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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.”

The same, but not

For quite some time now, when people have asked me how Mom is, I have said that she is roughly the same as she has been for about two years. She can feed herself, walk unaided and she is very talkative, though over time she has definitely lost most actual words. She chatters on and on in nonsense language. I imagine she is telling me stories about what goes on around her, or maybe what she occasionally remembers from her distant past. When I visited her on Wednesday last week, though, there was something new: She was constantly grinding her teeth – but not just pressing her jaws together. She maintained a chewing motion accompanied by a grind with every closure of her mouth. It sounded dreadful, and I worry that this will accelerate the decline of her teeth. Having looked around the web a little bit about this – it’s called “awake bruxism” when it’s done by dementia patients – I see that an estimated 4 percent of Alzheimer’s patients have this symptom.

When I heard her doing it for the first time, I thought it was just related to the immediate situation – that maybe she had some mouth pain. I put my fingers in her mouth and tried to look at her back teeth. This made her laugh, thankfully. She has a reputation for not tolerating any attempts to clean or treat her teeth. I couldn’t see anything dramatic – though I saw the familiar large gold fillings on many of her molars, and that actually gave me hope that decay is delayed in the back of her mouth. I also saw what I thought could be a cavity in one of her lower front teeth, near the gum line. Early on in her illness, Mom had a last appointment with her longtime dentist, and he filled numerous cavities at the gum line. That had been an indication of decline then – Mom had taken good care of her teeth as an adult, but either lost the function or simply had forgotten to brush.

I just don’t want her to hurt. Mom used to be a chronically achy person. She’s not able to articulate that she’s in pain now, but she also doesn’t show signs of distress that might indicate pain. I’m hoping those signals in her brain are all burned out, and that if her mouth should be sore, it just isn’t anymore.

I was at the Alz center for a quarterly care conference. According to the report from staff, Mom does sound about the same. She weighs 184.6 pounds, down 1.8 pounds since April. She eats about 75 to 100 percent of her meals and still gets ice cream and high-calorie cereal with lunch and dinner. Her skin is in good shape – which hasn’t always been the case – and she walks well. She doesn’t participate in activities, but she will occasionally “wiggle” when she hears music. She doesn’t make much sense when she talks, but still has some clear words. She sits alone a lot and naps more frequently. She doesn’t have boyfriends anymore but sometimes hangs out in a group of women. She doesn’t scream in the shower like she used to. “I used to always know when Bonnie was getting a shower,” the activities director said. “But there are no screams anymore.”

I popped into the program area to see Mom before the conference, and found her on a couch, trying to sleep.

Mom snoozing on the couch. I was pleased to see that she was wearing a shirt I recently bought for her at Kohl's.

Mom snoozing on the couch. I was pleased to see that she was wearing a shirt I recently bought for her at Kohl’s.

I sat by her feet and rubbed her calf a little bit, hoping it felt like a mild massage. She opened her eyes and looked at me, holding my stare. I smiled at her but she just gave me the hairy eyeball and closed her eyes again. Within a few minutes, she was twitching, so I knew she must have fallen deeply asleep.

But when I returned to the program area after the conference, Mom was walking around. I joined her and we held hands and continued to walk, with no clear path. She gnashed her teeth over and over. She stopped to dance from time to time, and then wandered into the middle of a bunch of seated residents who were waiting for a visitor to begin his music program. She would stop and dance – wiggle, really, is a good way to describe it – and then move on until she was inclined to wiggle a little bit more. One resident sitting a wheelchair quietly shook her head disapprovingly. I found that both funny and upsetting. Just pausing to look at Mom, I did think she seemed a little more out of it – a little more unpredictable than usual – than she has seemed in the past. The thing is, she was having fun and not being destructive. And of course a resident’s disapproval is probably a fleeting thing.

And so, I think, Mom is experiencing some noticeable decline. It’s not unexpected, of course. It has been surprising to witness her long-term stability. And yet, decline isn’t welcome, either, if only because it opens the possibility of pain, of distress, of difficult behaviors on Mom’s part. I will stay focused on ensuring her mood is good and that she isn’t scared or sad. And then it will be like it’s always been – we’ll just wing it.