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care-partner team

Who Should Be On Our Care-Partner Team?

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This may just be one of my favorite parts of the life-care planning process: building the care-partner team. You naturally have tons of questions as you and/or a loved one make important preparations. Yes, they’re all equally important! But selecting the care partners that’ll be there for support in good times and bad is the foundation on which a life worth living is built.

What’s a care-partner team? Admittedly, the common vernacular out there today usually favors the term “caregiver(s).” However, most professional circles involved in care for aging and life’s late stages now prefer person-centered care and language. “Care partner” empowers and uplifts both the individual(s) at the center of care and their beloved helpers.

So let’s build that vital network of support. It’s a team effort. Success, health and happiness requires everyone doing their part. 

Building a Care-Partner Team: Who Should We Include?

The great thing is there’s no wrong answer. No one says your spouse has to be a primary care partner – if that’s your choice. No one says your care-partner team must include children or any other close family – if that’s your choice. It certainly can include them – if that’s your choice. And there are a host of other professionals and agencies that may help the team – if that’s your choice.

I am a primary care partner to my life partner, Brian LeBlanc, who lives with Alzheimer’s disease and vascular dementia. That means I’m present in his life daily to offer assistance any way I can. Admittedly, it works out well because I’m a professional life-care planner and Board-certified patient advocate. (But here’s a little secret: you don’t need to be a professional to be an expert care partner guided by love.)

So let’s build your team today.

Circles of Support

Think of a care-partner team as a series of concentric circles. Your loved one sits at the center. They receive care, of course, but under the person-focused care philosophy they’re actually tackling the most important job of directing it. Everyone else surrounding them plays vital and specific roles – non-professional and otherwise – either directly providing love and support or offering guidance. And as an added bonus, everyone on the team both gives and receives care. 

The First Circle

Surrounding your loved one(s) may include family, friends, neighbors and other good people who hold a special place in their heart. Makes sense, right? They’re typically quite close. They may visit frequently or even live in the same residence. So on a day-to-day basis, care-partner tasks may look like business as usual. A spouse may organize medications, plan meals and shop for groceries. A sister may clean and do other household chores. A nephew may walk the dog, balance the checkbook or simply visit for coffee.

Who these people are and the depth of their responsibilities is up to you. It’s helpful to identify a family lead person (FLP), someone with close proximity, availability and a strong familiarity with their daily needs, wants and routines. 

A beloved spouse may desire to see their love and devotion through “’Til death do us part.” But poor health and death comes earlier for some than others. An adult child or sibling may assume a lead role, but there’s no hard-and-fast rule saying the FLP has to actually be family. A neighbor or longtime friend – or even someone they happened to “click with” in the park a few months back – could head the care-partner team.

What else to look for in the first-circle team members? Dependability and accountability. The care-partner team is also there to support the primary care partner. Sure, you’ll seek those with the warmest, most personal relationships. But that alone doesn’t make a great care partner. Even the kindest people may not be ready or available to assist the care required. 

Deeply connected family members can also lack the mental toughness, unbiased lens, personal health, self-awareness and/or financial freedom to serve lead roles. That doesn’t mean they’re useless to the team and individual. They may simply have to take another supporting role in the best interest of your loved one(s).  

Think positive energy and responsibility.

The Second Circle

A well-made life-care plan should next factor community professionals, agencies and support systems. Effective care takes a village, whether an individual lives with a terminal illness or is aging in good health.

The first options are obvious. Most folks have a primary care physician. Getting up in age, most continue to collect more doctors, clinicians and other specialists who help with distinct conditions. You know the types: heart doctors, neurologists, oncologists and endocrinologists to name a few. Their titles and expertise are ever complex. (Say otolaryngologist 10 times fast! I’d rather just say “ear, nose and throat doctor.”) 

But there’s more to aging – and certainly more to terminal illness – than just the specialists that help medical care. You should also be considering end-of-life care options, like hospice and/or palliative care, because the dying process truly demands comfort and resources. And then there are financial and legal preparations, because we must be ready to guide the distribution of assets and the execution of final wishes. 

