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Tuesday, September 4, 2012

A Broken Heart

Dear Dr. Neurologist

Though I would prefer to engage in an actual conversation with you about Michael’s condition, I thought presenting my concerns on paper might be a more efficient use of our fifteen minute visit. It also shields him from having to hear difficult information about his condition that would only cause anxiety. 

Michael’s condition has changed and I have some serious concerns. Dr. G.P. examined him last Friday and discovered that Michael’s oxygen levels are low when seated, lower when lying down. This suggests heart failure, which might explain the purple lips I’ve noticed occasionally over the past couple of months and the lower heart rate (at times as low as 45 beats per minute).

This past week Michael has had many moments of delirium and confusion, more than usual. Last Tuesday he passed out during a coughing fit in the middle of dinner. Since then his mental state has been much worse, though today he seems back to what is normal for him. All of this is also in the wake of my first night off in several years, leaving him at home in the care of our caregiver two weeks ago.  He did not respond well to my absence and needed to be medicated with Ativan for several days before and after.

Dr. G.P. would like to pursue the possible cardiac problem.  I have said that any invasive technique like an angiogram is out of the question given Michael’s extreme sensitivity to hospitals. I think it could even be dangerous. A simple x-ray or ultrasound might be tolerable for him but only if the procedures can be carried out quickly and without a prolonged wait time beforehand. Going out to any appointments is very difficult now.

I am guessing this apparent heart condition might be a complication of the Parkinson’s disease. Though Michael’s blood pressure on the Domperidone has improved, there are still huge daily fluctuations: his 10 a.m. reading might be 100/50 and his evening reading 183/95. There is, however, no consistency to the readings, no apparent trigger for the highs or lows. He has extreme shortness of breath with exertion, accompanied by the blueness of the lips and low pulse rate. He is sleeping much more.

My goal in caring for Michael has been to keep him as comfortable and happy as possible, and avoid hospitalization to which he has an extreme, psychotic reaction. I feed him healthy, low fat, low salt, mostly plant-based foods; in short a heart-healthy diet though he often refuses certain foods now. His bowels are a constant concern but in general I am, through diet, managing to keep him fairly regular, resorting to medications only occasionally. 

We are now at the stage of focusing on the quality of his life, not the quantity. His dementia keeps him blissfully ignorant of the severity of his condition. I prefer to keep it that way, if possible, by not adding anything to his life that will send him into a psychotic meltdown. I want him to die at home whenever God sees fit to call for him.  I want all future treatment to be only with an eye to improving or maintaining that quality. I know it is what the old Michael, now long gone, would have wanted.

Claire Verney
Sad Caregiver

* The Wounded Man, Gersdorff, 1528.


  1. Claire;

    Miles separate us, but my prayer is that God would give you someone who would be there for you and Michael, someone more than words in a comment box. Thank you for baring your soul. It is consolation to those of us who can only watch from afar. I watched my father slip away from living like Michael is doing. But I know he has gone to a better place, as will Michael someday. In the meantime may the peace prevail as we remember that living is not a hopeless dead-end but the beginning of a better tomorrow.

  2. To Bob and Thom and everyone else who honours me by reading this story, "words in a comment box" mean a great deal, are a great comfort. I thank you.

  3. Claire, am so sorry for both you and Michael. Apologies for not having commented sooner. I haven't been checking my blog list carefully enough! I guess these were the fires you were putting out in your Facebook post. My thoughts and prayers go with you. -Bruce

  4. Claire I have just found you and my heart goes out to you and your Michael. Fortunately, he is not aware of the suffering you are going through because of his condition. My darling died 14 years ago (it seems like yesterday) but he was aware of what I was experiencing too.
    My thoughts are with you from the other side of the world. I wish there was more I could do.
    Because of some hiccup in the system

    1. The last line in my comment is superfluous. I was having trouble publishing my comment.

    2. Thank you, Judith, for your kind comments. It is, if nothing else, an interesting and soul-edifying journey we are on. I take things one day at a time.

  5. If you are the Capital letter and I am the apostrophe, Michael has to be the story. With compassion we go on until the story ends on this side and continues on the next.
    i hope I can support you in any way I can.
    your loving caregiver.