When Jan and I were thrust into Ben’s world of 24-hour care with no preparation and, of course, no training, we struggled a lot … which really isn’t surprising.
We were off-balance nearly all the time and had little confidence on what to do next.
Strangely, we thought we were the exception. An outlier. So different from the rest of the world.
After all, people weren’t lining up at our door to help us figure things out. We were pretty much left on our own.
When it came to providing round-the-clock care, it all fell to us. And I would say, that’s probably how we wanted it.
He was our son, after all. Our responsibility. It was up to us to provide the care needed.
But as Ben got older, his level of care remained high. Needless to say, that just goes with the territory in the world of disabilities.
It took us a long time to figure out that we couldn’t do this on our own (or maybe it took me a long time).
What we didn’t realize was that every day, in just about every community around the world, there are 100's of millions of (unpaid) family members or friends who fill the role of caregiver.
Some do it part time. Some do it all the time.
It often requires them to put their lives on hold. Or they try to “do it all” and attempt a dangerous high-wire act of managing work, play, family, caregiving, and just living in general.
It’s dangerous because if left unsupported, serious problems WILL develop. Here are just a few:
Burning the candle at both ends is never a good strategy. Besides obvious exhaustion, it gets in the way of important things like exercise and sleep, even stealing time away from seeing your own doctor on a regular basis.
Sleep issues can lead to high blood pressure, weight gain (or loss) and drug dependencies.
If you’re the only one providing care, it’s a lonely place to be. Too much isolation can contribute to brain health problems such as anxiety and depression.
The demands of your loved one’s care can aggravate your stress levels which only accumulate. If financial worries are piled on top, your ability to cope and deal with even small problems is almost impossible.
Something has to give in the big picture and it’s often your productivity at work. If you’re exhausted, it’s tough to function at any level. Arriving late and leaving early are things you sometimes have to do to get by.
Or working on a reduced schedule, which only adds financial stress to your life.
Or not show up at all. Absenteeism is a big problem for employers in some cases.
With no “spare” time on your hands, spending casual time with your family or friends doesn’t happen. Going out to a movie, or a sporting event, or a concert is just not in the cards.
The enjoyment and relaxation that those activities can bring are lost. The balance you need in your life is out of reach.
The hands-on, physical work of caregiving is so important. It’s often what makes the difference.
But it’s not the only thing.
A lot of planning is needed to make sure you’re spending time on the right things and to see where things are going. And you need oversight to ensure things are done right.
It’s rare that one person can handle all of this while balancing work, play, family, and life.
* * * * *
None of these problems show up overnight. It’s usually a slow burn and decline that is difficult to notice, especially if you're in the weeds every day.
If you’re headed down this path or you know someone who is, you need to take a step back and ask for help.
You want the best possible care for your family but it can’t rest only with you no matter how Herculean you think you are.
We’re here to help you down this path.
Deciding to bring in a caregiver is not an admission of failure.
It's actually the right response to ensuring both you and your family have the best possible support.
Today can be different