Recently, a high school friend reached out to me. They were stressing out because their mom had a fall, had been in short-term rehab, and was getting ready to be discharged. My friend was not ready. Their mom’s house was not equipped to accommodate the use of a walker, which would be necessary for the foreseeable future, plus they were also dealing with mom’s cancer treatment, insurance, and so much more. My friend had already reduced their workload to 8 hours a week for several months and needed to return to full time, but did not feel comfortable doing so with their mom in such a precarious situation. After going from website to website, talking to case managers, social workers, and goodness knows how many advisors, they were stuck. The problem was not a lack of resources; it was figuring out which ones fit their situation at a given time.
So many lists
So little energy
This was not the only time I have heard this, and it was something I experienced myself caring for my mom, who had a rare illness, for decades. Caregivers ask for help because they are overwhelmed by the emotional, physical, and financial exhaustion of caregiving. They reach out for help, wanting someone to listen to their circumstances and tell them what to do next.
What they usually get instead is some pamphlets, websites, and lists of potential resources with too many options to sort through. They have to decide which ones to reach out to first, then work to get in touch, which usually gets them added to a database that will produce more cold sales calls and emails, and then find an answer that actually fits their needs right now.
Sometimes they find an advisor, someone who is supposed to help them through this process, only to have that advisor give them resources that do not apply to their loved one, or for which their loved one doesn’t qualify. Then there are the referral services that are free to families but are paid by the providers they refer to, so the recommendation may not be neutral.
This last scenario happened to me. I was told that the only safe place for my mom was XYZ by one person, and then the next person would say, “Absolutely not. You should put her in ABC!” I was told to sell her house by one person and NOT sell her house by another. Only after doing more research did I realize that each person stood to earn a referral fee for recommending a specific place or agent. A referral that earns the advisor a fee isn’t necessarily a bad referral, but it makes the advisor’s motivation harder to judge. Full disclosure and transparency are vital in these cases to avoid eroding the trust caregivers need to have in the resources they choose for their families.
But giving a step-by-step list doesn’t always work either. Yes, it is clear, easy to share, and what caregivers want from advisors, consultants, and agencies, but real situations rarely fit into a 1-2-3 box. A caregiver gets a definitive set of instructions, and when their situation doesn’t fit those steps, they feel inept. Again, this was a constant occurrence for my mom and me. We would be referred to resources that were specifically designed for people with cognitive decline, but my mom was cognitively fine. She would be given a list of mobility tools only to find out she didn’t have the strength to use them. Frequently, we were referred to facilities for her short-term rehab stays after each fall, only to be rejected because she was medically complicated. This type of back-and-forth, thinking you have the answers only to find out you don’t, results in frustration and more anxiety, not less. They are frustrated and disheartened, and frankly can’t take much more.
I am not here to badmouth organizations and companies that are trying to help caregivers by creating these lists and sharing resources. I could be considered one of these businesses myself! Full disclosure: I also serve on the board of ElderSource, my area agency on aging. They share lists and resources too, but we have trained specialists who listen to your situation, help you decide what to do next, and what is actually available for your family. Not every area agency on aging works this way, but it’s worth calling yours and asking how they help.
But between my own caregiving experience and working closely with caregivers over the last few years, I am realizing that we are collectively trying to work within a system that does not work for most caregivers. This system assumes that if a caregiver just has the list or knows the resources, they will have the time, energy, and a clear path to pursue answers to their questions. Most caregivers don’t. It’s a system designed around the person receiving care, not the person doing the caring. Again, this is neither the organizations’ nor the caregivers’ fault.
When I decided to start discussing care technology and sharing the tools available with caregivers, I was excited about the possibilities, but I quickly saw that I could, if I wasn’t careful, get sucked into a pattern of making more noise for caregivers without really helping. I am a work in progress on this and try to share resources on my Trusted Care Technology site that solve real problems. Even then, I am careful to say who a resource is for and who it is not for. The same is true when I discuss how to choose, if to choose, and when to choose a place for a loved one to stay. I will not say “this is how you choose a facility,” “this is how to take the car keys away,” or “this is the one app that will help you.”
Admittedly, this is frustrating for many caregivers. It frustrates me too, but I would be dishonest if I claimed to know what is right for someone else’s situation. Each caregiving circumstance is so different. Every family has its own dynamics and its own emotional and financial limits, and what is available to one may not be an option for another. A loved one rarely has just one problem to solve, and every variable adds more complexity to the solution.
I spoke with a caregiver just yesterday and reminded them that often there isn’t just one first step. Usually, there are several places to start, and none of them are wrong. They are just different. When I talk with a caregiver, I walk them through each option and listen to how they feel about each one. Ultimately, it’s not about picking the right one; it’s about finding one you can feasibly do, that makes you feel more at peace inside, and that lets you know you can always make a different decision. Yes, that decision will come with a million little decisions around it, but it doesn’t mean you made the wrong first choice. We are all doing the best we can with what we know and what we have right now.
I wish I could give you easy answers, but caregiving isn’t easy, and the answers are rarely simple and structured. If you are in the weeds and are worried about making the right choice, that worry shows how much you care. There is rarely a wrong first step. The first step doesn’t have to be perfect. If you are struggling with finding a next step in your caregiving circumstances and want someone to listen, contact me. You are not alone.
