Fading from Memory

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!

Do we leave mum and dad at home or move them into care?

It is clearly an understatement to say that this is a difficult decision, as most families wrangle with the issue for months, perhaps years, and often continue with self-recrimination and doubts for some time after the decision has been made. Like a lot of life's big decisions - should I move overseas, should I get married, or divorced, should we have children - it has long-term consequences and can be irreversible. However, the scale of the consequences is not what makes this a difficult decision, it is the lack of clarity that does that.

Just to make sure I have made this distinction clearly, here is a contrasting example, a decision that has serious lifelong consequences, yet is clear and easy to make:

I am driving with the whole family in the car. Do I concentrate on driving, or forget about it and just join in the conversation?

Obvious answer, but only because the consequences are so clear, not because the costs of making the wrong decision are trivial - they are clearly not.

We can at least put some bounds around the current problem by noting that:

1. Mum and dad will steadily get worse, never better.
2. At some stage, 24-hour care and observation will be essential.

Only death will avoid this. None of us has any delusions about that.

The problem is that, while there is still a decision to be made, there are no other certainties. Only two alternatives (each with a number of variants) yet both are essentially unknowns. It is almost like playing 'pick a box'.

We must also define our goals and decide which of them takes priority over the other. Again, this is not so easy. In the driving example above it simply went without saying that avoiding a car crash is a more important goal than having an enjoyable conversation. Yet, if this were not so, just for the sake of argument, the answer to the question might be different.

What are the alternatives?
Staying at home versus going into care.

What are we trying to establish?
When to make the move.

What are the goals?

1. to keep mum and dad happy
2. to keep the rest of us happy
3. to keep mum and dad alert
4. to keep mum and dad alive

What information do we need?
The pros and cons of the two alternatives, under varying circumstances

Actually, now that I think about it, this is just another candidate for three-step structured problem solving:

1. gather and analyse the information
2. decide what to do
3. implement the decision

Sounds simple enough, but it is surprising how often people reverse or scramble this sequence. It is clear that part of step 1 is compiling the pros and cons of our two alternatives, and how these will shift one way or the other as circumstances (such as health or competence) change - for which I feel I am fast running out of time and space today.

I think I shall stop here now, just to give myself a few hours to accept that these really are the goals in order of priority, and to give the others time to chip in with their contributions too. I'll continue tomorrow...