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.


  1. Hi Jayne,

    Your honest words and amazing strength give this outsider an understanding to what you are going through, yet at the same time I can't imagine how it feels to have all of these feelings coming up.
    As you continue this journey with David, one thing remains true: your love for each other and devotion. No one can take that away from you.

    Listening and supporting,

  2. Oh my, this is so sad. At the very least they need to be truthful when writing down reports. Can you call them on this? Can you rent your house in NB and move closer to him to visit and monitor him on a daily basis and check on what they are doing and writing? I always think there is some part of this kind of care institution that is self interested, although I know most caregivers have are honest and have a calling.
    It is so tragic to see what David and you are going through.
    Is there ANY alternative care, WITH music and people he could enjoy in
    more lucid moments and even walks outside and a wade in the pool in hot weather? I think you need to be closer for starters. I know this is probably not helpful. I wish I could think of something.
    You will always love him and you want him to have the best quality of life during this terrible disease. My heart goes out to you both. Maybe this time of inaction will be a space for a new way. Love, Pat T.

  3. Oh Jane. How difficult it all is.
    My heart goes out to you both and the family.

    Hang in there. And keep sharing - as a fellow writer/journaller I know how powerfully writing it reveals and discovers it, whatever 'it' may be.

    And asking the questions, repeatedly, will hint at which answers you find yourself defending or getting frustrated when people resist or cajole, and will contain the clues and the strength to carry on.

    I find it impossible not to fall back on platitudes, but they're real, too...

    I have an anecdote that I find myself often drawing strength from:

    Allegedly one of the Beatles (I forget which) said, in the immediate and precarious aftermath of a car accident: "What's going to happen?"

    Another replied: "Don't worry, something will happen."

    You will get through this, you and David, regardless of where 'through' may lead.

    Much love and tenderness
    Mark x

  4. I really enjoyed the Beatles quote from the comment above. That is exactly right. "Something will happen". Be it the result you want or what the hospital insists or even what others who think they know what is better for David than you want. The point I'm making is, now is the time to get information on what the choices can be. Enlist the help of friends in the medical community or people who have gone down this road, on a different journey. With my husband's cancer, he was 49, was never sick a day in his life, and was diagnosed with advanced colon cancer. I found out, with the help of others, who the best surgeon in the US was for the best outcome of a 49 year old man. We lived with no regrets, knowing we did the very best we could to get him the best of care. There is a lot of peace in that, Jayne. Ask for help. We are around.

  5. Dear Jayne,

    First I would be outraged at the false report. If I was there with you, I would chase that down, and find out why this was written in the report. But for you, that is not worth your time, and I know not a priority in your quest for what to do.

    Your pain and frustration as well is your love is so beautifully expressed here. My dad spent the last month of his life in the hospital with Alzheimer’s and an infection he got in the hospital. Finally a few days before he died, they told us he was dying. Apparently they had known this for some time, but did not tell us. He went to a care home on hospice and we all wished we would have known this earlier, because he was miserable in the hospital.

    All I can say is go with your heart, if you can hear what it is telling you. I felt my dad was dying much earlier than they said it, but I thought the doctors knew better. I do have regrets of not listening to that inner voice. The best I can do is not make the same mistakes with my husband, who also has Alzheimer's, and pass this information on.

    I will be praying for you.


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