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Friday, January 22, 2010


I have never availed myself of the therapeutic services of a psychologist, though in the past few years our local public health service has given me the opportunity if I need it. Who has the time when you are a full-time caregiver? When I do have time off provided by the same public health service, I prefer to go out and do something fun instead or even just deal with household chores, also therapeutic, allowing me to feel I am controlling at least small aspects of our lives.

So on a recent Friday I took one of my therapeutic respite moments and met an old friend. We were going to see a movie that afternoon but she had heard about a psychic fair she really wanted to attend. Did I think we could do both? Well, my time was limited and on thinking it through I realized that going to a movie wasn't the best use of our time. After all we'd be facing a big screen for two hours and would have to be quiet, a tall order for us when we get together. I suggested we do lunch instead and then, if there was still time, go to this fair that opened later in the afternoon. It turned out I could only manage 30 minutes at the fair but it was enough time, I hoped, to ease my friend into it.

I am not a follower of psychic phenomena. It's not that I don't believe in it; I have had too many of my own interesting experiences to discount it. I feel it can be dangerous territory for someone who is vulnerable and suggestible; some information to a troubled mind could be difficult to process and might be misinterpreted. I know that in my case, signs that I have been certain of have turned out to be nothing more than idle fancies. But I was willing to tag along and I was curious.

As I had only a short time and my friend was undecided which psychic to choose (there were over a dozen at the fair making all kinds of claims) I said I would go first, pick the first psychic who wasn't busy and my friend could sit in and observe, this being her first time too consulting a psychic. For me it had all the feel of playing Ouija board with my friends as a kid, summoning up the names of the boys we would marry, or the time at boarding school at the age of 13 when my roommates and I had a seance with the lights dimmed and a fluorescent clock in the middle of our circle as our "candle" (no flames allowed in the dorms for obvious reasons) . That experience scared the living daylights out of me because we had a very convincing girl serving as our "medium" and she fell into the role with great gusto. I swore off the practice right then and there.

So it was with this attitude that I sat down for my reading. I was going to offer no clues to this woman who asked me to shuffle the tarot cards before she laid them out on the table. Her brow furrowed as she announced my relationship with my husband was troubled and that I had a very great need to make a trip to British Columbia. Well, at the mention of BC she had my attention.

A trip to BC has been on my mind for years ever since my sister became so ill five years ago with cancer. We had been trying to get out there for the past three years but preparation for a possibly life-changing surgical procedure Michael was to have took two whole years to finally unravel. We had stayed close to the phone all that time awaiting word on a date for this operation called Deep Brain Stimulation only to be kept in the dark and finally told that he was no longer considered a good candidate. We had wasted all that time. When I heard in September that my brother-in-law, my sister's primary caregiver, was also ill I immediately booked a cross-Canada train trip to leave mid-October, finally feeling we had the freedom to do so. I had only an inkling how ill poor Fred was and he wasn't to be diagnosed with terminal cancer until late November just a month before he died.

It was to be my first visit back to my beloved BC in thirty years. Finances, four children and my morbid fear of flying had prevented an earlier visit. Besides, my sister and her family had come out to visit us regularly every year until her latest illness so at least we were not deprived of their company.

That train trip never happened. At least not all of it. We made it to Winnipeg after two nights on the train but we had to abort rather dramatically and fly home because Michael's illness suddenly worsened and it was obvious that a continuation of the trip would be disastrous. My options were to carry on with the trip or return home, but given how sick Michael was, I knew I needed to get him home immediately and I couldn't inflict his illness on two already very sick people. At that difficult moment climbing aboard an airplane was the only option so I had to swallow my fear and just do it.

I was heartbroken at not seeing my sister perhaps for the last time. What I didn't know was that it would have been my last visit with Fred too. So when this psychic mentioned BC I was suddenly all attention. What she did not know at that point was that Michael is so ill and the tension between us is simply the tension that exists when a spouse has to slip out of the role of wife and become the nurse. Certain aspects of an intimate relationship must change but there is certainly no animosity between us. As for BC, I had long ago made my peace with not going out there, at least not yet and probably not before my sister dies.

The psychic continued to insist on my troubled relationship with my partner and spoke of an imminent separation between us, that my husband would go away and his departure would spell financial difficulty for me. At this point I offered that Michael is chronically ill but gave no further details. Her furrowed brow cleared and she suddenly seemed to understand. She told me my husband would need to go to a long term care institution and that would be the cause of our financial strains. This decision would cause me a great deal of stress, she said, because he would live a long time and this would be a long term commitment.

