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 (93% 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.
Sincerely
Claire Verney
Sad Caregiver
* The Wounded Man, Gersdorff, 1528.
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