Losing a friend-of Mom’s, and mine

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.

Six years and counting

These anniversaries sneak up on me. Today marks six years since I started writing this blog about Mom. And later this year, assuming Mom is still with us – and there is no reason to assume otherwise – we will hit the 10-year mark since her diagnosis. These numbers seem staggering to me, and yet I know of many people whose loved ones had or have had Alzheimer’s for just as long, or even much longer. It is just such a long time to live a very compromised life. The only bright spot is that Mom has no idea how compromised it is – at least as far as any of us can know.

I saw her last week after a quarterly care conference. I had a miserable cold, so I didn’t want to spend much time with her and I tried not to touch her. She looked completely healed from her fall before Christmas. She was her usual pleasant self, sitting alone at a table. I was surprised to find that I could convince her to look at the camera and smile.

There is still a hint of a bruise on her cheek. But she looks so much better.

There is still a hint of a bruise on her cheek. But she looks so much better.

I met three new people at the care conference, which is rare: a new social worker, program area nurse manager and dietary director. They were all very kind and the nurse manager told me I could call him anytime if I had a concern about Mom. I like the staff quite a bit, but that was a first and I appreciated it. Mom was on Tylenol as needed after her fall, but all signs were that she had completely recovered. The activities director feeds Mom sometimes, and she said that Mom has lost the ability to reach for the food in front of her and feed herself. Once something is in her hand, she can get it to her mouth. So that is definitely a decline. I had always planned to visit more frequently when Mom needed to be fed, to take some pressure off of staff. So it’s time for me to think about working a routine of some kind into my schedule. I’m both surprised to find myself at this point and also bewildered that it took so long to get here.

Mom is also napping quite frequently, according to the activities director. Another change, though she has been more and more sedentary as time has passed. It doesn’t bother me to know she sleeps a lot. Frankly, I think it’s better than just sitting alone, not doing anything, which she also does with some frequency. Though that’s just a judgment on my part, that sitting quietly alone is somehow sad or a problem. It’s part of the stigma of a nursing home, I guess, to think that residents are lonely. But in Mom’s case, there has just been a gradual decline in social activity and increasing withdrawal. And I am guessing that it’s fine with her.

It’s not easy

I was holding my cell phone in my hand this morning at 6:34 a.m., looking at the weather report for Columbus, JFK and London, England – my destination over the holidays to celebrate Patrick’s 50th birthday. And then the phone rang, and the Alz center’s number appeared. This is one day before I leave for an overseas vacation, I thought. Of course I’m getting a call about Mom at the crack of dawn. A nurse had to let me know that on rounds last night, she found Mom lying on the floor by her bed. She presumably rolled out. She has bruising on her face. She seems to be OK.

Visiting Mom was on my list of things to do, so I went in the morning instead of after work. She had just finished breakfast. She has bruising, alright. Two black eyes and some extensive swelling of her left eyelid. It looked to me, as I examined the bruises, like she bumped her forehead and her left cheek when she landed. There is now a full-length pad next to her bed. I don’t think the Alz center uses rails on most beds – if residents want to get up, they can get up and venture out whenever they want to. So a pad is the next best thing to save Mom from herself. It was hard to get a good picture of her face – I didn’t want anyone on staff to think I was recording this for any legal reasons. It’s just part of the Bonnie archive.

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I rubbed Mom’s arm and held her hand and talked to her quietly. She burped, which made her laugh. She smiled from time to time, and she talked. I tried to encourage her to stand up by pulling on her arms – the usual method – and she said, “Ouch ouch ouch ouch.” So I am concerned that she might have some other injuries from the fall. Just sitting, she seemed fine and pain free. The nurse said she’ll be evaluated by a physical therapist to be sure. I timidly felt around her face for bumps and, to my surprise, I started to cry. I don’t usually cry when I’m with Mom and I don’t want her to see me cry – I worry that she could sense the sadness. So I wiped away the tears and tried one more time to get her to stand so I could move her to a chair where she could watch the music activity that had started. She said “Ouch” again so I just let her be.

I’ve worried about her mobility since the Christmas party on Dec. 12. That day, I found her asleep in bed but managed to stand her up and walk her out to the program area to watch the Elvis impersonator’s performance. She was a little more shuffly with her steps and definitely less stable as she stood up and then lowered into a chair – both times, she needed substantial help. But when I left that day and asked if she might be a wheelchair candidate, a nurse assured me that Mom was not at all ready for a wheelchair – especially because she hasn’t suffered any falls from a standing position. Shows how little I know after all this time. Despite her general sedentary ways, I do wonder if Mom – who can also be a contrarian – might have some disdain for a wheelchair at this point anyhow.

