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.
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 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.
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.”
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.
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.
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.
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.
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.
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 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.
I see people asking for prayers on Facebook with some frequency, for themselves or for a family member or friend who is in distress. And people respond. I see it all the time. It’s not something I do – I don’t actually pray, nor do I ask for prayers. If people offer up good thoughts and prayers to me – for example, many people sent good wishes when our dog Spencer was facing amputation surgery – I appreciate that. Very much. I convey my positive thoughts when I think it’s appropriate and I truly wish that something about the positive energy I’m trying to create might at least offer comfort.
What am I getting at? Well, given that I am not religious and don’t pray, one might think I have something against prayer. Just the opposite is true. I respect people whose lives are guided by faith, and I consider it an enormous compliment, a loving act, when someone offers to pray for someone else.
Patrick and his mom and I went on a vacation in mid-April, to our usual spot – Bald Head Island, N.C. It is a quiet setting and offered the respite I really needed – more from the rigors of everyday life than from anything specifically having to do with Mom. One thing I have known for many years is that my mother-in-law says the rosary every single day. If I recall correctly, she chose to do this when her husband was in grave condition after heart surgery 20 years ago. He survived at that time, and in thanks to God, she has since performed this daily prayerful task. (He passed away a little over a year ago. His troubled heart held out for a long time.)
We were driving along in a golf cart on the island, and Patrick asked his mom about the rosary. I was sitting in the back, enjoying the inland forest and the just-right temperature, not fully hearing what they were saying. And Patrick said, “You should tell Emily that.” It turns out that Mom K says daily prayers for a number of family members and friends, some living and some gone. Turning around to face me, she said, “One of those people is your mother.” My mother-in-law prays for my mom every day.
This struck me and I got a little choked up in the back seat. It’s not surprising, really, but it’s just something I never considered. Mom K is asking God to look after my mom – it is such a loving act for her to do that. I am lucky to have her in my life.
My brother Jeff and his partner, Tom, joined me for a visit with Mom not long ago. Jeff and Tom were in town for a celebration of my dad’s 75th birthday (which followed, by about a month, the 20th anniversary of his heart transplant. This is a big year for him!).
During our visit, we experienced a range of Mom’s emotions. She was asleep when we arrived, on a couch in the program area. Since this was a one-shot deal, I decided it would be worth it to wake Mom. Her knees were elevated, and I started rubbing and tickling her legs to wake her up. Her eyes stayed closed. I tried a few more times, shouting at her to wake up. It looked like it might be futile. And then her eyes opened. She lay there cheerfully for awhile, and eventually sat up. We chatted with her and laughed at her and with her. We wondered about taking a walk with her but things were going well so we just let her lead the way. And then, independently, she stood up.
We just sort of did a slow dance in the general area of the couch, again following Mom’s lead, shuffling around and interacting as well as we could as a foursome. She seemed to be having fun and enjoying the attention. She said the occasional word, but I don’t remember the specifics. It’s tempting to try to find meaning in what she’s saying, but it’s hard to know what to really think. But we all responded in the affirmative, about everything.
With her fully occupied and it being a work day, I decided to return to work. Jeff and Tom stayed behind with Mom. Tom told me later that she maintained a pleasant disposition for awhile and then became a little bit fretful. Eventually, she returned to the couch and reclined, potentially ready to return to her original plan for a nap.
He also told me that Mom said to Jeff, “I love you.” We’re not sure, but that could have been a first. Our family was not big on saying the L word as we were growing up – Mom especially. Patrick, who grew up in a more expressive family, may have coaxed Mom to say it to me, or to him, or to us, a few times over the years. Always with some discomfort on her part, and, truth be told, on my part, too. But with her default setting – no anxiety, general contentment, lack of inhibition, spur-of-the-moment exclamations – Mom has verbally expressed her love to me many times. Every time it happens – less frequently now – I soak it up, and I tell her I love her, too. That she is confused, doesn’t know me and has no memories does not matter at all. A kid just wants to hear those words from a mom, no matter the circumstances.
