Rapid decline

Mom’s disease has progressed quite quickly. I’m both alarmed by it and also oddly comforted – because maybe after such a long period of stability, she won’t linger in what seems to be a less pleasant state. And that will mean she is at peace. After feeding her today, I talked briefly with the receptionist at the Alz center. I said I’m concerned that at this point, she could be suffering. The receptionist, whose husband died of Alzheimer’s, doesn’t think so.

Mom had a birthday since I last wrote, and is now 78 years old. Patrick, his mother and I left for vacation on her actual birthday, June 6. I visited the night before to feed Mom dinner and wish her a happy birthday – as if that mattered. It still feels like something I should do even as I know it’s a meaningless gesture. (Or is it?) The day after we returned, I went to feed her Sunday lunch. I was surprised by how I found her.

She was in a wheelchair - a first - and slumped over, asleep, just before dinner. I have rarely seen her sleep like that.

She was in a wheelchair – a first – and slumped over, asleep, just before dinner. I have rarely seen her sleep like that.

I sensed from casual conversation that Mom was in a wheelchair as a matter of convenience, because she had begun to have trouble even just standing, let alone walking. I got a call a few days later, and was told that aides had found a blister on Mom’s foot, which could have been part of her problem. So treatment was planned for the blister, and I said that sounded great.

I didn’t make it to the Alz center on Father’s Day. Today, two weeks since the last visit, I arrived just in time to feed her lunch. And this is how she looked.

Mom was having a fitful sleep. Her legs were wrapped up in padding, she had a blanket over her lap and she was in a specialized wheelchair that tilts.

Mom was having a fitful sleep. Her legs were wrapped up in padding, she had a blanket over her lap and she was in a specialized wheelchair that tilts.

Thankfully, being numbed by this discovery kept me from unleashing fury on any staff members. I had not been told she was permanently in a wheelchair and I certainly knew nothing about padding wrapped around her calves as a treatment for her legs. For as long as she has had Alzheimer’s, Mom has had very swollen calves, ankles and feet. Maybe they’re worse now. But if they are, no one told me. I tend to give the Alz center the benefit of the doubt. But this was stunning to me, to see Mom like this without a phone call to warn me.

It was also stunning to see her take on the frail look of a very advanced Alzheimer’s patient, which, of course, she is. I woke her up to eat and she did open her eyes and dutifully accept her food and drinks. Mom would occasionally vocalize, but her voice was very raspy and weak. I talked to her about my brother’s upcoming visit and complimented her shirt, which I believe my sister bought for Mom when she moved from assisted living to the nursing home in 2009.

At one point, I asked her if she liked her mashed potatoes. “Yeah,” she said. I laughed, happily surprised to hear an appropriate answer. And she gave a very slight smile. Two weeks ago, she had smiled broadly during lunch – almost a smile of pride after answering one of my questions. I enjoy those brief looks of recognition, but they also haunt me – is there more to Mom than meets the eye? Could it be her physical decline shields an ability to express an emotion? I know, intellectually, after her many years of a “slate wiped clean,” as I have described her cognitive abilities, that this is highly unlikely. But seeing her change so rapidly fills me with questions about what might be going on in what is left of her mind.

The weight

For so long, I had no change to report about Mom. She walked, talked and fed herself and maintained those functions without much obvious decline for quite some time. I wondered how long it could possibly last. Sometimes I lamented the fact that her illness was prolonged by this stability. But she was predictable, for a very long time. And I could have pleasant visits with her because she would laugh, she could enjoy a root beer or a Frappuccino, we could take a walk and hold hands, and she could speak the occasional meaningful phrase. She noticed when I arrived and she could still pucker up and give me a kiss when I said goodbye.

Now, those functions are basically gone. I’m told she can walk once people help her stand up. But I can’t lift her out of a chair by myself because she does nothing to assist the effort. She doesn’t vocalize much at all, and almost 100 percent of what she says is nonsense syllables. I can’t even guess what the sounds mean, but I try to maintain a steady stream of affirmative responses. She might occasionally break into a smile. She very willingly eats whatever she is fed. But she remains impassive. Eating doesn’t seem to give her any pleasure, as it has in the past. Even pie doesn’t produce much enthusiasm.

