In general, studies on Alzheimer’s prevention offer no conclusive information on steps we can take to fend off the disease. Genetic predisposition is one (not fully understood) part of the problem. And aging itself is the primary risk factor for Alzheimer’s. But analyses to date suggest that the things people do to keep the body healthy are pretty much the same things that are believed to keep the brain healthy: regular physical exercise, a balanced and healthful diet, positive social interactions, and puzzles and games that function as exercises for the brain.
I am not excessively worried about my own risk for Alzheimer’s. The statistics about it are so grim, and so many cause-related facts are still unknown, so I figure I’m as likely as anyone to end up with dementia. But still, since Mom’s diagnosis, I’ve taken my exercise regimen up a notch with hopes that blood flow to the brain is as good for me as stronger muscles and a healthy heart and lungs.
A nonprofit organization called the Banner Alzheimer’s Institute (BAI) recently invited a number of bloggers to listen in on a briefing about its work to promote international scientific collaborations and additional research as well as new standards of care for patients with Alzheimer’s. I was among those invited to attend the webinar and promised to write a post about it. (We were offered compensation, but I missed the deadline to receive it. But I am not doing this for money – I believe in the effort.)
The briefing was led by Jessica Langbaum, Ph.D., associate director of the Alzheimer’s Prevention Initiative in Phoenix and principal scientist at Banner Alzheimer’s Institute. She described the statistics – 5.2 million current American Alzheimer’s patients, with that number expected to triple by 2050 – and discussed other general information about this particular form of dementia. One tidbit was new to me, though had I ever thought in these terms, I guess it’s something I already knew: Alzheimer’s is the only top-10 cause of death that can’t be prevented, treated or cured.
BAI has created the Alzheimer’s Prevention Registry to help accelerate clinical trials emphasizing true understanding about how this disease can be prevented – assuming it can be prevented. The registry is a community of people willing and ready to take part in prevention research. Those who sign up receive regular email updates on research and scientific advances and, most important, notices about upcoming studies and trials and how to participate in them. Signing up does not equal a pledge to participate, nor does it mean registrants’ personal information is automatically released to any scientists – it simply gives researchers a leg up on recruitment for their studies by creating an existing pool of people who have declared that they are willing to give a clinical study a try.
Dr. Langbaum noted that according to the National Institutes of Health, 85 percent of trials face delays because recruitment is so tough. Many studies about Alzheimer’s in particular fail to meet recruitment goals. Research in this area can take many forms: surveys, one-time visits or a clinical trial involving an experimental drug, diet or exercise program. Two large national studies will begin enrolling participants soon.
Most prevention research to date has been based on short-term studies or large population-based analyses. But what lies ahead could yield the best results: clinical trials in which people are randomly assigned to diet and/or exercise and followed for long enough to determine whether a healthy lifestyle can delay the onset of Alzheimer’s disease or another dementia. For now, Dr. Langbaum said, clinicians say that with regard to diet, what’s heart healthy is brain healthy. And exercising seems to lower dementia risk, and certainly cannot hurt.
This registry is not limited to people with a family history of Alzheimer’s. Most clinical trials require control groups of healthy people unaffected by the disorder under study for comparison purposes. The registry is open to anyone age 18 or older with or without a family history of this type of dementia. The initiative was launched in May 2012 and by Nov. 13, the date of this briefing, 22,000 people had signed up. BAI’s goal is for 100,000 registrants by the end of this year.
I am a believer in research participation. I was involved in a five-year study about nearsightedness and a more recent 12-week study about the effects of sesame oil on cardiovascular disease risk. I also enrolled in a trial investigating the risks of Alzheimer’s caregiving on caregivers’ health that involved only completion of a long questionnaire and a large blood sample. Mom participated in two drug studies shortly after she was diagnosed, but had to leave the second trial because of problems maintaining the protocol when she moved into assisted living.
I have signed up for the Alzheimer’s Prevention Registry; the link is http://endAlznow.org. If you’re interested enough to read this, I’d recommend that you consider signing up, too.
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.
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.
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.
