Writing on protections against financial abuse

Checking in to let the Tuesdays with Deborah peeps know that I am taking on the challenge of writing about the financial protections that exist within Medicare and within Long Term Care regulations so that our beloved elders and disabled may not be victims of financial abuse.

There is more than one kind of financial abuse. The truly difficult and subtle kind is at the hands of family and friends who use a vulnerable person’s money and other assets for their own benefit.

The more obvious and solvable kinds are usually errors (sometimes not errors) made by health care providers in the excruciatingly complicated landscape of Medicare and regulation.

Yes. The landscape is complicated. The health care providers promise to “get it right.” What informed consumers need to understand is the one, or two, pieces that protect them from even unintentional financial abuse.

It is still complicated. And I am taking on the challenge of elevating it to the language that readers of wisdomandheart.com will be able to understand.

You could call this “meta” blogging” a quick post about the series of posts that are in development. I cannot do it without Tuesdays With Deborah and its virtual community.

Taking a deep breath and hitting the “Publish” button. To me, this is kind of a promise to this community to attempt some English language writing of a topic that is so simple in concept, and so complicated in practice, that most writers….. run away screaming at the tops of their lungs.

Stop Doing It or Start Charging For It

Wow! This empowering, liberating, affirming, respectful, and somewhat scary message dominated part of the March 27 TwD session. Karin Q was the good natured, curious, courageous, authentic, valuable expert whose knowledge base and practices were the subject of discussion. What a gift to the group that we could all hear, and hopefully learn, so much in the “laboratory” discussion around what is near and dear to her heart.

Later in the day, I felt a jolt! I have already established a market rate for the personal advocacy I have done with friends and family for twelve years! Some years ago, a young adult friend was hit by a car and sustained disabling injuries. She had no local family, and so our family simply said, “We are your family.” I was with her every day for a while, then intermittently for a long time. It was gift. It is simply “what we do in the world.”

But there came a time that she said, “You have always said it isn’t about money, but the reality is the responsible party has taken responsibility for this situation and I have received a check. You gave me the gift that you could give when I needed it, and I fear you will not allow me the same privilege.” I said, “My friend, of course I will accept a gift with gratitude. Just as you did. But this was never a marketplace transaction between us.” We did not discuss numbers, she simply wrote a check that represented value. And let’s just say that no one needed to fear getting in trouble with the I.R.S. over excess gift taxes, but….. the gift was sizable.

The details of that year have faded from my memory, but I knew our discussion yesterday applied to me in some way.  All afternoon I wondered, “what would be a market value for my expertise?” To my surprise, these events came back to me. I did the math in my head and called my friend saying, “I am so grateful for a gift you have given me that I never appreciated before right now. So I called you immediately. Remember the events of all those years ago? Well…. because of you, I can say to future clients, ‘my going rate is [a certain amount] per hour.’ ”

I came to TwD hoping to gain what I needed to simply write a blog that others might benefit. And that will happen. Soon. I have developed content and a blog name, acquired a domain name, and I depart today on what I regard on a WordPress learning retreat. I hope to have a blog to share with you next Tuesday.

I never imagined it might be the start of an income stream. It is not an income stream the family needs to keep the lights turned on, but value is value. The words “Stop Doing It or Start Charging” apply to me.

So Uplifted!

My friends in the Tuesdays with Deborah blogspace.

You will not believe me. I hope Deborah Drake might chime in with a comment affirming that this is true. A week or so ago, I posted that I have been invited to develop a training session on one subject that is Really Important in the lives of Our Beloved Elders who live in Long Term Care. That subject is “care planning.” My “customer” and I had scheduled a meeting this past week to go over a “first draft” of materials in advance of “the beta test” training session on March 17. “My customer” and I were in the midst of our meeting, when into our space walked… Deborah Drake.

Look. It was Not THE Moment, in a public space,  for me to say….. “It Is In Deborah’s Blogspace That I Have Found The Confidence To Speak The Truth And Facts About the Care For Our Beloved Elders.”

But the “coincidence” was not lost on me.

The confidence and “voice” I have recently been practicing in Deborah’s group of humans and Deborah’s space for reticent bloggers, are beginning to be recognized and valued and shared by people who actually make a difference in the lives of Real Humans who live in long term care.

The training I will share on March 17, with people who work in the world of Long Term Care Advocacy, will begin to make a difference in the lives of our beloved elders and disabled who live in long term care.

As a writer, I wish to make a difference. I wish to leave the world better than I find it. I am grateful for the safe space of this blogspace and the safe space on Tuesdays, in person with Deborah and others, to keep on keepin’ on.

“If you don’t like it, you can leave.”

Long term care facilities are simply not allowed to communicate this message to residents, and yet it happens all the time. Sometimes it sounds like this: “We have been in this business a long time. We know what works well for residents. You chose this place because of our expertise and your confidence in us. But if you don’t like how we do things here, maybe you would like to try someplace else.”

