There are many wonderful things going on in my life…time with grandkids, new pursuits in art, friendship with my daughter, new friendships in my new area, starting a new garden, a great home in which to live…and more that I will chat about on another day.

Skip today’s post if you want chipper.

I have told you that The Bearded One is fading.  His dementia, although pretty stable, has increasingly been accompanied by other health issues causing him to be weak and unstable.  Daily life is increasingly challenging for him to accomplish without help.

Glad we took control and moved close to family and support when we did.

Now, this fading (they don’t call it the “long goodbye” for nothing) may take years and years or it may take months.  Don’t know yet and not sure if the doctors have a clue.  We will get more information in a couple of weeks.  But, I have been trying to prepare myself and eventually my daughters for the decisions to come.

I have found a wonderful resource in a book by Atul Gawande “Being Mortal”I read the whole book today.  The author in a surgeon who has experienced the end of life as a doctor with a patient, as a researcher, and as a family member.  He writes about control over the quality of life in the final days of ones life.  Of the difficulty individuals, families and doctors have in talking about the choices to be made in those final weeks and months of life….of making the choices that honor what is important to the one who has the least time to experience in the time left.

He talks about how our medical system and our elder care system has gotten to the sad state we find it in today and the glimmers of hope that it is changing.

I know that my parents experienced the good and the bad of that system.  My Dad was diagnosed with MS when he was in his late forties or early 50s.  While he was able to work for a few years after the diagnosis, he retired earlier than he would have liked.  He and Mom moved to Florida where they lived 20 years with Mom becoming more and more a caregiver.  A privately employed part time caregiver gave Mom respite and was a wonderful addition to their home for a few hours a day for a number of years.  His mobility problems became increasingly challenging until, when Mom also had health problems, the family intervened and moved them quickly closer to family up North.  Dad went into a nursing home and Mom lived nearby, visiting him twice a day most days.  Dad visited her home on Sundays for the day and returned to the nursing home on Sunday nights.  He rarely complained.  He became a confidant and advisor to many of the nursing home staff as he was to his own daughters and sons-in-laws.  His family was around him in his final hours, touching him, talking to him, crying and laughing while telling stories.

Shortly after Dad’s death, my Mom was diagnosed with Multiple Myeloma and underwent treatment for several years.  There were ups and downs.  She treasured her time sitting on her deck with any of her daughters or grandkids.  She loved cooking for family or visiting them for a few days.  She loved her yard and gardens.  Once after a long stay in the hospital, I remember her exclaiming about how beautiful the dandelions were as we drove home.  This from a woman who would go to extraordinary lengths to keep those pesky weeds out of her manicured lawn!  I was with her through doctors appointments, chemo treatments and repeated blood transfusions.  Family spent time with her as much as humanly possible.  Then it became  too much to support her in her home, even with health aides part time.  The Bearded One was even then (more than 7 years ago) becoming confused and forgetful.  I felt torn, not wanting to displace either of them.  Ultimately, we turned our living room into a bedroom for her and she moved to be with us.  As her condition worsened, one night she fell in the middle of the night and was disoriented, calling out for her Mommy.  My husband and I barely got her into bed and the squad was called.

Hospitalization resulted in nursing home care.  She had been in the nursing home for rehab before and always rallied.  This time she did not.  I brought her home for a visit to her house once and she refused to leave.  She would not return to that “hell hole”.  I left her alone to walk around the yard while calling my sister to get advice.  When I returned to the house she consented to return to the nursing home.  A couple of weeks later, I was advised to get hospice care.  I arranged for it to take place in the nursing home.  She died a few days later after a visit from my older sister, with my younger sister and I in the room with her.

If I had only had a crystal ball.  I regret that I did not arrange for hospice care for her at her home.  I regret that I encouraged her to have a painful spinal tape during the final stages of her illness because the doctor recommended it.

I will take the advice of doctors as advice and not as edicts from the all-knowing this time.  I will not quickly or easily hospitalize him and start him down the road of uncontrolled medical intervention.  I will think about what The Bearded One wants as part of his life…gardening (even if it is just watching out the window), time with family, good food, watching tv, smoking and vodka.  Elimination of the latter might prolong his days but not after more than 50 years, would not add to the quality of his days.   He does not want unwarranted tests and doctors’ visits.  He finds multiple medications pesky but tolerable.

We are inching forward into this stage of our time together but I think I have a clearer vision of what is important than when I helped Mom.  I did the best I could at the time.  Perhaps if there were more assistance with end-of-life decisions, I could have done better.  I will do better.

This book gives you an well written avenue for an important discussion.