But wait! There’s more! 

Your loved one may require living transition and placement services to accommodate home health care or move to assisted-living, skilled nursing, rehabilitation, memory care or other senior-living services. Planned or not, these are often vital to maintaining a life worth living and quality of care as health conditions worsen.

They may need real estate assistance to sell and buy property meeting specific needs. Their needs may include more personal care preferences for:

  • Religious services/spiritual counseling
  • Respite care/adult daycare
  • Medicaid/VA planning
  • Home care
  • Comfort care
  • Domestic services (housekeeping, meal delivery and cooking, etc.)
  • A death doula 

An experienced Board-certified patient advocate and life-care planner can coordinate and refer all personal and professional services requested on the care-partner team.

A Board-Certified Patient Advocate Coordinates the Whole Care-Partner Team

Care partners come in all forms. They’re family. They’re friends. They’re professionals. They each serve an important role in a life worth living. Some services may not be required for years, but you should organize resources early for when it’s time to mobilize.

I assist individuals and their care-partner teams every day. And then I come home to fulfill our life-care plan with my life partner/care partner, Brian. If you need help, Caregiver Support and Resources, LLC can help you from beginning to end.

life-care plan

9 Parts of a Great Life-Care Plan

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Planning dominates our lives. That’s a good thing. We plan our careers and retirement. We plan our kids’ upbringing and education. We plan our weekly grocery list. We plan the family trip to Disney World. But, regrettably, most people think about building a great life-care plan too late or not at all.

So what’s a life-care plan? It could be one of the most vital plans you ever make. Not that those mentioned (and countless others) aren’t important. But planning for later in life – for good times and bad; in sickness and in health – puts affairs in order and honors your loved one’s needs and wishes.

We build plans that ensure your loved one maintains control or keeps the decision-making as close as possible. We emphasize being loved; meeting all care needs; having financial security; and creating a life of joy, happiness and comfort until the end … and beyond.

What Should a Life-Care Plan Include?

A well-made life-care plan should include these 9 basic (and not-so-basic) elements. It’s a formal document that breaks down what will be done, when, why and by whom. It factors everything that needs to happen for your loved one as they navigate the uncertainties of advancing years, health conditions, financial and legal realities, and end of life. 

Sounds authoritarian, right? “Do this.” “Do that.” “Don’t do that.” Not exactly. It should be flexible. It should anticipate changing realities, needs and wants over time. Care partners and responsibilities may change. Unanticipated medical diagnoses may arise. Even fortunes can reverse almost overnight.

So let’s build a foundation on these life-care planning principles and leave enough wiggle room for details to change later. 

1. Person-Centered Language & Care

Let’s begin here because words alone can help – or hurt. The language of your life-care plan must be what we call “person-centered” or “person-focused.” Words can empower the care recipient or relegate them to a weakened position of vulnerability and helplessness. 

Don’t believe me? Check it out:

  • Caregiver vs. care partner – Caregiver assigns a position of authority over the individual’s care. Care partner levels the playing field, allowing the individual at the center of care to advocate for their needs and wants as an equal.
  • “Alzheimer’s in 34F” vs. Melissa – Professional care staff have too long referred to individuals by their diagnoses instead of their actual names. But she’s (insert name here) and is a person with a story beyond her medical condition.
  • Patient vs. resident – Another identification misnomer. The word “patient” carries a helpless connotation of someone dependent on a facility or another person for care. A resident simply lives in a location and directs their own care from that “home,” wherever it may be. 

You see, it’s more than just a positive outlook or worldview. Words alone support a more effective and fulfilling person-centered care structure. Person-centered care values the individual as a full and capable member of society, honors their perspective and wishes, evolves alongside changing needs, and supports a life worth living.