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 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…
It has been weeks since I last visited Mom. I can’t be sure, but it’s possibly the longest I have ever gone without a visit. And as I heard from several people today, I shouldn’t beat myself up about it. That is the past; now I should just look forward. I do feel guilty, but I also resent that guilt, if that makes sense. I am doing as well as I can do at this point in time as Mom’s caregiver. My job has changed significantly, reducing my daily flexibility. And I really believe I am entitled to weekends without Mom. My weekends are busy and exhausting, too, though, especially at this time of year (college football season).
So, I did visit Mom today. And I found her in a typical spot, lounging on a couch in the program area. A woman sitting on the same couch, by Mom’s feet, offered me her seat, but I preferred to pull up a chair near Mom’s head so I could look at her face. I greeted her and she said, “It’s pretty.” She wasn’t looking at me – she rarely turned her gaze toward me the entire time I sat there – so that was not a compliment. But I took it as a positive sign. She spoke a bit, laughed a lot, rested her head in her hand, sometimes closed her eyes as if she were ready for a nap. She did have a couple of clear words: “This is perfect.” And “Heeeyyy, Emily.” I rubbed her head, legs and arms, admired her clean hair and told her I have missed her and that I love her. That I had a birthday recently – that I turned 48 but I am still her baby. And how could that be??
She was sleepy but pleasant.
On my way to the lobby for the care conference, a longtime volunteer said hello. She said she hadn’t seen me in awhile. That was kind of a common refrain. I said I hadn’t visited in quite some time. Had sort of taken a break and had been busy. She is always smiling. And with a smile, she recalled how her husband, who had spent his final days at this same nursing home, was able to tell when she was having a hard time even though she always put on a positive face for her visits. He asked her how she was on one particular visit. “I’m hanging in there,” she told him. His response: “Just don’t let go.” “I’ve always remembered that,” she said.
In the care conference, I learned that Mom’s weight is stable, she eats 75 to 100 percent of her meals, she still enjoys cold cereal without milk for breakfast, she still walks around on a regular basis, she takes frequent naps on various couches and she enjoys being social but doesn’t initiate contact with others. She is quieter. And the aide who is working with her now said that Mom does fairly well with instruction on ADLs – activities of daily living, I believe. I asked if Mom screams at her and says “I hate you” during showers. And this aide said no. She said when she takes Mom to be toileted and changed, she tells Mom that they need to have a private talk. Mom goes along without complaint. I have seen Mom put the brakes on during her walk toward the bathroom, so this surprised me and relieved me. “Could it be a sign of decline?” I asked the other staffers. Maybe so. Another way in which decline ends up better for the patient and the caregivers. And a type of decline that is very subtle. Overall conclusion: no real change in Mom since the last conference three months ago.
The activities director seems to really enjoy Mom. She shows lots of affection toward the patients, and I just sense that she knows Mom has kindness and joy in her and tries to draw it out. She said Mom is not particularly engaged in activities, but she might be more inclined to join in than in the past. And she still likes to dance. She’s been having more good days lately, as if “the light is on in her window,” she said. At a recent breakfast, Mom was really digging in to her cereal. The activities director asked Mom if it was good. Mom responded, “It’s wonderful, Emily.” We mutually enjoyed the reminder that Mom can still speak full sentences from time to time. And I enjoyed knowing that my name is still in there somewhere, even though it’s not connected to my physical presence.
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.
About a week after I complained about Mom’s mood without her Zoloft, the nurse called again. The doctor had been in for the behavior meeting, and he agreed to put her back on the medicine – but at a lower dose. Mom had been taking 150 milligrams a day, and he started her back on 50 milligrams daily. I thanked the nurse with enthusiasm.
About a week or so later, I went to see Mom on a Sunday, not knowing what to expect. She was walking around the program area, and I just popped in front of her and said hello. She greeted me with a smile and a laugh, so we were off to a good start. We walked a little, and talked a little. She seemed a little unsettled, but eventually parked herself on a couch and relaxed for a little while. She was very cheerful, so much like her former self. I was relieved. She said very few coherent sentences or words, but she was in a good mood.
