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I will bet many of you will resonate with what I am covering today: as family members or loved ones, as professionals or neighbors, or as a concerned leader within your faith congregation.
I could have said what I am about to say 10 years, 15 years ago. I could have cited it 2 years ago, last month, or even last week. In my heart of hearts, I know that I will soon find myself citing it yet again.
People have the right to make poor decisions.
This statement, this fact, to me, is one of the saddest elements in healthcare that I encounter. Today I am going to speak to that and follow up with our power, and what we can do when we are confronted by this sad fact.
I cannot tell you how many times a year or a month that a concerned loved one, adult child, neighbor, or faith leader calls me with a scenario that portrays this sad fact. As a professional in eldercare, I know enough to realize that this may not end well for many.
My antennae go up for the patient and the medical and psychosocial dynamics at play.
As a professional, I am charged with seeing all perspectives in order to skillfully enter the dynamics and help (a single party or a group) begin to avoid risk and head for remedy.
It is, in clinical terms, a toughie.
Here is a scenario, one that is all too typical and demonstrative of this fact. There’s injury plus the fears, the logic, the well-meaning, and all the roller coaster of emotions on top of it.
“Michelle” – An adult child contacts me with concerns about the health and housing situation with her parents, ages 89 and 92. She may have one or two siblings, one local and one out of state. While they are said to share varying degrees of concern for and responsibility of their elderly parents, Michelle has picked up the phone. She speaks fondly of her parents, who are caregivers for each other. Their mother has fallen on more than one occasion, and the EMS called multiple times. The falls have resulted in some bruises and once a cut to the head that resulted in her transport to the ER. With her parents living in a rural area, most times, the EMS simply arrives to help mom get up. (We know the father cannot perform this action safely). Mom promises to be very careful. From what she knows, Michelle’s parents have few plans in place, some legal planning, but no real “Team” assembled or “Circle of Care” has been built. With her parent’s rural lifestyle, few eyes are on them, less now that they no longer go out to church but rather view it on tv. No, they have not really told their doctor. There really has been no look ahead, no planning for “If This Then That.” If there has been no look ahead, then we can presume there has been no conversation. Michelle, her siblings, and no doubt their parents are very cognizant of a ticking time bomb.
What to do, when everyone is aware of a ticking time bomb?
Plenty of folks approach me about what to do. What can I do about this, they ask of me. What can an adult child, loved one, or neighbor do? There is in-your-face vulnerability manifesting before everyone.
Sometimes the strategy or plan becomes waiting until there is a fall or an injury resulting in a trip to a hospital. Transport and further evaluation can lead to further assessment or create a time to garner direction from a medical professional. Where there was no buy-in before, there might be now. Sometimes these situations are scary or serious enough for a reticent healthcare agent or proxy to step into their role or to bring a family or unit together with or on behalf of the patient.
Disclaimer, of sorts: you may notice that my use of the term “family” is often quickly followed by “loved ones”. Many folks have no family. Plenty of Solo Agers have no built-in folks there at the ready to be responders or caregivers. We have no Michelle. The good news is that we Solo Agers (I am one) get to choose our family, but we all have similar occasions when we will need our Team (one that we assembled, built, and developed relationships with and with whom we have shared our wishes).
Times like Michelle and her family are encountering can also be pain-full, and fear-full (‘scuse my spelling, but it seems more apt than the regular way). We all see and hear the ticking time bomb, and the elephant in the room trumpets as it obscures our view of solution. Whenever we find ourselves waiting for that other shoe to fall, someone ends up worse off. And with fewer options. With greater complication and expense. And absolutely with less power.
We can all have a say about how things will go and where we’ll end up.
In these kinds of situations, I love the phrase: “We can all have a say about how things will go and where we’ll end up. Not only is it simple, it is true. I want to live here. Hear me when I repeat it as I counsel and teach and speak.
I am all about the empowering and the importance of looking ahead. Looking ahead and learning from the past (you know, to help others coming along behind us).
People change when they have to and not when they get to.
Many times, change does not happen until there is pain. Pants on fire. So often, people change when they have to and not when they get to. Me, I want to use what I know to help others enter into difficult change. Sometimes it’s my being a consultant or coach or sounding board. I have to confess that so many times I want desperately to place a firm hand on each of someone’s shoulders and stare them squarely in the eye, telling them they must consider what I’m saying now if they want things to go better. Do we want things to go worse?
