Category: Eldercare

Some thoughts on Advance Directives

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Every emancipated adult should have an Advance Directive. Once a child is emancipated, parents can no longer make medical decisions for them by default, should the offspring become incapacitated. Often we limit our conversations about Advance Directives to Elders, thinking they are more likely to become cognitively impaired. However, the age cohort often overlooked are young adults between 18 and 30 who are at risk for devastating traumatic brain injury (TBI) — due to motor vehicle accidents, recreational accidents or substance abuse.
Preceding the Patient Self Determination Act (PSDA) was the tragic, 1970’s case of Karen Ann Quinlan, which attracted sensational media attention and brought the controversy between family desires, medical opinion, ethics and law into the cultural conversation. I have no doubt that her case, and those that followed, helped propel the PSDA into being. Shortly after the Quinlans lost their appeal to have their daughter’s life sustaining treatments revoked, I found myself working in a “convalescent hospital”. There I had the unforgettable experience of caring for a high school classmate, not even 21 at the time. Shortly after graduation, while walking on a lonely road late at night, he was struck by a car. Suffering spinal cord and traumatic brain injuries, his quality of life was undeniably impaired.
I don’t think revoking heroic measures was an option in California in 1978, and this encounter, so close to heated debates about terminating life-support, left an impression on me. In recent years, I have had conversations with young adults that include thoughts about accidents and injury. They are quite clear “I don’t want to be kept alive if there is nothing left of ‘me’”. Youth are as important to include in the conversation about Advance Directives as are their Elder relatives, and for similar reasons. Loved ones can’t act on your behalf if they don’t know what you want.
We don’t like to talk about death and dying, about end of life mystery or transition. Life seems brighter if we ignore the shadow side and go merrily on our way. For us, it might be. If we’ve become incapable of making decisions for ourselves, chances are we won’t care much. Some won’t talk about death because they don’t want to upset their families or those that they love by “making them think about it”. The irony is that by trying to protect those we love by ignoring this reality, we force them into making decisions about us which they are ill-prepared to make. Some people don’t understand what Advance Directives are or how they can help.
I have watched this process when families are unprepared. It is often grueling and painful. The second-guessing about what “mom wants”, the contention between those mature enough to let go and those clinging to hope or fearing death can devastate a family that needs to support each other and prepare to grieve.
Most departments in my hospital, which serves a large retirement age population, assertively broach the topic of Advance Directives, and in my specialty clinic new patients are educated and offered a copy of our state’s Advance Directives workbook.
AD pamphlets read very similar from state to state. They are dry and medically oriented. Recently, I was introduced to a stellar revision of the standard Advance Directives, entitled “5 Wishes”. It reads very similar to the more bland AD pamphlet with three notable exceptions – “How comfortable I want to be”, “How I want people to treat me”, and “What I want my loved ones to know”. Those tools could soften and gently personalize the conversation about end-of-life decision-making.
Those three wishes give the powerless – those who can only stand by while someone they love is dying – specific tasks to perform to enhance the quality of the last days and hours and instill a sacred dignity to the art of dying. I wish that they had been a part of my own mother’s AD process. At 88, however, she was not very open to talking about what she wanted (besides that she didn’t want her children to hurt). Baby Boomer Elders may be more forthcoming about what would make their final passage sacred and meaningful, (or even fun and joyful!) My Depression Era mother was not. We had to guess. How much gentler it would have been if we had known what was important to her, to enhance her comfort.
There are few reasons for any emancipated adult to not have the discussion about end of life wishes — from medical care choices to what music you want playing when you are unconscious or passing — and legally initiate appropriate Advance Directives. Perhaps more people would engage in them if they knew that:
1. They can be revoked at any time by the issuer.
2. They only go into effect if the issuer cannot make medical decisions for themselves due to inability to communicate their wishes.
3. It alters the responsibility for making life-to-death medical decisions to the issuer, having had a discussion about their values and desires with their appointed representative. It is an act of personal empowerment — one is less “victim” to the end-of-life passage, and more a participant.

