Caregiving is not for Sissies: PART I

I’m a sissy. I’m a weak, privileged little bitch who doesn’t like icky things!

Too bad, sweetheart! Caregiving is icky. Caregiving is physically strenuous. Caregiving requires patience. Kindness. Patience. Empathy. PATIENCE. Skill.

I’ve discovered I have none of these things.

I used to kiddingly sing to Minke the lyrics from the Bruno Mars Song that goes, “I would catch a grenade for you …”

Well, the Universe decided to see if that were true and here I am. Holding this grenade, this bomb, the bomb that will go off intermittently and reignite over and over. Its ticking mocks me. This explosive little pellet known as ALS!

This past weekend was R O U G H! Minke’s losing strength. I’m losing strength. I’m no longer able to lift him. I never believed I could lift him in the first place, but I was doing the lifts and the transfers from bed to wheelchair, wheelchair to toilet, and back again. Can’t do it anymore, because Minke no longer has the strength to hold himself up at all.

This past weekend tested every bit of mental and physical strength I had, and it was a big, fat fail.

To lift Minke, there’s a nifty piece of equipment called a Hoyer Lift. I’ve been trained on the lift multiple times by Minke’s physical therapist. And practicing with the physical therapist in the room is one thing. Using it by myself in a crisis situation is a totally different story. I’ve had to use it a few times now when Minke has either fallen or if I had to put him on the floor because he was about to fall.

Now, let me tell you something about the Hoyer. This piece of equipment causes me to panic. And I’m talking, about heart palpitations, sweating, nausea, and the need to FLEE! Watch the short video below to see what a Hoyer Lift is. This is only 1 video in six of my training. You’ll get an idea of what I’m dealing with if you don’t know what it is. It’s very … intense.

So, here’s the story of obtaining a caregiver. Caregivers, as we have come to find out are scarce. GOOD caregivers are extremely rare. We were put on an agency waiting list through the VA and we waited about 6 months.

Three weeks ago the agency called to tell us we would get two caregivers for the following week. One for Mondays, and Fridays, and one for Tuesdays, Wednesdays, and Thursdays. Okay. Here we go. A stranger will be entering my house and will be privy to our private and personal life. How fun!

On the following Monday, the agency called at 7 AM to tell us the caregiver had called in sick. Wow! Off to a great start. On Tuesday, the second caregiver showed up promptly at 8 AM. I was encouraged. But in the four days she was with us, she turned out to be a no-go!

Minke politely called her “odd.” I used some other words for her which I will not repeat here. Oh, and she had never used a Hoyer Lift before. Nor had she ever cared for someone with ALS. I came to doubt that she had any caregiving experience at all.

She didn’t know how to flush a toilet. Our toilet is a normal toilet with a handle like every other toilet I’ve flushed every day of my life. She didn’t know where the handle was. Really?

She couldn’t remember things 30 seconds after we told her. She asked Minke if he wanted breakfast. “yes, please,” says Minke. “May I have some eggs and toast?” She says, “how do you want your eggs?” Minke says, “scrambled is fine.” She takes two steps, turns around, and says, “how did you want your eggs? Minke repeats, “scrambled, please.” She takes two steps, turns around and says, “did you want toast?” “Yes,” says Minke. She takes two steps, turns around and says, “how did you want those eggs again?” Minke, ever-patient repeats for the third time, “scrambled.”

As she heads to the kitchen, Minke hears her utter under her breath, “I’ll just make ‘em like I make ‘em.” Great attitude, crappy caregiver.

So … guess what he got? Scrambled? No. Over-easy? No. Raw? You got it! She gave him sunny-side-up eggs that were not cooked. Runny is one thing, but these were RAW!!! The whites were still liquid. This is when I knew she needed to be gone the next day!

I will not continue to list all the other things she got wrong. All we knew is she was not trustworthy and she didn’t listen to us or our needs, and we wanted her gone. Compared to some of the other horror stories I’ve heard from my fellow ALS spouse caretakers, we got off easy. But yeah, we fired her!

To be continued … PART II tomorrow!