Archive for the ‘Looking back’ Category
I was already planning to write a post today because it is the 9th anniversary of Mom’s Alzheimer’s diagnosis. Nov. 3, 2005. I remember much of it well; other details, not so much. Mom, my sister Laura and I visited my coworkers after the appointment because my office was right across the hall from the neurology clinic at the time. What a surreal scene, Laura and I numbed by the diagnosis even though it wasn’t necessarily a surprise. And Mom probably just going with the flow. She hadn’t had a strong reaction to being told she had symptoms of dementia and that her condition closely resembled the Alzheimer’s type of dementia. None of us cried or anything. Just a lot of nodding our heads.
And then NPR announced the death of Tom Magliozzi of Car Talk, from complications related to Alzheimer’s. That really makes me wonder what happened. He and his brother retired just two years ago. It strikes me as so unexpected for someone who is only 77 years old (Mom’s age, too) to die of Alzheimer’s so soon after ending a highly visible professional life. Could it have been pneumonia? He could have fallen and had a brain injury. Maybe had difficulty swallowing and choked? I really want to know even though it certainly is none of my business. And as I said on my Facebook page: “If one is going to have Alzheimer’s, I believe that less is more. He is free.” It’s terribly sad to know such a robust radio character experienced this terrible disease. And yet, he and his family have been spared the prolonged agony of a very slow decline. Considering his death is a shock and a difficult loss for so many listeners, the news spread quickly over social media. And of course I personalized it: His brief Alzheimer’s experience made the reality of Mom’s illness that much starker as I ‘observe’ the anniversary of her diagnosis.
Mom is still imprisoned, still a blank slate, but thankfully still apparently at peace. I had hoped to visit her over the weekend – I took a vacation day Friday with thoughts that I would visit but didn’t even get out of my pajamas for a shower until 4:30 p.m. Then yesterday I was determined to go, but I felt a little sick. Today, with the anniversary at the top of my mind, I felt such urgency to see her that I went to the Alz center before work, arriving around 8:15. On my way there, I had my usual thoughts: Could she be dramatically different since I saw her last? Is she still content? Will she respond well to my presence?
I found her sitting in a chair near her room. She was sort of out of it – tired, I assumed. Still waking up. I recalled the aide who said during my last visit that Mom doesn’t like to be rushed in the morning. I rubbed her arm and head and just sat with her. An aide came to get her for breakfast, and she and I heaved Mom out of the chair and led her to a table. She seemed a little miffed but kept shuffling along as we held onto her arms. We sat together waiting for her tray. An aide asked if I would be around to feed her, or did I need to get to work. I opted to stay. I still think of Mom as able to feed herself, but I’ve been told before and again today that aides like to help Mom eat to prevent clean-up of the enormous mess she makes. “I like to make sure she gets her nutrients,” an aide said today.
And so, I fed Mom her breakfast: French toast, a boiled egg, cereal and juice. She ate every bite. The dietary director has told me a number of times that Mom likes to eat dry cereal. But I poured milk over it and fed her bites that way, and she had no complaints. I praised her repeatedly. She was passive for most of the meal, but by the time I was giving her a final drink of juice, she was laughing at me. A little fuel was all she needed to become her usual self. I enjoyed our time together. I’d like to be there more, to help with her meals. It’s a pleasant way to spend time with her – a little bit intimate, in some weird way – and I’ve anticipated that I’d want to help the staff as much as possible once she needed help with eating. It will be interesting to see if I can pull off more frequent visits at mealtime.
I am honored that I was asked to participate in a social media event to call attention to the challenges facing caregivers of aging parents. It is hosted by Caring Across Generations (on Twitter, follow #blog4care and/or @CaringAcrossGen). I am technically challenged, however, and messed up an attempt to reblog a post from November 2013. It appears below, and the original, with a few comments, is here. I selected this post because the “New Old Age” blog post that triggered it covered an important issue: the health of caregivers. Could it be that caregivers, despite the stresses of taking care of a sick loved one, somehow experience a gain in terms of their own health? One study suggested that might be the case. But I write about research for a living and I am aware that one study is … one study. Still, the suggestion that there is a “caregiver gain” intrigues me. I do worry about the physical toll of the long-term stress I encountered earlier in Mom’s illness, and wonder if the slow burn of relentless daily thoughts and worries about her might shorten my life somehow. But psychologically and intellectually, I appreciate where I stand on the issue of caregiver health: In my opinion, my health is as important as my mom’s. It would be very difficult to convince me otherwise.
