During a naïve moment in the fall of 2016, I remember saying to my sister, "I’ve been talking to so many of my friends who are struggling with their parents’ ailments and I realized that’s one thing that won’t be part of our experience since our parents died when we were young." At the time, I had a narrow view of what defines a family caregiver and how someone steps into that role. A few short months later, my spry, healthy, beloved aunt had a stroke and then passed away after what seemed like the longest 80 days of our lives. My uncle who has Parkinson’s was left without his love and his minute-to-minute caregiver. My sister and I stepped in and I was the local one on the ground.
While also mourning, my first reaction to my new role was an unattractive combination of resentment and panic. I had two children, a new-ish business that I was still figuring out and many financial responsibilities. Plus, I wanted to do the best by my uncle and I truly had no clue how to manage his disease. The learning curve would be steep.
How was I going to take this on?
How was I going to do it at the level to which my aunt would approve?
How was I going to still give my kids what they needed?
How was I going to give my uncle what he needed with the little time I had?
Then I came out of my tizzy and realized I’ve accomplished amazing things in my life and can absolutely do this.
It may be messy.
The business will grow at a slower pace.
The kids will be bribed with ice cream to come on caregiving visits.
But this IS possible.
Here are the things I did to move out of overwhelm and into a rhythm that is working for everyone involved.
1. Get realistic about what you can do
In the period after my aunt’s stroke, I was visiting twice a week at least, which meant I was taking one or more week days off to be with my aunt and uncle. This took a serious toll on my business and I knew it wasn’t sustainable long-term. Also, my kids were beginning to truly miss me on weekends and if we brought them along, they became jealous of how much time I was spending with my uncle instead of with them. After my aunt passed, I knew I would need to be in touch more on the phone rather than being in-person as often. I still often feel pangs of guilt if I haven’t visited in a few weeks, but I know I’m doing the best I can.
2. Call in the experts
We knew my uncle would need home care as soon as my aunt had her stroke, so we made sure he was well cared for with the right people in place. Then, we hired a Geriatric Care Manager to help us coordinate and communicate with all of the doctors and the home care agency. It was a huge relief to know that we had someone on our team who knew all of the players, had done all of this work before and was one point of contact for everyone involved. While at first I wasn’t sure about adding this expense, I quickly realized that 1) she did a better and faster job of this work than I could ever do, so it was not as costly as I expected and 2) we could go back to being nieces and family support which is what everyone wanted. Now, since we’re also in the process of downsizing his home, we brought in a professional organizing team for reinforcements. I’m still on the ground doing a lot of work, but it’s helpful to know I don’t need to completely exhaust myself during this process and can get the help I need.
3. Ask for help
If you’re that person who is always helping others, now is the time when it’s OK to ask for help. My wonderful neighbors, friends and family have been a tremendous help in watching my kids—and now the puppy—while I take care of the things I need to do for my uncle. Also, it’s OK for you not to do it all. Ask other family members or friends of the family where they may be able to pitch in. They may not be able to take anything on—and that’s OK—but you won’t know unless you ask.
4. Put your (oxygen) mask on first
When you’re navigating everyone else’s priorities, make sure self-care is somewhere near the top of your list. You’re going to need energy to pull all of this off. If you need to take a walk in the park or finish writing your article before returning a phone call to the Geriatric Care Manager, do it. You know you will get it all done, but your refuel time is necessary to doing just that. Sometimes self-care means setting boundaries as well. I’m currently touring 13 middle schools with my 10-year-old, so on those weeks where I feel like I’m going to combust with logistics, I tell my uncle and everyone in his world I’m going to be out of touch this week.
5. Look for the lesson
As I hear from clients and friends, caregiving can include many, "Why me?" moments. Moments where we look around and say, "Can the real grownups stand up and take care of all of this for me?" It’s at these times where I take that question to a deeper level. Truly, why me? What am I meant to learn right now? How can this experience change me as a person? As a niece, a mom, a wife, a coach and a friend, I have now become a resource for many who are going through a crisis with their aging parents. When I can make an impact on others’ lives with the knowledge I’ve picked up along the way, it reminds me that part of the lesson is that this is not just about me. There is a world of people going through this who think they are alone right now and they’re not. You’re not. There are ways we can figure this out together.
Even with all of these learning moments, there are times where the needs kick up a level again and I find myself back in overwhelm. It’s at these times when I remember, "this is temporary" and I can tone down some of what I’m doing on other fronts. I can scale back on the business for a month or so and say no to more social events that aren’t my highest priority. But what I won’t do is use these busy caregiving times as a reason to say, "This is impossible." Or, "I’m never going to have the chance to focus on my business." It’s not. I will and I am. I know that this is part of what I’m both meant to learn and meant to teach, and often the lesson is in doing it in a way that still feels like me.