Saturday, April 21, 2012


You have no idea the things I've seen, and done, and will yet do before this chapter comes to an end. Many of the things caregivers do can't be talked about in polite society. We would be shunned. No joke. Perhaps that's why the story I'm about to tell shook me a little, shamed me even.

Two days ago, a colleague offered that he admired me. "Ha!" I thought. Holding my bowed head I replied, "Don't admire me nuh. You have no idea how un-pretty some of this is."

He responded, "But that's just the point. I know it's not all pretty. But still you come out here, you're pleasant, you're not mad at the world, you're not bitter. I don't care what you say,  I'm saying that I admire that you can do it." He has some expertise in this area himself, having watched his mother care for his grandmother and later, having run the dementia gauntlet with her. He more than most, gets what this is (and what this is not) and has an all too keen understanding of what this can do to you.

I laughed and said, "I've tried all those things! They don't work!" That was then. This is now.

In this very moment, when my mother has just given me that "What you talkin' 'bout Willis" look; in this moment when my mother is up and down the stairs (probably 7 times in the last 40 minutes); in THIS moment, there is nothing to be admired in the way I feel.

How do I feel? E-M-P-T-Y, like there's nothing more in there, not even fumes. The tank is dry. Dry as the Sahara dry. Dry like my skin on a really cold day....TMI? OK, sorry. But DRY. It is only the Grace of the Divine and Living God that keeps me putting one foot in front of the other....that and the hope that any day now that one of these will appear.

Sunday, April 15, 2012

Stop, breathe and think again

The trouble with illness, whether a parent's or one's own, is that it brings with it all manner of crazy emotional stuff that must also be dealt with. Unfortunately, there are no time outs, no brief reprieves during which we catch our breath, clear our heads, or find a little peace and quiet before we make the decisions that must be made and do what must be done. That being the case, let me just say this: Never make a financial decision relating to illness or care, while overwrought. If ever there were a time to NOT make a financial decision or commitment, it would be when you're overwrought. This is why I write about this incessantly. If you've had the important conversation with your family before a situation arises, when the situation does arise, the plan simply falls into place.

I won't go in to the whole sordid story, but suffice to say, I'm standing on the sidelines right now, watching someone talking himself into spending that which he has not, to do that which could be done much more simply, and without the long term debt consequence. Rather than stick with what can be relatively easily managed financially,  the intent seems to be "I gotta go big or go home" well, come on now! This is not Vegas!

When we spend money to prove our love for others, we are in deep, deep emotional waters. We need to step back; take a breath and think again. In much the same way that the duration of our grief is no indication of the depths of our love, neither is the quantum of cash spent any indication of love.  What it may be is an indication of is guilt or some other emotion, but that is a whole other story right there and psychology is not my sphere. Spending to reinforce, or create, some illusion isn't love and we should run from any suggestion that it is.

Spending what you don't have to show other people how you feel (or felt) about your loved one, is akin to flying first class just so people can see you boarding the plane first. The food may only be marginally better and you'll all (first class and economy) arrive at precisely the same time. Paying for a private room in hospital to prevent other people talking is equally fiscally irresponsible. If people are going to talk, LET THEM TALK. It's not like you can do anything to prevent them talking other than stapling their lips closed (and I'm pretty sure there's a law somewhere against that). Natterers will always find something about which to natter.

Do the best you can within your means and leave the natterers to their nattering. No one who loves (or loved) you, would ask any more than that and if they do, well that would probably fall under the heading of 'emotional blackmail' and that too, is a story for another day.

Tuesday, April 10, 2012

'Can't' is not an option

Some weeks ago, I posted in Taking my own advice, that I'd be doing just that: taking my own advice and starting a business. Well, I've gone and done it now. The paperwork is ready to be filed and I'm doing my 'research'. As a matter of fact, without really meaning to, I'm doing one thing every day towards my goal. I seem to be gearing up for something. And I'm enjoying it (which is a major surprise)!

I thought I'd be scared out of my mind, but instead of fear I mostly have a couple of things floating around in my head. First, I think of Steve Jobs telling his audience at Stanford in 2005 that there is nothing so liberating as the certainty of your death. While that's not a particularly cheery thought, there is definitely something to that.

In my present context, there is nothing so liberating to me as the recognition of the possibility of my own trip down Alzheimer's Lane. Having seen what Mummy's not-meager-but-also-not-extensive resources have managed (and recognizing fully that in the absence of a huge job, my ar$e is probably already up a gum tree), I have to liberate myself to do something, build something that works within the confines of the universe I inhabit and yet has some money making power.  Any business I create has to allow me to work from home, and the work must fill me up in the very ways and places that caregiving empties.

The second thing that seems to have liberated me is the joy I've accidentally found in this 'work'. In his commencement speech, Jobs says that we must find what we love. Well, I love baking. Perhaps when I'm doing it for coin it will cease to be enjoyable, but I doubt that. So I'm trying to figure out all the angles; I'm fine tuning my plan and talking to folks who know something about this kind of business. We shall see what comes of it all. Just now, making these first steps makes me feel more in control of my crazy out-of-control world. That alone is a great benefit. The money will be the second!
Can you tell I'm all about the baked goods?

In the face of death (or Alzheimer's Disease in my case), what is the fear of failure? Please! My mother has no earthly idea who we are - the other day she referred to us as "the people here" - what the hell have I to fear? That could be my future. I hope it isn't, but hope ain't a strategy and I am the kind of girl who has to have a strategy. As afraid as I may be of an AD future, I'm more afraid of leaving a mess for my sister (or my poor beloved niece) to clean up than I am of falling on my face.

There are naysayers, but what business person doesn't have naysayers? So to the naysayers, I say, say your nay. I'll keep on baking and thinking and planning. Unless you're planning on coming over here and doing the needful while I go out and work for 3 pennies, I will say in the words of Nikki Haley, Gov. of South Carolina, "'Can't' is not an option."

Friday, April 6, 2012

More & Less

More and more I'm having less and less capacity to deal with my mother's rigidity. When she gets it in her head that she ain't doing something the only thing I get out of pushing is a headache or high blood pressure. Neither of these is a particularly good outcome.

Time soon come we'll be needing assistance every day. It's Good Friday, I'm trying to get her dressed, fed and to the hairdresser so that she doesn't have to show up at church on Easter Sunday morning lookin' tore up from the floor up and what do I get? Stress. Now I'm scrambling to find a caregiver so that I don't have to blow a gasket trying to get her out of her pajamas.

Let me start investigating where she can go because this will make me lose my mind up in here, up in here.