We stood again to walk, and she took my hand. Another good sign. It was almost lunchtime, so I guided her to a table. Turns out, though, that it was the wrong one. Since the state last visited to assess the Alz center, some things have changed. Among them: Each resident now must sit at an assigned table for every meal. This is standard in most nursing homes, but in a facility for patients with dementia, it doesn’t make a whole lot of sense. However, rules are rules. The husband of a patient pointed out Mom’s assigned table. An aide passed by to confirm it, but said it didn’t matter which chair she occupied. With some effort, I convinced Mom to sit down.
I got a bib to put on her and sat down next to her. I had seated Mom prematurely. It was taking awhile for her tray to arrive, so I had to keep her entertained. She was restless and wanted to stand up. I grabbed her hands and encouraged her to stay. She raised one of my hands and kissed it and said, “I love you, honey.” This sealed it for me, that Mom was feeling better now that she was back on her meds. I kept talking to her with a big grin on my face, telling her how glad I was that she felt better and that I loved her, too. She continued to try to get up, so I stood behind her with my hands on her shoulders and just patted her and rubbed her shoulders a little to keep her still. And it didn’t make her mad, thankfully. Sometimes, she is very willful when she’s being instructed.
Finally, her tray arrived: roast beef, mashed potatoes and cooked carrots. Plus cherry pie and strawberry ice cream. Classic Bonnie food. She ran her fingers through the potatoes and took a bite. She took a sip of her hot cereal. And then she lifted her fork to eat some of the meat. I was stunned she could still use a utensil. With her finally occupied, I decided to leave. I hovered my face in front of hers and we pecked each other on the lips goodbye. I haven’t been back in a week, but I look forward to more of the same on my next visit.
I went back to visit Mom today, this time in the middle of the morning to see if it would make any difference in her mood. She laughed when I stepped in front of her and said hello. I took that as a good sign. An aide had told me on the way in that she had recently been taking a cat nap. I sat down in a chair facing her and asked how she was and told her she looked good. She spoke briefly and somewhat quietly. She nodded her head forward as if she were trying to get some more sleep. I gently rubbed her shoulders, hoping it might help her drift off. She had said a few nonsense sentences, but as I sat there with my hand on her shoulders, she said, clear as day, “I don’t like this.” I removed my hand. I moved my chair so I was out of her line of vision, hoping she might be able to fall asleep without the distraction of me sitting there, staring at her and trying to hold her hand. Her head would drop forward, but then she’d raise it again. She had her arms crossed and didn’t look at me much, seeming very withdrawn. She didn’t say she hated me, but she didn’t seem to like me, either.
I decided once again that my presence was no comfort to her, so I kissed her forehead and said goodbye. I stopped two aides and asked if Mom had seemed more irritable lately. “Yes,” one aide said emphatically. She described Mom as more difficult to deal with in the shower and now completely unwilling to sit down on the toilet. She yells out that she hates people and told one aide that she wanted her to die. “Thank you for asking,” the aide said. This convinced me that the lack of Zoloft is affecting Mom’s mood, for her to suddenly have turned into such a persistent sourpuss and not just the occasional willful Bonnie she had been for so long.
I stopped at the nursing station to share what I had heard about Mom’s behavior, as well as my own observations. One nurse immediately added Mom as a topic of conversation to the agenda for the next planned behavior meeting. I asked what had prompted the doctor to try weaning Mom again when it had not gone well the last time it was tried. Well, it turns out that it is a regulatory mandate to try to get nursing home patients off of medications. I am not a hater of the government. In fact, I’m a proponent of big government. However, the more I learn, the more I become dismayed by government regulations – I’m most aware of rules imposed by the state – concerning nursing homes. Especially at nursing homes exclusively for patients with dementia, many of the mandates just don’t make sense. “We’re on your side,” one of the nurses said. In fact, the two had recently talked about how Mom has been much more vocal lately, shouting her displeasure for all to hear.
So, I’m hoping this behavior meeting with the doctor will produce results, and that Mom will be treated again. One nurse said that the doctor might try Celexa instead of Zoloft, because Celexa has been shown in studies to be effective in Alzheimer’s patients through the end stages. “All I care about now is Mom’s mood. I don’t want her to be sad, or scared, or mad,” I told them. I also said I hoped the fact that Mom is more difficult for the aides to work with would bolster an argument in favor of restarting antidepressant treatment. There is no reason why she should have to suffer any more than she already is and has for many years.