I couldn’t understand what she said today, of course, and I was so distracted that I didn’t try very hard, either, to offer a positive response. When I did pay attention, I sensed a slight urgency in her manner – like it is more difficult just to make the sounds she makes, which she has always done freely and frequently. Maybe another decline, an inability to vocalize, is ahead of us. Or maybe I imagined it. But her one clear phrase, besides “Ouch,” was easy to hear and understand: “It’s not easy,” she said. It’s not easy being Bonnie. Sometimes it’s not easy being me.

No survivors

Sometime next year, scientists will launch two large studies testing the preventive effects of experimental anti-amyloid drugs on two populations: an extended family with a rare genetic mutation linked to early onset Alzheimer’s, and older people at higher genetic risk of developing the more common late-onset form of the disease. It’s a huge undertaking. The drug trials and overall prevention initiative are described in more detail here.

I heard about these upcoming trials during a webinar late last month hosted by the Banner Alzheimer’s Institute in Arizona, the lead organization behind the studies. It’s one thing to design drugs that act on troublesome plaques in the brain and show their promise in animal studies and cell cultures. It’s another thing altogether to convince people – especially healthy people – to participate in research that can determine how those drugs work in humans.

Hence, the webinar for bloggers, to help raise awareness about the need for research volunteers in Alzheimer’s prevention trials. To this date, we don’t know what causes Alzheimer’s or how to prevent it. We know plaques and tangles are found in the brains of Alzheimer’s patients, but are they instigators or consequences of the disease? And there are lots of hints suggesting that what’s good for the heart and bones is also good for the brain, but no proven drugs or behaviors have been identified to definitively fend off the disease.

To help address this human subject recruitment problem, the institute has created the Alzheimer’s Prevention Registry, which matches researchers with volunteers willing to participate in clinical studies. I signed up for the registry last year and encourage others who are interested in research, or Alzheimer’s, or the greater good, to do the same. It’s easy and available here. Adding your name to the registry does not obligate you to do anything else: It just means that under specific circumstances and after you give permission, you are willing to have your contact information shared with a researcher who can then begin the process of determining whether you are eligible and available to participate in a given study.

The webinar was hosted by Jessica Langbaum, the principal scientist at Banner. In addition to outlining the statistics associated with Alzheimer’s (5 million+ Americans affected, sixth leading cause of death, 1 in 10 adults care for someone with the disease), she said two things during the webinar that really struck me.

She noted that high participation in the registry could send an important signal to federal funders that more money is needed for Alzheimer’s research. So far, 44,000 people have signed on. The registry’s creators would love to see that number grow to 100,000. “There are no survivors to talk about the importance of research,” she said. “We have to do it for them.” I’ve known all along that Mom’s illness is a fatal, terminal condition. But I had never thought in terms of advocacy, that no one can say: “I survived Alzheimer’s thanks to research.”

Along those same lines, Dr. Langbaum made reference to a highly visible survivorship campaign that long ago captured the public’s attention: the pinking of America that takes place during October, Breast Cancer Awareness Month. Well, November is Alzheimer’s Awareness Month and National Family Caregivers Month. Purple is the color representing the Alzheimer’s visibility campaign. And Dr. Langbaum, reflecting my sentiments exactly, said, “I hope someday the NFL isn’t just wearing pink in October. Maybe players will wear purple during November.”

Wouldn’t that be something.

[In the interest of full disclosure: I will receive compensation from Banner Alzheimer’s Institute for participating in the webinar and writing about the registry.]

Sixth Thanksgiving

I used that headline because it’s hard to say. You have to pause between the words. Kind of like it’s hard to have another Thanksgiving meal at Mom’s nursing home. I don’t mean to be ungrateful about the time I am able to spend with Mom. It’s just very interesting, and also dreadful, to arrive at another annual event and think, wow, she has been at this nursing home for a long time. And she has had Alzheimer’s a lot longer than that.

Tonight she seemed subdued, perhaps a little distressed. Her brows were knitted throughout the visit. She talked quite a bit, and responded with a nod of the head a few times – particularly when Patrick gently rubbed her cheek and asked if she liked it. And then, out of the blue, she said, “I don’t know where I am.” Her only coherent phrase.

We took turns feeding her. Reassuring her. Trying to make her laugh or smile. I got a sense at one point that she was feeling a little ornery in response to Patrick, who mercilessly teased her – just like he always used to. It’s very possible that I imagined that, though.