NY Times asks: Are caregivers healthier? Jury’s still out
Posted November 2, 2013
I read the “New Old Age” blog in the New York Times when I can, and a recent headline caught my eye: “Are caregivers healthier?”
The post is about David Roth, director of the Johns Hopkins Center on Aging and Health, who published a recent study in The American Journal of Epidemiology that lends support to the “healthy caregiver hypothesis.” As writer Paula Span describes the work, Roth inserted a few key questions into a large national stroke study, enabling his team to compare about 3,500 family caregivers older than 45 with noncaregivers of the same age, gender, education level and self-reported health. After an average six-year follow-up, he and his colleagues found that the noncaregivers had significantly higher mortality rates. Nine percent of them had died, compared with 7.5 percent of caregivers, who were 18 percent less likely to die during the six-year period — a nine-month increase in life expectancy. That amounts to “a considerable survival advantage” for caregivers, Dr. Roth said.
Span also notes: Of course, you don’t need to be a statistician to see that if the burdens of caregiving can be overstated in studies like these, the benefits might be, too. … Some people in some situations find that the responsibilities of caregiving (a.k.a. “caregiver burden”) take a toll on their own health and well-being. For others, a different set of conditions may produce what gerontologists call “caregiver gain,” including both psychological and physical benefits.
Span solicited comments. So far, there are only 11, which seems alarmingly low. Mine is among them, and it has received 8 recommendations from other readers:
For me, taking care of a mother with Alzheimer’s sharpened my perspective about what is important in my own life. I turned 40 about two weeks before she was diagnosed. I was keenly aware of research detailing the health effects of stressful caregiving. I took a pay cut to change jobs, leaving a very stressful office for a job with a saner pace and a wonderful boss. I started therapy, enrolled in a clinical trial about caregiver health and began blogging. Eventually, I took up meditation. I never cared for Mom in my home, but I have been her POA and the “responsible party” since her diagnosis in 2005. There is so much guilt, so much concern for the patient’s well-being, of course, and just endless decision-making to do what’s best for the patient. But I have been adamant that caregiving would not ruin my life. It might sound selfish, but I think it’s also fair. Why would my health and life have to take a back seat to my mom’s? In a nursing home devoted to patients with dementia, she is safe, content and her physical health is better now than it was 10 years ago. In my caregiver support group, I have frequently made a point of saying: “We matter, too.”
I have lunch most Thursdays with a group of women who have worked or still work in communications in various parts of the university. One of them happens to be an old friend of Mom’s. They met over their shared love for bridge and were serious players at one time, playing weeknights at a club in our neighborhood and often attending weekend tournaments. And a funny thing I’ve always known about their relationship is that Mom accompanied this friend and her second husband on their honeymoon, in Spain. I don’t know if she’d want me to identify her, so I’ll call her JW.
At a recent lunch, JW gave me two photos from that vacation in Spain. Her brother-in-law recently died and she had been going through pictures for his memorial. I had seen one of the photos before, of Mom in her swimsuit, her hair in a bandana and a bandage on her chin. Mom had taken a spill at the hotel (I think) and bashed her chin. I’m pretty sure she had stitches, and that she covered up her hair because she couldn’t wash it without risking getting water on her wound.
I had seen this photo before, but didn’t remember the details. I was pleasantly surprised to see she is petting a puppy. Mom had loved dogs her whole life, and was an excellent grandma to my two dogs, letting them out daily until she couldn’t remember to do that anymore. Her swimsuit is also so familiar. I’m sure I’m wrong, but it seems as if she wore that same suit every year for my entire childhood. During summers, she liked to lie out in the sun in the back yard, always in that suit.
This next photo was new to me. I love it.
My lunch lady friends thought that I resemble Mom in this photo. I think so, too. “And she’s so pretty,” I said, not meaning to claim anything about myself. It is just a classic Bonnie look. She has a cigarette in her hand, appears to be reaching for a beer. She’s wearing a sweater that I recognize. And that hairstyle – she had that same general style until she was a grandmother, probably. Though my hair is now short, I think I have hair like hers. But mine is grayer now than hers was at my age – it’s possibly grayer than hers is now. My hair has thinned with age and has some uncooperative waves, and would probably look like Mom’s in this photo if I grew it out again.