2. Care-Partner Team

We build care-partner teams to include individuals chosen by your loved one. Members may consist of family, friends and professionals. The partnership is characterized by mutual cooperation and joint responsibilities. There are opportunities to give (and receive) care by all parties in this partnership:

  • An adult child may pay your loved one’s bills and balance the checkbook.
  • A neighbor may stop by periodically with meals.
  • A brother or sister may assist with bathing and medications.

Your care-partner team may also include both traditional and non-traditional care methods. Some families prefer support in accordance with religion and faith, with a clergy member, lay leader or other religious/spiritual adviser serving a central role. 

3. Patient Advocacy

Moving ahead with the life-care plan, patient advocacy is your one-stop shop for EVERYTHING your loved one and care partners need. As 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. 

Our loved ones face many important decisions. You need an experienced patient advocate who knows each required step for your loved one’s physical, emotional and financial well-being. 

(Which segues nicely to our next points.) 

4. Medical Needs

Good health is a luxury. Some of us are very fortunate. Our loved ones may be in very good health well into their 80s or 90s, only to experience a quick-and-unexpected, life-threatening emergency. They may be diagnosed early with a terminal illness like Alzheimer’s or another type of dementia that for years deteriorates memories and cognitive abilities before your very eyes.

No matter your loved one’s health, we must hope for the best and plan for the worst. Your life-care plan should factor anticipated health and dietary needs in both good and poor health.

5. Financial & Legal Needs

And then we must anticipate who will make legal and financial decisions if your loved one becomes incapacitated. Ideally, they will plan early to have official documentation prepared for “when the time comes.” It’s more than “who gets what” or who “chooses to pull the plug.”

Needs may include:

Get it in writing! Get it done early, when everyone has a cool head about the future.

6. Living Situations

OK, so we all want to age gracefully at home – at least as long as possible. But quite often, medical (and sometimes financial) realities compel us to perhaps downsize to a more manageable home or enter assisted living.

A strong life-care plan spells out where your loved one will reside, when and why. It should have a Plan A and as many contingencies as necessary to factor both anticipated and unforeseen variables. For instance, Plan A may be that your mother and father live at home, but Plan B might include options for Mom entering a specific memory-care facility if/when her dementia takes a turn, while Plan C mobilizes home-care resources for Dad remaining at home before moving to join her in Plan Z.

7. Community Resources

Great care sometimes takes a village. While care begins at home, our home communities often can support our care needs in more ways than one. Community care options, including professional agencies, may perform a variety of services including 

As part of our patient advocacy and life-care planning, we provide referrals to great resources in the Tampa and Clearwater, FL areas to relieve burdens on stressed families.

8. End-of-Life Care

It’s a certainty. We all face a date with the end. And while some of us will be lucky enough to pass in peace, the reality is that death for most people can be a lengthy, uncomfortable process. Even if your loved one is healthy, their body will likely shut down in the end stages. They’ll lose appetite and weight and the organs will begin to shut down – sometimes quite painfully.

That’s why hospice care is a great resource for individuals expected to live six months or less, providing comfort and support at end of life. For those expected to live a bit longer in a debilitating condition, palliative care provides many of the same comfort services. 

9. After Care

And then it’s all over. Whether your loved one passed expectedly in peace and dignity or if they struggled mightily, the death experience can be jarring for everyone involved. Close family and friends understandably feel emptiness and sorrow. Sometimes only counseling can work through such strong emotions.

But there are often other pressing matters including memorial services and other final arrangements, as well as financial and legal responsibilities to fulfill. Alongside our community partners, we provide direct after-care support and referrals for whatever you may need. 

Let’s Build a Life-Care Plan for a Life Worth Living

As a professional life-care planner and a Board-certified Patient Advocate, I assist individuals and their care-partner teams every day. And then I come home to fulfill our life-care plan with my life partner/care partner, Brian. If you need help, Caregiver Support and Resources, LLC can help you from beginning to end.

life-care plan

A Life-Care Plan Must Be Flexible

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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:

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.

Supporting Roles

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.

Medical Needs

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.)

Helpful Resources

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 info@caregiversupportandresources.com to get started today.