Next to us at the table, I met a resident who has lived at the Alz center for two years. I had never laid eyes on him. I talked to his wife a little bit, and she said he spends most of his time in his room. And I overheard a few things she said to him: “We went to St. Croix and stayed at your friend’s place.” “You golfed in Scotland.” “We could have used a few more good years together since we got a late start.” Very matter-of-fact. And he was engaged in the conversation. It was both comforting and quite sad to hear.

First attempt at a selfie. I wanted a shot of all 3 of us.

First attempt at a selfie. I wanted a shot of all 3 of us.

Success, sort of. It was tough to convince Mom to fully open her eyes.

Success, sort of. It was tough to convince Mom to fully open her eyes.

If you put your face close enough, Mom might offer a kiss.

If you put your face close enough, Mom might offer a kiss.

Patrick and I took turns feeding Mom. She dutifully opened up every time the spoon neared her mouth. And then, abruptly, she pushed her plate away. She rubbed her eyes and scratched her ear. I’m amazed that she still knows how to address those physical sensations, that she can scratch an itch and even pick her nose. Maybe it’s regression and disinhibition, but considering that her brain has lost almost all language, there is some powerful information still in there that lets her find a way to fix what’s bothering her. Similarly, when Patrick and I started taking pictures and getting into her space, she crossed her arms and hunched forward, as if to protect herself from what could have felt like a physical threat. And yet, we were hugging and kissing her.

I explained to an old support group friend that I don’t visit Mom as often as I used to, and that sometimes when I do visit, I’m an annoyance to Mom. Or at least there was a period when that was the case. She doesn’t visit her husband as much as she used to, either. “He doesn’t miss me,” she said, as we both nodded, knowing we are on the same page in many respects about this disease. “They don’t miss us.”

Unhappy anniversary

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.

Alzheimer’s means never saying a real goodbye

Over the weekend, I was channel surfing, and I landed on “Stepmom,” a movie with Susan Sarandon and Julia Roberts that I never saw in the theaters. I watched the last half of it, distracted by Facebook on my phone and not particularly absorbed in the movie. But near the end, during scenes featuring Sarandon and her two movie children, I got choked up. It was Christmas morning, and she was giving them handmade gifts covered with photos of her and the kids. She had metastatic cancer, and the presumption was this was her last Christmas. And each kid got to talk openly about her illness and how much they’d miss her after her death.

And I cried as my mind got to work, wondering what was really bothering me. It didn’t take long to figure it out. Alzheimer’s has been called the long goodbye. But that is misleading. I lost the mom I had known all my life many years ago. By the time she dies, she won’t comprehend any effort on my part to say goodbye. The truth is, at least in my case, that Alzheimer’s robs us of the chance to say a goodbye that has meaning. We are so focused on maintaining function early on, and learning how to interact with our loved one and her damaged brain. Keeping the peace, ensuring safety, striving for happiness – these are the concerns that consumed me before and after Mom’s diagnosis, when she still lived alone and then in assisted living. I thought a lot about her future, and what was in store for her, and for me. I wondered how long it would take her to decline enough to be receptive to a move to a nursing home for patients with dementia. I wondered when she would stop knowing who I am.

It never occurred to me to sit Mom down and discuss my wish to tell her how much I love her, to assure her I will be there for her, while she still might understand why I was saying this kind of thing. We didn’t get to have a heart-to-heart with the recognition that soon she would be gone. An Alzheimer’s patient is doomed to an inevitable outcome, but there is still so much uncertainty and fear about that future, and an overwhelming desire on a caregiver’s part to protect the patient from harm – physical or emotional. To talk about death with these fragile patients would be cruel if they could understand and a one-sided conversation once their comprehension is significantly compromised. Alzheimer’s sucks in so many ways, and it has taken until now – with the help of a movie, for god’s sake – for me to realize how particularly sucky this unfortunate truth is, that despite all the time we’ve spent together and all the time I will spend with her until she dies, Mom and I will never get to say a real goodbye.

Avoidance

It has become pretty clear that I don’t visit Mom very frequently these days. I don’t write about every visit, so I see her more frequently than I blog about her, but it’s fair to say that on occasion, I let a significant amount of time pass between visits. I don’t think I would say I am avoiding Mom. When I’m with her, we laugh and smile and chat and walk and hold hands. I give her little massages and run my fingers through her hair. I examine her and, for so long, I’ve seen nothing that causes alarm because her status has been stable. What I’m avoiding, I’d say, is what follows: Every time I leave the Alz center, I choke up on the way out the door. I rarely produce real tears, but without fail, I say, out loud but to myself, “Oh, Mom.” I think about what could have been if she hadn’t gotten sick. I wonder if she comprehends anything I say to her. Now that I am middle-aged and sense that I am like her in many ways, I miss talking to a mom who has a thoughtful response based on her own experiences.

