Being the primary care partner for a person living with dementia is tough.
Beyond the grief of watching a person you love go through an unforgiving disease process, you’ve got the practical matter of another grown person’s life to manage, as well as your own.
That level of responsibility is overwhelming enough, but what happens when you go down? When you’re not feeling well, or when something unexpected happens, who steps up to take over?
I’ve been encouraging families to consider this question for years. The Girl Scout in me comes out, urging people to have a backup plan in case of emergency. I’ve also seen the need for a backup plan first hand.
My mom was walking her dog one night and tripped on a torn-up chunk of sidewalk. She shattered her shoulder, requiring surgery with pins. This was followed by extensive physical therapy. At the same time, she was taking care of her mom, who was battling Alzheimer’s disease and in the last five years of her life. She didn’t have a backup plan ready to go.
Our tendency is to think the worst has already happened when we have a loved one who requires care 24/7. In reality, the worst-case scenario is really when something unexpected happens to the primary care partner and there’s no one at the ready to step in and provide necessary care. If you are a caregiver, you will understand this dilemma.
Respite care from an in-home care agency was an option, but my mother knew that a change in environment would be very confusing at that point. Luckily, Mom’s good friend Betty, who is also a professional care partner, was between assignments and able to come stay at my parents’ and provide care for my grandma. But what if Betty hadn’t been available?
You’d think the lesson to be prepared for unforeseen circumstances would’ve been learned, right? Not so much! Just a couple of years later, my dad’s father died unexpectedly. The funeral would be two hours away. Here we were again, needing care and without anyone lined up and ready to go.
We got lucky again that time thanks to a nurse on my staff who agreed to come do private duty for the day. But what do you do when you don’t come from a family of professionals, with connections you can call at the last minute?
The answer is to create a backup plan, of course! I get that no one likes to think in worst-case scenario terms. So like to think of it like this. Make a plan, then put it away in a drawer. You don’t have to think about it again unless you need it. What-ifs won’t be taking up unnecessary space in your brain in the meantime.
I sincerely hope nothing as dramatic as a shattered shoulder or death in the family happens to you. But here’s another twist to consider. What if you just plain don’t feel good one day? As I write this, I have a nasty cold. My only “dependents” are my private clients and 3 little dogs.
It is possible for me to exchange email with my clients so they don’t have to sit through 10 sneezes in a row during a phone call or video conference. My dogs are small enough to run around the backyard, without needing walks as well. I’m lucky to have an easy backup plan.
So, what about your backup plan? Do you have one? Is it time to build one? Here’s how to get started if you’re without a plan, and some things to consider if you’ve got one.
Make a list of all the people in your life you can reasonably expect to come through for you. This isn’t a list of all the people you think should come through for you, but people who will.
Write out their contact information next to their names, then make the list easy to find. I advise my clients to use a neon-green binder for important documents like this so it can be stuck on a bookshelf and forgotten, but also easy to spot when needed.
Now add some professionals to your list, too. This doesn’t mean you have to use them right now, but it’s good to have a short list when you need it, rather than start searching from scratch during a crisis.
Don’t wait for an emergency. Give your team a workout now so you know if there are kinks in the system that need to be worked out. Another bonus to using respite care now is that your loved one can get comfortable with the idea of spending time with others, apart from you.
The first time you bow out may be because you physically can’t handle being a care partner and have been brought to your knees by your current health conditions. But for next time, plan a little escape, a little me-time. Spend some time savoring the possibilities of what you’ll do. Enjoy the planning process.
And remember, you are every bit as important as your loved one!
Have you put together a caregiver backup plan? Or do you have a cautionary tale to share? Share your experience in the comments below so we can continue the discussion.