A couple of days ago I received an email from
Patty Doherty. I'd just thanked
her for the thought-provoking
comment
she left recently. Patty's email was also thought-provoking, and it seemed a
waste that only I got to read it. Here, with Patty's permission, is what she
said:
Mike,
Please understand by leaving that comment, I in no way am implying you need to
live up to anything. With this disease, there is such a battering of one's
ideals, it's hard to even recognize oneself in what remains.
The fact is Alzheimer's is completely destructive. If our life is a construct
of all we have done and failed to do in our lives, Alzheimer's is its
deconstruction. And we, the witnesses of our parents dismantling, are left to
cobble together, as best we can, a constantly failing system of care. The care
and treatment of Alzheimer's patients is severely neglected by society, because
it's hidden. When you mention that you are unable to find adequate services for
your parents at home, you will be very surprised to find its just as tough to
get adequate services in a nursing home. If you feel a pain in your stomach, it
may be indigestion, or it may be the feeling one gets when over a barrel. Can't
get decent care at home, can't get decent care in a nursing home. All of it,
ever last bit of my experience was heart shredding. And what you probably
already know, a nursing home's location/cost/experience does not confer quality
of care. I am afraid if you were to set up your hidden granny cam in
any nursing home - pick one - you would have more information than you
could bear.
Are there any opportunities for live-in care at your parents' home? Where a
person might be able to move in, care for your parents and earn a living wage
doing so? Are there other families attached to the elders at the day care who
could pool resources and live together with the help of live-in caregivers? In
my experience, one experienced caregiver could provide care for 3-4 Alzheimer's
patients, but not more than that. When I hear numbers like one caregiver for
eight patients, I laugh out loud at the ludicrousness of the proposition. It is
impossible. Unthinkable.
I am no expert, but I have a hunch we will find no "official" help that will be
acceptable to us. I think quality care will only be found by organizing
dedicated family members, friends and hired caregivers to help and pooling
resources with others in the same boat. By combining other families, and
setting up systems of care, sharing the load, there may be some truth to the
strength to handle this disease being found in our numbers.
The question is, who would do the organizing? Who would put the systems in
place? Who would start the process? Who would see that it works?
Then I have this question. If one family/group can make it work, can it be
duplicated? Can it be offered as a guide to other families? Can we start
putting together success stories, where families pull together instead of apart
because they've found a way that can work?
And then, is this idea impossible or are we just led to believe that it's
impossible? You are a system's person. Does it seem that impossible to
you? I believe we are built/designed to love and care for our parents. I
believe it is a natural part of our innate structure to care for the very young
and the very old. I believe it is very doable, but we haven't figured
it out quite right in this day and age. But I think we can. Especially
with the technology available to us. Web cams, instant messaging, the power of
blogging to connect one person in sunny Florida with another person in frigid
Colorado with another clear across the world in New Zealand. If we can do
that surely we can keep our parents safe and sound, even in their
addled, demented final years.
And then my last question, why can't it work? Why can't we make it
work? Why can't this be done? Not by government, not by social services, not by
countries, but by children who happen to love their parents? You know how
many families are going through this?
Nursing homes have made a fortune off of our stupidity and lack of
organization. We can change that. We can ignore them and build a better way to
care for family members when they're old. If we don't do this, who
will? Who should do this, if not us?
Just some thoughts, based on my own constant "what if"-ing.
Patty - stepping down off her shaky, wobbly, soapbox...
My answer to all of these questions is that I know families
could look
after the elderly, infirm and demented - it is just that we have organised our
society, and our comcomitant lifelong goals, desires and plans, around an image
of life that doesn't have these problems. When they do arise, quite naturally,
generation after generation, we go into shock and surprise and mouth the words,
'This wasn't meant to happen to me! I've been pretending all my life that this
wasn't going to happen!'
I get the impression that for close family to take the full burden of care for
the demented would require such tectonic shifts in society that it would be of
a scale with our coming, tortured, decades-long, attempts to kick the oil
habit.
I wrote back to Patty:
I think you are right that the community, with a little bit of
reorganisation, could probably provide superior care to its elderly. I envisage
a village of about 15 huts. Little children who are too young to work in the
fields play with their grandparents and great-grandparents, and come running to
their parents sometimes: 'Come quickly! Granddad's gone oft into the woods!'
Older children lead them back. If grandma wanders into the wrong house, someone
just shoos her out the door and points out the right one.
Instead, we've made our neighbourhoods so dangerous by mixing traffic with
housing, We lock kids away, either at home or in school, and none of us gets
introduced to dementia until we have to, so many of us grow up thinking of it
as something rather distasteful and shameful. We move away from home as adults,
and then add great distances to all the other problems.
When we were younger, my mother looked after her father as well as her own
children. It added to the work considerably, but if she had been paid what we
now contemplate paying a nursing home for similar services - she would have
thought she'd found heaven!