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.
I tried to visit Mom last week after a doctor’s appointment (more aches and pains-tendinitis in my foot), which was in the same general neighborhood. But I was stopped at the front desk. The receptionist was turning away another visitor right before me – she said staff members were trying to contain a rampant flu in the program area, so visitation was put on hold. I had a flu shot in the fall and Mom did, too, so I wondered about the overall risk but didn’t want to put up a fuss. I asked if Mom was sick, but she didn’t know for sure. I guessed not since I had not received a call. I returned yesterday, Sunday, to try again. The weekend receptionist said visitors were allowed but that a lot of residents were still sick. And it wasn’t influenza, it turns out, but an intestinal virus. Lots of vomiting and diarrhea. She hadn’t heard that Mom was one of the sick ones. I dosed up on antibacterial hand gel and headed toward the program area.
Mom was sound asleep on a couch just outside her room. I actually had another task – I checked her closet to see how her wardrobe was faring. She has too much money again, by Medicaid standards, so I have to go shopping for her. I’m going to focus on lots of pants. Her pants always seem to disappear. And her clothes in general take a beating because she is such a messy eater – her clothes are laundered very frequently. I’m always looking for a bargain when I shop for myself, but for Mom I’ll strive to pay full price so I can quickly get her checking account below the maximum allowed. Seems odd to me that I need to spend her money, again, but I don’t think I would have predicted in August 2009, when she went on Medicaid, that she’d still need it in 2014. That’s also odd to think or say… But even as little as the $40 per month she’s allowed to keep from her retirement earnings eventually adds up over 4 1/2 years.
After checking the closet, I stood over Mom and looked at her. She was wearing a Buckeye sweatshirt and a pair of old gray fleece pants that she has had for many years. Her color was good and her hair looked clean. And she snored, and flailed her arms a little bit as if she were having a dream. So I didn’t think I should wake her from such a deep sleep. I know now that she’s OK. And I hope she avoids the virus. I hope I do, too – I lathered up twice with antibacterial gel, once in the lobby and again in my car.
I have lunch most Thursdays with a group of women who have worked or still work in communications in various parts of the university. One of them happens to be an old friend of Mom’s. They met over their shared love for bridge and were serious players at one time, playing weeknights at a club in our neighborhood and often attending weekend tournaments. And a funny thing I’ve always known about their relationship is that Mom accompanied this friend and her second husband on their honeymoon, in Spain. I don’t know if she’d want me to identify her, so I’ll call her JW.
At a recent lunch, JW gave me two photos from that vacation in Spain. Her brother-in-law recently died and she had been going through pictures for his memorial. I had seen one of the photos before, of Mom in her swimsuit, her hair in a bandana and a bandage on her chin. Mom had taken a spill at the hotel (I think) and bashed her chin. I’m pretty sure she had stitches, and that she covered up her hair because she couldn’t wash it without risking getting water on her wound.
I had seen this photo before, but didn’t remember the details. I was pleasantly surprised to see she is petting a puppy. Mom had loved dogs her whole life, and was an excellent grandma to my two dogs, letting them out daily until she couldn’t remember to do that anymore. Her swimsuit is also so familiar. I’m sure I’m wrong, but it seems as if she wore that same suit every year for my entire childhood. During summers, she liked to lie out in the sun in the back yard, always in that suit.
This next photo was new to me. I love it.
My lunch lady friends thought that I resemble Mom in this photo. I think so, too. “And she’s so pretty,” I said, not meaning to claim anything about myself. It is just a classic Bonnie look. She has a cigarette in her hand, appears to be reaching for a beer. She’s wearing a sweater that I recognize. And that hairstyle – she had that same general style until she was a grandmother, probably. Though my hair is now short, I think I have hair like hers. But mine is grayer now than hers was at my age – it’s possibly grayer than hers is now. My hair has thinned with age and has some uncooperative waves, and would probably look like Mom’s in this photo if I grew it out again.
JW and I calculated that Mom was 37 in these photos. That is striking to me, that she was so much younger in these pictures than I am now. I find aging to be an interesting experience and I am not troubled by it a bit. But I do often imagine that Mom must have been so much older than she really was as I grew up, just because it’s odd for me to think of being old enough to have a youngest child in college, which was the case when she was 48. Meanwhile, I am childless, but I’ve had a sense since she got sick that Mom is the “child” I never had. And she is 76 years old.
