the bookends: peggy's personal story

I had two opposite experiences with my parents; bookend stories regarding their end of life planning. My Dad was never one to discuss much, ever. Very old school but a real softie. He sold the family business and was going to fill many retirement hours playing golf. That changed when he opened the car door into his “good” eye one day going out with a friend to lunch. He could not see well enough to hit the balls much less see where they landed. He could not complete his dream of what retirement was to be for him. In turn, he wasn’t as active, and slowly declined. Looking back there were signs but the lack of activity sped up the process of what we later determined was Lewy Body dementia. He lived his last 3 years in assisted living as we watched him diminish, the light dimming in his eyes, his soul, finally coming down with pneumonia. He died peacefully in his sleep, never talking to us about how he wanted to live the end of his days.

For Mom’s side of the book end, she didn’t want to leave anything unsaid. She wrote her obituary years before she needed it, had a list of people she wanted me to call upon her death and had her OOH DNR posted on the fridge and in her bathroom. All things one could possibly have planned, Mom planned. She was living completely independently though got run down one holiday period by doing way too much for other people, as always. It was about 7 years ago when she came down with pneumonia.  She was very tiny, a life-long smoker and had really lost the passion for life since Dad had died a little over 3 years prior. She was hospitalized, lost 21 pounds in 21 days, couldn’t eat and definitely did not want a feeding tube. She declined so much she could not recover and died within 3 weeks. She was at home and on hospice care those last 5 days as she wanted at the end. It was a true blessing to have had multiple meaningful conversations with my Mom over the last several years of her life and be able to close her last chapter the way she wanted it.   

//Peggy Papert,  Elder Care Consultants of Texas

understanding my dad's plan: more observing than conversation

My Dad and I were very much alike.  We both liked simplicity, cars and travel, comfortable and well maintained homes, kept personal matters organized and didn’t want family and friends to worry about our health or end of life issues.  When it came to discussing end of life issues, we differed in style.  I had to discover what my Dad’s end of life plan was while I have a detailed written plan which I hope my loved ones will follow.

         My clue about Dad’s plan was not a discussion but the manner in which he dealt with my mother’s dementia which crippled her for a number of years.  He insisted on taking care of her at home surrounded by caregivers.  Although he was in his mid to late nineties when my mother’s dementia struck her, he never once suggested that her plight was too much for him to bear or that it may be time for her to be moved to a memory care facility.  He insisted that she remain in her home so that he could be sure that she was comfortable at all times.

        After my mother’s death, I urged my dad to move to the town in which I lived without success.  He wanted to remain in his home located in the town in which he lived for 64 years. 

        When my dad became very ill suddenly after turning 98 years old, I instinctively knew that he wanted to remain at home with caregivers and not live out his remaining days in a senior living facility.  My family and I did everything we could to insure that he could remain in his home as comfortable as possible.  Nothing was ever discussed--we just knew what he wanted because of the way he cared for our mother during her illness.

        So, while it may have been better for all concerned to raise the end of life issue with Dad or for him to raise it with us, sometimes you just know what a loved one wants by observing how he or she deals with another loved one’s end of life journey.

//Ralph Zatzkis, Elder Care Consultants of Texas

laurie's Story

My Mom and I were very close. Over the years we went to several of my friends’ parent’s funerals together and she would tell me what she wanted for her funeral. Do this, don’t do that, etc. We discussed it frequently, in a light hearted sort of way. She was a social worker, worked with seniors and was a hospice volunteer. She was very comfortable talking about death. I thought I knew her wishes and that we were all set. Then, in 2008 she became critically ill from complications of lung cancer.

Mom was first diagnosed with lung cancer in 2000. During those last 8 years, my brothers, my husband and I had helped her through several surgeries, rounds of chemo and radiation. She lived independently throughout her entire experience with cancer. We were there to support her but she managed all of her own appointments, medications and all of the details. When she went to the ER in 2008, she was in various critical care situations for over 9 months. She went from the ER to the Intensive Care Unit, to a regular hospital room, back to the ICU, to a step down type hospital, a rehab, back to the ICU, etc. It was quite the roller coaster. We were totally unprepared to make medical decisions for her. In the beginning of this journey, my Mother was in an induced coma and all decisions were up to us.  We had discussed what her wishes were after she died but we never discussed how she wanted to live at the end of her life. Even though we had multiple opportunities following her previous surgeries and treatments, we never brought it up, and neither did she. Lesson learned: Funeral plans are not end of life plans.

Everyone needs to discuss and identify how they want to live before they die. These conversations are truly a gift….a road-map for your loved ones to be able to follow your wishes and not have any feelings of guilt for those decisions because you told them exactly what you wanted.

The 9 months she was in the various hospitals was the most difficult time of my life. Looking back after years of reflection, I am confident that we did make all of the right decisions for her and she was calm and settled at the end of her life.

//Laurie Miller, Apple Care and Companion

jeff's story

In my situation, the Conversation Project not only supported and reinforced the healthcare decisions we had already made for our Dad, but provided the structure for engaging my siblings and Dad’s wife regarding funeral, burial and Shiva arrangements. By using the Conversation Project booklet, I was able to ask those most important, and at times very uncomfortable, questions in a very easy conversational approach. To tell you the truth, our 3 hour non-stop conversation, while exhausting, was extremely cathartic. In doing so my siblings and I agreed on and resolved 95% of the issues. It made a huge difference knowing our focus was on our Dad during those last final days and not having to worry about the what and the how. 

//Jeff M.

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