Feb 14, 2004


'He's lost so much weight now, I can pick him up under his arms and lift him into bed."


Her voice caught and she raced on, telling me how she gets her husband to eat. "It takes him four swallows to get any liquids down. But the truth is, he hasn't any appetite anyway, and as for watching TV, he hasn't the energy for it. I think it's just the familiarity of the noise that he wants, so he doesn't have to think about too much."


As for herself, she's worried that she doesn't know how to care for her dying mate and she is terribly disappointed in the doctors who are looking after him and are supposed to be guiding her. They have made suggestions, and then not followed through. They had stopped his diabetic drugs and then suddenly he was up every hour to pee through the night. And she isn't sleeping because she needs to be up to help him to the bathroom.


"I think they made a mistake, but they are so kind and they come twice a week to the house, we don't even have to go out. But shouldn't they have known?" I slow her down and ask about the simple stuff of care. Who is helping? Does she have a commode? Who is driving them to his chemo treatments?


She's mustering everything she has to look after her man. Yes, she has wonderful friends and a strong family including a daughter-in-law who drives into town every day to run the errands and take the pair to hospital. But disgorging her anxieties, she rushes on. "You know what I feel? After 50 years of him looking after me so wonderfully, this is the least I can do for him. So who cares if I'm not sleeping? I need to be there when he wakes up because he's not able to manage himself."


I ask my patient if she's still finding time for her writing -- she's a rejuvenated, late-life poet, but that's brushed aside, like lint. They have had a wonderful love affair throughout their lives, and she knows this. Their lawyer has been summoned to "put things in order," but as a couple, they haven't put much of anything in order yet. Their order comes in the minutiae of their day-to-day struggle of living, of holding to timeworn routines, of drawing hope from those unforgiving chemo treatments.


For another of my patients, the love affair has been a true May-December match. He was a widower in his 60s when they met and she, a driven career woman in her 40s, past her childbearing years, considered herself well ensconced in her solitude. The magic buzz that grew into passion took them both by surprise. The race to merge their lives raised a lot of eyebrows. But if life is counted in minutes lost, then this pair felt they had a lot of catching up to do. So the suddenness of his illness shook them to the core. Of course, she had no expectation of outliving him, and she had been blunt with her friends when they had cautioned about a lifetime spent nursing an old man. And he had been equally scathing with his friends when they had implied that he was marrying to secure a caregiver.


But that's what she's deeply engaged in doing now and it's been a crash course in delegating, training, co-ordinating and managing all the unfamiliar details of supported home care.


These last three words describe the work of many wonderful palliative-care teams that have sprung from the hospital base to provide family members with options in the care of terminally ill relatives. The teams help families with the supports and services that let patients remain in their own homes with drug and nursing support. Part of the mandate of these teams is to know the limits of assisted care in any household and when it may be more appropriate to make the transition into hospice or hospital care.


Most of us who use these teams do so around cancer diagnosis because it's here that most of a family's questions arise in quick succession and with urgency. Even then, there are many times when a change for the worse happens faster than anyone can predict. At that point, family conferences are called, caregivers assembled and decisions are made about comfort, treatment, quality-of-life issues, mode of dying. Thus armed, families soldier on, helped if not relieved.


But in my experience, while working with professional caregivers alleviates much of the chaos surrounding the decline of a loved one, the process is not infallible, and the family may be left feeling unsure of what is happening and what to expect. Observations about how speedily or to what degree people are declining may be plain wrong. Most palliative-care specialists won't be drawn into discussions of "How long do we have?" And the outsider's view of the process may preclude any inherent and even quirky strength to rally, to rewrite the script that is written into every human being from the day he or she is born.


And the caregivers hold their collective breath, hoping against hope for that rally, that defiance of the odds, their need to hang on to any kind of life outweighing the prospect of going on alone.


But if it is all passing too quickly for these two couples, whether it's been 50 years or only five, one thing is clear: It's been a grand ride for all of them. They reflect the joy of a shared life, and all the riches that people provide for each other through their zest for life and their joy in each other.


Both of these women admit to wrapping their arms around their men to get them to the bathroom upright.


And both have marvelled at the power of their love to enable them, weary and heartsick and fearful, to do just this thing -- wrap themselves around the core of their love and know its power.


It is a love to last a lifetime. And it's a reminder that "life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out and loudly proclaiming, 'Wow, what a ride!' "

Dr. Jean



Doctor. Writer. Athlete.

Advocate. Adventurer.