I had always known that Mom went on that trip, but I didn’t know why. JW said they were talking over drinks at the Blue Danube, probably after playing bridge, and JW had learned of a very affordable trip to Spain chartered through a veterinary association she freelanced for. She and her husband, married about six months, decided that sweet deal would be perfect for the honeymoon they hadn’t yet taken. And Mom said, “I want to go.” And so it was. That’s a great thing about Mom’s adult life – she had a terrific circle of friends. JW said it worked out very well – a threesome, she said, attracted locals interested in chatting, and they really enjoyed that interaction. Mom actually had a flirtation with a bullfighter that they met. He was short and had a scar from being gored. When the three were preparing to leave, he wanted to join Mom on the plane (JW functioned as a translator with her minimal Spanish). Mom declined. I do remember how she described his reaction: “Stu-PEED!” Like so many of Mom’s experiences, it made for a great story.
I’ve had a mild stomach ache for a few days. And headaches – possibly sinus issues. Worst of all, persistent pain in a muscle near my hip, which I suspect is compressing my sciatic nerve.
When I had these tales of woe as a young person, Mom would say it sounded like I had a case of the aches and pains of everyday life. I haven’t thought of that phrase in a long time, but it sure applies today. And it makes me smile to think about it, and to miss that simple exchange between mother and daughter. I was frustrated by that response as a kid. But I think now, as an adult, that it offers useful perspective. I am not actually ill, after all. Just a little inconvenienced.
I was thinking earlier about writing a post and I was going to attribute my aches and pains to stress. And maybe that’s a contributing factor. But I prefer the idea of just considering them a passing bunch of aches and pains that will come and go.
I do think I am experiencing a slow burn of steady stress, partly related to Mom, partly related to figuring out when our dog with cancer’s life is no longer worth living – for him, partly related to a variety of pains of everyday life that aren’t physical. Nothing so very serious. Just there. And sometimes more pronounced after I see Mom.
I visited the Alz center Saturday after a bit of a hiatus. The last time I had visited, Mom was sound asleep. I sat for a short while but she didn’t wake up so I didn’t stay. On Saturday, she was eating her lunch when I arrived. An aide was sitting beside her, alternately feeding another resident and feeding bites to Mom. This surprised me because as far as I knew, Mom was still able to feed herself, albeit usually without utensils.
I must have looked alarmed. I said, “Does she need to be fed?” And the aide said she just helps Mom when she has a chance. I didn’t mean to accuse her of anything but looking back, I think I sounded a little harsh. That just would have represented a big change – that I may or may not be prepared to accept. I really like this aide, and she is very good natured, so I don’t think she took any offense.
I sat down on Mom’s other side. I lifted a potato wedge to her mouth and she bit half of it off. She picked up chunks of chicken and ate those, too. I fed her some spoonfuls of ice cream but she eventually took the cup from me and slurped it all up. The aide put the glass of water near Mom and Mom grabbed the glass and said, “Water’s nice.” The aide helped with that interpretation. Which made my heart sink a little. I don’t hear Mom enough to be able to be the first to interpret her jumbled phrases.
When she was finished eating, I lifted her out of her chair to take a walk. Sometimes I’m timid about coaxing her to do something but I’ve seen her respond enough times to being pulled up by her hands that I gave it a try. As she got to her feet, she started tipping backward and I grabbed her and hugged her firmly. We both held the hug and laughed. And then we started to walk.
Mom continues to talk a lot, but doesn’t say many actual words. As we rounded a corner, though, she said, “I can’t understand. I can’t understand.” She seemed a little too distressed for my liking so I just told her it was OK, that she didn’t have anything to worry about. She found her way to a chair and sat down. I leaned on the arm of the couch next to her and watched her briefly. She kept her eyes downward and I assumed she might be tired. I put my face near hers but she wouldn’t look at me. She closed her eyes. So I kissed her cheek and left.
And I’ve been wondering ever since if Mom gets any joy at all out of my visits.
First, may I just say that today is the 5th anniversary of the start of this blog. I’m glad I remembered this year on the actual day. Thanks so much for reading and commenting and supporting me.
