Saturday, June 23, 2012

Short thank you

I am thanking my friends for the wonderful comments I received on my last blog.
They were full of the best advice, support and connection I have ever felt. Thank you.

It led me to understand that the quiet wisdom is the strongest. It is not always the professionals with clipboards. It is the not the loudest person in the room whose ego attends, rather than their soul. It comes from those who care enough to listen and are brave enough to share, thoughtfully, remembering who they are speaking with. In this world there is talk and then there is conversation. Huge difference.

The greatest gift you can give to yourself and others is to know yourself and take the extra mile in order to remain true.

For those that choose to ignore anyone who is sick because of their illness are only highlighting their lack of desire to stretch further than their own belts. I'm proud that I am not that type of person.

Off now for a date with my David, including strawberries, M&Ms and The New Yorker. These too are treasured times and I am not wasting a second. David himself taught me that when I first met him and, dear friends, your thoughts and emails reminded me of that. 

Thursday, June 21, 2012

Im at a loss

I sit here at an absolute loss as to what to do. I've never had that in my life before. Somehow I've always known what to do or something happens that leads me to the next decision.
I've been called a control freak. I've been a professional event planner and theater director. I've always been the guide.

Right now though - and during one of the most important times of my life, I remain at a loss.

Today I was just about to visit David and the hospital phoned to say he now has an infection and it has caused some turbulent side effects. It is prudent not to visit today.
Every single thing I witness him going through is far worse than anything I saw with the Alzheimer's.
I was asked also to check something that had been written down about David, that during my last visit he ran down the corridor, lunging at me and wrapped his hands around my throat. Was this true? Well, its amazing that he ran down the corridor when they are telling me that he can't walk. Yet that's what the report says.
It's absolutely NOT true. I wonder if they have The Enquirer writing their reports?

I am hating this entire episode and can not imagine what Davids' Alzheimer's is doing to the working part of his brain that he has left.
The part that knows me when I visit. That still smiles, loves M&Ms, recognizes music, asks me what is going on and tells me that I need to get a life as he knows how terribly sick he is.
So now on top of yet another drug change, we add antibiotics. I look the various names up in my drug bible and see every possible side effect. It's funny how they refrain from listing the desired outcome.

I'm confused, angry, sad.

I'm told to look for a locked nursing home and remember I'm only young and as my own David said himself, I need to get a life. I emigrated to be with David to get a life. Loving him has been a key to my life. That doesn't stop because he has Alzheimer's. I don't believe it stops when a loved one dies actually. My caring for David is part of my life. The part I resent is now; this wasted time where he has been put there and in my eyes had his quality of life, possibly the remainder of his life, snatched away from him.

What if those people who lecture on healing and how to live a fulfilled life are correct? That the greatest thing in life is to love and to give. If I were Oprah and brought David back to my home, I would be applauded and helped. Because I'm not Oprah, I'm told to move on.
What if my heart and my strength equals a purpose to make people aware that this treatment is close to barbaric? Would it help if I shouted louder? Would it help if I had money?  How are we to trust hospitals and not ourselves with David's care?

I am not denying the rapid progress of the illness and yes last month with David at home I got extremely tired and scared. Guess what? I'm still tired and scared! Guess what though? We enjoyed our quiet times. We walked. We sat in the garden. He made fruit salad with Jen. I could make him laugh, a lot. He thanked me. Loved me. He would dance to music. He still disliked Americas Next Top Model and still adored West Wing. Yes I'm a cliche when I say; if I knew then what I know now, I would never have shared my feelings. Never.

Tuesday, June 19, 2012

Alzheimers and Hospitals

Today in the local newspaper an article was featured regarding Alzheimer's patients not doing well while in a hospital.
My husband has been in a hospital since May 29th and every day I struggle with wondering whether he should be there or not. If a new treatment that he is undergoing works as effectively as we hope, then I will be saying that it has been a nightmare with a fantastic ending.
My problem is that I can't tell what is the Alzheimer's and what is the effect of the various medications.
David has always been sensitive to any medicine. Where I may need an elephant gun to get me down, a feather dart thrown by a baby would do it for David.
So now we have him not being able to walk, sleeping mostly and occasionally enduring weird episodes that have put him in a state of delirium. I'm told he was like this before he came to hospital, which is really frustrating seeing as I was the one living with him and I know he was not like this!

Here's the thing too, we as healthy people can understand and see three nurses who are taking us to a bathroom. He can't. All he is aware of is noise and hands. Its scary and the staff do not have the time to speak calmly and slowly. So he panics, which in their eyes is being agitated and hence he receives more medicine to calm him down.

At one point today a nurse who was built like Mr and Mrs.Doubtfire on steroids pushed him down onto the bed when he didn't understand the word "sit down." Her shadow had already pushed me down. Yet earlier, David was sitting down with confidence as I guided him after we walked for a little bit.

I have been written up in their bad book for reasons that are easily found under the words love and care.
This is my husband, not a patient, so I am allowed to be with him and have more focus on only him. I did not forget "in sickness and in health."

With Alzheimer's on the increase and being discovered at ages under fifty, we have to explore different ways of treating patients. I have been warned recently of a vicious cycle for David; where he is taken to live at a nursing home where he will inevitably panic and they will send him back to hospital where he is over medicated and the whole cycle begins again. We are not prepared with current resources to take care of younger patients. They are stronger, more energetic, decline at a quicker rate and do not like listening to Danny Boy or playing bingo. Their awareness of their pain and lack of dignity is higher and their anxiety and fight against the disease is far greater than hospitals are ready for. Adding a pile of psychotic drugs to an already damaged brain until the person is like a zombie is not finding the best quality of life.

I leave the hospital every day with a huge question mark on my shoulders. I imagine one day a mascara will say on its label "not tested on Alzheimer's patients."

Let alone a cure - we need to find a treatment. We need to find it fast.

For my Universe

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