa are buried. After I got married, Mom usually made the trip by herself. I really don’t remember the last time we took that drive together for that purpose. But I still identify Memorial Day with that daytrip with Mom even after all this time. I talked a little bit about it with Mom when I visited her today.
I hadn’t seen her in almost two weeks. Shortly after the Bald Head Island trip, I took another brief vacation, this time to Florida to go to Disney World with my dad, stepmother, brother, sister-in-law, and niece and nephew (plus another sister mid-visit). I hadn’t done a good job of getting a visit in with Mom before I left, mostly because work was very busy as I tried to catch up and prepare to be away again.
I remember that occasionally during the Disney trip (just three days), when I was feeling rather overstimulated by the crowd, noise and heat, I would think about how peaceful and calm it can be to visit Mom. And yet when I was preparing to visit her today, I felt both drawn to her and also a little full of dread. That’s not entirely unusual. If she’s in a good mood and alert, she can cheer me up, and I’m always hopeful for that outcome. And when I’m away from her for a long time, I miss the connection I’m trying to maintain with her. As for the dread – I think that’s just related to not knowing what to expect from the visit.
Today, Mom was sitting at a table in the program area. She had on a Christmas fleece sweater and fleece pants. I admit I was surprised she had on such warm clothes on one of the hottest days of the year. I had brought some clean summer clothes to put in her closet, and I removed other fleece items that I didn’t think were necessary to keep around over the warm months.
I sat next to Mom and we chatted. For the most part, her language was gibberish, but she’d occasionally say words normally. “Are you tired?” she said to me. “I’m just boring,” I responded. I wasn’t talking too much, balancing feelings of wanting to be a cheerful presence for her with a sense that saying anything to her is a useless endeavor. “The girls win,” she said. “Girls rule the world,” I responded, putting my hands in the air. She liked that. “Are you Bonnie?” she asked. “YOU are Bonnie. I am Emily,” I said. As we started to take a little walk, she stopped and said, “You look like me,” and I said, “I know! I do! People tell me that all the time. It’s because I’m your daughter.” She also said the name Shirley – that was the name of a cousin she was very close to, who died young, in her 50s I think, of complications of Type 1 diabetes. I attended the funeral with Mom even though I wasn’t sure I had ever met Shirley – I did know her sister, Sandy; Mom was close to her as well.
I was with Mom for about an hour, which was longer than usual. A time or two during the visit, I got the sense that Mom felt it was time for me to go. She wasn’t upset or anything; she would just make a motion or say, “Well…”. We got up to take a walk and I stopped to talk briefly with a man who visits his wife every day. While we were talking, Mom wandered away. I found her in the lobby, moving around couch and chair cushions with another resident. I coaxed them both back to the program area for lunch, and said goodbye to Mom once she was settled in with her spaghetti, green beans and garlic bread.
My sister’s daughters were born three years apart, on April 1 and April 4. Mom liked being a grandma, and I think she was good at it. She visited the girls regularly – they lived in suburban New York City for most of their youth before my sister’s family moved to California. Because it is their birthday week, and they are now adults, I looked through some old photos of Mom and her grandchildren to post on the blog.
I visited Mom today, too. I wanted to check on her after a nurse called yesterday to tell me about two new bruises – one on her butt cheek and one on her calf. We both assumed she plopped somewhere too hard, or bumped into a couch or chair. Today, she was lying on a couch, with Mr. R nearby in a chair. Another female resident was hovering around, sometimes saying things. Mom uttered some nonsense words, and this woman said, “Don’t call me a bitch.” I may have interrupted some encounter they were all having before I got there. I was bending over Mom and rubbing her arm, and she said, “Get away. Get away!” So I wandered away for a little while, and then came back with a chair so I was at her level and not standing over her. I rubbed her neck and arm, and then just sat next to her for a short while. She didn’t say much. I wondered if she was annoyed about something, and I suppose she could have been in pain from her two big bruises. I told her it was Julia and Lily’s birthday week and that I had been thinking a lot about them and how much fun she had being a grandma. And she looked at me and said, “That’s very interesting.” Maybe those names meant something to her today.
