Archive for the ‘Looking back’ Category
If I were so inclined, I could cry five or six times a day. But I am not inclined. What a mess I’d be. I make this claim, though, because my eyes threaten to generate tears in response to a variety of stimuli: a moving radio story, cute pet photos, news of a tragic death (human or pet, which may seem ridiculous, but it’s the truth), a positive human interaction that gives me a warm feeling, my own rambling thoughts about Mom. Etc. I always stop myself, though. I kind of feel like if I let myself cry, I won’t be able to stop … at least for a long while. So I don’t go there. As my brother Jeff so aptly put it when I threatened to cry when leaving New York City last fall after our sibling visit, I suppress (it’s helpful to visualize here the lowering of hands as if pressing down on something. In this case, emotions).
I think of this as a lasting element of grieving. But I suppose it also could be that I am a middle-aged woman whose hormones are playing tricks on her. I really don’t know.
I do know that thoughts of Mom drift in and out all day, every day. I recently told a friend/co-worker about the emergency department experience we had when Mom fell and needed stitches. (That was five years ago. Seems like yesterday.) We were talking about our experiences with various medical staff – in this case, their shortcomings. I remembered the doctor was confident Mom’s stitched-up wound would heal in a cosmetically satisfying way. And that the automatic blood pressure cuff scared Mom. I can laugh when I tell these stories and she did some funny things on that day. But then I fret about how scared she must have been. And how, that long ago, she could not understand instructions or make sense of the world around her. The doctor asked if her neck hurt and she replied, “Bonnie Caldwell.” That is funny. But I shudder to think about her physical pain that resulted from that fall, and her inability to tell us what hurt.
I began writing this post on Aug. 24. Since then, two anniversaries have passed: Aug. 27, 10 months since Mom died, and Aug. 28, what would have marked seven years since she moved into the Alz center. Facebook memories from Augusts past have been full of reminders of her transition from assisted living to standard nursing home, being kicked out, and her improved mood upon moving to the Alz center. And also last August, when we had a family staycation in Columbus, and we were all together with Mom – including her two granddaughters.
The bumpiness of this post is a good representation of how I feel these days: scatterbrained, fretful, wistful, grateful, sorrowful, joyful, grumpy, peaceful.
Mostly I just wanted to check in. Mom is still a big part of my life.
A slightly shorter version of this will run in the Columbus Dispatch Thursday, Oct. 29. Laura, Jeff and I worked on this together. The photo is from Laura’s wedding in 1988. Beautiful, isn’t she?
Bonnie Ann Aitken Caldwell, 78, of Columbus, died Oct. 27 at Columbus Alzheimer Care Center. She was born on June 6, 1937, to Howard and Mavis Aitken in Springfield, Ohio. Bonnie played sports at Northeastern High School and was valedictorian of the class of 1955. She earned a bachelor’s degree in social work from Ohio State University, and held a number of professional positions in that field. Later, she put her accounting talents to use in the circulation department at the Columbus Citizen-Journal and Dispatch. She worked in the College of Education and for the Friends of the Libraries at Ohio State and completed her career in the Registrar’s Office, retiring in 1997. In her personal life, Bonnie maintained a close circle of friends throughout adulthood, enjoying intellectual pursuits and social gatherings. A lifelong learner, she had a great appreciation for the arts. She took frequent trips to New York City and traveled to visit her children, and especially enjoyed seeing her son’s musical performances. She loved a good book and a good laugh. She was an excellent and playful grandmother to Julia and Lily Edwards, who survive her, and offered a thoughtful ear and parenting insights to her older daughter. She is predeceased by her parents and brother-in-law, Gary Lough. She is also preceded in death by her beloved cat Petunia, and loved all of her furry grandchildren, too. Bonnie is also survived by children Laura Caldwell (Marc Edwards), Jeffrey Caldwell and Emily Caldwell (Patrick Keenist); a sister, Nancy Lough; and four nephews: Scott, Barry, Garth and Chad Lough, and their families. On Nov. 3, 2005, she was diagnosed with Alzheimer’s disease. For most of the following 10 years, and especially the last six at Columbus Alzheimer Care Center, she was funny, affectionate and social – an excellent subject for her younger daughter’s caregiving blog. Bonnie had two boyfriends and told stories in her own special language. Even with little strength, she could give her ear a thorough scratch and share smiles. Donations may be made in Bonnie’s memory to the Alzheimer’s Association Central Ohio Chapter or Friends of the Libraries at Ohio State. The family thanks the dedicated staff of Columbus Alzheimer Care Center. Thanks also to Gentiva Hospice. Calling hours are 11 a.m. to 12:45 p.m. Saturday, Oct. 31, at Southwick-Good & Fortkamp Funeral Chapel, 3100 N. High St., with a brief memorial service at 1 p.m. A celebration of Bonnie’s life will follow from 2-4 p.m. at Studio 35 Cinema & Drafthouse, 3055 Indianola Ave.
