Tuesday, June 18, 2019

The Backup

A couple months ago, I took these pictures of Evie providing care for Jeff when she participated in “take your child to work day” for school. She stayed home from class that day, and together we took care of Dad. We made and fed him breakfast. We did breathing treatments, and trach care, and changed the circuits on his ventilator. She even watched me change the dreaded colostomy bag – because the stark reality of caregiving is often having to do a lot of yucky things.

Evie has taken part in Jeff’s care since the beginning – that’s just kind of how it is when you have a family member that requires 24/7 assistance. As she’s gotten older, she’s been able to understand and handle more complicated tasks. And aside from a couple more intimate tasks like changing a catheter or cleaning certain areas of the body, she’s helped or at least watched me do almost everything there is to take care of her dad.

We’ve never hidden what is involved in taking care of Jeff from her – and that’s partly because she’s the closest thing to a backup caregiver that we’ve got.

As a solo caregiver to someone who needs full assistance, one of my biggest caregiving fears – besides something bad happening to Jeff – is something happening to me where I’m not able to care for him.

I haven’t been feeling the best lately. And it’s gotten to the point where I need to seek medical advice. From my symptoms and the research we’ve done, we think there might be something amiss with my gallbladder, but without medical tests we can’t know for sure. Jeff and I have been trying to approach this with a level head – which can be tough sometimes when we get caught up in “what if” scenarios. We’re hopeful that the pain can be alleviated with minimal time away for me. But we have to be prepared for me to be away for more than a few hours should I end up needing surgery.

And thus why the concept of a backup caregiver has been on my mind lately.

But here’s the hard truth about that: In family caregiving situations like ours, there are no understudies. No one waiting in the wings who is shadowing me. No one fully trained to provide the detailed, complex care I perform every day. So the thought of me being out of commission is terrifying.

Yes, we have our amazing 10-year-old daughter who has stepped up to the plate and has proverbially hit it out of the park with her competence in the tasks she’s learned and performed. But full-time caregiving brings with it a weight of responsibility that is not fair for a young child to shoulder.

We’ve reached out to Jeff’s parents for additional help above and beyond what they already provide for us. I’ve trained them in some more in-depth tasks that will help keep Jeff healthy and thriving should they need to step in for me.

I really hope it won’t come to that. Honestly, we’re all hoping it won’t come to that. But being prepared is just another aspect of what being an effective caregiver is all about.

So I will say with honesty that the day Evie stayed home to help take care of Jeff, I had more on my agenda than just “showing” her what I do all day. I made her do tasks herself, even when she was hesitant or a little nervous. Because that’s how I was taught. And the only way we master is by getting in there and doing it.

Ask any caregiver for a wish to be granted, and I can guarantee the majority of them would wish for the same thing: a clone. But since reality hasn’t caught up with science fiction yet, the next best thing is our back up.

And right now, Evie’s okay with being the backup. In fact, she takes pride in it. There’s not a lot of other kids her age who have the knowledge and skill she does when it comes to taking care of another human being.

She’s got a big role to play in our family. We depend on her – sometimes heavily – to handle some pretty complex tasks. And she does an incredible job.

She’s one amazing backup.

Saturday, April 6, 2019

Caregiving and ... : When Caregiving and Life Collide

When I was learning how to take care of Jeff, learning how to be a caregiver, all of my initial lessons were at Rancho los Amigos, the rehab hospital Jeff was at for 5 months. During that time, I learned so much. I gained an incredible amount of medical knowledge in a short span of time. I learned how to move a paralyzed body without hurting my own. I learned about catheters and trachs and skin breakdowns and side effects ... and I learned it all in a bubble. The bubble of the hospital.

So once Jeff came home, and I was able to put my newly acquired skills to use, I quickly learned about a new aspect of caregiving that I hadn't readied myself for. It's something I've termed "caregiving and ...."

While the caregiving tasks themselves were certainly challenging and demanding, it wasn't until I had to re-incorporate other aspects of my life into the caregiving routine that things became truly overwhelming.

When we were in the hospital, I was mainly focused on the hands-on care. But now that we were home I was faced head on with caregiving and ...

caregiving and parenting
caregiving and being a spouse
caregiving and working
caregiving and cooking
caregiving and cleaning
caregiving and being a daughter
caregiving and being a friend
caregiving and taking care of myself
caregiving and managing every aspect of our life

It was all so much.

Too much, sometimes.

