An Outing

Today was a day without respite, tinged with the self-pity I indulge in about once a month, so after Michael's second dose of medication had kicked in at about 11 am (going out any earlier is simply not possible any day before that time), I suggested an outing, perhaps lunch.

Just getting out the door can be a challenge with a disabled person. First we have to wait until his body allows enough movement to do so. It is quite miraculous to watch him go from complete immobility at one moment to complete fluidity the next. As soon as that moment occurs Michael will start the process of preparing to go out. Then he might get distracted by some thought that finds him rummaging around in his room searching for something that is then quickly forgotten or has absolutely no relevance to the matter at hand, i.e getting out the door. Or a bodily function must be attended to. Or a special pair of shoes he hasn't worn in months suddenly has to be found. Then, given the cold temperatures outside right now, care must be taken that Michael is fully dressed before we leave, hat and mitts on, the coat done up completely which can be a challenge with a slightly wonky zipper. He insists he can do it himself but usually I have to intervene if we ever hope to get out before the medication runs out. Today departure went pretty smoothly. We were both motivated to see the outside world.

We went to a small mall in town. For all my aversion to shopping malls, they are a haven for the disabled. Handicapped parking spaces are usually plentiful and access to the mall is usually safe and simple. Malls provide a stimulating environment, lots of people, lots to see, and are easy to navigate with a wheelchair. When Michael is ambulatory he seems to be able to cover far more ground in a mall than he can on a snowy street. Perhaps he feels safer or perhaps he just forgets about things for a while and enjoys the sights and sounds.

We decided to eat at the food court. Fast food is really the only option we can consider for meals out. Service is quick, allowing us to be seated and eat within the potentially short span of time his medication allows. We always plan our outings with priorities: we aim to do only one thing for sure and then if time and medication allow, I have a few other ideas just in case. So today, lunch was the priority. Michael wanted shawarmas, two in fact. Now this is not the easiest food for anyone to eat - plan to take a bath in garlic sauce - but for someone who is disabled it can be especially challenging. I usually bolt through my meal so that I can monitor Michael's progress and troubleshoot without him knowing I am doing so. This means moving the open coke bottle from the edge of the table where it seems to have crept; slipping the tray or a napkin under the deluge of sauce before it soaks his lap; helping him pull away the wax paper wrapping as he makes his way through the deliciously sloppy mess; discreetly wiping his soaked chin before leaving the table.

We made it through the meal without incident then set off for a stroll through the mall. Michael can always think of random things he suddenly wants to buy such as a cd but he can't remember the artist or a power tool he simply must have for some imagined project (I've had to be discreet again in hiding all the dangerous tools in our basement since he can no longer manage any of them safely or competently). But he can usually be persuaded to carry on with the walk which today was fairly brief and uneventful; no major spills and he managed to remain ambulatory the whole time.

We got back into the car and aware that we were approaching the end of the medication cycle and therefore heading into uncertainty, I thought rather than going immediately home, perhaps we could just drive to see some sights. Was there anywhere he'd like to go within these parameters? Answer: I want to go bowling.

Now, Michael has an odd fascination for bowling even though when he plays he usually falls repeatedly causing great alarm and consternation among the staff and patrons at the bowling alley. I have to assure them that he is okay and no, he's not drunk, and Michael happily plays a few games surprisingly well. But that was all before the latest crisis in November when he was hospitalized. Since then he was housebound for the first month or more and it's only recently that I have felt he has improved enough that we can even entertain thoughts of going out for little outings let alone a trip to the bowling alley.

The bowling establishment that we visit is down several stairs with no handicapped access so I must be absolutely certain that Michael is completely ambulatory for the entire visit before I will contemplate such an excursion. Even then I would be nervous of a premature wearing off of his meds making departure from the premises nearly impossible. So today, after already spending an hour at the mall, I knew with a certainty that a trip to the bowling alley would end disastrously. My response was an emphatic NO. I could tell by the slightly hurt look on his face that he was annoyed. I explained in probably my best condescending tone the reasons for my decision and asked if he understood that. He responded curtly that yes, he was still capable of understanding that. I suggested that we plan to make a trip to the bowling alley a priority as an outing this week to which he muttered, "That will never happen".

Michael knows my aversion to bowling. We have enjoyed all kinds of activities together over the years; cycling, skating, cross-country skiing, hiking, camping, to name a few, but bowling is not one of my passions. I used to bowl as a kid and enjoyed it, in fact was rather good, but frankly I now find it rather boring and I hate being stuck in the bowels of a dark, seedy stale-smelling bowling alley. I will relent on occasion but not today. I was sincere when I offered to go another day so when he muttered that remark I was suddenly very angry.

We were driving by now so in my rage I jacked up the music and headed for home seething. Then I found myself pulling into the bowling alley parking lot which was en route to home. In my nastiness I spat out, "If you want to bowl so badly go ahead. Here's your bank card (I have had to manage the various bank cards because he loses his wallet regularly, usually in his sock drawer). Call me when you are done." Let someone else take care of this problem for a while, was my bitter thought. Michael looked perplexed. He groped around to find his wallet. When I asked him the phone numbers he'd need to contact me he started rummaging around in his wallet to find the scrap of paper on which they were written. This uncomfortable process took ten minutes or more, all the while the car was idling in front of the bowling alley with my four-way flashers blinking. I was watching his valiant efforts to just summon up what was needed to get out of the car alone when I relented. We went home.

When we were finally back in the house, both of us avoiding eye contact, he confronted me at last, challenging me on the bossy tone I had taken in the car and complaining that he didn't like to be spoken to like that. As is my way, I dissolved into a mass of tears, angry and remorseful all at once. I explained again why I couldn't possibly have taken him at that moment and how it was unreasonable of him to expect anything else. He apologized as did I. And then, miraculously, the aura of annoyance and self-pity that had enveloped me for a whole day suddenly dissipated. I was back to feeling okay.

What was so comforting to see in this was not my release of anger and annoyance, which as the caregiver I need to always keep in check. There's no excuse for it. Instead it was the annoyance and pique that Michael expressed. At this late stage of his disease, expression of any kind is rare (except, it seems, tears of something like joy over displays of human achievement) especially to me. He must feel the burden of gratitude that he thinks he has to show me. As a total dependent he is most likely afraid to express any complaints about his care. It's too frightening for him to challenge me for fear that I might buckle under the burden of his care and hand it over to someone else. What he doesn't understand is that it is a joy for me to have an actual lucid conversation with my husband and debate and express things to each other - and cry together. For a moment or two my feisty husband was back as was his refusal to be treated badly. He swore to try harder. I did too. The thing is, I'm the only one who needs to change here.