Tuesday, November 9, 2010

Just another rant

Today the Alzheimer's association sent messages out to pay tribute to caregivers.

For me, being a wife, I prefer the term care partner as I believe David and I to be a team.
We work through challenges, I slam doors, I cry and say many I'm sorry statements. As he looks into the mirror to see a life fading, so do I. I see two, his and mine.

Being a care partner has a dreadful side effect. I suppose it is similar to when a mother feels like she is a robot. Get up, make breakfast, get kid up, feed kid, dress kid, drag kid to school, clean, tidy, work, collect kid, feed kid, blah blah blah.
I hear there comes a time when mothers scream What about me?

Today in the hospital as yet another doctor tells me, let your husband speak. I sit there and watch David stammer and not make a word of sense. Finally the doctor looks at me, giving me permission to speak. Yes, see, I want to cry. I'm not just being an over bearing, controlling bitch. I'm being a care partner, that's CARE. Someone who does not want her husband stuttering and stammering while going red in his anguish of working out what he was just thinking.

I'm 44 and the only dates we now have are hospital visits and nobody has ever asked me - what's it like? I have become the robot nurse. Who apparently has no life, no worries, no desire to have children of her own or to travel or to laugh or to make love. No, that side of my personality obviously and conveniently died five years ago.

A friend of mine whose husband was going through cancer said, suddenly people would arrive with lasagna for her. She said I hate fucking lasagna! There must be a guide book as to what to do and I imagine it is only one page stating look sympathetic, bring pasta and tell them how a long lost cousin once had a splinter so you know exactly how they feel.
(I received one lasagna and loved it by the way!)

I am told, it will be easier when David goes into a home. Well thank you very much. That's exciting isn't it! Please remember you are talking about a woman who fell madly in love and remains in love. The prospect of more hospital visits is overwhelming and I truly look forward to sending you all a postcard.

This is just another rant. Nobody will post a thank you message to me, because, well Jayne is different. Its just different for her.
Think for a moment - if there is a carerobot in your eye sight, just occasionally say - hey want to get drunk?

Monday, November 8, 2010

Weather Forecast

I am re-writing the myth - Love is NOT all you need.

It is the strong powerful ones who deal with everything successfully and it has nothing to do
with loving. It has to do with survival. Tactics to win. To beat others. Even when the powerful ones are wrong they are right, because they know they are wrong and can get away with it by being louder.

I have not lost much in my life, simply I guess because I have never had anything in the first place!
I have however been free to say the word love. To show when I'm happy. To share when I could. To share when I couldn't. I always thought that was the best way to be. I was wrong.

This is a lecture to all that are younger. If you are single, remain single.
If you are partnered with someone with an addiction - leave them.
If you believe you know what love is, then take a day off from it and then look at it again.

If your partner becomes ill, then distance yourself. Everyone else does. They may say, Oh I'm there. Have a look though - are they? If you are there all the time how does it allow them to give support? They won't even remember or recognize that the person is ill. They will sweep everything under the carpet, including you.

Alzheimer's becomes a battle for the afflicted and a battle for the care partner.
All the care partner wants to do is love. They are the ones who can hear the clock ticking. Doing that and receiving nothing back, continually, begins to feel like cutting your arm off with a hair brush.

Perhaps instead of the constant reassurance that I thought was required, my husband needs someone just to be the aggressive one. To not care so much. To not be there so much.
I now hear - Don't be so sensitive. Be a grown up. Its so easy when you look down from a comfortable chair to read the pamphlet and think you know everything.

So the weather has turned bitter. The winter is here. Protective layers are advised. Love does nothing to keep the cold turning into frost bite.

Sunday, November 7, 2010

Mid LIfe Part Two

There is absolutely no easy way of handling a partner with Alzheimer's.
There are no benefits. I have not turned into Maria Schneider.
I have not become a spiritual wise woman with blond hair who wears purple and brews chamolmile tea. I have become a spitting woman who eats Cheetos in her car outside Best Buy, just to hide for a moment to see real life. I walk toward CVS mumbling "shoot me, just shoot me."

Today was a classic episode into the oddity of this illness. I bump back and forth between knowing and feeling helpless. Its like being asked to perform with Cirque De Solei without a rehearsal nor safety net. Keep smiling they say while I imagine myself sticking a fork into my leg and simply exploding into nothing.

In Vegas I soaked in everything the place could offer. The sights, the sounds, the taste. I shopped, ate chocolate, rode the open top bus, and felt, let alone said, wow every five minutes. I loved it.

I went on a private tour of the Siegfried Secret Garden and met & cuddled a grandmother called Duchess who happened to be a real life dolphin. It was glorious.

If I could attach a photograph I would need to explain that I was the one on the right, as I was wearing grey that day. When I next meet a dolphin I will wear another color. I wonder if it had been a male dolphin that perhaps it may have jumped me? Headlines - Brit caught in love scandal with Whizzy the Vegas Dolphin.

The next day I lost my camera. I truly nearly cried. I love taking photographs and was already planning my Vegas Scrapbook. I am not one of those who watch the entire Pirate Show from their camera lens. I prefer more candid shots and artistic angles.

Vegas represented a huge reminder to me that laughter and wonder were easily found inside me. I wanted to keep the visual memories close. So I must, therefore, imagine that (as previously mentioned in Part One) George Clooney stole my camera. That helps me make sense of this bumbling life I now lead.

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...