I once engaged in a comment thread on a New York Times blog post about whether there could be joy with Alzheimer’s. Sure there can, I said. At that time, Mom could be a source of joy for me, and I hoped my attention gave her some joy. She hadn’t known me for a long time, but she liked me. She saw me as a pal. She might think I’m a pal now, but she can’t show it. I’m afraid that any joy associated with visiting with Mom is gone, for her because she’s a blank slate and for me – because she’s a blank slate. This reality is weighing on me.

I am pretty confident that I’ll get used to this, especially if Mom’s decline continues at such a slow pace. It will become the new normal. That will be helpful because right now, I don’t like myself very much. My outlook on so many things – Mom, employment, housework, yard work, summer heat, my dog’s health, my own aging, travel, exercise, free time, finances – you name it – is grimmer than usual. That’s saying something. I’d like to snap out of it.

Melancholy on Mother’s Day

I’m used to hating Mother’s Day at this point. The marketing was the first thing to get to me when Mom was no longer a candidate for a gift – because she couldn’t understand the concept of a gift anymore. The marketing gets more obscene every year so I just try to dismiss it. I don’t know why this year has been sadder than usual for me. But I haven’t enjoyed the Mother’s Day season and I’m glad today marks its end. (I acknowledge that many people enjoy this holiday and I am hardly the only person who finds it difficult. I also acknowledge I am a big downer. That’s why I waited until bedtime to post.)

It being Sunday, I fed Mom her lunch. This has become a routine, though it is still somewhat new. I was late and an aide was feeding Mom when I arrived but she was happy to be able to tend to something else. Mom dutifully accepted bites of pork, cooked carrots, hot cereal and fruit cocktail. I dribbled water down her chin only once. I noticed that she would pick her teeth with her finger whenever the meat got stuck. She also scratched her ear. She barely acknowledged my presence, and she made only a few minor reaches toward her tray as if there were still some muscle memory there about what it means to be eating. But she knew how to remedy that sensation of having something stuck in her teeth. And she knows how to scratch an itch. Her cough reflex is in good shape, too. She had a minor choking response to a bite of fruit cocktail and she was able to cough her way out of it. I was watching pretty intently, wondering if I was going to have to help her. She ended the coughing with a very big sneeze. Taking all this in, I couldn’t help thinking that her physical decline is distressing, but its unpredictability is also sort of fascinating. I just don’t understand how some abilities still exist while others don’t. But nobody understands these things, which is why Alzheimer’s is such a disaster of a disease.

A nurse who knows me came by and tried to pep Mom up, patting her back and nudging her shoulders. She asked Mom what my name is, and told her repeatedly to wake up and have a visit with me. Mom did show some signs of life – she laughed a few times and spoke a few nonsense phrases. I don’t know if she ever says Emily anymore. She barely opened her eyes. I appreciated the nurse’s effort. But I don’t like the idea of having to convince Mom to be lively. I did move my chair to her other side because her focus seemed to be directed that way. I talked to her a lot, telling her about my brother and sister and nieces and how they’d all like to be able to talk to her on Mother’s Day. And I mentioned that Patrick ran a marathon. Shortly after the nurse walked away, I said, “Hey, Mom, are you in there?” And she said, “Yeah.” So interesting. And a little bit later, she said, “I like you.” I was getting ready to leave, and I said, “I like you, too. I love you.” She was starting to drift off.

I couldn't get Mom to open her eyes. She did just once while I was there - to scratch an itch on her nose.

I couldn’t get Mom to open her eyes. She did just once while I was there – to scratch an itch on her nose.

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We did hold hands from time to time. And sometimes she gave my hand a little squeeze.

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And then, she dozed off. This is part of the routine.