I had lunch with Mom today – an Alz center Valentine’s Day family event. She was very peppy and funny. We had pasta with red sauce, steamed vegetables, salad, a breadstick and red velvet cake with cream cheese frosting. Mom also had ice cream. She ate everything but her salad – mostly using her hands. At one point, she said, “I’m a crazy lady.” She said lots of funny things, made funny faces and was having a good day. Which meant it was a good day for me, too. When we were done eating, she started reaching for food on the tray belonging to a woman resident sitting across from us. So we took a little walk and I settled her onto a couch, anticipating that she might need a nap. And I needed to return to work.
I took her picture, thinking it has been awhile. And she was full of smiles. Recently looking back at old posts, I came across a post from my first Valentine’s Day lunch with Mom in 2010. I took her picture that day, too, and it sticks in my memory. Mom looked pretty robust back then. She had gained weight, enjoying the Alz center’s large meals and steady stream of snacks. Her color was better. She was still interested in lipstick. Her hair was a mess, unfortunately, because I hadn’t set her up yet for regular appointments with the beautician. Her expression seemed a little timid. She wasn’t as sick then, and looking at the photo, I wonder if she wasn’t as content as I might have imagined she was.
For years, my anxiety dreams involved school. I would dream that I started a graduate program, attended classes and behaved like a normal student until finals week. And then I would skip all the exams and refuse to write papers. And then a new term would start and I would repeat this pattern. Sometimes I dream that I have returned to my elementary school to pick up the graduate school transcript, but I never see the GPA. This is very unlike the real me in school. I was always worried about grades. I was very interested in being an achiever. I wouldn’t have ever considered skipping a test.
Lately, my dreams have changed. Several times recently, I have dreamed that Mom voluntarily left her nursing home and moved back into my childhood home. In the dream, this doesn’t mean she no longer has Alzheimer’s disease. It just means she is willful about choosing her environment. So in this dream, I have anxiety about how Mom is surviving in the house. I have anxiety when I see a car parked in front of the house, or when I do NOT see it parked there, meaning she is out for a drive. I sometimes experience what feels like a dream within a dream: I go to the nursing home to talk to the staff about moving Mom back in, explaining to them that I have been dreaming about her potential exit and desire to move back into that house. But my discussion with the nursing home staff is also part of the dream.
Last night, the dream included two new sources of anxiety: an overflowing mailbox outside the house, and an effort to see how close I could get to a snake without letting it bite me. This second element was a source of actual fear and struck me as totally bizarre: it featured a childhood friend who lived down the street from me who chased me up the road toward my house with a snake in her hand. Even though she had a hold of it, she couldn’t stop it from trying to bite me. And then when I finally got to my house, I encountered the mailbox, stuffed with miscellaneous mail that I assume – now, awake, looking back – is Mom’s mail in my dream.
I wouldn’t think much of it – I have had anxiety dreams all of my adult life, really – except that I am waking up so tired from these dreams. And I get the sense that I am thrashing around in bed. I routinely find that I have wrapped the comforter around me, taking the covers off of Patrick in the process. I inevitably find one of my pillows on the floor – every. single. morning. And my short hair is messier than usual these days when I get up, looking as if I have spent the entire night moving my head around and around. I probably got to sleep by 10 p.m. last night and woke to Patrick’s alarm at 6:30 this morning. Plenty of sleep. But I felt like a zombie. And I did not want to get up.
I interpret these as anxiety dreams because I sense a feeling of breathlessness for the duration. There is no nostalgia about the house in the dream, nor in my waking life. I don’t miss my childhood home. We didn’t take great care of it, and my childhood was not ideal. Perfectly tolerable, but marked by many difficulties. So I don’t see it as some return to a past that I cherish. Even the Mom I knew over the years of living in that house is not my favorite Bonnie. I had a much better appreciation of her after I spent some time away from her in college. We moved out of the house when I graduated from high school, and I recall no sadness about leaving it behind. Sometimes I drive by it now and wonder what it looks like inside. But that’s the extent of my feelings: curiosity.
I don’t worry as much about Mom as I used to, but she is on my mind so much of the time. I don’t know much about dream analysis, so I can’t try with any real knowledge to interpret what these new dreams mean. I guess it is some kind of processing of my thoughts. Ironically, Mom was interested in dreams. I have discovered, among the things of hers that I have stored in my basement, stacks of notebooks that I assume she kept by her bed. They contain notes that I believe she jotted down in the middle of the night or in the morning as a way to capture the essence of a fresh dream as completely as possible. Someday maybe I’ll study those notes. I wonder what she would think of my dreams about her.
