“And if the darkness is to keep us apart
And if the daylight feels like it’s a long way off
And if your glass heart should crack
And for a second you turn back
Oh no, be strong.”
— From U2’s “Walk On”
If you are lucky enough to find your soulmate in this world and fall in love, you dream about the life you will live together.
And you hope it will last forever.
But that’s not the way life goes.
Sometimes life throws up obstacles, horrible obstacles that make you contemplate and confront the worst, most painful, most heart-wrenching of possibilities.
Life puts you, and love, to the test.
My friend and colleague Deana and her husband Eugene were recently subjected to one of the greatest strains a couple can face, after spending more than 30 happy years together.
Cancer ambushed Eugene’s life — their family’s life — and was relentless in its fury, attacking on many fronts.
He passed away this month.
He was 60 years old and well-loved.
He suffered in the past year, but he had good patches, too — optimistic, hopeful times when he rallied and was able to do some of the things he enjoyed again, followed by disconsolate moments when his health flagged.
Through it all, Deana was the solid, immutable presence by his side.
She advocated for him, cared for him, cajoled and comforted him.
I can honestly say I have never witnessed a greater devotion nor a greater determination in anyone to fight for their partner’s life and well-being.
I have the greatest respect for the strength of her love and loyalty.
She says his courage fed her resilience; I suspect the feelings were mutual.
Deana has given me permission to write about the path that led to this anguish and grief because she wants people to realize how important it is for people to discuss end-of-life care with their loved ones, while they are still able to do so.
She and Eugene had not outlined their advanced care plans formally, in writing, but they had tough, frank conversations as circumstances arose and she was tenacious and uncompromising in ensuring that his wishes were honoured.
I know there were times when she felt she was struggling against the system; times when she pushed to have his medication reduced so that he could remain lucid as much as possible, which is what he wanted.
There were other battles, too. In the last few hours of Eugene’s life, Deana asked health-care staff — whose best intentions were never in question — not to give her husband sponge baths or to turn him over in his hospital bed, as it caused him too much discomfort and was not really beneficial at that point.
The staff were thinking of Eugene’s well-being, no doubt. Deana praised their warmth and understanding. But when death is near, you don’t worry about bedsores.
I have learned, through talking to Deana and through my own experience of losing a friend, that you can’t take for granted that medical professionals will always know exactly what your personal boundaries are when it comes to treatment options.
They do not necessarily know what your beliefs are, or what you would rather not bear, or precisely how much dignity you are willing to have stripped away.
This is why it is so important to designate someone to speak on your behalf before you find yourself in a situation where you can no longer articulate your wishes.
There are many ways to map out what you do and do not want if you should become terminally or irreversibly ill. This is just one of them.
The group Dying with Dignity offers members an advance care planning kit that lets you and your designated health advocate make tough decisions in advance and put your instructions in writing in case they are ever needed.
The kit outlines various scenarios where your wishes would come into play. For example, say you had advanced dementia and no longer recognized your loved ones and could no longer communicate or ingest food or liquid orally. Would you want a feeding tube inserted into your stomach?
Some people would, some would not.
These are not pleasant situations to contemplate, but it’s something I would rather do now than have someone else decide for me later. Nor would I want to be forced to make uninformed decisions on behalf of someone I love in a time of extreme stress.
Deana knew beforehand what Eugene wanted, and at the darkest times made those tough decisions, as difficult as they must have been for her to make.
She was not just by his side when he died, she was there to support and care for him every step of the way.
Theirs is a love story.
She was his lionheart. His champion.
Pam Frampton is a columnist and
The Telegram’s associate managing editor.
She can be reached by email at