End-of-Life Lessons from Dad: Lesson #1

September 14, 2016
Denise Hyde
mom-dad-wed

Mom and Dad wed… November 2016 would have marked their 60th anniversary.

My father passed away recently. It was unexpected; a stroke. Our family found ourselves in a 3-week journey with Dad that was infuriating, exasperating, surprising, and heartwarming all at the same time. I suspect it was much the same as many families must experience every day; it was just our first time. Because of what I have learned from so many amazing care partners that take this walk with Elders every day, I paid attention to the final life lessons my Dad was passing along to me through this experience. I’d like to share them with you, partially to honor him, but also to remind others why transformation of Eldercare, wherever the Elder is living, is so very important.

Lesson #1 is about the power of consistent relationships. In the person-directed care transformation work that I have been doing for the last 18 years, untold number of hours have been spent speaking, writing, advising and promoting the concept of consistent relationships between Elders and their care partners. It is always amazing how many ridiculous excuses are thrown back at me about why that is so unreasonable to expect. Dad’s journey has provided me with another perspective about why the excuses are so lame!

Over the course of a 3-week journey, we encountered a multitude of healthcare professionals who were Dad’s care partners (of course, they did not see themselves that way). One initial promising sign that this was going to be okay was the very large “Person-Centered Care” poster plastered all over the walls of the hospital floors that Dad spent time on. Unfortunately, hanging up a poster on the topic doesn’t translate into actual action. The inconsistency in nurses, CNAs, doctors, etc. meant we had to continually re-introduce ourselves (the family) and Dad to new healthcare professionals almost daily. The new nurse would come in and say “Hello Mr. Thomas” and we would say “He goes by Wayne.” The next healthcare professional would come in and say “How you doing Mr. Thomas,” and we would say “He goes by Wayne.” I was almost tempted to record it on my phone, so we didn’t have to keep saying it. I cannot express how comforting it was to come in and find we had the same person caring for Dad two days in a row!

To say it was frustrating to not be able to get into any sense of routine with the healthcare professionals around my Dad’s care is an understatement. I can count on one hand the number of people who asked us about who he was and what would make him comfortable. When we offered information about Dad, and they seemed to understand, it would be good for a day or two. Then, we would find that we had new caregivers, and we had to start over. When you are in stress as a family, this is frustrating. When you understand what person-centered care is really all about, and the potential it offers, this is unconscionable. Believe me, many amazing teams of care partners that I talk with every day flashed through my mind. Oh how I wished they were located within a few miles of where we were, so Dad could go and experience their loving care.

On the other hand, the real relationships in Mom and Dad’s life came through very strong during this journey. They reached out to my Mom daily. Her phone rang most all the time. We overspent our data limits on our phones answering all the texts and emails we were getting. We found fresh food waiting in Mom and Dad’s camper when we went back to the RV Park at night. They would stop me, as I walked in the morning and ask how Dad was. They know the power of consistency and being well-known. We had people praying for Dad all over the country all because of consistent, meaningful relationships that he and Mom are a part of. This is a skill the healthcare field needs to relearn, embrace and actually practice. ‘Professional distance’ stinks from the perspective of the family, as well as the Elder!

Consistent relationships are essential. You cannot heal and be whole without them. You cannot make a difference in the lives of others without them. It matters not where you find yourself as a care partner; in your own home, out in the larger community, a hospital, clinic, or long-term living environment. No more excuses, embrace consistent relationships. Don’t let systems and processes tell you that they are dangerous. Ask for them; demand them! Consistent relationships are the heart of effective healthcare.

What has been your experience when it comes to consistent, or inconsistent, care partner relationships? How can we stand together and say “no more?” We have the power to change the system!

6 Comments. Leave new

So sorry for the death of your father, but the wisdom gained and shared is a positive from the experience. My father died in April, and our experience was with the doctors at the hospital, who did not know my dad or even try to see the whole picture from the EMR available in front of them! They were very uncaring and unsupportive. ER docs, hospitalists, specialists – no communication among them! Thank goodness his last three weeks were at a nursing home who understood consistent assignment and personalized care!

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Elizabeth Ostuni
September 14, 2016 9:41 pm

It has been my experience as a caretaker to family members, an employee in a long term care facility, and a volunteer NY State Ombudsman there are many inconsistencies in the vast majority of institutionalized settings. I feel these inconsistencies are largely due to the corporate transformation of our health care system. Many stockholders and owners seem to turn a blind eye in lieu of profits and politics. Currently In New York State, there are no minimums regarding ratio of staff to patient care thus allowing institutions to operate short staffed due to call-ins while reaping huge monthly profits, leaving our vulnerable elderly at risk. Change is needed!

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It might be a pipe dream, but it seems such a simple thing to assign a team to each elder in care, so that every caregiver knows not only critical medical needs, but personal needs of every patient. Of course it would cost more, but would be so worth it. I am so sorry for your loss.

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Denise, I am so sorry for your lose…your father certainly shared the wisdom of an Elder in last weeks you shared with him. I can’t help but believe that he is looking down with pride at the incredible daughter he raised and the work that you are doing, helping to change the culture of aging. I am so grateful to have you as a mentor on my Eden journey and in my life.

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Wow Denise! I am so sorry for your loss. Thank you for taking the time and energy to teach us from this very personal and painful experience. I have just been asked to help an organization move their care partners into permanent relationships and I will use your story. Thank you.
Suellen

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Shirley DeRuchie
November 26, 2016 1:22 pm

Thank you for sharing your story and I am so sorry for your loss.
I am almost 88 and see a lot happenening to my friends in their last days.
It is so apparent everything you read and hear is “for the children” and it seems about time they think about the seniors. Seniors sometimes only need a little help to get few groceries, go to Dr. or even for a little
Household help and they would be able to stay in their homes, it just seems arest home is always answer for us old folks.
The average old person now did not make the big money so retirements are small as is social Sec. income , most would love a little help but do well to feed themselves.
Idohope the new administration will give lots consideration to the hardworking elders who ask for little but need some help.

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