Freedom

Loss of freedom, as we have known it, is a common adjunct to any disease. In the case of Parkinson's Disease it is the slow degeneration of physical capacity that limits freedom, and later in the disease for some, the cognitive impairment that limits one's ability to make rational decisions about anything, including what clothes to wear.

Yesterday Michael displayed a rare moment of pique which I took to be a good sign of some improvement after weeks of severe mental illness, delusional behaviour, hallucinations, psychosis. After a hellish few weeks of rapid decline in his mental health, triggered by unknown causes, Michael was hospitalized. This was mostly to give me some respite but also to see him stabilize on the new powerful drugs being administered in an attempt to rid him of his severe psychosis. The hospital stay unhinged him as it always does. He desperately wanted to come home; in fact he packed his bag every day and set off down the hall of his hospital ward determined to leave. He did not understand he was in a hospital and that I needed a few days break to catch up on many nights of lost sleep. He believed he was being held prisoner against his will somewhere sinister. He was right about being a prisoner. After a day or two of outbursts from him, my normally very quiet, cooperative husband had to be heavily sedated and tied to his bed. This has happened before in the hospital so I wasn't particularly shocked to see him bound to his bed but it did motivate me to gather my strength and resources to bring him back home as soon as I could get things sorted out.

The hospital stay, though very troubling for him, did serve a useful purpose. Michael had resisted any change in his home life, didn't want to consider a move to the downstairs bedroom that would make life easier for both of us. He has always had difficulty with change and this small change loomed large in his mind as yet another loss of his freedom. Upon returning home, I had no choice but to set up a hospital bed on the main floor which allows full wheelchair accessibility. We have managed over the past few years to refurbish our house to render the main floor fully accessible for him, including a ramp to the outdoors and a washroom with roll-in shower. Michael was so happy to be home that he was prepared to accept any conditions in order to do so.

Michael became the model patient at home, grateful for things that looked familiar and feeling better mentally on the new drug regimen. His first weeks at home were spent mostly sleeping, watching TV, in short, doing very little after the extreme hyper-activity of the pre-hospitalization break-down. The new drugs rendered his Parkinson's medications less effective, so most of the day was spent immobile and dopey, a condition I welcomed after the weeks of manic behaviour . I actually managed to log some hours of sleep and was feeling more rested even though his physical care needs throughout the day had increased significantly. I was grateful for having spent the past couple of years improving my upper body strength because I was using it daily.

As he stabilized over the weeks, though, he began to sleep less and the medications started working faster and longer throughout the day. Inevitably that led to restlessness. That worried me. Were we beginning another downward spiral into the madness of before? I was beginning to see more anxiety creeping in especially around what I call his witching hour, the time around dusk that has been especially problematic for him for some time. At least we now had pharmaceutical ammunition to calm the wild beasts if necessary. But how to keep him engaged during those hours when he was feeling better? The problem, that I was so relieved to be free of for a while, was that Michael, who used to be so very competent when it came to mechanical fixes, household repairs, just about anything, in fact, still believed himself completely capable of all these skills. He absolutely lacked the ability to judge his competence anymore. So, just like with a toddler who is learning about his environment, I had to watch him constantly, trying not to let him know he was being shadowed and observed in case he hurt himself or put us in any danger. He would, for example, try to tinker with the broken lawn tractor and run the engine with the shed door closed, or try to rewire the house if the switch he thought operated a light didn't turn it off.

Yesterday he was feeling well enough to try his hand at some of these tasks again and I, of course, feeling panicky, followed him out to the shed just in case. When I stopped him from trying to fix the snowblower he got irritable and walked away from it into the yard. I went back into the house determined to keep an eye on him surreptitiously from inside, aware that his medication would soon wear off, leaving him at risk of collapse. But it was so nice to see him moving around so freely and comfortably after weeks stuck to the couch or the wheelchair.

Suddenly aware that I couldn't see him out the window I dashed out to check up on him. No Michael! The dogs, restricted to our property by invisible fencing, sat in the driveway looking wistfully down the road. Newly fallen snow showed boot prints heading down the driveway. I ran but couldn't immediately see him down our short dead-end road. Then there he was, rounding the curve in the road heading home. Boy he's fast when determined! I caught up to him trying to contain my annoyance at not having been informed about his walk. His annoyance at having every move monitored was written all over him and he barely acknowledged me. I assured myself he was safe then ran home ahead of him trying to give him the freedom he needed at that moment. Within minutes of entering the house his medication suddenly gave way, as it always does now, and he collapsed into his wheelchair that I had positioned right by the front door just in case. His body language once again was that of the crushed weakened man he is when his medications wear off. But he had enjoyed a moment of self-determination; he had decided to go on that little walk without consultation and enjoyed a few moments of freedom.

Parkinson's disease for sufferer and caregiver is one of constant shifting and change from minute to minute, day to day, requiring a flexibility to change plans immediately if necessary all through the day. There are moments when Michael is very lucid and I enjoy the freedom of a short rational, articulate conversation with him. There are days when his medications work fairly well and we can enjoy the freedom of a short walk together, and he can get himself around the house at times during the day without having to rely on me to push him or transfer him. There are times when he can remember how to turn on the stereo and enjoy the freedom of listening to the radio news or to his music that almost always moves him to tears. There are times when he can offer advice on how something works and actually articulate it and feel the freedom of being of service in the household. But I never know when those times are and the challenge before me every day is to recognize them and allow him the freedom they offer.

Freedom is relative. I am so used to the life dictated by this disease that freedom comes in the form of a day not controlled by psychosis, a night of uninterrupted sleep, a morning when Michael has slept in and I have woken naturally and can enjoy a few minutes alone in the house before the duties of caregiving kick in. A quiet cup of tea, an untroubled walk with the dogs.

But the most magnificent freedom I have experienced lately has been granted to me by Michael himself. I have been the sole follower of the Baha'i Faith in my family and have therefore worshipped quietly, privately, almost apologetically. Michael had never shown any interest though he was always very respectful of my choice. I, in turn, never forced my faith upon him. But Michael's recent descent into the abyss of mental anguish found him crying out for solace of some kind. Drugs work wonders when the crisis is extreme but for the many daily small anxiety attacks I recommended my drug of choice, that of prayer. He has found it to be very effective for calming the moderate wildness of his mind but, because he can never remember the prayers I give him, he asks me to say them every night before going to sleep. Last night found me singing loudly at his bedside, Michael following along quietly. Afterwards I felt such exultation for the freedom of being able to belt out my prayers for once without self-repression. I thanked him for the joyous freedom he now offers me.