Dreading the home-care crunch

They were detailed studies into the impact of informal care for the elderly and the infirm, and both suggested in the tidiest and most clinical of terms that family members caring for an elderly parent or spouse report feelings of severe stress, depression, anxiety and anger.

Nancy White, manager of home and continuing care development at the Canadian Institute for Health Information (CIHI), called the reports a “first snapshot looking at understanding what’s going on in Canadian home care.” She added: “This may be a sad story but it’s an important story that families need to understand, and the health care system can use these findings to prepare for the future.”

Old news

Well, yes, it’s a sad story and it is certainly an important one, but it’s one that should be well known by now, because scores of Canadians go through it day in and day out,

And even if an illness is a short and catastrophic one, the damage it can do to individuals and families can be close to irrepairable.

When my mother got her first cancer diagnosis, she was pretty much herself — matter-of-fact on the phone and careful to keep her voice level. Later, when it was clear the cancer was in many parts of her body, she still found a way to sound scientifically direct about it, before allowing herself a short telephone breath of tears.

Worse to come

When the cancer really took hold — when it was in bones and liver, and probably brain, when she thought the Rocky Mountains outside her hospital window were a staged backdrop because she still lived in Halifax — and when the hospital could do no more and sent her home to wait for those days or weeks of “someone else needs the palliative care bed more,” the hole that is informal care opened wide and swallowed us up.

My older brother did it for much longer than I did, because he was the closest and his job gave him the most flexibility. This was when she needed 24-hour care, weeks of being too weak to lift herself off the toilet or up from the floor when she’d rolled out of her bed because the pain eased on the solid floor. Home care in the daytime, and sometimes at night, but no one could help her up alone, and there is nothing as plaintive as hearing your mother call faintly and desperately for help from nearby.

And when I got there, you could clearly see the toll it had taken on my brother. He was gaunt, his face drawn, and the relationship between him and my mother was irretrievably changed: parent was child, and child, parent. His, the voice of authority, hers, the wheedling warble of someone turning the emotional screws, because that was the only tool she had left.

Time heals

The only thing that I can hope is that time has repaired some of his memories — because he deserves better. Perhaps his relationship with me and my younger brother has been changed, too — because everything we saw, he saw 10 times worse. And every joy he had with her in life, had all the more chances to be overwritten by the exhaustion and soul-stripping emotion.

Because it’s memories that get blasted the most — it’s hard to remember the mother who took you swimming at a Nova Scotia lake when that same woman can no longer even feed herself. It’s hard to remember a model of physical and mental strength, when all that strength has fled and you are close to the only care for a woman who has retreated to the reactions of a child.

Small treasures

There are still things that bring a smile — when she would tell us of her latest hospital escape, and being returned by the firefighters. Or watching her tasting the hand cream a friend had just given her, touching the open bottle to the tip of her tongue with a child-like expectation it might be white chocolate. The occasions when she’d look at you as if finding a clear window for the first time in weeks.

For many of us, the experience itself will be “the first snapshot.” And by then, you’re already living right inside the feature film.

There is talk of a silver tsunami — of the Baby Boom generation pushing its way into old age and overwhelming our services, like it has pushed its way into most things.

Prepare for the future now.

Talk to anyone who’s experienced caring for their parents, and you’ll hear the same things: families stretched to the limit, relationships close to ruined, your soul scarified by what you think someone wants (especially to be kept in their home) and hitting the wall of exhaustion, lack of sleep and sheer desperation that comes from our health-care system essentially abandoning you on your own with a prescription diary, bottles of opiates for a woman who sometimes can’t remember how to swallow, and a situation nothing and no one has ever prepared you for.

The overwhelming feeling you’re left with, except for the obvious ones of guilt and shame?

Shame that you might not have done enough, guilt that perhaps even the death of a loved one brings a particular relief?

That when it comes to any kind of safety net, the system that deals with the failing health of our elderly is a shambles.

And it’s going to get worse.

Russell Wangersky is The Telegram’s

editorial page editor. He can be contacted by e-mail at rwanger@thetelegram.com.