What a way to start, right? But I might as well lay it out there. Contrary to popular opinion, yes, I get annoyed. (Ok, my husband just bust a gut on the “contrary to popular opinion” part!) Caregivers need to yell it from the mountain tops…SOMETIMES WE ARE ANNOYED!!!
We are like one of those fancy new Instant Pots. If we are not allowed to timely blow off steam, we will explode. (Ok, I HAD to have one of the Instant Pots. My daughter-in-law had one. We’ve used it once. Now it sits with the rest of my appliances waiting to impress you if you ever come to visit.) But back on topic. Like Shakespeare wrote: Why am I annoyed, let me count the ways.
1. Have you ever had a day where you had an event that was only for you? That once every six-months type of occasion? Then, in spite of telling your PD loved one about it…repeatedly, writing notes and putting it on the calendar. They forget and sleep in. They never sleep in. So, you have yourself showered, dressed (even make-up which you’ve pretty much abandoned) and now you are having to hurry someone whose disease literally is equivalent with an inability to hurry. You’re both frustrated, your clothes have wrinkled, and you need another shower! That’s a good time to find your mountain top and holler.
2. Or when you ask them in the evening to bring out their sheets the next morning so you can wash them and they forget. You think, ok, I’ll catch it this weekend, it really is no big deal. But, instead, of their own volition, they bring them out the next morning, one of the busiest days of the week for you since you have to run all over the city--for their stuff. You manage to get the towels that are in the washer into the dryer and wash the sheets before you make breakfast, clean up breakfast and begin your own private Uber service. Once you are finally home, four-and-a-half hours later, your PD loved one sits and watches you, waiting for the sheets to dry and you to make their bed so they can lay down and rest. I’m coming mountain!!!
3. And there are the countless times we, the caregivers, feel like the hired help instead of a valued member of the family as we prepare meals, deal with house work, meal prep, laundry, drive everywhere, take our PD loved one to doctors, therapists and health providers for every body part possible: the neurologist, PT, OT, speech and swallowing therapist, GI, podiatrist, eyes, ears, skin, and still handle the expenses, the calls to insurance, heaven help us if we need to contact Medicare. It never ends. I’m going to get a sore throat from my mountain-top yodeling.
But, (now you knew there was a “but” coming) just when you are at wits end and want nothing more than to become a sheep-herder and live in a yurt in Tibet, your PD loved one comes out and says, “I’m so lucky to have you. How could I deal with all of this without you?” And you wipe that stray tear and give them a hug and all is well, for that moment.
Which does not mean we, the caregivers, should give up on letting out steam, talking to others, getting away, finding our own time and path. Whatever and however we can deal with the annoyance, which we know will come back. Often. Right now, I’m heading back down the mountain and home. I’m feeling better and besides, it is time to make dinner.