Creating an advance directive aka living will is something most of us put off until later in life. My parents created their advance directive in their sixties. Charlie and I created ours in our forties. Why so early? Because of the growing health care needs of my parents and other elderly relatives, starting when I was in my late forties, I decided to create my own sooner than later.
Our Elder Care Journey
Our first major health crisis as adult children of aging parents happened about 15 years ago. My father needed a triple by-pass and another special procedure called “the maze.” All four of us children, and our mother, rallied round and sat vigil through hours of surgery followed by hours in recovery.
Doctors and nurses both tried to prepare us for seeing him in the recovery room for the first time after surgery. But, nothing can prepare you for the shock of seeing your loved one on full life support (see Murphy’s Law). He survived, recovered and was much better, physically, because of the surgery. However, it took him a full year to recover completely.
My glamorous parents – circa 1950
2nd Health Care Crisis
His second brush with death occurred following a standard knee replacement surgery. After release from the hospital from the knee replacement surgery, he was transferred to a skilled nursing facility to recover. While in the skilled nursing facility, he went into a non-responsive state. Me, my husband, my mother, local siblings and their children arrived en masse in ER.
We were asked by one of the ER doctors about my father’s end-of-life wishes. Without hesitation, my mother said, “Whatever it takes; he wants to live.” He survived, but was in ICU for 7 days, up-and-down, up-and-down – again on life support.
My siblings and I would trade shifts since we were only allowed in his ICU room 2 at a time. One of those times, he woke up when one of my sisters and I were in the room. He was fully intubated, so couldn’t speak. The look of fear in his eyes was heartbreaking and he flung out his arm and hit me, hard, fully in the chest. I am amazed at his strength and heartbroken at what I thought was his way of telling me that he didn’t want me there.
Many days later, when he was out-of-the-woods and recovering again in the skilled nursery facility, I asked him if he remembered. He said yes. I asked, “Why did you hit me, Dad?” He said there were devils in the room and he wanted me to leave to protect me from them. I cried.
3rd Health Care Crisis
His next bout with a major health crisis came when he broke his neck. He was, again, in a skilled nursing facility recovering from a previous head injury from a previous fall. I arrived at the skilled nursing facility for a routine visit only to find him on the floor near the entry door surrounded by paramedics.
They were bracing his neck and strapping him to a back board for transport to ER. This was his 3rd major fall in 7 months resulting in a head injury. So the paramedics took him to a trauma center instead of the closer hospital. Note: I asked that they take him to the trauma center.
The ER doctor was blunt – my father was fully conscious – and asked me about my father’s end-of-life wishes. I expressed my father’s wishes to live. This ER doctor expressed his dismay stating flatly he’d had a full life. And, my father might want to reconsider this in the future because at his advanced age (81 at the time).
My father, laying on a gurney, head in neck brace, waiting for diagnosis and treatment with silent tears streaming down his face as this ER doctor inappropriately expressed his opinion. My heart was broken sharing my father’s vulnerability.
Having “the” Advance Directive discussion with Your Parents
My mother, too, has been at death’s door 3 times now. The first time was about 10 years ago, then again about 4 years ago and now recently. Always, they ask me about her end-of-life wishes. Always, I answer, “Full code.”
My parents created their advance directives 10 years ago at the same time they did their Wills and estate planning. And, while one needs to check these documents periodically as we age (and they have), their end-of-life wishes have never wavered. They want to live.
At the skilled nursing facility that they now frequent in between these crises, if my parents are there a month or more, the facility invites the family to a meeting with the patient and the health care team. This team includes the directors of nursing, physical therapy, occupational therapy, dietitian, social worker, etc. – about 8 to 10 center employees plus the patient and patient’s family.
Each center employee gives a verbal report on the patient and they ask for comments from the patient and the patient’s family. And, they always ask the patient their end-of-life wishes. I have heard my parents, over-and-over-and-over again, firmly and forcefully express their will to live. Even if the hospitals and skilled nursing facilities are given a copy of the patient’s Advance Directive, they still ask – every time.
What I Know Today about having an Advance Directive
Here’s what I know today, this minute, about having an advance directive in place and discussing it with your adult children:
- My father would not now be alive; he would have died 15 years ago.
- My mother would not now be alive; she would have died 10 years ago.
- If you are the Power of Attorney (POA) of your parents or another elder, it is imperative that you fully understand their wishes so that you can honor those wishes.
- If you are the person reviewing the various forms, such as “Do Not Resuscitate” (DNR) forms, “Physicians Orders for Life Sustaining Treatment” (POLST) forms, as well as an Advance Health Care Directive, with your loved one, it is imperative that you completely and thoroughly discuss the consequences of the choices they make. DNR means DNR.
- While there are “standard” forms used in our State, they still call for full discussion with your loved one, in advance, if possible. Don’t wait to have this discussion with your parents or elderly loved one until a crisis occurs and the decision is now left up to you and you alone. Taking the initiative before the crisis occurs give you, the POA, a clear road map to follow.
If the hospital or facility will accept the Advance Health Care Directive that my parents have already completed, I just give them a copy of it. I keep printed copies of each of their POA’s and Advance Health Care Directives aka living will in my car. They are always available without me thinking about them. When the supply in my car is gone, I replenish it.
It's never too early to start the conversation about an advance care directive aka living will with aging parents. #eldercare Click To Tweet
My Parents Today
If you’ve read my recent posts, Many a Winding Road and The Sunshine Gang, you will know that my mother was taken by paramedics to ER. She was admitted to the hospital, transferred to ICU, etc. over the last several days. She has now been released from the hospital and is continuing her recovery in a skilled nursing facility.
While she is better and recovering, the mystery of her sudden illness remains that – a mystery. I expect she’ll be in skilled nursing for several more weeks before she’ll return home to assisted living with my father.
So, the next couple of weeks will be difficult with 3 elderly relatives in 3 different facilities all needing emotional support.
The following excerpt is part of the lyrics are from Judy Collins’ 1968 song “Both Sides Now.” As I’ve looked at the various storm clouds forming in our area over the last several days, this song came to mind as a perfect backdrop to these pictures (all taken by me with my iPhone) and how I feel.
I’ve looked at life from both sides now
From win and lose and still somehow
Its life’s illusions I recall
I really don’t know life at all.
Click here to download and print your FREE quote: Both Sides Now – Judy Collins quote.
Until Next Time,
You are such a good writer. This information is incredibly helpful. And to end it with the song and pics is very touching and real. It’s life! Thanks so much for sharing.
Thanks, Anna, for the kind words and support. You’ve “been there, done that” and are still doing it. My love to both of you.
Great story Carole, I can’t believe 15 years have gone by since this all began. Keep up the good information stream.
Thanks, Dawn. It’s always great to get up in the morning and see you on-line reading our blog posts! Thanks, as always, for your amazing support.