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.
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.
When our first dog, Cookie, died of lymphoma at age 4, Mom did a nice job of trying to comfort Patrick and me even as she felt a lot of sadness at the loss of her granddog. She bought us a stuffed black dog toy and got herself one, as well, to cuddle with during our sad moments. I still have that stuffed animal on my dresser. We got Bino (short for Bambino) just five days later, adopting him from a shelter just a few hours after he had been dropped off. He was a tiny beagle mix puppy, scared and quivering in the back of his kennel. Patrick tucked Bino into his jacket and drove him home. And every day after that for about three years, Mom walked from her apartment around the corner to our house around lunchtime to let Bino out for a bathroom break. When we got Spencer the chocolate lab six months later, she became Grandma to two doggies and visited them every day that we were at work. She would give them an ice cube treat to put them back in their crates, and she’d always refill the tray. We put dog treats into a dedicated ice cube tray to give to the dogs when we leave the house. In fact, one sign of Mom’s illness was that she sometimes left the ice cube tray on the counter, or even in a cupboard.
We got Bino at the end of 2003. Mom was diagnosed in November 2005. She kept trying to look after the dogs after that, though at some point I told her she didn’t have to worry about it anymore if she forgot or didn’t feel like coming by the house. She moved to assisted living in 2007. I still brought her to our house for occasional visits, holidays, stuff like that. She seemed to still enjoy seeing the dogs, and they loved seeing and smelling their long lost Grandma. The last Christmas that she was home, the boys were very glad to greet her even before she took off her coat.
The Alz center has always told me that I am welcome to bring my dogs in to see Mom and to cheer up other residents. So on Monday, the Fourth of July, I finally took Bino with me. Spencer is too big and unpredictable. But Bino is pretty manageable, and he had a stronger bond to Mom. Before I found Mom in the program area, I ran into a resident, a young woman who has been having a hard time lately missing her family. She speaks another language sometimes, but she stood in front of me and said, “Puppies.” And I said yes. I asked her if she liked it or if it made her feel scared. “Scared,” she said. But she seemed interested in Bino. She walked away, and I found Mom walking around. The residents were sitting in a circle for an activity, and the activities staffer asked me to show Bino to the crowd. Mom and I sat on a couch together. She didn’t seem interested in Bino. “It’s pretty sad,” she said. She talked about horses and cats. I wondered what could be going through her mind, if seeing a dog was stirring up some old memory, allowing for connections in the brain that don’t usually happen. I was concerned to hear her say something was sad. But she seemed pretty much the same, in a decent mood if not a great mood.
We walked to the lobby and sat down again. Bino jumped up and tried to cuddle Mom, and she cringed and shrank away. And he jumped down and landed on her foot, and she complained that it hurt. And though I was fighting the feeling, I realized Mom just doesn’t care for animals anymore. When Bino sat still, she’d say, “He looks happy.” The young woman came by again and stood next to the couch and said “puppies” a few more times. And then she was swept away by a gentleman friend, and they sat on a couch across the room. Mom did say at one point to me, “You’re just great.” I told her that she is great, too. But she was a little more subdued than usual, and did not seem to want Bino to get too close. I stayed only about 25 minutes. Before I left, I did manage to get a picture.
So now I know. There is no need to take Bino to the Alz center. He was a little nervous anyhow. And Mom doesn’t like him anymore.
The past several Mother’s Days sort of bummed me out. I approached the day this year with a better attitude. I visited Mom at the Alz center for a Mother’s Day tea the center hosts each year. Mr. R was with Mom today, so when I got there, the three of us just took a walk, sat for awhile, and then got up and walked again. I held one of Mom’s hands and Mr. R held the other. “I like this,” Mom said. “I really love this.” She was feeling the love, and that was good. I settled them on a couch and then got them some snacks from the dining room. Lots of people were eating in there, and I figured the action might make Mom restless. When I got back with the snacks, Mom had hoisted her legs onto Mr. R’s legs. She was at home, very comfortable. She had a few cubes of cheese and little pastries. Mr. R took a pastry, too. They both had some juice. I didn’t stay too long. When I left, I kissed Mom goodbye. I’ve collected some pictures of Mom as Mom to celebrate her life today.