davidlsolie davidlsolie

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Aging Parent Fluent  Caregiver, clinician, artist, author and collaborator on partnering with aging parents: #howtosayittoseniors, #caregivermindmaps

We wish it didn’t come to this, but it does. Someone you care about is at the end of their life. No one knows exactly when but everyone is clear about what’s happening. Now comes the hard part, the conversations that occur before they’re gone. What do you say to those who are leaving? How do you avoid stumbling into uninvited pep talks, dismissive assurances, awkward displays of grief, or embarrassing cliches? Maybe you don’t. None of us are really prepared for conversations near the end. Our emotional vulnerability alone leaves us at a loss for the right words. Fortunately, there are ways to reframe this difficult dialogue that bring comfort and control to the dying. In the end, it’s all about who’s directing the conversation....From “Conversations Near the End”...see complete blog post here: http://www.davidsolie.com/blog/conversations-end/

No Easy Way Out
In working with our aging parents, we encounter predictable dilemmas with no
easy way out. Here is a personal story that echoes a common theme I hear
about from adult children.
As my mother approached 90 and despite increasing frailty and responsibilities
for my special needs brother, she simply refused any assistance. Every approach
was rejected. The best we could do was build support scaffolding around both of
them for when the bottom fell out.
This went on for years. Airline flights, phone conversations, involvement of other
family members, protracted conversations with our family lawyer, meetings with
my brother’s caseworker, and endless strategy sessions with my wife all ended
with the same outcome. It was my mother’s way or the highway.
So we shored up the situation the best we could. Despite my mother’s objections,
we purchased long term care insurance when she was in her late seventies. We
petitioned the court so she and I could have co-guardianship of my brother. We
got her to sign a Medical Power of Attorney. Then we waited.
In 2006, she suffered a major stroke. She survived the stroke but had to be
placed in nursing care due to a severe disability. My brother was moved to a
foster care home for special needs adults.
Slowly we all dug our way out. Her house, my brother’s living arrangements, her
long-term care benefits, and her medical care were just the tip of the transaction
iceberg that needed ongoing attention. After making a heroic comeback from a
devastating stroke, she passed away in April 2007.
The take away message for adult children is this:
1. Advance as far as you can go based on the personality and the nature of your
relationship with the aging parent.
2. Retest the boundaries of that advance periodically even if they appear initially
absolute. You never know when there is some give in the system.
3. Build the best scaffolding you can with what you have.
4. Keep asking yourself this question: What am I responsible for? (See 5 and 6 below in a second comment)

Common Pitfalls in Caregiving: Forgetting The Person You Use To Be

Caring for aging parents is a consumptive role that requires compassion and resilience to keep everything together. Ironically, it’s also a role where often positive feedback is more the exception than the rule while negative feedback flows freely from aging parents and other family members

In this punitive environment, it’s easy for caregivers to feel trapped and disoriented behind a wall of negativity. In our caregiver support groups, we all call this predicament “forgetting yourself,” the painful loss of the person you use to be. Now what?

The short answer is that caregivers need to find ways to remember themselves as the first step in reclaiming what has been forgotten. The long answer, it’s not easy to do and in most cases, cannot be done alone.
This is where support of like-minded peers found in groups proves invaluable. These caregiver group offers participants ample room to tell their story in a non-judgmental setting that provides three important benefits:

They accept all caregivers where they are.
They have empathy based on their own issues with caregiving.

They openly share their experience, insights and resources.

In our groups, one of the tools we use to facilitate the remembering process is called “List Testing.” This simple and easy to complete d self-inventory is designed to counterbalance the chorus of critic’s highly biased narrative from others about the care an adult child is providing an aging parent. Riddled with disapproval and shaming, these critical and many times uninvited voices have a deep and disturbing impact on the well being caregiver. List Testing mitigates this negative messaging by building a contrarian inventory of supportive voices that refute and neutralizes this toxic propaganda. Here is how it works. (See the rest here http://www.davidsolie.com/blog/common-pitfalls-in-caregiving-forgetting-the-person-you-use-to-be/)

Old, Sick and Broke...The new normal in the Boomer saga...read about the convergence of forces that is shaping sad destiny at this link: https://www.nytimes.com/2018/08/05/business/bankruptcy-older-americans.html?nl=top-stories&nlid=48285179ries&ref=headline

This "must read" article for caregivers outlines the synergistic complexity and uncertainty that dilemmas and family systems interject into all aspects of a caring for aging parents. As important, the article offers practical strategies caregivers can readily adopt to better navigate these formidable challenges.

In addition to the article, the pdf booklet also includes a one-page infographic that diagrams the key features of dilemmas and family systems along with their coping strategies.

You can request a complimentary copy of the booklet here: http://www.davidsolie.com/blog/new-pdf-booklet-caregiver-decision-fatigue/. The booklet will be emailed to you in a pdf format and is meant to be shared with family members, colleagues, clients and anyone who is involved in the care of older adults

The First Cousin
I grew up amid a herd of cousins, surrogate brothers and sisters who were embedded in my childhood. Operating as life scouts, they lived a few years ahead of me on the dangerous and uncharted perimeter of the adult world. One by one we all transmuted into adults with careers, families, kids, and aging parents.
In most cases, our aging parents passed on when we were well on our way in middle age. With each loss, our world became more sober as the reality of being "next" in line collided with the world of sixty-something. But a new emotional tipping point in the drama of being older occurred with the unexpected death of the first cousin.
It's not that we hadn't experienced the loss of peers in childhood or as young adults. And then after fifty, the news of friends, friends of friends, and people we simply knew about being suddenly gone began occurring with a prophetic regularity. While it was disorienting and disturbing, it initially spared our family network of adult children. But when the first cousin of the surviving herd died at sixty-something, all that changed.

