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Thursday, May 27, 2010


Our daughter is graduating from university next week. The convocation ceremony is in Montreal and though we live only a two hour drive away from the city, it feels like the other side of the planet with Michael's disease. Two weeks ago I made my first foray away from home in months to pick up this daughter to come home for the summer. That took a lot of organization from arranging the logistics of the move itself -not a big problem since I've done it a few times before for her and her older sisters - to the arrangements surrounding Michael's care for the day. Given some recent problems I've had with consistent care for Michael, I was concerned that something might scuttle the carefully made plans at the last minute. In the end the move went off without a hitch and Michael was well taken care of for the 5 1/2 hours I was gone.

But this event is more problematic. The ceremony starts at 10 am which means leaving at a very early hour to drive down through rush hour traffic to arrive on time. I contemplated leaving the night before and placing Michael in respite care, in fact went so far as to make inquiries, but when I talked about it with him, gently preparing him for the idea, he fell into one of the worst panic attacks I've seen in a few months. If I were to go and place him in care, I could face a very sick man upon my return. Family and friends have offered to stay overnight which is very kind and thoughtful but my fear that he might have an attack in their care for what would be at least a twelve to twenty-four hour day made me very uncomfortable. I know I have entered a dangerous zone of having sole responsibility for his care and seeking very little respite but the consequences of a psychotic melt-down outside my care can be frightening even for medical professionals, as we have seen in the past, and even more so for Michael who then needs weeks of convalescence afterward. If something were to happen I would have trouble forgiving myself. It's that simple.

With all this in mind and a creeping exhaustion every time I considered planning to go, I reconciled myself to missing the occasion but happy in the thought that my brother, his wife and another daughter were all making plans to go. Our family would be well represented even with her parents absent.

Then two days ago something changed. Our normally composed daughter ran out of her room excitedly but managed a calm announcement: Not only is she on the Dean's Honour Roll, no surprise if you know this young woman, but she is to be awarded a prize as the graduate in her field with the highest marks. Something to be celebrated.

Suddenly I wasn't content with the earlier decision. I called relatives to tell them the good news and spent the rest of the afternoon planning. Should I try to get someone after all? With a week to go finding someone willing would be difficult even though a dear friend and my brother nervously offered. Besides, Michael is able to grasp the importance of this occasion and really wants to attend so what about trying to take him?

Driving, out of the question. Too many things could go wrong on a road trip especially if he has a panic attack en route. Then I would have to tackle downtown Montreal traffic and struggle to find parking, not an easy or enjoyable task, one that I have tried before and hated, not to mention the fact that as my anxiety increases, as it inevitably does in downtown Montreal traffic, so does Michael's, increasing the chance of a panic attack. Also we would have to leave at an impossibly early hour, long before he is even awake, let alone mobile, most mornings. And there is the fact that for seven months our only outings have been at midday when he is most well and calm. We never go out in the morning when he is mostly asleep, nor after 4 pm when he can become restless and slightly manic. That is the time of day I have to watch him very closely because it is then that he is at his most delusional, believing he can do anything at all. It is the time when he seems to want to operate or "fix" lawn equipment in his bare feet for some reason. Evening outings never happen. Should I try to go the night before with him? Emphatic NO. Michael sleeps in a hospital bed, suffers incontinence and is very likely to be delusional and confused in a different place. And I would get no sleep at all, a serious consideration if I am driving.

Up until last night I hadn't even considered the most obvious transportation alternative, the train. I suppose after our aborted trip to visit my ailing sister in BC last October I had ruled out ever taking the train with Michael again, or going anywhere for that matter. But after our visit by car to Montreal three years ago for the first of many medical appointments for a surgical procedure he then never had, and nearly going crazy for all the above reasons, we took the train very successfully for all subsequent visits. It's faster than driving; it's comfortable; we arrive right downtown, close to our final destination and as a certified disabled person, Michael is entitled to a companion who travels for no charge, so it ends up being no more expensive than driving. We would have to be up no earlier than if I were to drive and Via Rail in the past has been tremendously helpful assisting us. I am counting on the familiarity and the brevity of this journey to keep him calmer than on the cross-country trip.

With this in mind I resolved to book the trip, cross my fingers and try to be completely detached if everything unravels at the last minute preventing us from going. I informed the sister who will be flying in for the event and she suggested meeting us at the train station when we arrive at 8:30 am to help out with Dad. She also reminded me that she and the graduating sister will be staying in a hotel close by for the occasion (they had long ago made plans to paint the town red together after the ceremony) and if Dad were to have trouble, one of our party could wheel him back to the hotel and park him in front of a sports channel - almost always a soporific - for the duration. Things are falling into place. I will be armed with extra medication for both the Parkinson's mobility problems and the potential anxiety attacks he may suffer and I won't be shy to use them to get through the day.

The graduating daughter has urged me not to worry about it. She will understand if, in the end, we cannot make it. I know she will but we've always tried to be present for these momentous events in our children's lives and I want to go. I may, at the last minute, have to cancel or I may consider those offers to stay with Michael and go myself after all. Last night he awoke repeatedly, confused but certain that this was the day to go to Montreal so it is obviously preying on his mind. As with everything associated with caring for him, we'll just have to see and be ready to make changes at the last minute. And I will have to work on complete detachment whatever happens.