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.