My dog died on March 20. Our sweet Spencer was diagnosed with probable bone cancer in July. Eight months later, he was obviously in some pain, but his disposition had not really changed. We visited our vet for advice – we weren’t sure we could trust Spencer to let us know when the pain was unbearable. The cancer appeared to be less aggressive – not bone cancer – and confined to the leg. Spencer had lost weight and was used to hopping around. He was better equipped now to handle life as a three-legged dog. So we opted for amputation.
The surgery took place on a Monday. Spencer’s vitals were fine, but his exit from anesthesia was like nothing our vet had ever seen. We took him to Ohio State’s Veterinary Hospital for close monitoring and access to a better supply of pain drugs. He appeared to be overly sensitive to the sedative effect of IV pain meds, but it became clear by Thursday that he was not going to fully wake up. Ever. The theory is that he had a stroke during surgery. So we opted for euthanasia, to free him from that existence.
It was stunning to learn that the outcome was going to be this bad because all week, we thought we just needed to wait for the IV meds to leave his system. We had been preparing for his demise for months and were then elated by the possibility of more time with him, cancer-free. As soon as I learned he was cognitively impaired, though, that was it. There was no reason to prolong a life like that in a dog that had been so connected to his humans. While I was talking it through with the critical care vet, I said, “I’m influenced by my mom. She has Alzheimer’s, and has had it for a long time. I don’t know if her life is worth living anymore.” I was sitting on the floor of the ICU with Spencer, my hand on his furry neck, and tears rolled down my cheeks and dripped onto the floor. Euthanasia seemed, to me, to be the clear choice for Spencer. Patrick and I were in complete agreement about that.
We had been on a death watch over those eight months, wondering when Spencer’s pain would be too much and worrying that his bad leg might break. There were some lows when he seemed very tired. And highs every morning when he bounded to the kitchen for breakfast. It might not seem to be appropriate to compare my dog to my mom, but I began this Alzheimer’s journey thinking a lot about when Mom would die and how she would die. That outcome is inevitable with Alzheimer’s, and I strongly opposed prolonging her life – by controlling her cholesterol or vaccinating her against pneumonia, to name a few examples. But the time frame of the illness is another thing altogether, and I’ve stopped thinking in those terms about Mom. I think about her mood, and her overall health. When she will show any signs of decline after years of stability. Whether she is clean and comfortable. How she will respond to me during any given visit.
Lately, she has been asleep or uninterested in me when I have dropped in at the Alz center. I have felt discouraged – not taking it personally, but not all that interested in subjecting myself to rejection. For the past several months, I’ve let a fair amount of time pass between visits. But after Spencer died, I felt compelled to see her. Mom had been a good grandma to him and our other dog, Bambino. She had taken the death of our previous dog, Cookie, extremely hard. Losing Spencer but still having a mom, despite her terminal illness – it just had an odd effect on me. I was fretful about staying away from her; she is, after all, on borrowed time.
And just when I needed it, Mom was back to her cheerful self last Friday. I left work a little early to drop in before dinner. I loaded her closet with a stash of new clothes and then joined her on the couch, where she was lying down but easy to wake up. She sat up and I sat next to her, and within a few minutes she reclined again, with her head rested against me. I loved that physical connection. I coaxed her to a table – it was close to dinner time. We sat together, waiting for her tray, having a conversation even though I didn’t understand anything she said. A woman at the table, a resident I didn’t recognize, asked me who I was. “I’m Bonnie’s daughter,” I replied. Later, still waiting for the tray, Mom mumbled, “My daughter.” “That’s me!” I exclaimed. And we both laughed. She even said she loves me.
I texted Patrick that Mom was in a good mood and that I wanted to stick around to see how she did with eating and to enjoy the pleasant visit. Mom’s aide said she was still good at feeding herself solid foods, but that she tended to spill her liquids so he helped her with those. I assumed his role for this meal, encouraging Mom as she ate with her fingers. I fed her bites of cottage cheese and peaches and helped her with sips of water and milk. She slurped up her high-calorie cereal. When she was done, I cleared her tray and wiped her hands clean. An activities staffer and I walked her over to a chair with others to watch a Rock Hudson movie. I kissed Mom goodbye. And I didn’t think about death – hers or Spencer’s – for the rest of the night.