I’ve had the interesting experience of being interviewed twice recently for stories about caregiving or Alzheimer’s. About a month ago, a writer for the website Caring.com sent me questions in email for a story, asking me about how blogging has helped me in terms of creating a community and offering me a source of reinforcement and support. The site is one that has recognized this blog, having deemed it one of “18 Great Caregiver Stories on the Web.” The story appeared online without any warning, and I knew only because my stats indicated a few visits to the blog came from the Caring.com site. This is my favorite passage: Writing her blog has also proved therapeutic, Caldwell says, allowing her to forgive herself for mistakes and gain insight into her emotions. “Writing about these experiences has been a way for me to support myself, in a way — to say ‘out loud’ what I think and feel and not apologize for it.”
And then, my colleagues at the university medical center produced a video story for release yesterday about a new self-administered test developed by an Ohio State neurologist that gauges cognitive function – and can be used repeatedly to detect changes over time. The doctor who created the test diagnosed Mom and treated her until she moved into the Alz center, so I am a big fan. When these video packages go out, many news stations run them as is. But the local CBS affiliate asked for a family member of an Alzheimer’s patient who could talk about the test and its potential value for other patients and families. My colleague (and longtime friend from college) asked me if I would be willing to be interviewed, and I did not hesitate to say yes. It turns out the national network asked for the local station’s video, and, lo and behold, today there I was in a video appearing on the national network’s news site. Apparently, this video – a combination of the package produced by the medical center and its partner production company and two short segments of the local video of my interview – was picked up in some other markets, including CBS in New York City. Gulp!
The most important piece of information is the existence of this test, which anyone can take at any time. A whole newsroom devoted to the story is online here if you’re interested to know more. But then there is my participation, which – what can I say? – tickles me. During the interview, I showed the videographer and reporter several photos of Mom and even videos from this blog – and they used quite a bit of that. It’s a real treat to see Mom’s images make up so much of the story, to show a real person with not just a disease, but a history and a current life that I and others try to make as worth living as it can be.
I definitely hope this blog helps lift others who are beleaguered by the caregiving experience, that it helps others know they are not alone even if caregiving feels like a very lonely experience. But there is no denying it helps me, too, as a therapeutic tool and, come on, I’ve got to be honest, it is a vehicle through which I get attention as a writer, as a caregiver, as someone who is rewarded by the interaction that results from the blog’s existence. And so, being considered a worthy source for a TV news story about Alzheimer’s is rewarding, too. With that confession, here is the CBS story. (It takes a moment for the video to load, and of course there is a commercial first.)
After that weepy Christmas party, the rest of the season went well. I saw Mom again on Dec. 20, when my brother Jeff came from New York for a quick visit to Columbus. I took the day off of work, and he and I spent some Friday afternoon time with Mom. She chattered on and we walked up and down the hall. Her mood seemed good. Mom held Jeff’s hand. I enjoyed seeing them together.
I checked in on Mom the other day before a quarterly care conference. She wasn’t in a terrific mood. When I sat down beside her, she called me an idiot. And then she said some more things, and motioned toward the corner of the table as if she were placing something there. (I think she hallucinates; she often acts as if there is something in her hand that she wants to give to me. The activities director said she has seen Mom do the same thing.) I placed my hand on top of whatever it was that Mom thought she put on the table. And she very forcefully said, “No. No. No. No.” I’ll never know what that was all about.
She would look at me forlornly. She may have cracked one brief smile. So I left her in the program area and joined the staff for the conference. I talked to an activities staffer on the way out of the program area and she asked me how things are going. “Mom called me an idiot,” I said. And she replied, “She calls it how she sees it.” And I laughed. At that moment, me being an idiot was Mom’s reality. And it was funny.
I learned in the conference that Mom’s weight is stable. She is eating less – 50 to 75 percent average intake of her meals, which is a drop. But she gets high-calorie cereal twice a day and ice cream as well. “I won’t give her the high-cal cereal in the morning because she loves her dry cereal,” the head of dietary said. She has told me that many times, that Mom enjoys eating dry cereal at breakfast. Mom sometimes needs some coaxing to eat now, but there doesn’t appear to be anything resembling a serious loss of the ability to feed herself. My experience lately has been that Mom is easily distracted during meals, which could interfere with her focus on feeding herself and with her interest in eating rather than doing something else.
She still likes music and enjoys seeing children from the attached daycare when they visit. She might be convinced to dance, but that is rare. She calls the activities director ‘Emily’ sometimes.
