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New Year and New Caregiver Conundrums

This last month has felt semi-dominated by the onboarding of Ri’s new care assistants.

And to be fair, part of that has a lot to do with how much I allow this process to infiltrate my headspace on any given day. But to also be fair, being down a few staff members means that I am the backup, which is only ideal for a limited amount of time. So in order to move me out of that role as quickly as possible and round out his team, Ri and I have both devoted a lot of the beginnings of 2018 to actively refreshing job ads, making phone calls, interviewing, hiring, training, and essentially spending our very early mornings and most evenings with people we don’t really know in some rather intimate scenarios that extend beyond our preferred girlfriend / boyfriend parameters. And we be tired, because change is hard, even though we know that these new changes will no doubt bring vibrant, capable individuals into our home.

So yesterday, I sat down at our kitchen island to cathartically write out my mind thoughts. Knowing that I wanted to blog candidly about the challenges that this complex caregiving topic presents, but also knowing that I wanted to be respectful of Ri’s perspectives, vulnerabilities, role as the employer, boyfriend, and, oh yes, the person actually requiring the care, I could not for the life of me figure out how to convey it all without editing my words through an elaborate filter &/or not, but potentially running the risk of coming across as overly emotional and a wee bit self absorbed. Yikes. That left my head confused and my heart a bit heavy as I wondered – even if I could wholeheartedly express my experience, who could possibly relate?

So I sat. And I stared. And my eyes caught on some smudgy old nearly illegible Andrea scribble schmeared across the dry erase board stuck to our refrigerator door. A quote or some random thought that occurred to me one day a number of months back read:

There is so much change in challenge. 

Ah, yes. So true. And if it were any other day that sentiment alone may have been enough to pump me full of positive vibes and set my head on straight as I very much believe in maintaining a perspective that sees change as auspicious and equates challenge with growth.

But I was tired, you see. I was tired of welcoming new people into our home with no guarantee that they would stick around. And I was tired of modeling hundreds of nuanced care steps because that meant I then had to watch on as unexperienced hands poked and prodded at my boyfriend. Shifting from being a girlfriend that helps with care stuff in ways that make sense within the relationship to a care assisting girlfriend, no matter how temporary, tugs at this delicately fearful place inside that never wants to put the overall health of our relationship at risk.

I was thinking about these things and perhaps shedding a tear or 2 as I walked over to the dry erase board, pushed the side of my fist against it, and somewhat aggressively erased and then ultimately rearranged the quote to read:

There is so much challenge in change.

Also a very true statement, and probably a big reason why people give up on change in favor of just doing whatever they be doing originally. I felt like I wanted to be a giver upper, just for a little bit. So I put a big X through my caregiver hiring task list for the day, hit the backspace button on my blog deleting the 3 sentences I spent an hour typing up, and went to meet up with a dear friend that I have known since middle school.

This friend and I talked about a lot of things, one being our mutal shock that next year is our 20 year high school reunion (irrelevant, except for the fact that being this old didn’t help my mood). After deciding that we still kinda sorta look the same as we did back in 12th grade and have accomplished some ok stuff between then and now, I listened in as she gave me a detailed account of just what it is like to be a working mom of 2 young kids + 1 new puppy. I was momentarily sidetracked by a cute little side story about her little one and thought to myself – oh my gosh a baby – Ri and I should totally have a baby (!!), but came to my senses when she explained just how limited her alone time (and even more importantly, her alone time with her husband) had become. Her life sounded damn difficult and chock with its own set of obstacles, but also completely wonderful in a way that seemed exactly right for her. And what a relief (and by relief I mean I broke down crying in the middle of a crowded restaurant), because I could totally relate to her life challenges, despite the difference in the details. Just connecting (and shedding my tears) with this friend of mine who was also stretched a bit thin and wearing one too many hats made me feel so much lighter, capable, and ready to push through this wave of change.

I spent some time reflecting today, and the truth is that for approximately 28 days each month, I am 99.5% in love with my life. That is some good living, y’all, and I ain’t got the time to forget that fact. It is clear though, that I need to reach out and talk to the people in my life when I need some support. I can be quick to assume they won’t get where I am coming from, but they always do.

