February 13th, 2014 Yes, it has been awhile since my last post. Much has occurred, and really, very little has occurred. But one consistent thing that remains in my mind daily, is the need, and/or importance of having a caregiver. Right when you think to yourself, "There is nothing I can't handle on my own...", you get a really good dose of reality....usually in my mind it a a good swift, kick in the pants.
With the diagnosis of Parkinson's Disease comes the quick realization that it is assumed you have a designated caregiver. Now, who in the world would volunteer for such a title, is just beyond comprehension for me. But it even becomes further evident, that Parkinson's and caregivers are two terms that will go hand-in-hand in the land of the Parkie,
Caregivers have a job much like a tight rope walker. Falling a little bit to either side will have horrible consequences. You see, we Parkies, who may have been very kind, gentle, soft-spoken, and easy going, prior to diagnosis, possess this ugly twin who will rear its ugly head more often than not, as the disease progresses. It really is not anything we are proud of, nor seem to have control over. It is just...well....kinda, is just, there.
You see, frustration consumes me. My world has become slow. So any pressure to move faster, speak quickly, think rapidly, just creates like this bio hazard haze that envelopes me and unleashes the angry python inside of me, who will strike its victim, swiftly and angrily, but then quickly retreat. My tongue has become the python. In the midst of a friendly conversation among family, or friends, I may suddenly blurt out, "just a minute, just a minute, you are interrupting me.....". or a swift, "let me finish!", which by all accounts, is not the norm for me. Hence I blame the python for striking yet again. But my caregiver is very aware of this frustration, and he will move the conversation in a way that only he can, and my little outburst, will be but a blip on the radar.
The Caregiver becomes a very important piece of the PD puzzle. He/she is present at doctor appointments. This is most important when the Doctor, Neurologist, or Movement Disorder Specialist is speaking. To me it is the sound of, Charlie Brown and Lucy's classroom teacher...."wa...whaaa.waa..wa...waah". My focus has now become the tremor in my hand. It is acting squirley for no apparent reason, or my mind wanders, trying to think ahead of the doctor, trying to contemplate the correct answer to his next question. The Caregiver, in this case, is the one who collects the information, and relays it back to me at a time when they will have my full attention.
I think I have developed ADHD along the way, for even when I should be focused, my extremities that are actually taking on a life of their own, become my preoccupation. While Charlie Brown's teacher (perhaps today it is my Neurologist) is "wa...wah...waaaing"... I am noticing that if I try to stop my hand from tremoring sideways, it squeaks its way out anyways, moving up and down. Hhhmph...I never realized.....oh...did that doctor just say, exercise????? At another appointment while listening to wa..wah..., I realized that my leg does indeed tremor...mildly...but whoa...look at that! Oops...I think the doctor just said something about 5x per day?
My caregiver has learned that it really isn't a challenge to relay the information to me, IF, I am able to focus, which really requires timing. No appointments before noon, thus allowing for my second dose of meds to kick in. And definitely prior to 4:40 when I wind down after my third dose. Is there a perfect time??? Absolutely! If the moons align, and I take my first meds at 8:00 am, and am able to go back to bed until my 12:00 noon dose, which would make my third dose, say, 4:00, then by all means....2:36pm is a great time for a doctor appointment!! My caregiver knows this, so usually we reflect on the important information the doctor presented, at 2:36 when the moons have aligned and I began my day at 8:00 am. He knows my schedule like the back of his hand.
My caregiver helps make things easier for me, but is also the only person who can push me to my limit, without sending me over the edge. He is particularly good at convincing me that I should go for my walk. I guess at some point during one of my doctor appointments, the conversation became how important it was for me to continue to use my legs as much as possible. I think that was the day I noticed that if I put my right foot flat on the ground, my ankle will swivel...but doing this to my left foot, absolutely nothing. Huh....who would'a thought?!? Sometimes, my caregiver forgets all the tip-toeing around, and just gets to the point, "use it or lose it", and walks away. Wow....that was mean. I have PD don't cha know!?
Now that I ponder the idea of caregiver, I guess I never actually asked mine if he wanted to be one. Sure, I left the door open when I was diagnosed, and suggested that if the future terrified him, I would not hold it against him to walk right out. He did not. He said we were in it together, to the end. So, I guess I just kind of granted him the title of , Caregiver. Lucky guy!
On a serious note, the role of caregiver is vital. It is someone who attends support meetings, doctor appointments, and the one who helps keep you on track, whether it be medications, appointments, or daily routines. The caregiver is the tightrope walker, who knows how to balance you, and your life. It is your voice when you have none, your strength when there is none, and your shoulder when you need one. My caregiver certainly walks the rope, and even when I give him a nudge, he holds strong, keeps his balance, and gets me back to where I need to be. He is the perfect act in one three ring circus that has become my life.
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