Last week we discussed fire-drilling your life-care plan. For myself and my care partner, Brian, a nightmarish “perfect storm” had thrown our professionally designed plan (built by me) into disarray. It called a number of factors into question and shed light on one key reality: a life-care plan must be flexible.
Not that ours wasn’t. But it clearly wasn’t flexible enough. It didn’t factor enough of the what-ifs, whoopsies and oh-shoots. Thankfully, we ended up OK.
And in the end, I was actually happy that our pain served as a teachable moment and example for the many good folks out there (like you and your loved ones) who need a strong and comprehensive life-care plan in later years.
A Life-Care Plan is a Living, Breathing Document
So, first of all, yes, it’s a formal document that breaks down what will be done, when, why and by whom. It factors everything that needs to happen as one navigates toward life’s logical conclusion – in sickness, good health, terminal illness and everything in between. Elements often include:
- Medical care plans
- Financial & legal preparations
- Care partner responsibilities
- Patient advocacy
- Community support & resources
- Spiritual nourishment
- End-of-life care
Sounds rigid and strict, right? Not at all. It may include considerations that are non-negotiable – a certain type of memorial service, including (or not including) hospice, medical and dietary needs, and even musical preferences. But they’re not set in stone.
Needs Change as Time Marches On
Things change with time. Does that mean we stop planning? Does that mean it’s pointless to plan knowing the world will throw wrenches and curveballs? No! If anything, it means we try harder to prepare and factor all the possible scenarios.
We look to the future with lessons from the past while adjusting to needs today.
OK, so in our “perfect storm” a few weeks back, the issue was that I was very sick and needed hospitalization. Our planned care partners who would step in for Brian, who lives with Alzheimer’s and vascular dementia, were unavailable (take note: a VERY COMMON occurrence during the holidays).
But what if I were gone forever? What if you, a brother, a spouse, a dear friend tasked with primary care-partnering duties were gone? Brian and I discuss this frequently. We’re getting older (but not that old, so be careful!). And for all the attention Brian allows for his medical, emotional and psychological realities for dementia awareness and advocacy, my own lesser-publicized medical needs do exist. I’m a human being, no less mortal than any other.
There’s even a very real possibility Brian may outlive me. Our life-care plan factors that. Brian has even compiled a video to his future care partners to know him as a person, as well as his needs and wants, if I’m not there.
Yes, our life-care plan still names me as a primary care partner – and spells out the roles I must serve for him, he for me, and us for each other. But it also names the appropriate people and professional services that would step in if I die or am incapacitated myself.
Let’s say your parents are compiling a life-care plan in their early 50s. Good for them!
They’re in good health, still working, and retirement remains distant. But (I’ve seen this a lot before) the plan they’re building anticipates great health all the way to the grave.
- “Should you have plans for hospice?” “Nope, I’m sure we’ll age and die gracefully and painlessly.”
- “Are there certain medications you’re against taking?” “I don’t think we’ll have to worry about that.”
- “Who will make care decisions if you can’t speak for yourself?” “Ehh, my wife will always be there to set ‘em straight.”
Wishful thinking, at best. Naiveté, at worst. Then comes a diagnosis of Alzheimer’s, cancer, organ failure or something else debilitating and/or terminal. Without planning, you and yours may end up suffering from medical indecision and confusion, financial and legal issues, and poor care outcomes.
At 53 you may still be athletic and spry, playing golf, tennis or even basketball regularly. At 76 your knees likely won’t handle it. By 83 the pain could be worse than you ever imagined. And that’s in good health.
Imagine it worse. Imagine it possible. And then build the support and resources required to meet those needs – medical, financial and more – into your life-care plan. (Helpful hint: Certainly prepare for and expect the absolute best. Just be prepared for when life is unfair. Your loved one may want those meds after all.)
Who would’ve ever expected we’d be living in a Covid hell? Who would’ve anticipated a third year of it? It’s caused so much anger and confusion over close family members – many of whom are primary care partners – visiting and helping their aging relatives. I spent a ton of time teaching families to use Zoom or Facetime just to see their loved ones.
For anyone who made a life-care plan before 2020, Covid was not part of it. Now we know and we’re better for it – anticipating Covid may continue indefinitely or the legit possibility of another pandemic in our global society.
Now we have a nationwide movement to ensure one close family member or friend would be considered an “essential worker” to have direct access to an individual under quarantine mandates – “because isolation kills, too.” Here it’s called Florida Caregivers for Compromise.
We also highly recommend community support groups. That’s your best front line for learning available resources and how others in similar circumstances have met their needs. You’ll meet those experiencing similar realities as you. (But a word of caution: a care partner to a spouse feels emotions and realities far different from one to a parent, sibling or other close family. Each emotional experience is distinct.)
Additionally, here in Pinellas and Pasco counties, we have severe acts of nature that could up-end any solid life-care plan. There are so many elders with limited mobility or mental capacities living in high-rise apartments. Their own homes could become death traps during a prolonged power outage due to a hurricane or tropical storm, when elevator use or care-partner access would be impossible. You may register with Emergency Services to ensure yours or your loved one’s unit is checked and cleared during a weather evacuation, fire or other emergency.
Expect the Unexpected in Your Life-Care Plan
I am a Board-certified Patient Advocate in the State of Florida. I work with care-partner teams to advise and coordinate resources needed for every step of the care journey. These plans may be specific, but they also require flexibility.
Aging individuals and their care partners face important decisions. There are many moving parts to planning care for quality of life and financial protection. You need an expert Patient Advocate who knows each required step for your loved one’s all-around well-being.
Contact me at firstname.lastname@example.org to get started today.