While it was a single loss, we knew it was a cautionary tale about our generational position and predicament. Despite the density of our modern lives, we could no longer afford to ignore this new vulnerability, a realization that haunted our awareness. We knew we were never going to reclaim the frequency or closeness of childhood. That was another life that had served us well, but was gone. We also knew that the meaning and import of our early years now took on legacy proportions with the threatened loss of its primary players. This compelled us to undertake a cousin audit of the history that defined so much of our early family life.
We spoke out loud about what meant the most to us and why. We disagreed about chronology but respected personal importance. We confessed our bias, preferences, blind spots, selective memory and the out and out rewriting of history. But most of all we saw, from the end of middle age, how complicated life was for our parents, like it or not. We didn't gloss over the unsavory and pathological events we would have gladly avoided, b

When Everything Falls Apart "Remember that there is nothing stable in human affairs; therefore avoid undue
elation in prosperity, or undue depression in adversity."....Socrates
The world of aging parents is a complex system. This is not simply a scientific
observation; it is a critical point that most of us gloss over on the way to getting
things done. Not fully appreciating the nature of complex systems can crush
expectations and implode the best intentions.

Complex systems are based on immutable laws. One that is especially
significant to adult children and their aging parents is the disproportionate law:
minor changes in the system can produce major consequences.
All of us have experienced this painful reality but maybe thought it was bad luck
or unfortunate timing. It wasn't. It was the nonlinear ricochet of a system always
on the verge of disproportionate behavior. Why is this useful?
First, it reminds us that there are no "little" changes in the world of aging parents.
Any action, throwing out old magazines, scheduling an appointment without
telling them, or not including a sibling in what seems a minor decision can trigger
a temporary system shut down. This is the innate volatility of complex systems.
To expect anything else is to make an already challenging situation nearly
Second, it allow us to set realistic expectations for all parties involved in the
drama of aging parents. No amount of planning, effort, or hyper-vigilance can
overcome the disproportionate law. If you are defining success as an adult child
in terms of preserving system stability, then the odds of being successful are
close to nil.
Better to define success in terms of caregiver aikido skills, meaning how well you
flex, adjust, and re-channel the predictable upheaval of disproportionate events
until they run their course. This gives you a fighting chance to reduce the impact
of irrational dramas that take a nasty toll everyone who gets in their way.

Being deeply loved by someone gives you strength, while loving someone deeply gives you courage...Lao Tzu

When Am I Going Home From The Nursing Home?

This is one of the predictable dilemmas of aging we all wish we could avoid. We can’t. At some point we run out of aging-in-place options and a parent winds up in a place they never wanted to be, a nursing home. It is a painful transition that is irreversible. So how do you talk to them about this new reality?

Start with the truth. Tell them that you have run out of options. Their health and care issues requires a new level of support. It’s not what either of you wanted, but it is the new starting point that both of you are going to have to use going forward. You wish it wasn’t so, but it is.

Start with control. Make a working list of all of the choices your parent still retains despite being in a nursing home. Can the choose their own food and when they eat? Can they choose their activities and when they leave the facility on outings? Can they choose pictures to hang, a special chair, music, blankets, and when family and friends can visit? The more ares of control you identify and orchestrate for them to manage, the easier it will be for them to come to terms with the transition.
Start with legacy. Make a working list of the people connected to your parent’s life who can “rise to the occasion” and help with the transition. This could include neighbors, co-workers, friends, clergy, and of course family members. Tell them to come ready with a story, pictures, food, and news. We all want to know our lives make a difference, but when we wind up in a nursing home, it doesn’t seem that way anymore. The more connections you mobilize to engage your parent, the easier it will be for them to come to terms with the transition.

Make ample room for tears. The losses of aging break our hearts and all of us need room to grieve openly. It helps us come to terms with the things we cannot change; it makes room for courage and compassion. Let your parent have his or her feelings and let them see yours. It will provide both of you comfort and deepen your partnership for what lies ahead.

Sweet Darkness”

When your eyes are tired
the world is tired also.

When your vision has gone,
no part of the world can find you.

Time to go into the dark
where the night has eyes
to recognize its own.

There you can be sure
you are not beyond love.

The dark will be your home

The night will give you a horizon further than you can see.

You must learn one thing.
The world was made to be free in.

Give up all the other worlds
except the one to which you belong.

Sometimes it takes darkness and the sweet confinement of your aloneness to learn
anything or anyone that does not bring you alive is to small for you.

3. What can I learn from being older?................... “The wiser mind mourns less for what age takes away than what it leaves behind…William Wordsworth........................... Aging leaves in its wake lessons about being older. First and foremost, aging adults come to understand that life is hard for everyone. This transformative insight paves the way for an inclusive empathy through patience and kindness................... Second, aging adults have come far enough to see that life always works out of its own volition, an insight that marks the limits of their control over life’s drama. Aging adults are called to adopt a new perseverance that is less apologetic about being older and more accepting of the opportunity life presents without fanfare or limits each day...

2. What are my choices in being older?

Ever tired. Ever failed. No matter. Try again. Fail again. Fail better...Samuel Becket.. Aging takes its toll. It is easy to become defeated by losses and setbacks. Withdrawal and isolation are common is a society that venerates youth and sees aging as pathology. Despite these emotional and cultural headwinds, being older still offers the opportunity to dance with circumstances. Aging adults are free to set the agenda and see what happens. They are equally free to change their minds, be out of character or reclaim a dream. The same is true for disengagements and amends. It is also possible to do nothing and dance with the gift of each day. Aging changes many things but choice survives it all.

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