I had a call recently about Mom receiving an intravenous infusion of Reclast to prevent osteoporosis. A nurse called before to inform me about it – I said fine, as long as Mom doesn’t fight too hard against the needle – and then called me again afterward to report that Mom did really well with the treatment. Mom actually leafed through pages of a magazine. I got the feeling based on the descriptions I heard that many staff members help in entertaining the residents during this treatment.
The nurse also asked me if Mom has a sister. “Yes, Nancy,” I said. And she said that was the name Mom was using to mention her sister. That seemed amazing to me – a moment of retrieval that I would have liked to experience. I visited my aunt, uncle and cousins just a few days later and told her Mom had talked about her. I took a selfie of Nancy and me. Some people think I look like her.
Hearing Nancy talk reminded me a bit of Mom. They both have the same slight accent.
I’ll try again with Mom another day, and hope she is in a good mood. That is partly about my feelings, but really mostly about her. I just hate to think of her feeling any hint of misery. Her inconsistent response to me is probably not something I should try to analyze. But I do wonder – is there any chance at all that she misses me, or does interacting with me just tire her out? Or neither? Could it possibly be both? I’ve convinced myself she has no awareness of the passage of time between my visits. But what the heck do I really know for sure?
It’s been a week since the Christmas party at the Alz center. So I’m not teary anymore. I wonder if I’ve put off writing a post about it for fear I’d go back to that melancholy place.
The party was a day after a difficult experience at work, and my reaction to that bad experience had been rage on the day it happened, and sadness the next day. During a conversation with a work friend on Friday morning, I unexpectedly started to cry. Mom’s party was just a few hours later, so I arrived already feeling a little raw.
Mom was sitting in a circle in the program area and the Elvis impersonator had just started his show. Mom was looking a little tired, but she was also very affectionate. My heart was very open to her on this day, and I draped my arm around her shoulder and sat as closely as I could. I rested my head on her shoulder, and she rested her head on mine. These tender moments were doing a number on me – I wasn’t feeling particularly sad about her status, necessarily, but just felt emotionally overwhelmed – partly because it was such a pleasant surprise for her to be huggy and kissy and telling me repeatedly, “I love you, honey.”
And then Elvis started singing Annie’s Song. That melody gets me every time. I’ve actually been humming it this morning. As he sang, and I sang along, I noticed my support-group friend across the room, dancing with his wife. She had gone to stay with a daughter in Florida for seven weeks, but fell there and had to come back to Columbus, and to the Alz center. I was so proud of him when he had moved her to the center several months ago and worried when I didn’t see her anymore – until the staff said she had moved in with a daughter. (Later at the party, he told me, ‘She’ll be here for good now.’) The song, my friend dancing, holding hands with Mom and singing in her ear – it all got to me a little but I was able to keep the tears from actually streaming down my face. It even makes me feel sad about the loss of John Denver when I hear that song. So that wasn’t helping.
Elvis carried on with Christmas songs, and volunteers dressed as Santa and Mrs. Claus made the rounds to hand out gifts and take pictures with residents and family members. It’s always hard to get Mom to look at a camera these days. Eventually Mom got restless and we walked around a little bit. We paused to have a brief dance during a fast song. I carried around her gift – a brown teddy bear. I sensed Mom was ready for a break, so I led her to a couch and coaxed her to sit down. By instinct, she reclined. I rested the teddy bear against her belly, and she immediately closed her eyes – probably trying to shut out the noise and the crowd.
I was glad to get to the party this year (last year a work meeting delayed me until it was essentially over) but I did have to return to work to finish writing a story. I think the earlier tears actually helped me focus at this point – being able to work out some emotions saved me from stewing, saving me from myself.
In general, studies on Alzheimer’s prevention offer no conclusive information on steps we can take to fend off the disease. Genetic predisposition is one (not fully understood) part of the problem. And aging itself is the primary risk factor for Alzheimer’s. But analyses to date suggest that the things people do to keep the body healthy are pretty much the same things that are believed to keep the brain healthy: regular physical exercise, a balanced and healthful diet, positive social interactions, and puzzles and games that function as exercises for the brain.
I am not excessively worried about my own risk for Alzheimer’s. The statistics about it are so grim, and so many cause-related facts are still unknown, so I figure I’m as likely as anyone to end up with dementia. But still, since Mom’s diagnosis, I’ve taken my exercise regimen up a notch with hopes that blood flow to the brain is as good for me as stronger muscles and a healthy heart and lungs.
