Tuesday, October 4, 2016


This is the end of  FTD Awareness Week, and as I read more about what other folks are going through, and reflect a bit on our journey, I am pretty grateful for all the wonderful help we get, and all the friends and family who have "been there" for us. It is weird to write this at the same time that I am getting to know the hospice helpers and volunteers who have arrived on the scene - but really, we are lucky!

I read a staggering thing last week. The annual average cost for a family taking care of someone with FTD is about $130,000 per year. That is about double what the annual cost of caring for an Alzheimer's patient is.   What accounts for the difference?

Allow me to illustrate with an example. At an FTD support group I attended, one of the other wives was telling stories about her husband "breaking" things - like, sawing off the steering column of the family car, and disconnecting the gas dryer in the basement because he needed to "fix" it (and yes, the house was evacuated as a result).

Other families get sued - because their loved ones behave so inappropriately that they need legal defense. And sometimes, people with FTD who get put into residential care get bounced out and relocated (repeatedly) because their behaviors are so difficult to handle.These are expensive problems to deal with - and this is over and above all the other healthcare costs and other day-to-day expenses.

Nancy Carlson, the children's book author (http://nancycarlson.com/)  speaks very eloquently about how her husband's failing judgement bankrupted their family.  Her painful journey was not helped by everyone's inability to see what was happening to him, and by the time they figured it out, he had brought financial ruin to the household.

As I said, we are lucky by comparison.

So far, Alex is more in the petty misdemeanor column.  He does try to shoplift from candy counters, so I watch him closely when we go out, and  I let him sneak stuff into the grocery cart because it's better than having him stuff things into his pockets and easier than battling with him in the aisle of a supermarket where we are certainly a very bad example for small children.

And I can see how easily Alex could really hurt someone - without ever having the slightest intention of doing so, or even any idea that he had done something wrong. He is still very strong, and completely lacking in restraint. I  discourage handshaking for this reason, and carry things (like chewing gum) to divert his attention when he simply refuses to let go of his latest victim's hand.

He is a Marxist now. There is no private property in Alex's view of the world,  and most of the time, we just deal with it. But when a person pours his orange juice into your half-drunk glass of beer - well, that's a line that no one should ever cross. Did I lose my composure? You betcha!

He also doesn't seem to understand personal space any more. Awkward...

I see things in Alex that others don't. I wonder sometimes if I am deluding myself. It can be very hard to see past the symptoms to the person underneath, but one thing that I think remains with Alex is a love of making mischief.

For example, our nephew Jesse cam to visit for a day. Alex had not seen him for a while, and Jesse now shaves his head. In the old days, I am pretty sure Alex would have teased him about being bald as an egg - like Uncle Harry.  Instead he drew the following picture of Jesse on the family whiteboard:

And a couple of weeks ago, we went the symphony, where Alex drew this amazing likeness of the soloist, Joshua Bell, who I assure you, DOES look like a bird!

I don't know where the cigar came from....but still...

And on the way to dinner with his brother, Andy,  the other night, we started singing WHEN I'M 65, and Alex sang, "when I get older, losing my mind.." He was absolutely making a joke, and since FTD literature will tell you that the sense of humor is one of the first things to go, it makes me think that wittiness that appealed to me all those years ago is going to be one of the very last things to leave him completely.

So when you see a strange older guy with a very peculiar expression poking people with a miniature American flag, we still see part of Alex. Not very appropriate at a solemn occasion, but not completely out of character, either.

Tomorrow is Alex's birthday. Last week he told me he was 38, and today he said he will be 42. Each time, I pointed out to him that our son is 30 - but that didn't bother him in the least. Consistency is a pretty artificial concept, actually, and it's good to be reminded of that sometimes.   

So, at the brink of what I expect will be his last birthday (or at least, the last one that will resemble a birthday in any way for him) I am just not sure how many candles to put on the cake. Pretty liberating, I think.

And once again, I am lucky, because if he's 42 then I just turned 30.

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