In regards to the care stuff, Ri and I may always have a bit of an inner struggle with the fact that I sometimes need to step into that role unexpectedly. But I believe in our ability to work as a team and it seems that moments like these enable us to constantly improve our systems and make positive changes in our work home/work environment. And that helps all of us realize that while this caregiver stuff can sometimes feel like a conundrum, it is actually a truly wonderful gift. In my follow up post, I plan to talk more about some practical changes we have implemented over the years, and what changes may be on the horizon, so please check back in.

 

 

Thanks so much for reading, everyone. And HAPPY 35, Ri!

Drea

 

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Spinal Cord Injury Super Basics

Written by Andrea

Now I understand writers block. I sit down, intent to write, as per Ri’s suggestion, about caregiving for my boyfriend while on vacation in Hawaii. I write, then erase, write, then erase- if it were the olden days I would have accumulated a thousand crumpled pieces of paper around my desk by now. Then my AhHa moment came, and I concluded- none of this makes any sense unless you understand a little more about Riley, about spinal cord injuries, about why caring for a loved one is… complicated. So, I am going to write a little bit about that as it just feels like where I need to start.

medical-specialist-foramina-cervical-spine-superior-nuchal-line-inferior-mastoid-biology-study-process-styloid-transverrse-ligamenta_fotor

It does feels weird though, starting at the beginning, probably because I wasn’t there 8 years ago when Riley dislocated his neck at C 5/6 (conveniently circled in the picture above). I could never speak to the gravity of that situation. It would be 4 years until we met, and in between the life he had back then and the life he has now was that moment, as quick as the blink of an eye, really, that changed so much.

Ri’s dislocation caused immediate injury to his spinal cord – the very important and delicate bundle of nerves that carries impulses to and from the brain to the rest of the body. When the spinal cord experiences trauma, a loss of function, such as mobility &/or feeling can occur. Unfortunately, for over 5 million (!) people in the US of A alone (including my love), the consequence of the SCI (spinal cord injury) is paralysis.

In many SCI’s, the cord remains intact, but the damage still causes a loss of function (called an incomplete injury). Riley falls into this category and, because of this, he still has a good bit of sensation below his level of injury. This threw me off at first. Example- early on, I remember him commenting to me that one sock (underneath his pants and completely out of sight) was twisted and sagging. Say what?!?! Sure enough, his diagnosis was accurate and I was super impressed. I realize that sounds promising, but the day to day reality for Ri is that most of that sensation takes the shape of pain and discomfort that he can’t just walk off. I haven’t asked lately, but I bet he would say this is one of the most challenging aspect of his life in a wheelchair.

The Christopher and Dana Reeve Foundation provides a really great summary of a C5/6 injury. Riley falls somewhere in between these 2 descriptions:

  • C5 injuries often spare the control of shoulder and biceps, but there is not much control at the wrist or hand. Those at C5 can usually feed themselves and independently handle many activities of daily living.
  • C6 injuries generally allow wrist control, enough to be able to drive adaptive vehicles and handle personal hygiene, but those affected at this level often lack fine hand function.

You can check out this handy dandy myotome/dermatome man below for a visual. Essentially, the purple C5/6 regions are the space where things start to change for Ri. Anything below those lines is affected.

dermatomes_fotor

It probably goes without saying, and it feels really bizarre for me to write this, but the majority of Riley’s body is paralyzed. I totally see the other side though- can you believe everything one can do and experience from the chest up? Think about it- see, taste, hear, smell, speak, kiss, make love, breathe, think. And move. Riley can definitely move. His shoulder dancing is legendary (I would’t dare joke). But, reality is such that Ri does require the physical assistance of caregivers/personal care assistants (PCA’s) to get up and on his way in this world.

Currently, Ri employs 4 PCA’s. Most days, our home is buzz buzz buzzing with activity. Someone arrives at our house before the sun even rises (we never set an alarm clock and instead wake to a gentle tapping on our bedroom door- a method that is 95% reliable). They first assist Ri with things that we might not even realize we do when we wake up- roll over in bed or take a sip of water, as an example. Then, this whole morning routine begins. The PCA helps Ri get up and on his commode (to do the morning business). They assist with showering, dressing and then they drive Ri off to work. In the early evening, he is picked up at work and then his PCA helps him around the house and eventually into bed. That’s 15+ hours of “being on” each day, you guys. By the end of the week, we all need a break, so I help Ri quite a bit throughout the weekend.