During Michael's most recent crisis and hospitalization, he was convinced he was dying. A doctor said that even though there were no physical indications to back this up, sometimes a patient has a sixth sense about these things. All of us braced ourselves for this; we did a lot of grieving in anticipation. In fact through the past three years , with Michael's TIA and heart attacks we had long ago accepted this possibility and had many occasions to prepare ourselves. So when Michael came home from the hospital this time and in worse condition than ever, we were convinced his time was limited. I immersed myself in his care, resumed my role as his sole caregiver with only a few hours of respite a week, feeling I could manage this at least in the short term and would reassess my capacity when things settled down.

But the psychic was speaking about very long term care. Up to that point I had not really given it much thought, not being able to think that far ahead. With advanced Parkinson's Disease caregiving is a very in-the-moment kind of commitment. You never know what the next hour will bring, let alone the next year or more.

Now, I do not put much stock in this woman's predictions but what she offered me was the opportunity to face the very real possibility of a much longer commitment to this disease. I had to face my inadequacies, my probable inability to carry on with the level of care I have already been providing and I had to come to terms with the very difficult decision I might have to make about handing over his care in the not-so-distant future.

I came home feeling rather shaken at such a prospect but the way I deal with any problem or crisis is to come up with a feasible plan. That night I sat down and looked critically at our financial situation and devised a strategy that would allow me to pay the heavy costs of institutional care and, at least in the short term, keep my living circumstances as unchanged as possible. I felt confident that it could be done with careful management. The emotional toll of having to let go of his care would be a more difficult proposition but as I have learned in the past, having a plan and a sense of control over a situation, no matter how small, can go a long way to easing the emotional response to a crisis.

Whether I believe this woman's prediction is immaterial. I do believe that she is an intuitive and, with my supplying a few key details, was able to mine the depth of my subconscious concerns that I had not yet faced. By the end of the day I had steeled myself for the long haul recognizing my limitations and acknowledging that at some point I might have to let go of Michael's care and by doing so face the difficult consequences. I felt gratitude to this woman whose name I cannot even remember. She provided me with a much needed therapy session that gave me a sense of control over the few things that a person can hope to control in this life. In the meantime, back to the task at hand.

Wednesday, January 20, 2010


Since Michael returned from hospital on November 27, he has made a slow and steady recovery back to relatively solid mental health even though his physical symptoms of Parkinson's Disease are much worse. It seems that the powerful neuroleptic drug administered to control the extreme psychosis he was experiencing interferes with the body's ability to process the PD drug that allows more fluid movements. So Michael spends most days in and out of sleep, but some days he is lucky to have more than a couple of hours of mobility.

The past two weeks he has improved to the point that we have actually been able to make a few little trips out in the car, attend his Tai Chi class for a few minutes and take the occasional short walk down the road, though only yesterday we had to abort a walk when his drugs suddenly gave way and he was frozen by the side of the road. I started to run to get the car to take him home but a kind neighbour was driving by at that moment. She stopped to get Michael into her car. Mind you, even that was a challenge for poor Michael who couldn't easily get into her vehicle, his rigidity so severe, causing traffic to back up on our quiet little street. But minutes later we got him home and safely back into his wheelchair. That cycle of drugs gave him a mere 15 minutes of fluid movement.

Once again I am reminded that this disease is not on a straight trajectory. It is always a roller coaster ride from day to day, minute to minute. We are still not certain what caused the deep fall he took into severe mental illness beginning in early October. We do know that once his powerful drugs took full effect (three weeks) he was given a reprieve from the nearly constant psychosis. But the past few days have seen another little dip into the abyss. What could it be? He complained yesterday of mild cold symptoms and in the past that has been enough to render him more physically disabled for a few days. It might be that. His night time ravings have been focused on the disaster in Haiti; he thinks we are there and in the midst of terrible horrors. That whole tragedy has been enough to unnerve even the most sanguine among us so it's possible that is the cause.

What alarmed me last night was hearing him moving around a lot in the night (I have a baby monitor that allows me to hear every move he makes). At first I waited to hear if he called out for me as he has been doing the past few nights, in a state of high anxiety. There were a few minutes of rustling around but when I heard the floor boards squeak I was down the stairs and in his room in record time. He was out of bed!! Now to most that might not seem like much of anything, but for the past two months since his return from hospital, Michael has spent every night frozen in one positon, on his back all night, and by morning he needs great assistance to even sit up. But here he was at 1:30 am fully functioning, wandering around his room after having climbed OVER the rails of his hospital bed. No easy feat for the most fit among us let alone for someone with advanced PD many hours after his last dose of medication. The worrying thing about him now able to get out of bed himself in the middle of the night is that his room on the main floor is close to two outside exits, an easy escape if he is in the throes of mental anguish and delusions. My hope is that our two dogs, who sleep outside his room, would bar his way before I could reach him but there is no guarantee of that.

