Archive for November, 2013|Monthly archive page

Thanksgiving No. 5

I just finished my fifth Thanksgiving dinner at the Alz center. It wasn’t easy. Mom was restless. I had to have help from a staff member to get her into a chair. And then she wanted to get up. I essentially held her down in her seat for about 10 minutes while we waited for the food to arrive. I thought the meal would occupy her, but Mom wasn’t really all that interested in eating. She took a few initial bites with her fingers. I put her silverware on her plate to see if she’d give it a try, but she didn’t. She worked on it long enough for me to eat most of my food on this first round. She got up and wandered over to a table of six and just stood there looking at them. I got up to retrieve her – I was afraid she might try to take someone’s food. I led her back to our table and sat her down again. I fed her a few bites of corn and mashed potatoes, and buttered a roll and fed part of it to her. I took a few more bites of my food. And then she got up again.

This time she sat in an easy chair for a bit. I went to sit next to her. She got up. I followed her around, held her hand, walked with her. A staff member brought pies around and I got a piece of pumpkin pie for Mom. We visited another table and I fed her pieces of the pie. Another staff member came by and squirted some whipped cream on what I had left. I was using my fingers, just like Mom does. And after she finished hers, I quickly ate most of a piece of pecan pie (with a spoon). I can’t resist pecan pie.

I cleaned up our table as well as I could and hung out with Mom on short walks in different directions. As we walked to a couch, a woman at a neighboring table walked by and put her hand on my shoulder. “She’s keeping you busy tonight,” she said. “She’s a busy lady.” I said, “I imagine it’s what it’s like to have a small kid.” I then joined Mom on the couch. She had reclined on her side with her legs curled up. I sat by her head and stroked her hair, hoping she’d be able to relax. This entire time, she had been muttering constantly. I couldn’t make out many actual words, but when the social worker came up to say hello to us, Mom very clearly said, “I’m ready. Who’s going?” While she was lying on the couch, though, she remained pretty quiet. For a few minutes.

Another family member I had never met before stopped to say hi, telling me her son had lived at the center for about a year. He is 58. She lives in Florida and doesn’t see him too often. I wonder if that is even worse than having a spouse with Alzheimer’s – to have a child with Alzheimer’s. Seems hard to imagine.

And then Mom got up, and I decided to let her strike out on her own. I worry that my presence sometimes is not welcome – and of course it’s not personal. There was a big crowd there and I do think that bothers her. And I was in her face a lot trying to convince her to do things my way, and I suspect that was stressful for her. So I went to pick up my jacket, and the mother from Florida waved me over and introduced me to her son, and I recognized him but haven’t really ever talked to him. She introduced me to her granddaughter, and she offered her hand. “I have pie on my hand,” I said, reaching toward her tentatively. She shook anyway. Relatives of Alzheimer’s patients understand these things. We chatted. And then I said I oughta get going, and the mother from Florida stood up and hugged me, and she was very matter-of-fact about it, as if we had been friends for years. And yet there’s a good chance I’ll never see her again. But relatives of Alzheimer’s patients understand that other patients’ family members can always use a hug.

Eight years

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.

A test of conviction

I will try not to cheat on NaBloPoMo by citing articles every day. But while I’m thinking about the New York Times, I’m reminded of a story that I think is relevant to caregivers of all kinds. This story, titled “A Life-or-Death Situation,” ran in the Times magazine in July. I was drawn to it right away because of the cutline on the lead photo: “As a bioethicist, Peggy Battin fought for the right of people to end their own lives. After her husband’s cycling accident, her field of study turned unbearably personal.”

I have complicated emotions about Mom’s slow decline. I just remain thankful that her existence is punctuated by hearty laughter and the consistent joy of consuming a good meal. But what I’m experiencing, I imagine, is minimally painful compared to what spouses of Alzheimer’s patients endure. What do they wish for? The comforting presence of their constant companion, or a merciful end to the suffering?

In this story, a man is critically injured in a bicycle accident. His wife, an academic who has long been a very public proponent of the right to die, finds herself wanting her husband to live – and wanting him to want to live. It’s a moving story. The follow-up was published a month later.

The cover story is a long read, but worth it if the subject is of interest to you.

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

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.”

Trying something new

I have seen on other bloggers’ sites that November is National Blog Post Month – also known as NaBloPoMo. I have decided that I am going to try to achieve what this movement is all about: a blog post every day of the month. I think I will benefit from the therapeutic value of this kind of writing. It surely has the potential to result in more visits with Mom. I hope it will also encourage me to explore emotions that I don’t even know are there. Patrick has suggested that lately I have not given proper due to my emotions about Mom, and that is manifesting in unfortunate ways: mostly, a short fuse fueled by a lack of perspective.

So, we’ll see how it goes…