4. The process of reviewing the choices one must make when completing their advance directives opens the door to conversation valuable in any relationship, “what to do when I am dying”.
5. It is kind for the family to have decisions articulated and communicated in advance.
Inadequate understanding is a barrier to completing Advance Directives. The concept that it is somehow a “death sentence” or supported by “death panels” can link Advance Directives to one of the most emotionally charged phrases to come from the detractors of the Affordable Care Act, though the PSDA precedes the ACA by more than a decade. For those wishing to engage in all means of life-sustaining treatment, it is still important to appoint a representative to direct medical care and long term care choices from home health, nursing home to hospice. The idea that Advance Directives are only for those wishing to halt life-sustaining treatment is a common misunderstanding of it’s purpose.
There is a risk of exploitation and that needs to be guarded against, and is, by the stipulation that the appointed representative cannot be a caregiver or employee of a facility where the issuer receives care. It is possible to appoint the wrong person for the wrong reasons. A representative should be someone the issuer is confident will follow their wishes, who has knowledge of the care they have been receiving and their medical history, as well as their values and desires.
Life is short, the time is now to think about what you would want and who would be your voice if you couldn’t make your desires known. Have the conversation with your children and your folks.

For more information on “5 Wishes” visit http://www.agingwithdignity.org/five-wishes.php

Full list: Is there a primary stroke center near you? – USATODAY.com

Full list: Is there a primary stroke center near you? – USATODAY.com.

I hadn’t heard of Stroke Care Units until very recently. The data on recovery, reducing long term disability and reduced recurrence of stroke is significant for people who receive care from an SCU rather than an ICU/CCU or medical/surgical floor. The exact mechanism is not clearly identified, but whatever the reason, the outcomes are better and the stays tend to be shorter.

Is there the Stroke Care Unit near you???

Moving from “Burden” to “Participant”, a paradigm shift in the roles the 1st generation can play in the extended family.

I hear this at least once a week – someone will state they don’t want to be a burden on their family. They don’t want to live with adult children, they don’t want to ask for help if they live alone. It hurts my heart to hear this, I learn so much from the Elders I know and enjoy sharing time and stories. I don’t want to see my role in my family change from participant — from being essential to our joyous and goal-oriented function — to feeling that I have nothing of value to contribute and would only be a draw on resources. A “burden”.

 

New American Dictionary defines burden thus:
burden |ˈbərdn|noun
1 a load, esp. a heavy one.
• a duty or misfortune that causes hardship, anxiety, or grief; a nuisance
• the main responsibility for achieving a specified aim or task
• a ship’s carrying capacity; tonnage:

2 (the burden) the main theme or gist of a speech, book, or argument
• the refrain or chorus of a song. (italics mine)

How did we come to believe that as we age in our family, our role evolves from essential service to a “misfortune that causes hardship, anxiety, grief”, or that we become a “nuisance”??? I have fixed ideas about how this shift from essential, valued, integrated member of the family disintegrated in our Post WWII culture, (you can find them addressed in Chapter One of “Holding Hands: Journeys with the Aging Family” to be released in 2013). More important here is refuting the myth of the invisible, devalued, aging adult and moving from “burden” to “participant” in the co-generational family.
The “burden” concept begs the question, “What do we need to change so that Elders stop defining themselves and their needs as a burden?”  How do we help them quantify the value they bring to the family?
It would be nice if Elders in a co-generational setting were more visible in our media. Portrayals in popular culture “cameo” grandparents, aunts and uncles. They are not part of the weekly story line, and are often written out of our own storylines as well.
This invisibility comes from both sides. Our aging parents, who began their families in the neo-television/post WWII era, also have no model for integrating parents. Likely, they moved away from their own families of origin to the suburbs after the war, leaving their own parents to the care of each other, their siblings or a child who stayed geographically close. To have parents live with us after WWII was interpreted as a weakness – not cutting “apron strings” or being overly involved. “You aren’t going to let your parents tell you what to do, are you?” as though taking advice from those who have been there/done that, would be shameful. Not independent. Not trendy.

