Change of Pace

My mom's physical was pretty uneventful and uninformative, which is about what I expected. I always say that her health is really great...except for this stupid MS stuff. We liked the doctor though, so I went ahead and set up a long overdue physical for myself in November. Now I just need to set up lab work to check her cholesterol and Vitamin D, get us in to see a dermatologist and check with her old internist to see if she's due for a mammogram, colonoscopy or bone density test.

As for the neuro-ophthalmologist, that visit was to try and figure out if there's anything that can be done to help my mom to be able to read again. The days just stretch out so long for her when there's nothing to do but watch bad television or stare into space. I try to engage her as best as I can during the day, but there are always meals to be made, diapers to be changed, carpets to be vacuumed, groceries to be purchased, etc, etc...

My gut feeling was that her reading problems had more to do with her cognitive decline than her eyes, but it seemed important to get professional confirmation of that. The doctor's visit itself was pretty exhausting, since we got there at 9 a.m. and had to run the gauntlet of insurance processing, patient intake, medical history with the doctor's nurse assistant, an initial examination by one doctor, than another one with another doctor. By this point it was after eleven and we still hadn't see the doctor that we'd made the appointment with!

Poor Nathan was quite literally bored to tears, but he graciously fell asleep in my arms just in time for Dr. Chung to make her appearance in the exam room. And good thing too! I definitely had the impression that she is used to people shutting up and paying attention when she comes into a room. The second doctor (who I guess must have been a resident) made a formal presentation of my mom's condition to her and then she checked my mom's eyes herself. Through this part of the process, I felt that she was a little presumptive about my mom's dementia and jumped to some conclusions about her comprehension abilities based on her communication difficulties. For example, the doctor asked my mom to describe a photo of a family of cheetahs in a magazine and became very dismissive after my mom told her (slowly and haltingly), "a bunch of cats."

The doctor told the resident that this confirmed the severity of the dementia and then replied to my mom very condescendingly, "so you see a picture of a bunch of hats?"

Now granted, my mom's words do come out very clipped at times, but seriously, wouldn't you think that the context of her answer would have made her meaning clear?? Oh well. Once she realized what my mom had said and had her elaborate on the photograph a little further, she did seem more engaged and overall I was pleased with her assessment of the situation.

Pfft...Nathan (who has a little head cold now) just woke up, so I'm going to have to cut this short. Long story short, my mom's eyes are healthy and there are no good physical reasons for why she can't read. Ergo, it's all part and parcel of her overall cognitive decline and there's nothing else to be done.

And on a happier note, yesterday was Nathan's 11-month birthday, so I posted a few new photos here.

Almost exactly two years ago, I was one of the graduate coordinators for the Missouri Photo Workshop in Festus, Missouri. One of the esteemed photographers who joined us as a faculty member for the workshop was Maggie Steber, a charming and intense woman with a wicked wit, the heart of a lion and an unwavering eye for the transcendent.

During our week in Festus (and its sister city of Crystal City), Maggie presented a personal project she'd done on the topic of memory. The subject of the five-minute video is her mother and what lessons emerged from the course of her decline into dementia and eventual death.

At the time, my own mother's dementia diagnosis was still a raw wound on my psyche. I was wrestling with my choice to finish graduate school in Missouri while my mother's busy life was collapsing around her in Virginia. I was afraid for what the future would hold for us. I was overwhelmed with paperwork from doctors and insurance companies and the social security administration and my efforts to assume control of her finances from a thousand miles away. When Maggie played her video for the workshop participants, I found myself overwhelmed by emotion and had to leave the room. Actually, it wasn't until this evening that I finally sat down and watched the piece all of the way through.

While my mom is a very different person than Maggie's mother, there are a lot of parallels between our experiences. The biggest difference of course, is that Maggie has completed this particular life journey, while I look out at these murky waters and see nothing before me but the distant horizon.

"Journey" is the word that Maggie used to describe the years of her mother's decline. For me as a runner, I feel like I'm contemplating a marathon...or perhaps an even longer race. And in this case, I'm quite sure that I haven't trained properly. As I listened to Maggie relate the challenges and small victories of her mother's last years, I felt a little overwhelmed by all of the possible pitfalls ahead of us. Multiple assisted-living scenarios and unworkable prescription medicine strategies and falls and surgeries and anger and grief...I know that we will face our own unique hiccups along the way, but the simple unknowability of it all can in itself be exhausting.

