Today I have chosen to write about a difficult topic that might seem depressing at first glance, but I have actually found it to be freeing.
My goal, as always, is to encourage and support those who care for a loved one with Parkinson's Disease or any other chronic or degenerative disease.
From that statement, we realize that until a cure is found, our loved ones will have this disease or condition until they pass from this life into the next. So, to be perfectly blunt, their disease is incurable. And even as I type that, I pray for a cure for Parkinson's and the myriad other conditions that we know to be currently incurable.
Knowing they will not be cured is like taking a view from 32,000 feet where we forget about the day-to-day symptoms and inconveniences of each disease, and just focus on the big picture. That is good for us to do once in a while because the minutia of daily living can sometimes cause us to be bogged down in the mud! In all fairness, that is where we live, so we cannot totally overlook these problems. But for a moment, let's look at the big picture.
There comes a time in caregiving when we reach a tipping point when the decline seems to be accelerating, and we realize that we are no longer maintaining a previously desirable quality of life. With us, it was about 8 months into Carlton's hospice care. One day the nurse said to me privately, "We are to the point where one more Coke is not going to make any difference. Let him have it! If it makes him happy, that is a good thing. At this stage, it is not going to shorten his life."
To me, that was our tipping point. I realized that he was not going to get any better and that little things like a coke or an extra piece of cake were not going to shorten or prolong his life. After that, my focus was on doing little things that enhanced his quality of daily life, not his quantity of years or days.
I will admit that the shift in focus was difficult for me. In some ways, I felt like a failure as a caregiver. I had worked so hard for many years to keep him going, but I could not help him get better. He was getting worse. That seems like a strange thing to say because we all know that degenerative means they will get worse. But somehow in my mind, I felt like admitting he was getting worse was equivalent to failure on my part. I had to get past that to be able to make his final days on earth the best I could.
Wherever we are on this journey, just remember that while we cannot make our loved ones WELL, we can give them the best quality of life possible each day. That will keep changing because their physical and mental condition will keep changing, so we have to be flexible and adapt. When we get to the tipping point on our journey, we want to know that we have done our best.
Thank you for reading today. This is a topic that is also covered in my book. If you haven't ordered a copy, it is available through Amazon and Barnes & Noble, and also on my website. https://www.hopeforparkinsons.net/
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