It was a teary week leading up to this day. Many of my friends have lost their mothers, and Facebook was full of posts about daughters and sons missing moms who have passed. I can relate. And not. The toughest thing was a conversation with a friend over breakfast on Saturday. Her relationship with her mom is complicated. But she talked about her mom’s insights into some professional relationships my friend has, and it struck me how much attention her mother is paying to her life. She knew names, events, emotions, all kinds of things. My mom was an intellectual. She liked a good conversation. I’ve missed out on 10 years of her listening, and asking questions, and offering support. And just knowing me.

Care conference as…therapy?

There has been a significant leadership turnover at the Alz center. When I arrived last week for my quarterly care conference, the coordinators didn’t expect me because I hadn’t RSVP’d that I would be there. I never do that. I let them know only when I cannot be there. So they weren’t prepared. The director of nursing just met with me privately instead.

And we just talked. Mom’s meds haven’t changed. Her weight is stable. She’s a good eater. I noticed she was sitting on some kind of blue pad during my previous visit. He told me that’s a sticky substance to keep her from slumping down in her chair. If she does slump, she appears to have no inclination and/or no ability to hoist herself back into a more upright position. She also will not stand up unassisted anymore, and it takes two people to lift her. Once she is up, she will walk OK. But she doesn’t seem to have much interest in standing.

I don’t know this nurse manager well at all, so we were getting to know each other. I told him I had really reduced my visitation for awhile, but that now my intention is to feed Mom lunch on Sundays. He said any visit at any time is good for Mom and helpful to the staff. He actually made a bowing-down motion toward me and said, “Bless you for coming in to feed your mom.” Sometimes, he is the one who feeds her. And sometimes, she’ll say a few understandable words. He described Mom as “sweet as pie.”

I told him a little bit about my past with Mom, that being her caregiver was not initially easy for me, that I held a grudge against her for a long time for being a rather absent mother and an alcoholic, that over time, though, I had come to forgive her and even think she had done well as a single mother working full-time. That now, she and I are pals, and that this has been a very meaningful period of my life and always will be. She hasn’t known who I am for a long time, but she seems to detect my interest in and affection for her. He thinks she knows I am family. There is no reason for me to argue. No one can know anything for sure about her.

He talked about his own parents. He helps with their care now. Many kids experience the role reversal, taking care of their parents. That fact is not lost on me. I see and hear evidence of it almost every day.

I went to look in on Mom after the talk, and she was slumping in a chair. Two aides stood her up and then sat her down with her butt against the back of the chair so she would stay upright. There is a shortage of the blue sticky stuff, they said. I just said hello and gave her a kiss. It was a weekday and I couldn’t stick around.

I fed her this past Sunday. She barely opened her eyes during the meal, but she would open her mouth if I touched her lip with the fork and spoon. In past weeks, she was willing to eat the cooked spinach, but this time she seemed a little startled by it. I took that as a sign she didn’t like it. It’s always hard to help her take a drink of water or juice without a little spill. She had a hand up against her chest under her bib, and I pushed on it to get it out of the way while I was giving her a drink. Her eyes opened wide when I did that. I must have hurt her a little. But she didn’t yell. She really didn’t say much at all.

A few key phrases

When I can, I will feed Mom her lunch on Sundays. My work schedule is unpredictable, so establishing a weekday routine might be more than I can manage right now. But on Sunday, I can be helpful. And I have time. There is no need to rush.

Today I found Mom sitting at her table, waiting with some other ladies for the lunch trays to be delivered. I tied her bib on and started talking to her. She was peppier than the last time I saw her, which was a relief. But her talking was as bad as it has ever been – just a series of nonsense sounds really no more complex than nah nah nah nah nah.

And then she said, “I love you.” It wasn’t perfectly clear, but I knew that was what she said. I told her I love her and wrapped my arms around her awkwardly, since we were both sitting in chairs. And she patted my arm. She might say that 10 times a day to the staff. I don’t care. She said it to me, and it was meaningful. I could have had a good cry then and there, but I was able to suppress it.