A nonprofit organization called the Banner Alzheimer’s Institute (BAI) recently invited a number of bloggers to listen in on a briefing about its work to promote international scientific collaborations and additional research as well as new standards of care for patients with Alzheimer’s. I was among those invited to attend the webinar and promised to write a post about it. (We were offered compensation, but I missed the deadline to receive it. But I am not doing this for money – I believe in the effort.)
The briefing was led by Jessica Langbaum, Ph.D., associate director of the Alzheimer’s Prevention Initiative in Phoenix and principal scientist at Banner Alzheimer’s Institute. She described the statistics – 5.2 million current American Alzheimer’s patients, with that number expected to triple by 2050 – and discussed other general information about this particular form of dementia. One tidbit was new to me, though had I ever thought in these terms, I guess it’s something I already knew: Alzheimer’s is the only top-10 cause of death that can’t be prevented, treated or cured.
BAI has created the Alzheimer’s Prevention Registry to help accelerate clinical trials emphasizing true understanding about how this disease can be prevented – assuming it can be prevented. The registry is a community of people willing and ready to take part in prevention research. Those who sign up receive regular email updates on research and scientific advances and, most important, notices about upcoming studies and trials and how to participate in them. Signing up does not equal a pledge to participate, nor does it mean registrants’ personal information is automatically released to any scientists – it simply gives researchers a leg up on recruitment for their studies by creating an existing pool of people who have declared that they are willing to give a clinical study a try.
Dr. Langbaum noted that according to the National Institutes of Health, 85 percent of trials face delays because recruitment is so tough. Many studies about Alzheimer’s in particular fail to meet recruitment goals. Research in this area can take many forms: surveys, one-time visits or a clinical trial involving an experimental drug, diet or exercise program. Two large national studies will begin enrolling participants soon.
Most prevention research to date has been based on short-term studies or large population-based analyses. But what lies ahead could yield the best results: clinical trials in which people are randomly assigned to diet and/or exercise and followed for long enough to determine whether a healthy lifestyle can delay the onset of Alzheimer’s disease or another dementia. For now, Dr. Langbaum said, clinicians say that with regard to diet, what’s heart healthy is brain healthy. And exercising seems to lower dementia risk, and certainly cannot hurt.
This registry is not limited to people with a family history of Alzheimer’s. Most clinical trials require control groups of healthy people unaffected by the disorder under study for comparison purposes. The registry is open to anyone age 18 or older with or without a family history of this type of dementia. The initiative was launched in May 2012 and by Nov. 13, the date of this briefing, 22,000 people had signed up. BAI’s goal is for 100,000 registrants by the end of this year.
I am a believer in research participation. I was involved in a five-year study about nearsightedness and a more recent 12-week study about the effects of sesame oil on cardiovascular disease risk. I also enrolled in a trial investigating the risks of Alzheimer’s caregiving on caregivers’ health that involved only completion of a long questionnaire and a large blood sample. Mom participated in two drug studies shortly after she was diagnosed, but had to leave the second trial because of problems maintaining the protocol when she moved into assisted living.
I have signed up for the Alzheimer’s Prevention Registry; the link is http://endAlznow.org. If you’re interested enough to read this, I’d recommend that you consider signing up, too.
I just finished my fifth Thanksgiving dinner at the Alz center. It wasn’t easy. Mom was restless. I had to have help from a staff member to get her into a chair. And then she wanted to get up. I essentially held her down in her seat for about 10 minutes while we waited for the food to arrive. I thought the meal would occupy her, but Mom wasn’t really all that interested in eating. She took a few initial bites with her fingers. I put her silverware on her plate to see if she’d give it a try, but she didn’t. She worked on it long enough for me to eat most of my food on this first round. She got up and wandered over to a table of six and just stood there looking at them. I got up to retrieve her – I was afraid she might try to take someone’s food. I led her back to our table and sat her down again. I fed her a few bites of corn and mashed potatoes, and buttered a roll and fed part of it to her. I took a few more bites of my food. And then she got up again.
This time she sat in an easy chair for a bit. I went to sit next to her. She got up. I followed her around, held her hand, walked with her. A staff member brought pies around and I got a piece of pumpkin pie for Mom. We visited another table and I fed her pieces of the pie. Another staff member came by and squirted some whipped cream on what I had left. I was using my fingers, just like Mom does. And after she finished hers, I quickly ate most of a piece of pecan pie (with a spoon). I can’t resist pecan pie.
