When any kind of medical emergency befalls a family, it becomes possible to catch a glimpse – if only a glimpse – of what happens to the lives of those called upon to care for loved ones living with dementia.
The first point of comparison is being unprepared. You don’t expect an emergency. That’s the nature of the beast. Hoping for, expecting, perhaps even assuming a happy outcome on life’s many fronts is deeply encoded in our instinct for survival. And while this optimism can provide us with great strength in moments of crisis, it can also leave us paralyzed, confused, exhausted, and angry when reality does not accord with our deepest wishes.
Nobody expects an accident. Nobody expects blood tests to be alarming. Just as nobody expects their mother or father, husband or wife, child, neighbor, colleague, or friend to be diagnosed with Alzheimer’s Disease.
The statistics about the precipitous increase in Alzheimer’s Disease and other forms of dementia warn us of what might be in store. The media has now certainly noticed. Newspaper reports, magazine articles, and television programs about the growing impact of dementia tell us that we cannot assume that we and our loved ones will be exempt.
Even so, we, as a society, are not very ready when bad news comes knocking. It’s as if we open our front door as we have every morning of our reasonably ordered, reasonably predictable lives, and instead of a calm new day waiting, we find a tsunami about to come crashing through.
Family members are no longer regarded by hospitals and care facilities as complicating, uninformed emotional factors around which doctors have to work.
A significant shift has taken place in the past generation of health care. Family members are no longer regarded by hospitals and care facilities as complicating, uninformed emotional factors around which doctors, nurses, and professional caregivers have to work.
Partly for reasons of costs, and partly because home care can be so effective and can provide such comfort to patients, the highly sophisticated and bureaucratically regimented infrastructure of health care institutions and long-term care facilities have embraced non-professional caregivers as highly motivated and fiercely dedicated allies.
This is a good thing – in theory. As Dr. Sholom Glouberman, of Toronto’s Baycrest Centre for Geriatric Care, recently told ALZlive’s Richie Assaly, “The doctor has some knowledge the patient doesn’t have, but the patient and their caregivers also have knowledge the doctor doesn’t have. Only together can they figure out the care needed to cope with one’s specific conditions.”
But it’s not always such a good thing in practice – especially as the impact of dementia and the cost and the demands of long-term care take their toll on those who are called upon to step into the breach. As a society we are about as unprepared as we can be.
Caregivers struggle to get basic practical information. The emotional, financial, and physical cost born by non-professional caregivers has remained, for the most part, an unstated, unrecognized variable in a complicated equation.
Where are the national policies? Where are the guidelines for employers? Where is the support that we should be providing for those who find themselves, unprepared, on the front lines? Where is the care for the caregivers?
These are questions that ALZlive is committed to asking. We are no less committed to providing answers, on this, The Longest Day, and our objective is to become a site where caregivers can turn for information and for the comfort provided by a community of common interest.
But for now, it is important to admit that there are many more questions than there are answers. We have a long way to go before we are ready for what we don’t ever expect.
About the author
David Macfarlane