Friday, April 6, 2012

Care for a Care Giver

It was me who proposed that April was: Apply Prize Reflections In Life.

So I am going to be truly honest with you and share that yesterday I was not a good care partner.
There is an image of Alzheimer's that highlights the forgetfulness, the tender, yet empty eyes and the end of the movie "The Notebook" where you realize James Garner is talking about Gena Rowlands, his wife who does not remember him.

Yesterday was a typical day. We woke to David being very concerned over what to wear as hundreds of people were coming to our house to hear me speak. Not true by the way.
I had piles of work to get through and during most of it, David stood by my side puffing loudly as though he had a trumpet. By this time he was scared about me going to New York. Which I'm not.
I knew that I needed to get some bills into the post and I know that leaving them in the mail box is not a good idea in our house. I just took a risk because I had no time. Sadly on the fourth time of  David bringing them back in and me putting them back out, David suddenly grabbed them and ran off down the street. I was at the time only wearing a towel, yes it was 3pm, and that was the earliest time I managed to get a shower. That's a good day. Having a shower is not possible on a daily basis.
When he returned ten minutes later the mail had been lost and naturally forgotten.
$3,000 worth of bills.
Truly it's nothing. At the time when you are Humpty Dumpty perched on the wall - it is everything.
I flipped. I lost my smile. The anger could not rush out of me any faster. I was the exorcist girl again.

This is living with Alzheimer's. I am not bold enough to share how the day ended. For the first time ever, I hated David. I have never felt that for him, only love. I hated my life. Hated my ugliness and the boredom of the stress. The illness pushes you to this, beyond this. I am sick of it, and sick from it.

As Care partners, care givers - we know the bigger picture things and the ideal solutions. What we sometimes need is a punching bag and to accept that we are going through a grieving process. I am losing my husband and I resent most things that take away from the focus of loving.

Alzheimer's (any illness) grabs hold of the care giver and changes them. Please, please try not to let that happen.
Our friend Jen came flying (literally, I believe she and the little blue truck can do that). Reminding me to be me and caring for David while I found time to breathe. If you are a friend - even sharing dinner helps, as there is no such thing as a relaxing fun dinner out. The help does not have to be the ultimate answer and solution to everything. "Hey, while you're there, try and come up with the cure." It's not possible!
Just an hour, a pint of milk, whatever, it helps.
I am trying to learn from my weakness and "The Demon Drama of Beat Street." I hope that my sharing may inspire another who feels scared of their own anger.
We need support and smiles. The occasional reminders that we do not have to wear the blue hospital socks every day.

Tuesday, April 3, 2012

Opera Moment

Just two days into my April of not focusing on Alzheimer's, I found myself miserable and feeling at a loss.
It is the total opposite of what I wanted and imagined I would feel and discover.
Then BING plus a big Oprah AHA. It hit me.
True confession time - I actually use my husbands illness as an excuse not to do anything.
Shame blushes through me. It's not that I was intending to do that. I quickly add here; for those who do not know me, that I work full time from home while being a care partner, so it's not that I sit on the couch eating chocolate. Insert funny picture of me yesterday doing just that!
Notice how I defend myself quickly.

I know some people who I call opera singers, because it's all about "me me me me meeeee!"
Could I also be an opera buff?
My good intentions are toward David, work, family and friends. The weak tired personalty puts on the opera voice and appears daily in "Madame Moodyfly" or "The Marriage of Victimo".
There is no time for me to be inspired to write because I am a care partner.
There I typed it. Said it out loud. Nearly deleting it, I am shocked to be using that excuse. Telling myself that story and believing it.
Have a think - are you starring in your own opera of no purpose?

Sunday, April 1, 2012

Alzheimers - Forget about it!

I always love the first day of a brand new month. We have twelve opportunities to start afresh throughout the year and I celebrate them all.
Strictly speaking there are no rules concerning when you start anything new, only the limitations we apply to ourselves.
Being the Queen of my own land, I have ruled that, henceforth, April becomes "Forget about Alzheimer's" month. Please shout with me using an Italian mobster voice while waving your arms - "Alzheimer's - Forget About it!".

I am not raising money for it, I'm not reading about it and I'm not discovering anything new about it. I refuse.
I'm living with it and it's not like I imagine it will eventually go away.
Here's the thing, I have a car. I love my car. I need my car and use it. I don't sit secretly at night and read about it. I don't worry myself to tears that I don't clean it enough or that one day it will not be around any more. I don't sit at my window starring at it in case something should happen. I love it, appreciate it and I actually do thank it following long trips. I live with it.

Yes, my husband has an illness that offers many tiring challenges and a fog of sadness. Yes, I am pretty worn out and need a breather. Yes, I truly wish 'Speaking Alzheimer's' was not the well read book sitting by my bed instead of 'The Kama Sutra!'

This month I'm going to ignore Alzheimer's and will let you know how it goes, day by day.
That of course does not mean with holding medication or not following all the tricks I have found. I'm not being stupid. I just want a change of focus. We're still alive - even if one of us eats her anger away and the other one sleeps with his shoes on. Max The Cat knows to limit the 'all you can eat buffet of open food cans' and I'm less perplexed about the really weird stains that make our home unique.

If you have your own version of Alzheimer's - an illness, a problem, a concern, a habit you wish to lose - try and forget about it this month. Apply Prize Reflections In Life. Change your glasses and study something else.
It's an experiment, let me know what happens.

For my Universe

I have had so many thoughts recently for blog posts that could be inspiring for those around me, and yet I can never quite find the words. M...