What is long-distance caregiving? And who is a long-distance caregiver?
We read and hear this term, but what does it really mean? Aside from being hard and scary, what else is significant?
As the term suggests, it is: providing care for another, locating care and hiring care, and managing care – all from a distance.
This is a big topic and an important issue. It has bearing on you, the caregiver, the care recipient, your family unit, our employers, and even our U.S. labor market.
Let’s begin with you and me. Does this kind of information get your attention:
$8,728 a year. No vacations. No retirement savings. 23 hours a week and up. Some call this the not-so-secret code of the long-distance caregiver. Studies have shown
- $8,728 is the average annual out-of-pocket cost;
- 47% of caregivers stopped taking vacations to make up for caregiving costs and a lack of extra time;
- 35% stopped saving for retirement; and
- 23 hours, up to 41 hours a week, are spent on providing care.
To really examine this issue, we must consider: Distance, the numbers and statistics, the time spent, and the cost considerations.
The NIH defines long distance as “living an hour or more away from a person who needs care.” Long-distance caregivers are people “who provide care for a family member that resides an average of 450 miles away” adds the National Alliance for Caregiving and AARP.
According to the National Alliance for Caregiving, around 15 percent of family caregivers live more than an hour away from their care recipient. This represents approximately 5 million caregivers. Of the 34 million Americans who care for older family members, roughly 15 percent are long-distance caregivers, bringing our numbers in excess of 5.1 million and growing as our society changes and becomes more mobile. As a society, we are increasingly far flung from our loved ones.
Just about every study I review reports between 21 and 40 hours per week spent in caregiving. How do we fit this in? If you had to begin inserting that into your life and work schedule today, just how would you go about doing that? (I have some ideas for you coming up).
- Most caregivers spend some of their own money on care-related expenses for their loved ones, but AARP figures from 2016 found that long-distance caregivers have the highest annual expenses, averaging around $12,000 each year. In addition to travel costs, those living far from their loved ones often have to use paid help (41 percent). It’s not surprising that these hefty costs cause financial strain for many long-distance caregivers.
- There’s also an emotional cost. The National Alliance for Caregiving and AARP have found in their research that long-distance caregivers are more likely to report emotional distress (47 percent) as compared to caregivers who are either living with their care recipient (43 percent) or who live less than one hour away (28 percent). Seems all caregivers are stressed but the studies are indicating that long-distance caregivers are at the top of the stress list.
We also have employment cost considerations: yours and your employers.
You/ We as Employees
- In regards to general caregiving, an AARP survey found that 59% of caregivers work either part-time or full-time. That 59 % who work reported acute work strains due to caregiving, such as needing to take time off or adjust their hours. This same % group also averaged almost double the amount of out-of-pocket caregiving expenses than those caregivers with fewer work-related issues.
- Research from the American Time Use Survey indicated that caregiving (overall caregiving) was associated with a 40% increase in workplace absences in the months after a caregiving experience started. That is significant. If you are one of them. That cuts into your budget and perhaps your lifestyle. You are not alone.
- If you are an employer, there are monetary considerations of productivity and absenteeism vs. presenteeism. If you’re a terrific employer or one who wishes to retain good talent, then you are concerned about keeping your employees focused and on the job and helping to remove some of the stress.
- Long-distance caregiving has a substantial financial impact on employers. According to the MetLife Study of Working Caregivers and Employer Health Costs, the cost of informal caregiving in terms of lost productivity to U.S. businesses is between $17.1 billion and $33 billion each year. This cost is a result of employee absenteeism, new employee onboarding, and workday adjustments that were all a result of an employee leaving a position due to their caregiving needs.
A note about Language – I just used a term that I abhor.
To know me is to know how much I focus on (OK, harp on) language relative to healthcare and aging. When you are learning about caregiving for loved ones, you may see or hear a term called “Informal caregiving.” That term burns me. The term “informal caregiving” diminishes the need, the role, and the task. To me, it insults the family, the friend, the well-meaning neighbor, or volunteer. To sum it up in my book, please also allow me to echo a retort I once heard that seems to say it best: “There is nothing informal about me toileting my father.” (‘Nuff said).
Now we have it: definition, drawbacks, costs… Let’s bring it down to the family level now: you and the person you are concerned with.
How do you determine and meet the needs for long-distance caregiving? You’re up, you’re on, either directly or your gut is beginning to tell you it’s time or something’s amiss. Often that means eldercare.
