If I asked you to accept a job that required you to be available 24/7 for basically no pay, would you do it?
That's what millions of families around the world are asked to accept every day. Families like yours, who have a child with complex care needs or some other family member like an aging parent who is impacted by a serious health condition.
Doing this care 24/7 for an extended can lead to serious problems.
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I have a quick question for you. If I were to offer you a job that required you to be on call or available 24 hours a day, seven days a week for basically no pay, would you accept it? Probably not. But that's what tens of millions of families around the world do and accept every day. Anyone who's caring for a child with complex care needs or a loved one such as their spouse or parent who might have a serious health condition such as Alzheimer's or dementia, that's what they do every day. So why do you do it? Well, I think it's basically because no one else is on the hook to do it. Now, a friend of mine showed me an article the other day, it's called, it's from the American Medical Association's pediatric division, and it's entitled safe work standards, sorry, safe work-hour standards for parents of children with medical complexity.
Basically, it talks about how you'd never accept a job that required you to be available 24 hours a day and call that job safe, right? It exceeds any reasonable limit in any industry. They argue that the parents of and families need to be afforded that same level of protection. It's no wonder that so many families are dealing with stress and depression and the responsibilities of all of that, and sleep deprivation. I mean, the list goes on and on. I mean, that's nothing new to you, right?. When Jan and I were thrust into this world of 24 hour care, we had no idea what we were doing. We fumbled and stumbled just about every single day on dealing with Ben. We struggled a lot and we were basically off balance. But there was nobody available. I mean, there was no one showing up at our door telling us here's all the things we can do. They weren't lining up to give us all the support.
So basically we took it upon ourselves to do it. We took it upon ourselves cause he's our son. I mean, that's what you do. Those are the responsibilities that you take on. But as Ben got older, his care was still high and it required a lot of energy. Being older, you don't necessarily have the same drive in the same level of stamina you did before. It took us a long time to figure out, maybe it took me a long time to figure out that we had to bring in some help, that we couldn't do this all on our own forever. Just as the American Medical Association says in this paper, doing this 24 hour care seven days a week for extended period can bring on all kinds of serious problems.
The first one is physical health issues. It's never a good strategy to burn the candle at both ends, right, and that's what we were doing. I mean, it leads to not only exhaustion but lack of exercise, lack of sleep and that can lead to all kinds of other health issues as you know, high blood pressure, anxiety, stress, weight gain and the list goes on and on.
Another issue it can lead to is emotional health issues. Providing that care is tough and it can be a lonely place if you're doing it all on your own and that can only lead to more isolation and more stress and more anxiety.
The other thing that it can impact of doing this round the clock care, most of us, some of us have a full time job we have to go to or because of the care we'd scale it back to maybe part-time. Well that can only add to financial issues, financial stress, if that's what you're dealing with as well. Employers would report readily that in those situations absenteeism is a problem and that really serves no one.
The other issue that you're dealing with is you postpone important, let's say leisure activities. I mean, what leisure do you have? What things can you do in this life when you're dealing with 24 hour care? You basically can't. You put off things like spending time with your spouse or going to a concert or going to some sporting event, just sort of little things that keep you fresh and keep you balanced, you postpone sometimes indefinitely.
The last one in which I think is just as important is your effectiveness as a caregiver becomes reduced. The longer you stay in this cycle of 24 hour care, the less effective you become. I mean, the hands on things you do are the bread and butter of caregiving as anybody knows, but there's more to it than that. There's a lot of planning that has to go on. There's some overall planning things you need to worry about. If you're exhausted all the time and if you're trying to do, if you're in the weeds all the time, there's no way you can get to those things. Inevitably, the care that you're providing becomes less and less effective. Again, that that serves no one.
None of these problems show up overnight. It's kind of a slow burn and you don't recognize the changes in your body or the changes in your mood or mindset because it happens so gradually. But they do happen. So if you're going down this path, if you know someone else who's going down this path, just pause. Tell them to or tell yourself that, "You know what, this isn't sustainable forever." One of the things that you really should consider is bringing in a caregiver into your life, just to offset all that stress and the constant responsibility.
It took us a long time to get over that hump and figure that out, but we have figured it out and we want to help you figure that out.
So send me an email after you start to think about this, send it to [email protected] and let's talk about how you can get out of this 24 hour cycle.
I mean, bringing somebody in doesn't mean you're giving up control. Doesn't mean you're suddenly you're shirking your responsibilities. What it does is it allows you to get the recharging and the energy back that you need to continue for the long haul.
I hope this has been helpful.
Take care. Talk soon.