I cleaned up our table as well as I could and hung out with Mom on short walks in different directions. As we walked to a couch, a woman at a neighboring table walked by and put her hand on my shoulder. “She’s keeping you busy tonight,” she said. “She’s a busy lady.” I said, “I imagine it’s what it’s like to have a small kid.” I then joined Mom on the couch. She had reclined on her side with her legs curled up. I sat by her head and stroked her hair, hoping she’d be able to relax. This entire time, she had been muttering constantly. I couldn’t make out many actual words, but when the social worker came up to say hello to us, Mom very clearly said, “I’m ready. Who’s going?” While she was lying on the couch, though, she remained pretty quiet. For a few minutes.
Another family member I had never met before stopped to say hi, telling me her son had lived at the center for about a year. He is 58. She lives in Florida and doesn’t see him too often. I wonder if that is even worse than having a spouse with Alzheimer’s – to have a child with Alzheimer’s. Seems hard to imagine.
And then Mom got up, and I decided to let her strike out on her own. I worry that my presence sometimes is not welcome – and of course it’s not personal. There was a big crowd there and I do think that bothers her. And I was in her face a lot trying to convince her to do things my way, and I suspect that was stressful for her. So I went to pick up my jacket, and the mother from Florida waved me over and introduced me to her son, and I recognized him but haven’t really ever talked to him. She introduced me to her granddaughter, and she offered her hand. “I have pie on my hand,” I said, reaching toward her tentatively. She shook anyway. Relatives of Alzheimer’s patients understand these things. We chatted. And then I said I oughta get going, and the mother from Florida stood up and hugged me, and she was very matter-of-fact about it, as if we had been friends for years. And yet there’s a good chance I’ll never see her again. But relatives of Alzheimer’s patients understand that other patients’ family members can always use a hug.
Obviously, I’m not keeping up with the NaBloPoMo pledge. It was a worthy goal. Maybe next year.
Ironically, I missed an easy chance for a post on Nov. 3. That was the eight-year anniversary of Mom’s diagnosis. Eight years. Seems like a lot. With an additional I-don’t-know-how-long before that as Mom’s symptoms gradually surfaced and then became more obvious. Nov. 3, 2005. I still have the prescription pad page that the neurologist wrote notes on during the appointment. My sister Laura had come to Columbus from California for this event. The neurology clinic was across the hall from my office at that time, so we popped in for a visit with my co-workers after meeting with the neurologist. Laura and I faked a good mood – though neither of us was particularly surprised, it of course was not a happy occasion. I’m not sure what might have been going through Mom’s mind. She had asked the doctor if the heavy drinking she did in the 70s and 80s contributed to the disease. He said probably not, but that it might have left her with less brain to work with once the disease had set in. And from what we’re learning about Alzheimer’s these days, it appears that the seeds for dementia are planted in the brain years – maybe a dozen, maybe two decades – before symptoms become apparent.
I visited Mom today, Veterans Day, and studied the faces of the honored veteran residents on a lobby bulletin board before I went to the program area to see her. I arrived long after lunch, but Mom was still sitting at her designated table. A crowd had been assembled for the day’s entertainment – my favorite Elvis impersonator. He looked different – he had a haircut and was wearing a bowling-style shirt instead of his usual sparkly getup. But he was there, for this unpredictable audience, which makes me adore him.
Mom was pretty drowsy, which didn’t surprise me. She’s often sleepy after lunch. I held onto her hand for awhile until she pulled it away. She laughed a few times and at one point I said something and she said, “Hmm? What’d you say?” That phrase was so clear, but everything else she said was complete nonsense and very few actual words. I responded affirmatively to everything she said. I sang in her ear when I recognized an Elvis song. I tried to encourage her to stand up and dance. She didn’t protest, but she also didn’t budge.
I think the Alz Center staff members enjoy Elvis as much as anybody. I noticed after a series of patriotic songs that an activities staffer had tears in her eyes. I know her husband died of Alzheimer’s and she is pretty young, meaning he might have had early-onset. I don’t know if he was a veteran. She and I have frank talks about being caregivers and I know she is one very tough cookie. Seeing the moisture in her eyes nearly made me cry. I decided that was as good a time as any to take off and let Mom relax.