Maggie came out the other side intact. For her, the experience allowed her to rediscover her mother in new and positive ways. When she talks about her mother today, it is with a profound sense of peace. Two years ago, she counseled me that at the end of all of this, there is a gift. She said that there was no way to explain this to me in any clearer terms -- that I would have to discover this gift on my own terms. I didn't really understand her advice at the time and I guess I still can't really define what it might be.

I know that I'm lucky to be in a relationship with someone who supports me in caring for my mother at home. I know that I feel a profound sense of gratification when I watch Nathan fling his warm little body into my mother's arms for his first intentional cuddles. I know that I won't have to live with any regrets that I wasn't there when my mom needed me (though I may find that I have to live with some regrets about the state of my retirement fund in another thirty years!).

The other obvious parallel between my situation and Maggie's is that we are both photographers, regardless of the incongruities between her portfolio and my own. Lately I've been giving more thought to how, or even if, I want to document this experience. But considering that Nathan went to bed nearly two hours ago and I just this moment finally got my mom into bed, I'm going to leave that for another entry and take this opportunity to SLEEP. (Incidentally, that's the topic of the project Maggie was working on while we were at the photo workshop)

I suppose the idealized scenario for a wonderful birthday is to be surrounded by friends and family, but Jack gave me the perfect gift this year by cloistering me in a hotel room for a night, away from my beloved son and mother. The room came complete with a huge, mirrored jacuzzi-alcove and Jack had stocked the place with candles, bubble bath, dark chocolate, red wine, roses and a book of NY Times crossword puzzles. Sadly, I woke up to my birthday this morning with flu-symptoms, but if I was going to feel sick, there's really no better place to do it than under a big, soft, high-thread-count down comforter with absolutely no one else's needs to worry about. My sinuses are still aching tonight, but it doesn't look like I'm going to be dealing with any kind of serious illness.

Which is good, since I've spent most of the last week battling the same head cold that Nathan just got over. It's been frustrating, since we've had the most beautiful cool fall weather and I haven't even gone running once. I think temperatures are supposed to go up again this week, but I won't fret over it too much. Soon enough I'll be complaining that it's too cold to go running.

Okay, I can expect my usual overnight wake-up tantrums starting in just a few short hours, so I'd better get downstairs and sneak in as much sleep as I can.

The funny thing is, I never really spent much (i.e. ANY) time fantasizing about what my future progeny would be like. There really was no "child of my dreams" as I progressed though my 20s and 30s, only a vague idea that it might be kind of neat to have a daughter someday. So now that I'm sitting here at forty with this rowdy little creature that claims to be my son, I'm suddenly faced with the challenge of creating a productive, interesting and tolerant human being that will add value to the lives of his fellow earthlings.

On the shortlist of values that I would like for this future man to possess, is an open mind and an adventurous spirit, particularly when it comes to food. I realize that this might be asking a lot of a person whose mother was a notoriously picky eater up until college, but in the interest of starting him off on the right foot, I took Nathan out for sushi this evening.

I was a little unsure of whether my own mother had any affection for raw fish, so I ordered her the safe option of chicken teriyaki, but I got the boychik his own little piece of tuna on rice (cut in small pieces, hold the wasabi). All in all, I was pleased with the reception. He didn't eat much - he never does - but he liked the novelty of the chopsticks and ate almost everything I offered him. Unfortunately for the other patrons of the restaurant, his attention span leaves much to be desired, so it wasn't long before he lost interest in eating and started in with the random high-pitched shrieks that he seems to be so fond of lately.

I paid the bill and was going to bow out as quickly as possible at that point, but then the waitress brought out a surprise birthday chocolate lava cake. It was probably a bad-mama move on my part, but a few spoonfuls of that kept baby happy long enough for me to enjoy the treat in peace.

So who knows...just because he eats sushi now doesn't mean that he won't be a picky toddler, but at least I'm making the effort to present him with a variety of flavors and textures. At the very least, he won't grow up to be a child that is squeamish about the foods of other cultures out of sheer ignorance.