Once her tray arrived, we focused on the food. I am getting better at preparing small bites. I cut the breading off of her chicken to make it less chewy. I gave her drinks more frequently than usual. I was patient. That is, until she started grasping her bib in her hand and raising it to her mouth, and eventually biting it. I worry that that is a sign that her teeth hurt, but staff members have told me it is more likely just a disease-related behavior. I took her bib off of her so she wouldn’t do that anymore.

Midway through the meal, she said, “Where do you live?” I told her I live in Clintonville, where I grew up, and that there is a new restaurant at the bottom of the street we lived on, and that it is weird to see the street corner changed so significantly. A nurse came by to give another resident some medicine, and she said Mom had been laughing earlier in the day. “She’s loud when she laughs,” she said. That was good news. I think Mom might still have the ability to crack herself up.

After she finished eating, a fairly new resident came up and appeared to want my chair. So I let her sit there and I got another chair and sat to Mom’s right. I rubbed her back a little and just planned to stick around until she got sleepy – which was almost immediately. I gently rubbed her head and ran my fingers through her hair. “You’re a good woman,” she said. “It makes me feel good to hear that,” I replied.

Not there much; not much there

And just like that, though of course not at all just like that, Mom is not very communicative. Doesn’t display much of a personality. Barely vocalizes. Can’t seem to sit herself up in her chair. Rarely walks anymore. But does still have an appetite and eats her entire meal.

I am pretty sure, but not absolutely certain, that the span of time between my last visit and my visit today was the longest in the history of her illness that I had gone without visiting Mom. More than a month. As I was walking into the Alz center, I was thinking, people have told me I’m a good daughter. I don’t feel like a very good daughter today.

And yet, I don’t have much to offer. Or, more accurately, Mom doesn’t have much capacity to absorb the affection I show to her or the stories I tell her or the compliments I give her. That’s a giant rationalization, though. I’m a believer, in many instances, that something is better than nothing. Some human contact is probably better than no human contact for someone with advanced Alzheimer’s. The staff and other residents interact with Mom from time to time, but only I am completely devoted to her – when I’m there, anyhow.

She couldn’t seem to open her eyes for quite awhile after I arrived. I had intended to get there in time for lunch so I could feed her. Turns out I was early. Mom’s tray is on the second of two carts so we sat at her table and I rubbed her shoulders and arm and tried to encourage her to wake up. A table mate chatted with me from time to time, saying she liked my hair and my earrings. The last time I had visited at lunch, this same resident was very weepy and a little bit difficult. Today, she was calm and seemed content.

When Mom’s tray arrived, I started to feed her bites: pork with gravy, scalloped potatoes and cooked carrots. Red jello for dessert. Except for opening her mouth when the fork was within range, she remained unchanged. No shift in position, no real awareness that food was on the table. I praised her for every bite. She occasionally seemed to respond with a little smile and once, a laugh.

When she was finished, I tried to stand her up to take a short walk. I pulled on her arms and she said, “Ouch ouch ouch,” the same way she had after her fall before Christmas. I got behind her and tried to lift her, all the time saying I thought it would be fun to take a walk. “I don’t realize,” she said, before completing her sentence with nonsense words. It’s interesting to me how a negative experience can bring out some understandable words. I gave up and pushed her chair back toward the table. Her toe got stuck against the foot of the table. I pulled on her leg and she yelled out in pain.

A nurse came to check on her and took off her sock. No signs of an injury to the foot. She told me it takes two people now to get Mom out of a chair. She doesn’t walk much at all. After lunch, the aides put Mom to bed for a nap. That I knew. I don’t know what had come over me, to think about taking a walk. I have always been against the idea of pushing patients beyond their capabilities or their interests, because that is usually something a family member needs but it doesn’t necessarily benefit the patient. And there I was, trying to satisfy my need to see that Mom can still walk when she clearly had no interest in getting up. And no need to get up, either.

She can still tell when I am coming in for a kiss goodbye. But she opens her mouth. She doesn’t know how to pucker anymore. On the way out, the receptionist said Mom isn’t very with it anymore, but she’s a good eater. Eating might be the only pleasure left for her. Human touch and conversation, at least today, had no effect.

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.]

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