JW and I calculated that Mom was 37 in these photos. That is striking to me, that she was so much younger in these pictures than I am now. I find aging to be an interesting experience and I am not troubled by it a bit. But I do often imagine that Mom must have been so much older than she really was as I grew up, just because it’s odd for me to think of being old enough to have a youngest child in college, which was the case when she was 48. Meanwhile, I am childless, but I’ve had a sense since she got sick that Mom is the “child” I never had. And she is 76 years old.
I had always known that Mom went on that trip, but I didn’t know why. JW said they were talking over drinks at the Blue Danube, probably after playing bridge, and JW had learned of a very affordable trip to Spain chartered through a veterinary association she freelanced for. She and her husband, married about six months, decided that sweet deal would be perfect for the honeymoon they hadn’t yet taken. And Mom said, “I want to go.” And so it was. That’s a great thing about Mom’s adult life – she had a terrific circle of friends. JW said it worked out very well – a threesome, she said, attracted locals interested in chatting, and they really enjoyed that interaction. Mom actually had a flirtation with a bullfighter that they met. He was short and had a scar from being gored. When the three were preparing to leave, he wanted to join Mom on the plane (JW functioned as a translator with her minimal Spanish). Mom declined. I do remember how she described his reaction: “Stu-PEED!” Like so many of Mom’s experiences, it made for a great story.
Obviously, I’m not keeping up with the NaBloPoMo pledge. It was a worthy goal. Maybe next year.
Ironically, I missed an easy chance for a post on Nov. 3. That was the eight-year anniversary of Mom’s diagnosis. Eight years. Seems like a lot. With an additional I-don’t-know-how-long before that as Mom’s symptoms gradually surfaced and then became more obvious. Nov. 3, 2005. I still have the prescription pad page that the neurologist wrote notes on during the appointment. My sister Laura had come to Columbus from California for this event. The neurology clinic was across the hall from my office at that time, so we popped in for a visit with my co-workers after meeting with the neurologist. Laura and I faked a good mood – though neither of us was particularly surprised, it of course was not a happy occasion. I’m not sure what might have been going through Mom’s mind. She had asked the doctor if the heavy drinking she did in the 70s and 80s contributed to the disease. He said probably not, but that it might have left her with less brain to work with once the disease had set in. And from what we’re learning about Alzheimer’s these days, it appears that the seeds for dementia are planted in the brain years – maybe a dozen, maybe two decades – before symptoms become apparent.
I visited Mom today, Veterans Day, and studied the faces of the honored veteran residents on a lobby bulletin board before I went to the program area to see her. I arrived long after lunch, but Mom was still sitting at her designated table. A crowd had been assembled for the day’s entertainment – my favorite Elvis impersonator. He looked different – he had a haircut and was wearing a bowling-style shirt instead of his usual sparkly getup. But he was there, for this unpredictable audience, which makes me adore him.
Mom was pretty drowsy, which didn’t surprise me. She’s often sleepy after lunch. I held onto her hand for awhile until she pulled it away. She laughed a few times and at one point I said something and she said, “Hmm? What’d you say?” That phrase was so clear, but everything else she said was complete nonsense and very few actual words. I responded affirmatively to everything she said. I sang in her ear when I recognized an Elvis song. I tried to encourage her to stand up and dance. She didn’t protest, but she also didn’t budge.
I think the Alz Center staff members enjoy Elvis as much as anybody. I noticed after a series of patriotic songs that an activities staffer had tears in her eyes. I know her husband died of Alzheimer’s and she is pretty young, meaning he might have had early-onset. I don’t know if he was a veteran. She and I have frank talks about being caregivers and I know she is one very tough cookie. Seeing the moisture in her eyes nearly made me cry. I decided that was as good a time as any to take off and let Mom relax.
This morning, as I walked into the restroom at work, I saw what looked like Bonnie in a distant mirror. I was, of course, seeing myself. Really interesting. People have said I resemble her. I see my face as equal parts Mom and Dad most of the time. I just turned 48. Maybe now, at the age she was when I was in college, I can see the resemblance, because I don’t know that I fully appreciated her – and possibly didn’t really LOOK at her – until I was an adult. And only now, as a middle-aged adult, can I truly appreciate how exhausting life must have been for her as a single parent.
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.