Our very narrow tolerance of anything “different” bled into the way we learned to not care for our Elders. On the other end of the parenting spectrum, we were expected to cut our children loose at the earliest legal age and start planning our midlife, renewed “independent, Golden Years” with a sense of relief that all that family stuff was done, checked off the to-do list of life. I’m here to tell you, that was all a bunch of hooey.
What we gained instead were expensive and low-quality institutions to house Elders, middle-aged parents suffering from “empty nest syndrome”, new retirees suffering from a lack of purpose and sense of value. I stand firmly behind the belief, from four decades of observation and one of professional exposure, that humans are most decidedly NOT meant to be independent, autonomous islands in the stream. We hunger for connectedness, integration, participation, feeling valued and loved, and contributing to family and community. The tribal model of survival is as ancient as our earliest recorded histories, there is a reason why. This experiment of division has not promoted individual or family health as our members have aged.  It fractured family resources rather than concentrating family wealth and resources of time, and now creates a discontent in the Elder generation which too often leads to great feelings of sadness and loss. Where they may desire connection and support, they deny their own needs because somewhere along the line they bought the lie that to do so would be burdensome to the very people they gave life and love to.
This is wrong.

Recognizing how we got here is part of the solution. The other part is asking yourself how you show  you recognize the contribution your parents, aunts and uncles, Elder family friends make in your life now. Reminiscing is great, but subtly reinforces the concept that those days of value have passed.

  • Why is their presence important NOW?
  • How do they add value to your life NOW?
  • What could you not do without them for NOW?

In the early self help years, we called these “ego strokes” and they developed a reputation for being unhealthy. They aren’t. We all need to know that we matter to the people around us, and no age cohort needs that more than the one that has been rendered invisible, comical, burdensome in 40 years of televised cultural teaching.
What can your parents teach your children – essential family or cultural knowledge, survival skills, games and playfulness – that you can’t due to limited resources or time? Looking at the generations that stand on either side of you, what do they have to offer each other? Child care? Cooking lessons? Learning to budget money? Homework supervision? Being the licensed driver while a teen gets their supervised hours in? Living models of history?  Can your child learn how to express love and service to an Elder family member, just because it’s the right thing to do? (Teach them now with your parents, and they will teach your grandchildren in time).
This is how we rebuild a cultural model of family members taking care of each other across the lifespan. This model is seamless, no one gets left out. Everyone knows they are important to the quality of someone else’s life, to the security of the family and it’s members, and love and respect have ample room to grow.
Referring back to that original definition, the alternate to “nuisance” was:
2 (the burden) the main theme or gist of a speech, book, or argument
• the refrain or chorus of a song.

I choose to think this is where the descriptor as Elder family member being “a burden” first came from. As the historians of our family and culture, that is a much more tender and fitting definition of those who have come before us, shaped us, nurtured us, raised us up. May our Elder Generation come again to be revered as carrying the chorus of our family song.

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Happy Father’s Day,
Katherine

Have distanced from your Elders? Why do you think that happened?

I was listening to Brene Brown on Oprah’s Super Soul Sunday recently.  She made a statement that struck me to the core. Initially, I thought of it in terms of my own life parenting adult children, working on building a new relationship. Musing on it for a couple days, though, I realized that this contributes to why — as a culture of middle aged adults — we distance from our family Elders. Brene stated “When we lose our capacity for vulnerability, joy becomes foreboding.”

“What makes us vulnerable?” Risking the pain of losing a parent you love and adore and know really well is being REALLY vulnerable to loss, pain, self doubt and regret. As our parents and other Elders age, we know that we will, ultimately, have to say goodbye. We will experience loss (statistically speaking). To fully engage with our parents as they age, as their abilities change or decline, as they need us more as advocates and companions and not just as children, is to open ourselves up to the pain of letting them go after becoming very engaged and attached. That is something, perhaps, worth defending your heart against (or not, more on that to follow).