I am in the business of looking ahead on your behalf. I am also in the business of looking back and learning from it. I have seen my share of debacle and felt it, too. Sometimes in my conversations or marketing, I will talk about “Bringing the 500 families” I have helped along with me to help you. Of those 500 families, I will bet 300 called me when their pants were on fire, 150 when they began noticing some change, and 50 when there was nothing left to do that would help. People delay, and there comes a time when no actions remain that could positively improve the outcome. The patient ends up with worsened situations, fewer options, and little remaining power in the situation. Things were definitely more costly. Perhaps you can find a negative motivator in all that, however, I like to move toward action and solution.
My own family has been among those 500 families. There had been planning however, we still were caught up in the pitfalls, missed opportunities, the missed handoffs of healthcare. I wanted to FIX everything. When the changes came and the struggles, too, I remember that feeling in the pit of my stomach. I would not wish this stuff on anyone, I recall thinking to myself. As we plowed through the HOW and gained information that could benefit the outcomes, I made it my business to do my best to never have anyone feel the way I had felt. I have a clinical term for it. The term is “ARRGGHH!!”
Out of the problem and into the solution
A large part of my message today is that you do have power. We can step out of the problem and into the solution. Y’all know that is where Nancy prefers to live. A great deal of relief -and motivation- can be found by being in action, by pursuing solution. We don’t have to let fear rule because there are many people who wish to make themselves available to assist.
Education is key, yes, but so is communication. We must enable it. Those of you who know me that I am continually acknowledging the importance of talking. I may quote catchy phrases (like the website “Talk Early, Talk Often”) because I am trying to turn your head. I lecture on Crafty Lead-Ins To Difficult Conversations or blog about F.U.D.G.E, the emotions of caregiving: Fear, Uncertainty, Doubt, Guilt, and Exhaustion. I have written about them each and all (visit my blogs) and about how we begin to climb out lest they keep us in quagmire.
People have the right to make poor decisions. Watching is agonizing, and my heart goes out to the loved ones or concerned parties calling me. I suppose I’ve seen it enough to become a bit resigned to the fact that it does occur, and I will soon get another call, a Michelle by another name. Rather than become disillusioned by it, I can gather the 500 families and strengthen my resolve to be here for the people who need me.
“Have The Conversation” (that was my tagline between 2013-2017 or so).
Have the Conversation. In fact, have lots of conversations: to become used to them, to get used to yourself and others on the team inside one. Normalize conversations, check-ins, and divvy up the To Do’s.
Get more information – about the situation, options, who could possibly do what
Keep having conversations – They do become more comfortable with repetition, and you can build in this next one:
Add celebration – Even if you only have arrived and assembled for the first meeting that is a reason to collect a “W” to declare a WIN. Or that you made it through the first one. Or that they are becoming easier or creating unification and perhaps growing a sense of purpose.
Result: your meetings in a Living Plan. “Plan your work, work your plan,” as they say. Report back, alter the Plan to suit the in-motion activity. Move the marker.
The marker. That brings to mind a great sports analogy, and right now, this one seems fitting:
The goal is not about crossing the goal line. The goal is to move the chain incrementally up the field until you do.
We must look at the whole game. Expect to use offense, defense, time outs, and half times, good for adjustments. There will be distractions, delay of game, flags thrown, or inclement weather. I bet there will be someone up in the press box seeing the big picture and coaching those on the team and on the sidelines. Teammates will be nearby, warming up to ready for entry into the game. There will be some great plays, and there will be fumbles. A play is made, the chains come out, and we advance the ball up the field, sometimes earning a first down or completing that yards-long pass.
People do have the right to make poor decisions. It is hard to watch, heck, it’s hard to be the one inside the decision. It’s hard to watch, knowing that the options and choices of today may not be there tomorrow. As you and yours make your way up the field, there is much that you and I can do to move that ball for yourself or someone you love.
Let me know if I can help.
Nancy Ruffner is a consulting Patient Advocate, educator and speaker who consults with clients regarding advocacy, healthcare navigation, eldercare matters and successful aging. Set your Complimentary Consultation toward engagement today – 919.628.4428 nancyruffner.com