Remember Distance, numbers, time, and costs? Those kinds of numbers and statistics mentioned earlier tell me there are likely common challenges shared among this demographic. It also signals me that there are probably some solutions in common also.
Let’s look at some practicalities, commonalities and solution.
This stuff may be new to you or could mean change for you. For example, it may become hard to gauge stuff over the phone or Facetime; how do you get a real read on what is going on (or not going on)?
Patient Advocacy is one of those solutions. So can be Care Management.
We, Patient Advocates, get lots of calls, this topic of long-distance caregiving is a familiar one to us, as it is with medical providers, attorneys, financial professionals, and other care managers. We get it.
“I’m in Omaha, and my loved one is currently hospitalized in Florida.”
“My parents still live where I grew up, and I reside states away now for work.”
“I am the breadwinner and working to pay for care – I cannot afford to jeopardize my job or my benefits.”
And so on. It’s an echoing refrain. We also encounter statements like
We’re moving Mom here.
We NEED to move Mom, we can tell she is changing, and we fear for her safety.
I am on West Coast, Dad’s on East Coast. Kids are all over, but no one is near. Where do we begin?
I’m here to assure you that it is all typical nowadays and is all doable. Caring, locating care, hiring care, and managing care can be done from a distance.
Sometimes it is a matter of having better eyes on the situation.
This can be a dicey area if you are a FUDGE-eater (Fear, Uncertainty, Doubt, Guilt, and Exhaustion).
On the elder or patient side – All is rosy. I had one patient falling and was bruised, but she’d not tell her son.
“I can tell you that if I am independent and stubborn or embarrassed that I fell and I am bruised > well, I’m not gonna offer that tidbit up if I am certain that you are not going to see me.”
There was the gnawing, nagging question on the Adult Child or caregiver side. How do we know our loved one is really OK? How do we really know what is going on (or not going on)?
I made up a word for the “How do we really know, it is GNOW. Y’all may be aware that I like to make up words when I feel like they do a good or better job of describing something, so for this instance, I made up GNOW, G-N-O-W, a mix of “I know, and something is GAWING at me: G-N-O-W.
So, how do we really GNOW our loved ones are alright?
If we return to the person with the fall-and-bruise that they’d like to keep quiet, they may be fearful with runaway thoughts, like “if I tell you you’ll put me in a home”, or “I will be a burden to you”.
That’s an extreme example, so how about something more innocent?
If I am too tired to cook dinner or shop, or if I lack transportation to get groceries, my dinner will be a bowl of cereal.
Heck, this happens to me now! If my nutrition suffers, so will my physical and cognitive health.
What if there are problems with medication management, what if I start having problems with remembering and confusing the dosages or starting a new medication while stopping another? What if it is hard to get them from the pharmacy? What f I mix up or abuse my meds and become dizzy and have a fall with injury, or am undiscovered? We can all imagine the cascade of less-than-positive healthcare events that kind of need sets off.
Since we love those far-flung folks, we begin to wonder:
How do we line up reliable providers and help?
Where do we begin to determine what is needed?
How we will find it or choose it or pay for it?
I can honestly say to you this is one of the reasons I am here. It’s one of the reasons I do what I do.
If I can prevent or help to lessen the “ARGH!”, the uncertainty and the overwhelm involved with caring for a loved one, then that is what I am compelled to do. I’ve felt my own fair share of ARGH, I didn’t like being in it, and it’s a large part of why I became a Patient Advocate.
Long-distance caregiving is not impossible. We just go about things in a different way. There are many fine folks and professionals designed to assist. Nowadays, we all enjoy better tools are better than we have ever had before to ensure we can do this.
Of major impact on caregiving today is technology. Our techno-tools are better, I dare say the pandemic pried open that lid a little further for us consumers. We have the telephone and airlines, I suppose. (Telephones used to be all we had to go on, that and helpful neighbors, or once in a while, a concerned physician or clergy member).
Now we have Zoom, Facetime, and texting. And Alexa and Echo Dots. Ring-style doorbells and other cams inside and outside the home. We are armed with access to patient portals, so we may communicate with our providers. We have Rideshares, meal delivery, grocery delivery, and automated banking and billpaying.
We are doing the same functions as the age-old extended family or band of loved ones who would historically be taking care of or overseeing. It’s just that we are doing it differently, and we have to learn and use new tools to “Git ’er Done”.