This is often the response when long term care residents or their loved ones communicate authentic and well-founded concerns about quality of care and quality of life. So residents and their family members “put up with” situations that are far below minimum acceptable standards.

Most long term care residents and their loved ones are under the mistaken impression that “the facility” gets to decide what happens, at what times, for whom, in cookie-cutter uniformity, take it or leave it.

A few times as a young adult, I “moved house” (to use a British expression) for reasons of career and personal preference. It was kind of an ordeal to relocate when I was young, healthy, and strong. Have you ever moved? Do you wish to do it again any time soon?

Imagine how our loved ones in long term care dread the thought of moving! They have already moved one or more times, parting with a lifetime of possessions, and maybe lifelong communities, in order to “downsize” into a long term care setting. These beloved of our community reside in long term care because they are already more or less dependent on others. They fear the words from facility staff,  “If you don’t like how we do things, you can leave.”

Most long term care residents and their loved ones do not know the importance of the numerous and powerful regulations that promote each resident’s right to stay in a long term care facility, and have that facility honor their personal preferences for schedules, meals, daily life, activities, possessions, and care.

Facilities do little to communicate to residents and families just how powerful the voice of the resident, family, and/or legal representative is supposed to be. Facilities do little to communicate to residents that the requirement placed upon facilities is to care for each resident as an individual, honoring and incorporating life-long and changing preferences for what daily life should be like.

“We the People” are so committed to the quality of care and quality of life for residents of long term care that we have caused to be enacted regulations that say something like this (in plain English): if the resident or resident’s representative “doesn’t like something,” the facility is expected to accommodate the resident’s needs and preferences.

Writing to heal my broken heart

I write to heal my broken heart. For many months, I could not stop crying. Every day. Then some of the energy that had gone only into crying seemed to form not only tears, but also words. Lots of words. And I began to write them down. Big compost-like piles of words – authentic, living, healthful, life-giving raw material for the writing I need to do.

Imagine an ancient “balance” scale. On one side is the heartbreak and tears, on the other side is the words. For a long time, the only “weight” I could add to the balance was on the side of heartbreak and tears. Little by little, some “words” came to me, to be placed on the opposite side that “balances” the heartbreak and tears.

The heartbreak and the words are both caused by the lives of our beloved elders who live in long term care: what life is supposed to be like (laws, regulations, and professional standards) contrasted with what life is actually like.

Do you know someone who lives in long term care? Do you love them and want the best for them? Do you sometimes scratch your head thinking, “I thought my loved one was signing up for, and paying for, a better quality of care… a better quality of life than this!”?

To heal my broken heart, I will keep crying, and keep writing, and the balance will gradually tip from “there is more crying than writing” to “there is more writing than crying.” I will try to translate the jargon of bureaucrats into small bytes of plain English.

May we, together, transform the energy from crying into positive change for our beloved elders and disabled in long term care, and into “ripple effects” that will benefit ourselves, our families, and our communities.

The Language of Dignity

“We the People” have written for more than 200 years about the rights of all people. Many of us can “stick up for ourselves,” but we recognize that some people’s rights will be trampled without extra protection. “We the People” know that it is right to look out for the vulnerable – our beloved children, elders, disabled, veterans, and more. We look out for them through our actions and also through the laws and regulations we cause to be implemented. One long term care regulation says:

A facility must care for its residents in a manner and in an environment that promotes maintenance or enhancement of each resident’s quality of life…. and in an environment that maintains or enhances each resident’s dignity and respect in full recognition of his or her individuality.

Take note of the word “dignity.” What comes to your mind when you think of long term care residents and their dignity? (Write your response in a comment, if you wish.)

“Dignity” is a diamond with many facets. One facet is “the language of dignity.”

That language of dignity says, “Mary is a person who uses a wheelchair.”
The language of dignity says, “John is a person who seems to experience some cognitive changes.”

The language of dignity does not say, “Mary is wheelchair bound.”
The language of dignity does not say, “John is demented.”

The language of dignity puts the word “person” first.  Mary is a person. John is a person. Each of these people has many, many attributes. “Wheelchair bound” is not Mary’s identity; “person” is Mary’s identity. “Demented” is not John’s identity; “person” is John’s identity.

“We the people” are committed to the environment of dignity that long term care residents deserve, and we have codified our commitment into laws and regulations. We can also “walk the talk.” As individuals, we can adopt the language of dignity by putting the word “person” first when we talk about residents of long term care. And we can invite others into the process. When I hear anyone say “Mary is wheelchair bound,” I simply repeat, “Mary is a person who uses a wheelchair.”

The language of dignity can replace all labels. Do you ever hear that someone “is homeless….”, “is unemployed…..”, “is an unwed mother”? What do we hear about these people when we use labels? What do we hear differently when we put the word “person” first?

