One More Step

     Today we began talking about Barby's departure.  She will have been here a full month by the time she heads home next week.  Her presence has been so much support on many levels--more than just helping with household tasks, she has been an encouraging and uplifting presence for both Bob and me.  She has been a great listening ear and sounding board, a strong support in facing hard choices.  I can't begin to express all that her being here has meant, nor ever thank her enough for making this "love journey," as one of her friends called it.
     As Barby leaves, we will most likely be entering another phase of this journey.  This past Tuesday, Bob's doctor referred him for hospice evaluation.  A nurse came today to begin that process and she feels he is eligible.  She still needs to meet with her supervisor and do some more paper work with us, so tonight the decision about eligibility is still pending.  
     "Hospice" is a heavy word, in a way.  It connotes ending, and sadness, dying and grief.  In many cases, it is clear that those connotations are imminent.   But for someone with Alzheimer's, that time is not as easy to predict.  Yes, it is a terminal illness with no cure.   Yes, there are "stages" one passes through more or less predictably.  But each person with Alzheimer's ultimately "writes their own story," as the neurologist in Marquette told us about 6 years ago.  And so, for example, there is a man in our support group whose wife has--as he sweetly puts it--"graduated from hospice 3 times."  She is now in hospice for the 4th time.
     So though we know Bob's journey is coming to an end, as all of our journeys must, we don't really have the more or less certain prognosis that might be available were he fighting cancer, for example. What we have is our lived experience that everything is getting harder at an increasingly rapid rate. And, of course, we have the expert observations of his doctor and the nurse evaluator.  And so we have taken this next step.  We take it, more or less as we all make any choices in life, trusting that we are doing the best we can.  In this case, we trust that we are doing what is best for Bob--preserving his ability to be at home with all of us, his family, who know his history and person better than he does now, and who love him with all our hearts.  We hope that this decision will also mean Bob can continue to enjoy family life and the antics of our grand children--even if only "from the sidelines" and as a spectator.   And so, at least for me, choosing "hospice" is reaching out to as many loving hearts and arms as we can to support us as we make our way through the ever-intensifying demands of living with Alzheimer's disease.  For now, thankfully, that is what we are doing:  living with Alzheimer's disease.