When I spoke to the doctor about the results of my mom's neuro-psych exam in January of 2010 he described her condition as being "vulnerable to any minor insult." There was something almost tragically poetic about the phrase and it has stuck in my mind over the last couple of years.

This time around, the insult has been a minor head cold. We all took our turns sniffling and moaning around the house for a few days, but it had looked as if my mom might avoid the germs this time around. It's so difficult for her to communicate what she is feeling, I was really relieved that I wouldn't have to play guessing games with her symptoms, but unfortunately she finally woke up coughing and dripping like the rest of us had.

The thing is, what is a minor health complaint for the rest of us hits her like a sack of rocks. Her condition has declined significantly since she moved to Missouri in the spring, but I think it's fair to say that she's declined the same amount over again in just the last week and a half.

Communication has become almost impossible. She can get out a few words, but often there aren't enough key words for me to guess what she's trying to say. Other times, she'll substitute a word...lips, when she means tongue or movie actress, when she means talk-show host...and I'll be at a loss to know what or who she is talking about.

Physically, she is listing badly to the left. Her left side has consistently been an issue in terms of accessing the muscles when she wants to, but now it's almost like she's folding in on herself to the left. Her posture is terrible and she is capable of sitting or standing up straight, but she can't maintain a straight spine. It's affecting her balance when she walks and her ability to sit squarely on a chair, so I'm much more worried now about her taking a tumble.

She also complains about the sensation that her tongue is either "coming apart" or "falling out." Sometimes she insists that it has in fact fallen out, but that she was able to get it back in again. I'm interpreting this as a nerve issue and that she just can't feel her tongue very well, but it's so hard to know what's going on for sure. We don't have an appointment with the new neurologists at Washington University until January, so I left a message with her old neurologist, but haven't heard back. I guess tomorrow I'll call the doctor that we had the physical with, but I'm really not sure that ANY of the doctors will be able to tell me anything that will really help.

Dressing and undressing takes forever. Mealtime is a mess. Basic hygiene is a challenge. Days stretch out painfully watching her sit on the couch in a heavy-lidded stupor, twitching and mumbling. For the first time, I'm really wondering how long I can do this for.

Right now I'm just keeping my fingers and toes crossed that this is all because of the cold and that a few nights of sound sleep will give us a good rebound.

With my day-to-day preoccupation with the torturous assault of a chronic illness, I never expected to suddenly lose my relatively healthy and very independent mother-in-law, Lynne. We're still learning all the details, but the simple fact of it is that she had an accident, probably a fall, and now she is gone. There is a certain mercy in the swiftness of it all, but our expectation was certainly to have had her in our lives for much longer.

The next few days will bring a lot of family time and remembrances, but for my part, I will always be grateful for the kindness and affection she has shown me over the past few years.

It was particularly fitting that sundown marked the beginning of the Jewish New Year after we spent the day marking the end of a life. Jack's extended family gathered for a long day of celebration and mourning at his mother's funeral and interment. It was truly moving to see how many friends and neighbors came to pay their respects and share their stories of Lynne's thoughtful nature and pride in her family. It was also a chance for me to meet some of Jack's cousins that I've heard stories of, but have never met.

If it had just been me, I would remember it as a beautiful day. My responsibilities towards Nathan and my mother made it an exhausting one as well. I'd like to try and just relax and recharge tomorrow, but with Nathan's birthday coming up on Saturday, I have an awful lot of cooking and cleaning to do. Sept/Oct is pretty much non-stop birthdays around here with three of the kids, Jacks niece, mine, and Lynne's (which we were fortunate to celebrate with her less than two weeks ago). A saving grace for tomorrow is that the Phillies beat the Braves tonight so at least we won't have to go to the Cardinal's play-off tie-breaker (even though that would have been a really fun game to see).

Anyway, I'll wish a Shana Tova to everyone and hope that this new year is full of more happy celebrations than sad goodbyes, even while recognizing that life is made up of both. I suspect that this entry came out a little jumbled, but I'm not going to even re-read it right now in the interest of getting some sleep.