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.
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.)