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.”

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.

Birthday … celebration?

Mom is 77 years old. Her birthday was Friday, June 6. I tend not to like her birthdays. They are stark reminders of her prolonged existence in this compromised state of being. I don’t want her to die – I feel like I should make that clear when I talk about death. I don’t wish death for her. But I am sad about how long she is living with this disease. There is a difference between those kinds of thoughts about Mom, for those who might quibble. There really is.

It’s been a long time since birthdays meant anything to Mom. Or Christmas, or Mother’s Day. Or my birthday. She was present at the surprise party Patrick threw me on my 40th birthday. She kept the secret, and she bought me a shirt at Kohl’s. About two weeks later, she was diagnosed with Alzheimer’s. What a struggle that must have been for her, to pick out a gift for me, wrap the box and navigate the streets of the city to get to the party at a restaurant Downtown. By my 41st birthday, there was no need for her to even know about it or think about it anymore. I’m 48 now. Birthdays are not that important to me, really. But they obviously generate thoughts of the past, of elapsed time. Of better days, in Mom’s case.

I visited Mom as she was finishing lunch on Friday. I took a caramel Frappuccino for her birthday treat. My sister Laura always gives Mom a Frappuccino when she visits. Mom really enjoys the sweet and cold sensation, clearly. She also knows, when she senses and/or sees the straw hover near her mouth, that she should suck on that straw to get a drink. I find that amazing, that that one physical motion has stayed with her when she really does it very rarely. She can hold a cup, too, but on her birthday she was just a little busy and distracted, so I held it for her. When she neared the bottom, I took off the lid and let her slurp up the remaining watery whipped cream. She knew how to do that, too.

Mom sipping her sweet treat.

Mom sipping her sweet treat.

The weather was really lovely that day and the aides were taking residents outside to the courtyard behind the building. I walked Mom toward the hallway leading to the door to see if she might enjoy going outside. A gust of wind came down the hall, and Mom said, “Oh, no” and held her hands up to her chest as if to protect herself. The activities director was holding the door open and she said, “Sometimes they don’t like the wind.” I have alternating feelings of sadness that Mom doesn’t have any interest in stepping outside on a beautiful late spring day and ambivalence because, well, she doesn’t know anymore what she’s missing. But it’s a reminder of just how much of the old Bonnie is completely gone. She appreciated pretty days, and especially those with low humidity.

Mom got drowsy as we sat and chatted.

Mom got drowsy as we sat and chatted.

We walked briefly, and as we sat, Mom considered taking a nap right then and there. But she pepped up again, and after we nixed the idea of going outside, we just crossed the program area aimlessly. And aide came up and took Mom’s hand. “Sweetie pie,” Mom said to her. I loved that, and I think she liked it, too. It was time for Mom to go to the bathroom and get cleaned up after lunch – she is a frequent soiler of her clothes despite the bib she wears when she eats. And then she was going to be put down for a nap. Made sense to me, since she is always drowsy after meals. But I didn’t know that had become routine. Good to know for future visits.

I put my face right in front of Mom’s and puckered up my lips, and she made a small smooching motion for a quick little goodbye kiss. Another physical memory, somewhere deep inside.

Minimalist Mother’s Day

The Alz center hosts a Mother’s Day event every year: punch, cookies and sandwiches in the main dining room close to the lobby. Parties at the Alz center have become more complicated as Mom’s disease has advanced. Even though her mood is mostly good and she has been stable in many ways for years now, she doesn’t always respond well to crowds and noise. This year, I had to call to confirm the time of the party because I had lost my invitation. It was 2 to 4 p.m. Patrick was going to come with me this year. We decided to skip the beginning, when it would be most crowded, and attend as things were winding down.

Well, when we arrived at around 3:30, things weren’t just winding down, but had been cleaned up and put away already. “Better late than never,” the receptionist said in greeting us. I like her a lot, and I’m pretty sure she meant that as a funny, throw-away line. But I found it hurtful. She knew I had called ahead because she was the one who had answered the phone. Our late arrival was deliberate. We weren’t blowing Mom off. I don’t have much of a visitation track record these days, I guess, but I don’t want to be judged about it. Only I am permitted to give myself a hard time about that, as far as I am concerned.

Mom on the lobby couch, not really acknowledging that she has visitors. I like the shirt she's wearing - I bought it for her last spring when aides asked me to get her more clothes.

Mom on the lobby couch, not really acknowledging that she has visitors. I like the shirt she’s wearing – I bought it for her last spring when aides asked me to get her more clothes.

Mom was lying on a couch in the lobby with three plastic leis around her neck – a sign of the celebration we had missed. Someone in passing told me that a staff member had been sure to get Mom some snacks during the party. That was fine – though I would have been able to do that had the party lasted as long as advertised (I am obviously feeling some leftover hostility about this). In past years the staff members have handed out flowers or small gifts for family members who visited for the party. I guess leis were the give-away this time. We stood over Mom and talked to her for a little while, and then decided to get her up for a walk. Mom was agreeable to this. I swung her legs around to the floor and Patrick heaved her up, holding onto her hands. We walked toward the program area, Mom in the middle, holding hands with both of us.

We wandered around in circles as a threesome. Mom chattered away, and we offered affirmative responses when that seemed appropriate. I sensed she might be a little tired so we guided her to a couch – though another resident was approaching the couch at the same time, so we made a detour. We took her toward another wing and eased her onto the couch there. She immediately hoisted her feet up, lay down and curled an arm so she could rest her head on it. This was a signal, as far as we were concerned, that she was done with the visit. No ill will or unpleasantness – just time to lie down and close her eyes. We kissed her goodbye and left, only about 20 minutes after we had arrived. It was sufficient Mother’s Day celebrating for Mom, and that’s what matters most.

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