This avoidance is also behind my reduced blogging, I suspect. While the reflection on Mom’s life and illness has done me a lot of good over the years, it also can be taxing. And it can hurt. And so, over and over, I let another evening go by without writing about Mom.

I was wrapped up earlier in August with the fact that as of Aug. 28, Mom would had lived at the Alz center for five years. Five years. Seems incredible to me. For days and days, I knew the anniversary was coming up. And then it came and went without any notice from me. I couldn’t believe it when I realized that. I may have been especially looking forward to the long Labor Day weekend. Maybe busy at work. But it didn’t occur to me that the anniversary had passed until I went to visit on Labor Day, Sept. 1.

I wondered if that was something else to avoid – the mixed emotions I have about Mom reaching a five-year anniversary in this nursing home. I hope it’s become clear that I don’t wish that she would die. But there is little joy in an anniversary related to a prolonged existence like this, even if she can laugh and dance and enjoy her meals. The good thing is, of course, she doesn’t know she is living under terrible personal circumstances. But I know. Every day, and every night.

I find her stability mostly bewildering – how can it be that her decline has been so slow for so long? That for so many years her brain’s slate has been “wiped clean” as I tend to put it, as far as memory and clear thinking are concerned, but her physical functions persist? The most evident change is the loss of words despite her constant vocalizing. Some words still slip out, but rarely. Whenever someone asks, I say she can walk, talk and feed herself. She shows signs of enjoying social interaction with me and others. She still cracks herself up, or laughs at something I say or do. Her default setting is content for the most part. Even her combative approach to showering and hygiene has tapered off.

An aide told me when I was there on Labor Day that he has Mom figured out: When she wakes up in the morning, she doesn’t want to be rushed. She needs to sit up on the bed and collect herself, shake the cobwebs out, before she wants anyone helping her stand, go to the bathroom and get dressed. He is also the aide who, in the past, said that when Mom was angry in the shower and yelled “I hate you,” he would reply, “I love you, Bonnie.” The Alz center staff is so terrific.

So, I’ve stopped avoiding long enough to mark this occasion, the start of Mom’s sixth year at the Alz center. One can only guess what it might bring.

Mom’s brain, Mom’s teeth

Mom was grinding her teeth again the last time I saw her. And talking. And smiling, even though I had nudged her to wake up from a nap. She seemed so sweet, and I found myself talking to her in such baby talk – more so than I ever had before. I kind of disgusted myself. But then again, she responds to kindness like that. She smiles. I imagine her hearing isn’t great and her comprehension is close to zero, so I base my behavior on what I observe in her reaction. It is one of those dignity things, I guess. I don’t want to minimize her status as a grown woman – as my MOTHER. She is not a child and certainly not a baby. But that is essentially what she has become in my mind, and, let’s face it, in reality. She is the closest thing to my own child as I will ever experience, and her development is going backwards. So I talk to her, quite often, as if she were a baby.

Shortly after the last care conference, I heard from a nurse and the facility’s visiting dentist about Mom’s oral health. The nurse called just to inform me that for 60 days, Mom would receive an oral rinse treatment. Mom can’t follow instructions to gargle, so the plan was to apply the rinse with a swab along her gum line. A day or so later, the dentist left me a message to call her back. I was mortified, assuming the pulling of Mom’s teeth was set to begin. I was pleasantly surprised to hear that is not the case at all.

The dentist thought Mom should receive Ativan before the visits so she can be mildly sedated to tolerate a cleaning. I thought I had given blanket approval for that before. I am completely open to that, and it is frankly good for Mom not to get distressed. And to get her teeth cleaned. The dentist had noticed one of Mom’s front lower teeth is broken at the gum line – I wasn’t sure what was going on, but I’ve seen darkness on that tooth before and thought it was a cavity. The dentist said there would be risk of bone problems and infection if that tooth were removed, so she wants to leave it. Such excellent news. It helps that Mom receives a drug to strengthen her bones. Other lower front teeth are loose, but as long as they stay put, there is no problem. Relief, again.

The dentist had not noticed Mom grinding her teeth, but she said that behavior is not a dental problem. It’s a neurological problem. I get that, completely. She says with dementia, it comes and goes. So far, it hasn’t seemed to cause visible damage to Mom’s teeth. We concluded by agreeing that Mom should have more frequent cleanings than Medicaid allows, at a $45 out-of-pocket cost twice a year. Mom has that to spare, and if it reduces the chances that she will lose her teeth, I would pay for it myself.

Revisiting NY Times asks: Are caregivers healthier? Jury’s still out

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.”

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