Friday, May 11, 2012

Jimmy Care Giver Shoes

What do you think when you hear the term care giver or care partner? What image dances before you? Or does it plod sadly in front of you wearing a martyr tea shirt with a blanket trailing from their pocket?
Have I become a saint in some peoples eyes? If it hadn't been done before; I would wear a tea towel on my head.
Here's the thing. I'm still Jayne. I'm still the wife. I still laugh and have dreams of wearing high heels or having the perfect hair and wearing lip gloss that stays in place.
All the emotions, energy and interest that attached itself to David, is still there.
Heres the thing though, it's all been been dragged through a lawn mower.
We don't actually realize ourselves how tired we become, because we forget its not just the physcality of getting up, carry this, clean this up, pick this up, do this now, whats wrong, whats good, was that door, is that the water running?
Its the emotional drain that really gets you because it wears an invisble cloak.
I see it in eyes. I hear it in peoples reaction to price of medication or wonderment over research versus treatment. Cure over cause over care. I caught it yesterday in myself.
Do you know how hard some of us cry and how we do that without wanting to be seen?
Do you know how hard we try to stay on top of everything, to make it look easy, because if it looks like regular living, then nothing is wrong?
Do you know how hard we want to deny, because it wrenches at the heart?

For me as an Alzheimers carer, my biggest hurt and sadness for David is when I see his fear. So of course I try to keep things gentle and soft, so that comfort is easily accesible when required. Sometimes I imagine I'm the commercial Snuggle bear in order to make my body smile and say its OK.
That takes effort, especially when David still tells me and others that Im hitting him. Or the time he told me the person Jayne was hitting him.
So I guess my point is. Providing care is not easy, and I have decided it is not the same as bringing up a child. Because for the occasional smile you receive, your heart knows that is one less you will receive.

For care givers, we need an understanding that we are doing what we can. If you have questions, please ask, or use the same resources that I am because I'm sorry I just don't have the capacity to try and prove that I'm doing all the right things. How do I know?  You have to be strong to navigate the medical system and it's all about understanding and at the end of the day gut reactions. If a medication that is meant to aid sleep makes David think he is Superman saving the world, then I'm not giving him that medication.
Sometimes a pill cannot take away what you don't want to see. Sometimes it's not a pill that is required.
You can read every book and every study there is, and the very best way to care, is to wear the other persons shoes. Well, I've been trying on the entire families shoes, like they've become DSW, in order to care for everyone while we stroll through the mine field.

I need a break. I'm not a dart board. And its not that I want to go away for weeks. Most people on respite, cant wait to get back you know. Sometimes just to pop to CVS where everybody knows my name is an energy shot. Don't make me work all this out to build the foundation for you. Don't come at me demanding this and demanding that, when to be honest lifting a finger means an extra effort for me. Don't blame me for doing everything, thank me for doing everything. Ever wondered why we try to do it all? Because we can't cure the person we love. We can't take the sickness away and it makes you feel a failure. No matter how well you do at care giving, your true desire is to cure. I can't be a punching bag when you need support, or be the warm up artist when you need it to be easy. It is what it is and its never going to be easy. It is however, all and everything that we have.

If anyone wonders, I wear a size seven, a nude pump, which means barefoot with grace.

Thursday, May 10, 2012

Life and love

Tonight I stay awake experiencing the same feelings that I had, when Kim Marshall threatened to kill me at playtime during the next school day. Teachers suggested to her that a detention may be in order. Kim's friends, enemies and previous black eye survivors told me to be prepared. I said nothing. I felt a lot. Sadly most of it was wondering why I deserved to be beaten up. What had I done wrong? My guess was that I was weak and I really did not know how I could change that to suit Kim Marshall. I was a nothing at school, why beat me up?
The next day we were both held in detention in separate rooms. I left school that day, running rather quickly with eyes like a crown completely around my head.
I know her desire to kill me faded because I'm still around.
There's an odd thing that I cannot work out about me. It's a feeling that whatever goes wrong, or not to my liking, is justified because I am wrong. I deserve it. That everyone else is right. I'm not sure I have ever felt that I belonged enough to know enough.
I fear my tomorrow morning is going to provide more than Kim's fists would have hurt, because we are dealing with personal issues where love and living is involved.
Now we can all preach about the need for a bully. Why they do it. I get that. Here's what I do not get. That Kim's punishment was the same as mine. That I'm the one awake right now, putting everything together in case I need the emergency exit switch. That I believe making decisions and choices through clear conversation and good intentions find the best solutions. That loving has more of an impact than not. Yet if all that were true, wouldn't I be snoring right now?
Yet, it's time I owned up.  I believe that love has no power whatsoever. It is just a feeling and nobody won a Noble Peace Prize because of a feeling.
It does not solve my brothers problems just because he knows how much I love him. It doesn't even ease him. It makes it worse actually.
Love doesn't get a look in when dealing with illness. I have said, love is all there is. I'm sorry everyone, I don't believe it. Nobody died easier hearing I love you. Dying is dying. Like waking up or falling asleep, it's a bodily function.
If all I'm doing is loving - why am I on the end of another bullies hate list? If love were so effective, wouldn't it have worked by now on one of the many stupid situations I have given love to? And again, I have to stress to you, this is not an invite to a pity party. I just don't think I do this thing of living in the right way.Its simple, if I don't shout louder tomorrow; then I lose and I'm not someone that shouts and makes sense. I do the garbled, teary shouting, where you run out of breath and forget what you were wanting to say.
Until of course you're in the car alone.
A legal document means more than a love letter, and I wish I had spent more time over those. Perhaps it is not my fault and we are just given these roles. They are already defined at birth or before. Some people are the bowling balls while others are the pins.
It is ironic that as a child I liked the song "Another Suitcase Another Hall." Coz I swear I'm at that point again. I knew I should have liked Sid Vicious.

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...