Why Do We Settle?

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Why Do We Settle?

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12615211_10207900749814135_2008657216543563225_oI just had an “epiphany,” a moment in which you suddenly see or understand something in a new or very clear way while chatting with a group of caregivers at our Aphasia Community Center the other day. We all admitted that as time goes by in our career recovery, we start settling. We all admitted that we get tired. Tired of trying to be a spouse and also a therapist. One lady shared that she had to decide that she couldn’t do both, that to be a wife to her stroke victor husband, she had to stop trying to be his therapist.

We’ve all been told that our brains can be rewired after a stroke, and in order to do that repetitive movements are required. That means hours upon hours of therapy. But who can afford that? Who can even find a therapist who is willing or able to work with you for all those hours? In the absence of the resources we need, the burden falls on the family caregivers to do it at home. That’s when we began to settle for less. I have heard some family caregivers say that their caree does therapy at home with them just fine. Those are the lucky ones. I’ve been around long enough to say nine times out of 10 our spouses will not and do not want to do therapy with their spouse. See the picture above for an example!

Why is there no long-term help for people after they have had a stroke? Why is there no concern for quality of life for people’s life after stroke? We are tired. We are already doing all the stuff our caree can no longer do, and then we are expected to be occupational, physical, and speech therapists too. That’s when the settling sets in. That’s when a caregiver has to decide if it’s worth it to try and get them out of the wheel chair. Or sometimes, that it’s easier to just leave them in one. To decide whether it’s easier to try and get their caree to say the word they are trying to communicate, or just play charades. And on it goes, is the effort worth the reward? Will the effort ever lead to a reward at all?

But there is hope, and there is help out there. For the first time in sixteen years, Tim and I have seen with our own eyes a company that does care for stroke survivors after strokes. Brooks Rehabilitation Center in Jacksonville, Fla.,  has some unbelievable programs in place. They have partner with 9 YMCA’s in the area to offer Stroke Wellness programs for $15 a month. They also offer an Adaptive Sports and Recreation program for FREE! Yes Free! from what I understand there are the only free program in the US. They offer cycling, rowing, wheelchair rugby, archery, wheelchair basketball, trap shooting, yoga, golf, power soccer, bowling, billiards and more. Then there is the Aphasia Community Center for those with Aphasia to work on their speech in five hour classes. This place is so awesome but it’s an hour and 45-minute drive each way for us and I am tired…

Why is there not more places like this? First of all, insurance won’t cover anything like these programs. Brooks Rehab is a not-for-profit company so they take what they make and put it back into the community by offering these programs. We need more programs like this! We make the drive twice a week to visit this facility because we’ve looked for 16 years and haven’t found one until now! Keep looking, keep hoping, because there are people who understand and are working to give caregivers and stroke victors the support they need.

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Denise

This is such a great post, Penny. I think we often settle because we just don't have the energy to continue to climb another mountain. Your post is a reminder that we can take a break from the climb but climb we must because we're the best advocates to get what's needed. And, hopefully, as we climb, we'll join other climbers and use our collective energy to get better.

EllysGdaughter

That is just amazing Penny to hear about what Brooks offers! What a disappointment that it is so far from you. I am sure the stress of driving all that way and getting caree in and out of the car is very taxing. Hmm, just have to figure how to get the word out and help them expand? Not you the Caregiver, but maybe a group of dedicated therapists would be willing to invest in something like that...what a blessing it could be to more folks in your area!!