Waiting can be a pain in the ... tooth

                                                       
                                                                Mary: Brighter and more alert

      We’re playing the waiting game again. It grates on your nerves and has you reaching for the phone two or three times a week to chivvy things along, if that's at all possible. We take turns calling the concerned parties: “I did it yesterday, your turn today.” A grimace, a sigh; it all seems so fruitless, this chasing bureaucracy.

      Except for a spell wearing orthodontic headgear for 20 hours a day when she was 11 years old, Mary has always had exceptional teeth. No cavities, huge bright, white smile. A cleaning twice a year would do it for her and she’d bounce out the dentist’s door and forget about it.

        But she now faces a dilemma. She has cavities.

        Her diet, since she came out of the coma, has been restricted to soft food, which looks dreadful but smells great. If it’s all you can manage, you knock it back without a thought. Who’d believe mushy food and no sweets could wreak such havoc? Those cherished moments of wrangling with a banana or piece of fruit are rare for Mary, but we make sure she does get one thing each day: Coffee. She adores her coffee. Last I heard, plain old coffee doesn’t cause cavities.

        About six weeks ago, Mary had her three-times-a-year oral hygiene check-up, which she patiently endures and is quite able to tolerate. Due to her swallowing difficulties, the only thing the hygienist has to do more often is suction her mouth to keep the detritus from sliding down her throat. Due to weakened muscles, some spasticity and God knows what else – we still can’t find out what  – she has quite a difficult time eating and swallowing. It takes time, and anyone helping her to eat has to have the patience of Job. Complicating the matter; Mary loves to eat, although you’d never know it when we stand her up to her 5’ 8” height. She’s rail thin and is one of those women who can cross their legs while seated and wind them around each other like noodles. (A side story here. This habit has, in the past, caused ankle swelling. Pressure socks are always on hand and the nurse has recommended their use when the first sign of puffiness occurs.)

        Dental hygiene – even when she was in hospital and visited every three months by a hygienist – has always been at the top of Mary’s list. She has great teeth, yet even now, aware that she can drool at times, she’ll hold a handkerchief to her lips to keep people from noticing this unfortunate symptom of her brain injury.

       Mary has her teeth brushed by PSWs who, while gentle, can’t always navigate Mary’s stiff jaw and mouth. She tries to help when possible and it is imperative, at some point down the road, that Mary gain enough hand co-ordination to do things like this for herself.

          And we’re aiming for that – among other things.

         But something has happened: While she got an all-clear five months ago, she received a thumbs-down six weeks ago. This most recent trip uncovered cavities in a back molar and quite a bit of gum irritation and redness. We were told it would be best if the work was done much sooner than later. So our dentist booked her in for the work.

         For us, it would be a simple thing, an hour out of our day, a frozen mouth for a few hours, a lecture to do more flossing, (which she can’t do on her own), instructions to do some vigorous brushing on the molars and to exercise more vigilance. 

         Several days later, and after much consideration (he’s known her since she was 7), the dentist called us and expressed some concern over doing the procedure. There are risks of dealing with someone like Mary, who cannot signal if she is in trouble, who has spasticity problems in her neck and jaw.

         So, a simple filling or two? Not so for Mary: We were told, due to the high risk and swallowing problems, Mary would need a full anesthesia and intubation. In a hospital.

         We were referred first to a specialist dentist who does anesthesia in his high-tech office. He assessed Mary and said he’d want to have more staff on hand to handle her if anything went wrong. “I’d feel happier with that button to push if something happened.”

         He was apologetic and kind. He referred her on an urgent basis to a hospital where a staff dentist works with people like Mary. That was weeks ago.

         The past week has been a game of call and wait as we negotiate between the dentist who referred her to the hospital and our dentist. It’s getting ridiculous.

        My first inclination, since Mary doesn’t eat hard food, would be to simply pull out the damaged tooth and let her get on with it. Who needs the risk of anesthesia for a filling? Not to mention the side effects of the whole procedure.

        But we’ll wait this one out and go with the expert advice. (Hasn’t that always worked well in the past five years? Hell, no.)

   

        The upside of the past few months for Mary has been her brand new wheelchair, a veritable cobalt blue chariot, and increased memory and cognizance. It is as though she has looked around and noticed a world beyond her four walls. She fights to communicate more. She comments on funny things. She reads what she can of her newspaper every day. She’s even walking better in her big walker.

        In an attempt to spur on this spurt of awareness and memory, we decided Mary needed a long, slender table to help her co-ordinate activities and aid her eating and drinking. We ventured into the confusion of an Ikea store and wrestled huge boxes off shelves onto a cart (Tylenol for Arthritis does what it says, by the way), including a rather stylish office chair (which I lusted after briefly) for the PSW to sit at and help with feeding and other activities.

        The whole thing about brain injuries is to get the person back to doing as much as they could before – on their own and with practice and repetition.

        “Let her follow her own instincts,” advised the neuro-physiotherapist a few years ago. “Don’t jump in and do it for her. She can figure it out.” And it’s true. We’ve run with that advice. The phsyio would hold her up and hand her a cane. As they walked, he’d let Mary instinctively move the cane to support her weight as she moved her legs.

         We do have a body memory and it does come back, with encouragement.

          Bob recently found Mary’s thermal coffee mug that she’d carry on the subway to work. When he brought it in, she immediately picked it up and tried to drink out of it. She recognized it and knew right away that it was an old friend. Now we give her coffee in the mug and let her go to it. It aids her co-ordination and muscle control and it’s familiar, part of her past, something she used daily and which brought her some joy. Heaven knows, we can’t find enough of that for her.

          It all seems so simple, does it not? Lifting a mug of coffee? Getting a tooth filled?

          For people like Mary, it’s just not so.

    

    

                                                            Rediscovering her coffee mug.

This blog is updated about once a month now, as developments occur or new treatments are found for Mary.