The Caregiving Yo-Yo
The Caregiving Yo-Yo
You can never plan the future by the past. ~ Edmund Burke
How many of you liked to play with a yo-yo when you were a kid? I would guess that just about everyone has taken their turn, spinning their yo-yo up and down, controlling the string, holding steady, flipping the device backward to impress. As I have thought about how our caregiving journey has begun in 2014, I see a resemblance to that of a yo-yo: Up and down, backwards and forwards, spinning all around. Unlike a yo-yo, family caregivers have little, if any, control over their caree’, health which makes for so much uncertainty when you try to plan ahead.
TLO finished 2013 with a bout of congestive heart failure that kept us from traveling to Florida‘s west coast to visit his family. I could tell leading up to the day we were supposed to leave for Tampa that something different was brewing with his health which necessitated an unplanned trip to his PCP. With a few days of additional diuretics and a new six-day steroid pack, TLO was feeling great as we moved into 2014.
Mindful that we have now had two trips derailed by unexpected health calamities late in 2013, we set our sights on going on a week-long cruise starting on Saturday, January 11th. Our travel plans for January 11th ended up being derailed again by another unexpected health calamity. Unable to get out of bed the day before the cruise, and the following two days after the cruise sailed, necessitated an emergency call to his PCP, then followed by another unplanned visit to the doctor’s office. The consensus was that it was unsafe for him to go on the cruise. Disappointment does not accurately describe how we both felt when I had to make the call to cancel the cruise. (Yes, I did purchase the insurance!)
With an uncontrollable nose bleed, only exceeded by excruciating back and leg pain, TLO stayed in bed for three days. We both were in sheer puzzlement about what was going on with his body. The pain he was experiencing was different, the nose bleed was troubling, and the concern was mounting. His current pain medications were not providing any relief. “What’s going on here,” we both thought!
The relief started to slowly take place on Tuesday after an injection administered by his PCP and a new round of steroids which started the following day. However, during the visit with the PCP, the concern is that the cancer has spread to the bones in his hip and leg. We’ll know more after TLO completes another MRI. As the week progressed, TLO admitted that he had been fearful of dying because of the intensity of his pain and discomfort.
Thankfully, just a few days after the injection and a new round of steroids in his system, we were able to get TLO out of the house for a trial run. As the week progressed, the nose bleed disappeared and his pain is at a manageable level. "I wish I would have felt like this on the day we were supposed to leave for the cruise,” TLO said just last night. "I would have wished that, too." I concurred.
While it may seem easy for some of us to control a yo-yo by keeping it steady and close to the ground, family caregivers are always rewinding, trying to avoid that uncontrollable spin, looking for that gentle "touch" that will keep our paths steady.
That is why I like what Edmond Burke had to say. “You can never plan the future by the past.” If we were to look solely on what was in the past, we would lose hope. Hope is one of those intangible items that makes those difficult caregiving days plausible. Without hope, there is no planning, no future, no means of survival. Hope brings anticipation, hope brings comfort, hope brings the excitement. Hope is what keeps us going!
We all know our health is unpredictable. Sure, plenty people like ‘TLO’ have similar health concerns in front of them, but to take away one’s hope is like removing medicine. Without hope, there is no future; without a plan, there is no hope!
Yes, we are going to plan another trip soon and when the day arrives for us to leave, we hope that we will be well enough to go. While I’m mindful of the past, I can’t worry about it because by worrying about the past, takes away the hope that we create. Once we lose our hope, we have let the cancer beat us.
Because, you see, we might have cancer, but cancer does not have us!
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