After much trial and error, that is our current homeostasis. It will change again soon- it always does. I have been asked, many times, what it is like always having someone around, observing your relationship and lifestyle. This has probably been an evolution, but at this point I would say we just really don’t care. We are committed to providing a solid work environment for the PCA’s, but outside of that we go about our normal home life.

I want to tell you one thing about me, though, since we are all getting to know each other. Admittedly, I have a caregiver-y side to my personality that I work to keep in check. Why? Because I NEVER EVER want Ri to wake up one morning, look left and realize that his girlfriend has transformed into his caregiver. Don’t get me wrong- I do help Riley with his care, but I am mindful not to over help, not to over insert myself into his intimate business in ways that would compromise our romantic partnership. I adore being adored by that man, and I admire how large, in charge and directive Ri is about his care and his life in general- I have no interest in stripping him of that autonomy. What I will do, though, is know his care like the back of my hand, totally step in as necessary and within my limits, and train each caregiver to the point of obsession so Ri and I can have peace of mind. I also need a lot of sleep to keep my head on straight, but that is more a side comment.

As for the Hawaii trip, my caregirlfriending was a true experiment and I really will share more about that soon.

But in the meantime, please oh please let me know-  Is any of this remotely interesting? Should I continue this blogging journey? I am feeling vulnerable and need input, ideas, whatever you got just give it to me straight!

I also want to say that this is, no doubt, an oversimplified blurb about spinal cord injuries. Good places to read more include:

christopherreeve.org   &/or   The Shepherd Center

Thanks and love!~~~~A

 

 

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Accessible Vaycay Hawaii Style

 

img_3009Written by Andrea

Winter in the Pacific Northwest gets tough, you guys. So cold. So wet. No sun. Why do we live in Portland again? Check back late spring and I will remember once again :).

At some point mid winter, it just became clear- Ri and I needed the warmth of a tropical breeze to dry out our water logged bodies. We craved Vitamin D -straight up from the sun. We required vaycay.

So, we booked a trip to Maui with friends. This was a big deal for 3 main reasons.

  1. We had never taken a tropical vacation together.
  2. We had never taken a tropical vacation with friends.
  3. We decided to do this tropical vacation sans caregiver, meaning Ri and I were a team on all fronts.

I want to tell you something about Riley- he is a travel prep pro. My boyfriend keeps a grand master list of every possible item we need to consider/bring when traveling + he keeps a prepackaged travel bag filled with extra medical supplies, a travel sling and more. Check, Check and Check!

Add to that, Ri and our travel pal sourced an awesomely accessible accommodation, along with a ramp van and a hoyer lift, so we had every controllable aspect of the trip set up beforehand with, quite honestly, little to no effort on my part! I, you see, was conserving my energy in preparation for the actual trip, when, you know, all the uncontrollable stuff starts to happen. Which, if you have ever travelled, you know is inevitable.

We had  fair amount of that stuff hit us on this particular vacation. Flight delays, rain, food poisoning, pain, sleep disturbances…that all happened. But, all of those things were just speed bumps along the way. Outside of the bumps, we made some kick ass memories with really great friends, Ri and I went swimming together for the first time ever, and we watched the sunset over the ocean every evening. We relaxed, we read, we soaked up the sun. We did Maui and it was really nice to get away.

I was hoping to share a few wheelchair savvy travel tips throughout this post, but all I can say about that is – talk to Ri, he has it down. I do have some general travel tips though, which I have realized apply equally as well to general life as they do to travel (darn, I guess vaycay is still real life). Either way, enjoy!

Here are my travel tips-

  • Be smart, be prepared, and only do what your body and mind are up for.
  • Don’t push yourself! Duh, you are on vacation.
  • Accept that in between all of the wonderful moments of travel/life there will be a bit of nonsense, chaos, and well, hard shit. This is the adventurous part of the trip (life) and you will either laugh about this stuff down the road or they will help define and shape the person that you will become.
  • Get a lot of sleep. Like, a lot of sleep. More than you think you need. Oh, and drink a lot of water. But not right before you sleep.

I want to give a big shout out to the Hyatt Residence Club at Kaanapali Beach. It is a fabulous option for anyone with mobility issues, or anyone who just wants to relax to the max.

Lastly,  Ri suggested I write another blurb about my experience with the whole caregiving side of the trip. So, stay tuned for Part 2 of this post, examining the juxtaposition that is Caregiving (or as I prefer- Care-girlfriending) While on Vacation.

Mahalo.