But what if this Long Distance Caregiving is all new to you? Or sudden or totally unexpected? Whether you have carefully laid plans, have your legal ducks in a row, or no plans have been made, there is help for you in professionals like myself. In fact, entire industries are being born to further support caregiving, and their services will fit nicely into the needs of long-distance caregiving.
And when it comes to eldercare or medical concerns, or Solo Aging. May I just say that this Patient Advocate is well-qualified to consult? I can educate (How Stuff Works) or advise (how I and the others that have gone before you have managed it. I can help you know how to find out more and tap into resources that will help you. I will listen and guide with heart and savvy and journey alongside.
I will stop now lest this begins to sound too much like self-promotion. It is meant to point out to you that there are ways and means at your disposal. And you have the power to make some very good decisions once armed with education and information. To illustrate, let me share one of my favorite sayings (because this is absolutely true):
We can all have a say in how things will go and where we’ll end up.
Planning, forethought, educating, circumventing… It’s all power-full! (Like that, that “-full”? Yep).
To get “WINS” in the long-distance caregiving category, the trick is to Create a Plan and Build Your Team. I can consult, and we can create a customized, specific plan based on unique needs, budgets and scenarios. You may execute it and manage it or hire someone to manage the plan.
You call the shots. You do what is best for you or the folks you love. You never have to do what I say, you remain in the driver’s seat.
You can get help to Build the Team and build a plan from a professional who does that “all day, every day”, and for years. They’ll know what to put in your plan. Consider them a travel agent or sort (“Here’s how you get to, and have a great stay in Tahiti.”).
A healthcare or eldercare travel agent is but one concept. Last week a lady called me her Pace Car, neat! I’ve also been referred to as a Puzzlemeister and “The Explainer.” A patient once introduced me as her “Professional Relative,” and it stuck.
In my own life, the shoe’s on the other foot now! I will soon become a long-distance caregiver (Enter some FUDGE; Fear Uncertainty, Double Guilt, and Exhaustion. Especially the Uncertainty. Perhaps some Guilt). I am about to move farther away from many of the folks I love. I will be a long-distance caregiver, and we have Built a Team.
I may need to call upon one of my own in the future. I, too, must Build a Team and Create a Plan, be ready to work it or enable someone else to manage it.
As I remain a long-distance caregiver, what will make it OK in my book? Here are some recommendations.
What makes it OK for me and for many will be:
- A good Team can help create a solid Plan.
- Communication will be the key, the strength indicator. Things will go about as well as the communication goes.
- Someone with some experience and savvy can anticipate pitfalls and head them off at the pass. Or someone who can recognize change, challenges and mitigate issues before things blow up.
- For many families or groups, it is equal distribution of duties (Folks may never have considered equity, the emotions, or the How To’s: EX. Joanie, the banker is a natural fit for handling finances and automating banking and bill-paying. John, on the other coast, can perform research and flies in to provide respite for Janice, who is local to Dad, the closest/front line of the family. (Can you tell we are Building a Team here, creating a Plan?).
- Let’s eliminate the GNOW (G-N-O-W) and respite it with KNOW (K-N-O-W).
- Consider for your Team someone to act as a point person.
I LOVE this stuff. Working with me brings order and peace of mind. It brings honor to you (and to me), now and in the rearview mirror.
And so I will ask you, directly today, to consider consulting with me about your care and planning or that of someone you love. I will help you understand your options and help you Build your Team.
I can help you figure all this out. Tap my brain and experience. I’d be honored to help.
Acting as a long-distance caregiver isn’t easy, but by getting organized, utilizing available resources and technology, and focusing on the positive, you can still do a world of good for a loved one, even from far away.
With some help, your burden can be eased while your loved one benefits from improved health and more efficient, less costly care.
My message today has been about Building a Team.
While care coordination frequently reduces costs through better, more efficient use of health services, it also improves the quality of life for both the caregiver and their loved one, which leads to better health outcomes. Care coordination saves money and reduces hospitalizations. I don’t know anyone who wants to spend more time in the hospital.
Build and use your Team. Using the knowledge, time, and talents of the team members, with the goal of improved health outcomes for the loved one, lower overall costs, support for your loved one, and far less stress for the long-distance caregiver
Are you, or someone you know, a long-distance caregiver? I can help you find and build your team, and we can circle the loved one with care. Contact me today to set up your Complimentary Consultation. nancyruffner.com 919.628.4428