A Eureka! Moment in Writing

I have been working on a writing project – a training session on a subject of great significance for residents of long term care and for people who care about them. The subject is: “the individualized care plan,” known in some places as “the negotiated service agreement.”

My Eureka moment occurred when “the thesis statement” percolated to the top. I felt as though it “rose from the depths” of the swamp of important details in which I have been immersed.

And here is the thesis statement:

Residents of long term care are vulnerable because of age, or illness, or disability, or the need for rehabilitation, and they deserve a high quality of life and a high quality of care. This high quality standard is protected by comprehensive laws and regulations. A “care plan,” called “a service agreement” in some settings, is the instrument that describes, for one resident, how a variety of services will be integrated as providers fulfill their responsibilities to the resident’s care and quality of life. This one instrument – the care plan or service agreement – is, therefore, a useful “starting point” for understanding the landscape of long term care, and the individualized quality of life guaranteed to each resident.

How to evaluate conflicting commitments

Leona posed this question: “How do you answer the call to business and the call to family, especially when the time commitment conflicts?” Check out Leona’s post and find a link to her site at:
I often encounter conflicts between two family commitments, or between a family commitment and a business commitment.

I guess I evaluate each commitment, along these lines:

  • Six months from now, will it make a difference whether or not I was there?
  • Is there someone else who can handle it, given the required time, skill, etc.?
  • Will it interfere with a family’s food and shelter?
  • Will it interfere with relationships?
  • Whose “peace of mind” is at stake, and how greatly?
  • Can it be be done at a different time without much inconvenience?

I have not been a family breadwinner in recent years. My commitments are many, and of the multi-generational, community, and volunteer varieties. If I do not go to some of my commitments, it may not take bread off my table, but it might take bread off the table of a vulnerable person in our community. Most often, though, I am weighing a commitment to “the greatest generation” against a commitment to “the millenials.”

Be Instantly Beautiful, Charming, and Talented

Have you ever wished you were an icon of beauty, charm, and talent? Have you ever wished, even fleetingly, to trade places with the rock star or “red carpet” celebrity?

In a fantasy movie, a magic mirror would supply the breathtaking reflection back to you. Or a magic doorway would beckon you from the mundane “before” into the charismatic “after.”

If there WERE such a doorway – into a place of instant enhancement of beauty, charm, and talent, would you want to pass through it?

Walk through the doorway of any kind of home where our beloved elders live – private homes, apartments, assisted living, or nursing homes – and be reminded that you are beautiful, charming, important, and appreciated…. Simply because you are you and you showed up.

Your every word – many or few – are received as insightful and articulate. Anecdotes from your humdrum life are heard as evidence of charisma and talent. People’s attentive faces tell you that you are beautiful and appreciated.

You will find that you, too, are in the presence of beauty, wisdom, and spirit that simply do not exist in other places. Your life will be genuinely enriched by the shared enhancement – through seeing, speaking, hearing and maybe touching – of beauty, wisdom, and spirit.

Our beloved elders are not “yours,” or “mine,” but “ours” collectively, bound by our shared humanity, not by exclusive blood relationships or personal friendships.

Some years ago we accepted (more or less) the truth that it takes a village to raise our children. Likewise, it takes a village to cherish and revere our elders. And it starts with stepping through a doorway that leads into your own, and others’, greater beauty, charm, talent, and wisdom.

My Last Raw Nerve

I just got back from GriefShare with my Dad.  It’s something we do together because he wouldn’t go alone – and he needs to go – he was suicidal at the loss of his life’s partner of 62 years.  I need to go too – but not with him.  With him, I’m still a caregiver.  Without him I get to be the daughter who lost her mother and now has to take on more and more of a role of parent caregiver / caretaker.  He would be mortified to know he’s becoming a burden, but he is, and that’s what happens to those who are approaching the end of the Circle of Life. 

Tonight we sat at different tables and shared with different people.  Tonight I got to be the daughter: the one who is struggling to not be a substitute Mom to her Dad, to not rescue, but to be there when he really needs me, to be angry at Mom for dying and leaving me this responsibility.  AND – No, it’s not a responsibility I can share with sisters because one is on heavy duty psychotropic medications and the other lives on the East Coast with an adult son who is paranoid schizophrenic.  Dad can’t handle his money alone, is a sucker for every salesperson who calls, doesn’t remember to eat, doesn’t remember to take his evening meds, loves to drive and gets lost, and lives on his own, for now.  He was a hard worker all his life and can’t afford to live in a Retirement Center.

Tonight it’s all falling on me and I want to scream, “When do I get to live my life?” knowing the answer is that THIS is my life – for now.  This too shall pass and like I’m glad I took the time off from my business to care for Mom as she was dying, looking into the future I’ll be glad I took care of Dad someday.  However, for today, I wish I could hand him off to someone else for awhile.  Tonight, I feel like my last raw nerve has been scrapped.  Time for bed!