I spoke to our nurse this morning and warned her of this new problem which may never happen again but I am alarmed enough to be on high alert tonight. My hope is that we are not slip-sliding back into the black pit. At least this time I have strong medical support behind me and at the end of the phone line any time of day. Great comfort I can assure you.

Thursday, January 7, 2010

The sad passing of an unsung hero

On December 26th we heard the sad news that my brother-in-law Fred had died in the early hours of Christmas morning. My sister and her daughter spared us the news until the next day probably knowing our Christmas day was a busy one. Nonetheless we did hear on Christmas day via an email written the day before that he had checked himself into the palliative care facility that day, convinced his time was near. The various people in his life humoured him because he wasn't showing the signs of imminent death, but he remained firm on the matter. And leave us he did in short order the next day. He had been suffering from lung cancer for a short while but was not expected to die so quickly.

His death resonated with me. Fred had been a dedicated caregiver for many years to my dear sister who has suffered from many ailments throughout her adult life but most recently with a very nasty form of cancer. The past three to five years have been particularly difficult with my sister in and out of hospital for cancer treatments, lengthy hospital stays for fractures sustained from bad falls as a poorly defined neurological condition rendered her very unstable and ultimately confined to a wheelchair, as well as a surgical procedure to clean up an old problem in her skull dating back to her first major medical problem, an advanced brain tumour in 1977. My sister has a tremendous will to live and has frankly outlived all predictions of her mortality. She has befuddled the medical community ever since that first diagnosis. In fact, when faced with her current neurological problems, the doctor merely shrugged and said that no one had survived what she has survived.  He had no idea what was wrong with her and made no effort to investigate.

Of course everyone has been very concerned over the years about my sister's health. She quickly recovered from the first brain tumour and returned to work a few months later, all the while caring for her infant daughter born just a couple of weeks before the tumour was discovered. Ann had to have two more operations to remove the recurring tumour and, in the end, was treated with radiation therapy. We have all watched her with awe, carrying on her life with complete grace and strength. She has had a very full life so far.

But in the background was the husband, the unsung hero of this tale. Fred valiantly forged on, with his wife back and forth to the city hundreds of kilometers away for treatments and surgery over the years of their marriage. Fred held down the fort, caring for their young daughter, juggling a busy career as an educator, and managing the household while Ann recovered each time. I simply cannot remember over the 33 years of her ill health how many crises there have been, obviously too many for anyone to keep track of.

Fred no doubt got grumpy through all these ordeals, though as far as I know their marriage remained strong. They stayed together, need I say more? But in the past few years the job became very onerous and in the last couple of years he had to give up everything of his own to care for his very sick wife. Once in a while he would have a day of respite and dash off to the nearest small city to let loose, returning in the evening to carry on with his duties. In the past few months he apparently became quite crabby and a bit of a nag but it was all explained a few short months ago when he first started to manifest the devastating symptoms of his disease.

Now, what is so remarkable about Fred's passing is how quietly and resolutely he did it, exactly how he wanted to. He refused all medical intervention except for a few medications to relieve some of his symptoms. Over a year ago when my sister's cancer returned for the third time doctors gave her less than a year to live telling her she would not see Christmas 2009. We all prepared to lose her, we all braced ourselves for the inevitable, but we all believed Fred would live to mourn his wife and perhaps enjoy a few years of freedom from the daily inescapable grind of caring for the very ill.

But as soon as Fred learned of his prognosis a few short weeks ago, he made up his mind. He had watched his dear wife embrace every single treatment option the medical community threw at her and subsequently suffer the side effects. Ann never complained to us about how ill she must have felt through three separate bouts of chemotherapy,  but I'm sure Fred knew only too well how bad it must have been, being on the front line all that time. Ann chose to pursue those treatments;  Fred had to accept all the consequences and watch his dear wife suffer. So he chose no treatment for himself. He chose to spare his daughter, their only child, the pain of caring for him and for her mother all at once. And on some subconscious level he must have thought he only had to make it as far as Christmas, that being the latest Ann was expected to live.

I do not think that either approach to serious illness, to pursue treatment or not, is right or wrong, only different, but I do think as a caregiver of the seriously ill one has a completely different perspective on life and illness. Survival is dependent on not just good medical care but especially excellent constant home care by someone you love and trust. As I have seen with my own husband, only my care seems to sustain him and any institutional care, no matter how excellent, does not measure up to loving care. In fact he deteriorates quickly anywhere but home. But sometimes that caregiving can cost us the ultimate sacrifice. Fred could have chosen to live longer but he knew he would have been a burden to all those involved. He simply couldn't do it.

His daughter saw his passing as quiet, undramatic and dignified. I saw it as the heroic last gesture of a man who had given everything to contribute to his wife's longevity and well-being. And now I am sad to report that my sister's health seems to be failing fast. Her tower of strength is gone.