The first couple months Jeff was home were among the most challenging for me while I learned to incorporate caregiving into everyday life.

Over the last six years, we've made adjustments to our life and fine tuned our schedule, but like any caregiving situation, especially a spousal caregiving arrangement, sometimes things pile up and fall by the wayside.

And one of the things that's fallen further and further down the priority list for us has been range of motion exercises. Since Jeff can't move his body, he has to have somebody move it for him, particularly his arms and legs. Like anything with joints - a body, a machine - if the joints aren't moved, they freeze up. And that can cause a lot of problems, and pain.

I was taught how to range Jeff's limbs when we were in rehab. The exercises aren't difficult to administer (though I will say that paralyzed legs are a lot heavier than you'd think), but they are time consuming. And time is something I tend to run short on.

We've turned to Jeff's dad for help with ranging Jeff's arms, and he comes over twice a week to do that. It's super helpful, and he does a great job. And Jeff feels the positive benefits from it. I try to keep up with ranging the legs and some additional arm ranging, but the truth is, most of the time there's more pressing items to tend to. And if it's not something we've mindfully inserted into our daily routine, it's often forgotten.

So when Jeff's nurse practitioner came to visit him after he'd been released from the hospital just a month ago, she told us that he was eligible for some home health visits, which included physical therapy. Normally Jeff's insurance doesn't cover therapy of any kind, but if you've recently been hospitalized, there's a window available for some temporary help.

And we've learned that when help is offered, you take it.

Jeff and I were really looking forward to the sessions because it would mean getting two things done at once, which is a rare treat in our world. Jeff would be getting care, and I would be free to finish up some things around the house.

The first therapist arrived and proceeded to ask the "getting to know you" questions required for onboarding a new patient. He asked about Jeff's injury, his pain, his medications, etc. Then he asked about physical therapy, particularly therapist-assisted range of motion he's had in the past. We told him that since Jeff's initial stay in rehab after his injury, he hadn't had any formal therapy.

Then came the million dollar question.

"And your wife can't do this, why?"

I was still in the room, so I answered. "I do, but I'm not able to do it enough. He's got a lot of other things going on that I handle, and most of the time those take precedence." I gestured to Jeff's ventilator in an attempt to subtly point out what I feel is an obnoxiously obvious indicator that my husband has medically complex needs.

I know the therapist had to ask the question for documenting purposes. But it just didn't sit right with me. I left the room as the therapy session got underway and tried to put the question out of my mind.

A couple days later, another therapist arrived at our house. Another round of questions, and - you guessed it - another humdinger.

"So you aren't able to do range of motion for your husband?" The question was directed at me, but this time Jeff answered. "My wife is my full time caregiver. She knows how to do all of the range of motion on me. She's been fully trained. But there's a lot of other shit she has to do with me. Plus she works part time. And she takes care of the house. And she's raising our 9 year old daughter. So she's pretty damn busy. We just need some help with this so she has a little bit of time to do some other stuff."

Jeff wasn't angry when he spoke. He simply laid it out.

Later that afternoon, hours after the therapist left, I finally let out the tears I'd been holding in. I was getting a fresh roll of paper towels from the garage when they hit. I stood there on the wheelchair ramp that spans the gap from the laundry room into the garage and shook my head as the tears fell. The frustration, the anger, the humiliation all came forward at once.

As a solo full-time spousal caregiver, I am often met with people and articles telling me that I can't do this alone. That I need help. So when I do finally reach out for help with an aspect of our life, and instead of help I'm met with a response of, "Why can't you do this?" it's so entirely defeating.

Jeff and I canceled the physical therapy sessions. They were only temporary anyway, and we were't likely to be granted many more.

While I certainly don't think that either one of the therapists meant for their questions to paint me in a negative light, I also don't think they were aware of how questions like that can negatively impact someone who is putting all the time and energy they have into taking care of everyone else. Someone who is worn out. Someone who is constantly trying to maintain the delicate balance of caregiving and life.

Jeff and I are still trying to figure this one out. It truly is a constant tweaking of the scales. And as hard, frustrating, and overwhelming as it all is, I am so grateful I have Jeff in my corner. That I have a partner who, while lying in his hospital bed, stands up for me. A partner who sees the demands that tug me in every direction. A partner who knows I'm doing my best to juggle the challenges of caregiving and ... .

This photo was taken a few days after Jeff came home from the hospital following his injury.
I was just starting my journey of learning how to juggle the demands of caregiving and life.