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Monday, July 29, 2013

I'm Sorry

I am sorry if I have failed you in any way.

I am sorry I might not be able to keep this up. I had thought that when you reached this point of sleeping and being bedridden all day, it would be easier. In many ways it is, of course. You are too weak so I'm no longer having to chase you as you escape down the road. But it is quiet and lonely in the house with you tucked away needing so little. Some of your physical care is more onerous; transferring you to and from the wheelchair the few times you want to get up is more difficult with your extreme weakness and unsteadiness. But I do look forward to the new daily rituals of sponge baths and meals-on-a-tray, sometimes our only real interaction now. I spend much of each evening in the rocking chair at the bottom of your bed while you drift off to sleep. You need me there to calm you but I need to be nearby too, listening for steady breathing, not wanting to be completely alone.

I am sorry that decisions made about your medications might be better for me than for you. Your psychosis and anxiety were overwhelming both of us, rendering you paradoxically more mobile and alert in exaggerated fight-or-flight response. That is a bad combination with the weakness and instability you now suffer - your falls have become dangerous - so I have essentially strait-jacketed you with a reduction in the Parkinson's medications. That has been a relief on two counts: you are more clear-headed on fewer drugs and you are less mobile and unpredictable in your behaviour. The occasional need for anti-anxiety medication has made you sleepier. During the two weeks when you were so terribly ill and unable to take many of your pills even in crushed form, I felt the burden of this job most acutely. Every day I was having to make hasty decisions about your medications, usually alone and without support: If you can only swallow one pill, which one do I choose? I felt as though we were crossing a ravine on a tightrope and I had more than a few panic attacks. These are powerful drugs, not to be treated in a cavalier manner. But we do seem to have achieved a modicum of mental stability; the adjustments are working well, for now.

I am sorry for the times I might have been irritable and harsh, frustrated and even angry as I have traveled through a minefield of emotions. You always look back at me benignly and calmly. Your tone, when you can articulate anything at all, is courteous and gentle. It is only if you are in the midst of a psychotic melt-down that you might rise up with any strong emotion but I am never hurt by those infrequent outbursts. I know they are only you stuck in a waking nightmare where you have no control. I, on the other hand, have no such excuse.

I am sorry that I cannot always read your signals or understand your words which are usually inaudible or completely nonsensical. You have difficulty expressing anything now so I limit my questions to those that can be answered with a simple yes-no response. Even those are sometimes beyond your capability so I am left to guess, often incorrectly, when even your body language is shutting down. I am trying so very hard to tempt you with foods you might enjoy to help you regain the weight you lost on your two week near-starvation diet; you refuse most things except a few favourites. When I list the foods I think you might like, you often stare back at me blankly. When I repeat the list you then might blurt out a yes to a food on offer. I must remember you often take a while to process the information I am giving you. I must be quiet and slow and patient.

I am sorry that I am so well and you are so ill. Is this what is known as survivor's guilt? I have worked hard to remain fit and strong just so I can have the energy to manage your care with all the associated heavy lifting. Alas I feel badly that I only seem to get stronger through all of this as you become weaker. 

I am sorry if decisions to keep you at home have been wrong. In my heart it feels right but I would like to have been able to consult with you on all of this before it was too late. All you ever said on the subject when you could still form such thoughts was that you never wanted to be like this, so utterly dependent. You have been gone a long time now so I've been left to make all decisions on my own for many years. That has been both empowering and lonely.

I am sorry that when the end finally comes I will probably feel a crazy mix of grief and relief. I know I will feel lost without your constant presence. I have been caring for you intensively for nearly four years, but you have been home full-time and very ill for ten. It is hard to imagine being able to make decisions freely without consideration of anyone but myself. I am sorry that I even find myself thinking of a life beyond all of this and especially for the small thrill beneath the terror that I feel at the prospect.

*Saints Kings Church, Venustiano Carranza, Mexico: Stained glass windows Sun, Alpha Omega


  1. I had thought Michael's most recent rally had "taken". Am so sorry to hear that is not the case. Such a beautiful, poignant piece. There will always be regrets, because we are all only human and can only foresee the future through the glass darkly. But I know if Michael could, he would tell you you are everything to him and that most, and probably all, of your decisions have been for the best. Do not beat yourself up- you have done a beautiful job. God bless you both!

  2. Dearest "aidante naturelle" (as it is called in French)
    Please enter the river water and let it wash all your doubts away.
    I admire your capacity for making any decisions at all! That is why I can be of help at all. I was also thinking of the after...I'm sure I will not encounter an organized, physically strong and able, spiritual, intelligent, quick on her feet,care giver, mother, grand-mother,friend, volunteer and finally writer.
    Yes I cry, feeling your inner pain but oh what a gift that the very thing that helps you the most, writing, is also the one that helps others and will keep on living well "after", as the end of something will kiss the beginning of something else. Much love and respect.

  3. Dear Claire I think I have written a couple of times before in the comments box and tried several other times and it didnt post for some reason .... I have been reading your blog since I did some research on acute akinesia which my Step mother had after bowel cancer surgery... it was so scary knew what was happening & it was only the astute intensive care Consultant who knowing I was a nurse handed me an article on it and said I think this is what it is ... they restarted her meds and like a miracle she came back to us. Your blog has been wonderful .. educational and informative on so so many levels .. your honest open thoughts penned so beautifully ..THANK YOU !!! . I think you are amazing ...I support the sentiments written in the posts above ... you have done what you felt you needed to do with love and compassion and with such reality ... thank you for sharing this most personal journey and be kind to yourself ....You know that Michael has been lucky to have you ... his journey through this cruel disease would have been so different without you .... Your honestly is what resonates with me .... you are so real ... so real about your feelings ....again please please be kind to yourself ... I wish you strength and love in the difficult days ahead ...

    1. it cut off my name .... Virginia x

  4. You are strong and unselfish. You are allowed your feelings. Bless you.

  5. Thank you so much for putting words to what must be impossible to express. We love you both dearly. Thinking of you every day. Away at a funeral in Toronto and looking forward to seeing you asap.
    Big hug,

  6. Claire, I am so touched by your poignant post. Please know that if you need anyone to talk to in this difficult time, our free Helpline is available at 1-800-473-4636 or This is what we're here for.

    Stay strong and know that you're not alone.

    Sending positive thoughts your way,

    Cathy Whitlock
    National Parkinson Foundation