The second part of that quote is that “Joy becomes foreboding”. When we are afraid of being vulnerable and truly open to the moment without fear of what may or may not happen down the road, even happy moments generate tension. When I had a great day with my mother, I often felt pre-emptive grief, realizing that these were special days and numbered. How much better it would have been for both of us if I could have just experienced the joy without the foreboding. Would I have shown up for her better? More often? It is something I contemplate in other relationships now.

There are many reasons why people distance from aging relatives and friends.  Their changing or dissolving abilities challenge us.  It isn’t easy to be with some people — communication is difficult due to physical changes (loss of hearing for example); cognitive changes (from mild to advanced dementia, depression and ensuing negativity), to powerlessness which makes people feel hopeless for any positive change in their situations.  Hopelessness is hard to cope with in someone we love, someone we want to help out.  Too often it seems that our Elders don’t want help, they just want to complain.  This may actually be more a symptom of depression (which is a common and treatable disease among Elders), than an overall personality change.

We may distance because WE feel powerless and hopeless.  “There’s nothing I can do, anyway.”  (A self-fulfilling prophesy if ever there was one).  “They don’t want my help” (No, but they might want your attention, to know that they aren’t alone in this last walk around the block).  “They live too far away” (how can you mitigate that through phone calls or setting them up with social media?).

This is what I have learned about distancing and avoidance.  Our parents will likely precede us in death (mine already have).  In the case of my father’s death, he was young and it was unexpected.  There was no planning for, preparing for, working out old issues.  It just happened, and there we all were, carrying around the things left unsaid and undone.  That is the stuff regrets are made of.  Regret, like disappointment, is an emotional experience I go out of my way to avoid.

My mother’s last years were quite different.  Yes, I often woke up in the middle of the night with a start and wondered if she had just fallen.  Yes, we lived from crisis to crisis because there was a lack of communication and planning for quite predictable events.  Yes, some days I thought a week-long rest in the local behavioral health inpatient unit would be just the ticket for me (thankfully I never had to use that extreme back up plan).  In the long run though, I have powerful memories of my mother.  Her grandchildren, who engaged with her often showering her with love and attention and likewise being recipients of the same — have great stories to share.  In her last years, my mother imparted her values, her humor, her resiliency on that next generation.  That didn’t happen all at once but over time, over ice cream and Scrabble boards, card games and coloring books, Sunday dinners held at her house even if the best she did was Shake and Bake chicken strips, mashies and salad.  We watched together as her abilities diminished.

My mother’s passing came as a completion of several years of work in which we loved on her, were devoted to her comfort and quality experiences.  With our help, she remained in her home until just shy of her 88th birthday, moving to an adult foster home the week before.  I sat with her daily.  We knew her favorite music, and it played in the background.  We knew the stories she liked to hear re-told, and we shared them.  We placed phone calls to people she needed to hear loved her, one more time.  Our pastor came and sorted out some last issues around shame.  When my mother passed, it was quiet, gentle, complete.  I have never looked back and thought “I wish I had only….”, because we chose to be present with her.  Choices were made that were temporary sacrifices for a lifetime of peace (mine and my children’s).  When we think of my mom and the void her absence sometimes creates for us, it is with a sense of love and acceptance.  There is no guilt.  No regret.  We allowed ourselves to be vulnerable to the pain, and in the process, allowed ourselves to experience the love and  joy that spending time with her gave.

 

I challenge you to look at current patterns with  Elder family members. What stands in the way of regular communication: Geographical distance? Technological deficits? Unresolved relationship issues? The belief that parents are the responsibility of another besides you? Time constraints?  Upon further examination, are any of those things possibly excuses to help you maintain a safe emotional distance from the reality of aging or end of life issues, for yourself or your parents? Feel free to comment below, and as always, feel free to share this blog with others walking this middle of life walk.

The Art of Parent Care: Help me know what you need.

Thank you for filling out my poll.  I hope to use this information to guide me in my blogging, so I am addressing the issues most pressing to my readers.  Remember, we’re all in this together!

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The Art of Parent Care: Help me know what you need.

Thank you for filling out my poll.  I hope to use this information to guide me in my blogging, so I am addressing the issues most pressing to my readers.  Remember, we’re all in this together!

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