Almost a year ago, I wrote about how Mom had accompanied friends on their honeymoon to Spain. One of my lunch lady friends, as I call them, had found some old pictures of Mom and gave them to me. I called her JW at the time, not sure if she’d want to be identified. Now, I think it is OK. Her name was Joanne Wisemiller. She passed away, suddenly and unexpectedly, on Jan. 24. It is just unbelievable to think that she is gone. And of course, it stirs up all sorts of thoughts about her and her husband and daughters, who are close to my age, and memories associated with Mom.
Joanne and her husband were Mom’s friends for as long as I can remember, having bonded first over their love of bridge. For years and years, Joanne and Gerry hosted July 4 parties at their house along the Upper Arlington parade route. I’m pretty sure I drank my first bloody mary at one of those parties, sneaking sips when no adults were looking. As I got older, I especially appreciated Gerry and Joanne for their humor, and I always thought they were such fun friends for Mom to have. They also took good care of her.
The last time Mom got drunk (as far as I am aware) was at a party at their house in celebration of a mutual friend’s wedding. Mom wanted to leave before the party broke up, but her keys had been taken away. So she started walking home, but pooped out about a mile into her trip. She called me from a pay phone at a gas station on a busy street corner – but not busy at this time, which was about 1 a.m. Lucky for Mom, I was home from college for the summer and was able to pick her up. I found her sitting in the grass at this corner. When she got in the car, she asked me for a cigarette, though I didn’t even know that she knew that I smoked. I gave her one. And after turning on the lights inside the car, I discovered that someone had used eyeliner to draw a mustache on Mom’s face. It must have been some party, and Mom had obviously had a good time. And the hosts didn’t let her drive drunk.
All this time that I knew Joanne as a kid and young adult, I was not at all aware of her professional life. After I had been at Ohio State for awhile, I discovered that she was a high-level administrator in our agriculture college – but I still didn’t know her history. I learned years later, when I was invited to join the lunch ladies, that her past included communications work at Ohio State – which is what I do. The lunch ladies all worked together years ago in the medical center or in university communications. After I left the medical center communications office, a friend still working there introduced me to the lunch ladies, and I became part of a longtime weekly lunch tradition. I have always felt fortunate that they brought me into their fold. And it was a bonus to see Joanne so frequently, and to be her friend. Since I joined the group about seven years ago, we’ve been a party of six. And now, five.
Joanne and I would occasionally talk about Mom at our lunches. Often, we recalled something funny, or I would give brief updates on her health status. We had that shared history, but we had just as much in common as friends who appreciate good writing and reading, some therapeutic girl time and a cathartic rant. She and Gerry were such excellent partners in life and have always led an incredibly active social life. The lunch ladies and I corresponded over email all day today, worrying about Gerry and mourning our friend. I find myself thinking, as terrible as it sounds, that it’s not fair that Joanne has died and that Mom still lives on with this terrible disease. There is nothing sadder than the gradual and painfully lengthy loss of my mother. The jolt of losing Joanne intensifies the sadness. Mom is not dead, but the Bonnie we all knew is long gone. And now a significant part of her life, and mine, is gone, too.
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.