The Caregiver Diary

Quadriplegiaparalysis of all four limbs; tetraplegia


~Tied up with an invisible chain



Shower day

As I stretch and place my feet on the floor, I blink the sleep out of my eyes. There are days I wish I could sleep as long as my brain would allow me. Instead I glance up at the clock and realize that I have already spent too much time laying around. You depend on me, without me you can’t begin your day.I often reflect on all the things in life that people take for granted. The gentle placing of their feet on the floor and the ability to stand and walk into the bathroom to turn on the shower. Things are very different for you dear husband. I roll you onto one side and then the other so that I can place the sling underneath you. I position the Hoyer with it’s legs under the bed so I can put the sling straps onto the hooks. The Hoyer works just like an engine hoist. I carefully raise the arm of the Hoyer, gently lifting you off the bed.

Once you are lifted enough to clear the bed rails of your hospital bed, I then maneuver the Hoyer to strategically place you over your shower chair. All the while being very aware of  your Colostomy and Catheter. Once you are sitting as comfortably as you can I must wheel you through the house to the bathroom that is actually connected to our bedroom. We call this the “Nuts and Butts” parade. Through the living room, up the ramp to the dining area and then down the hall to the bathroom. We are unable to enter the bathroom from our bedroom due to someone’s ass backwards setup of the the toilet which is directly in front of the doorway, blocking wheelchair access. We start your shower with a good soak and a brushing of your teeth. You get a good scrubbing from top to bottom and then we reverse the process back to the room and into the bed. Once you are lotioned up and dressed I must Hoyer you one last time into your wheelchair. This entire shower process takes at least one and a half to two hours. Next you get your water, pills and coffee. Now I can finally take a moment to fill my favorite spot on the couch and plan for the next round of duties. I challenge each and everyone of you to imagine yourself having to get your partner ready every single day before you begin your own day. Imagine how much earlier you would have to get up or how much later you would be getting to bed. As the caregiver of my husband, I cannot just think of myself, I am responsible for another human being. As a caregiver, my job is never done.

~Kelly (2017)

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Join Me For A Drink

Some days are completely exhausting, physically and mentally. I’m going to pour myself a drink. Why don’t you do the same, and join me for some verbal expressions. 

Most of my life has been dysfunctional. Abused verbally, mentally, sexually, and physically. I used the excuse of not having a mother for my behavior. I spent my teen years in various placements and my adulthood in every wrong relationship I could throw myself into. I failed in many ways as a parent and couldn’t stay focused long enough to advance in school or work. Eventually I got myself on a fairly straight forward path and married a great guy. My new husband just happens to be a quadriplegic. I knew what I was getting into when I married him. Caring for him is something I can handle. What I struggle with is taking care of everyone else. It’s not supposed to be this way. I should be at the point in my life that I shouldn’t have to work so hard. Some feel that maybe I deserve the shit I get, because apparently I was a pretty shitty person. I had shitty moments, mostly because I was never taught any better.

I don’t feel like I have ever truly belonged anywhere. Ripped from my Native American roots, raised for six agonizing years with a White middle class Lutheran family. Thrown back into “The System” until age 17, I was told I was supposed to be like everyone else. But I can’t be like everyone else. I wasn’t created that way. I am not completely sure if I was born this way or created over time. But either way I know I differ from most people in society. What most people refuse to believe is, people can change. I changed. But the one thing that has never changed is my willingness to give people second chances. I believe in the goodness of most people even when most people have given me very little reason to keep seeing the good. Now that I have slowed down and I can take the time to look around me, I can see people and things for what they really are. And it’s heartbreaking.

The Caregiver Diary

Marriage

By all means, marry. If you get a good wife, you’ll become happy; if you get a bad one, you’ll become a philosopher. 
Socrates

We both had traveled very separate and very different roads. Both quite destructive in our own way. It took a couple years after meeting you to realize that the road kept bringing me right back to you. Why was that I wonder? You had a way of healing my spirit and mending my soul. I needed you and I wanted you. So began our courtship. During this time we explored each others minds and spirits. It was obvious that we were willing to love each other unconditionally. Separately we were broken. Together we became whole. We married in 2014 surrounded by our closest family and friends. Here begins our journey as husband and wife. Caregiver and husband in need of care.

“Bless the Broken Road” -Rascal Flatts
Kelly Blake 201720141102_174738

The Caregiver Diary

caregiver:

A person who cares for someone who is sick or disabled.
 
When we first met I never could have guessed the roles we would play in each others lives. I was on a destructive path and you seemed so broken. But you weren’t really were you? Physically there was so much of you that didn’t work, but everyday I could glance up from my work and see you laughing and interacting with such unbridled exuberance. I found myself admiring your strength despite all that you had been through. I found myself wondering what kept you from being bitter. Although we eventually would end up together, this was not the time in which it happened. I was simply a cook in the kitchen and you were a resident, a Quadriplegic. I could never imagine in my worst nightmares what you thought or felt that day so many years ago as the car you were in careened towards that utility pole. Eventually you awoke from your coma but with no real recollection of the accident. Everything you had once known had suddenly changed. Your body was broken, your brain had shifted and you were now facing what would prove to be the hardest thing you would ever have to deal with in your life.
 
Kelly Blake 2017

Somebody once told me I was RAD

Reactive attachment disorder is a rare but serious condition in which an infant or young child doesn’t establish healthy attachments with parents or caregivers. 

By Mayo Clinic Staff

I was in my early thirties when I was court ordered to seek counseling for a DUI. It was actually my second DUI so some sort of counseling was probably long overdue. My intention was to generalize my problems and gloss over my past. I had a number of required sessions and it eventually occurred to me that I would have to give her more to chew on. My repertoire was full so I could pull from just about any time in my life and talk through the whole session and then some. Having completed my required sessions, which included a standard Psychological Test, I finally received my hard earned certificate of completion and my Labels. Some words I had heard before, BiPolar, Depression, adult child of an alcoholic, anxiety and PTSD. Reactive attachment disorder was a new one to me. In all of my thirty some years I never could figure out why I failed at personal relationships. Very often it seemed as though it was easier to sabotage them then continue. Relationships always ended eventually anyway right? In fact that is how my life began with my own mother.

As a PreSchooler I was taken from my alcoholic and prescription drug addicted mother. I was placed in foster care, adopted and eventually placed back into the State System. I was never given any reason to get attached or trust anyone in my life, I just never knew it had a label. It seems fitting that this disorder is a rare one, and I would be one of the few children who would develop it. I was raised in the State System from preschool until high school, teaching myself lessons along the way. So just like the Seedling I wrote about, I was left in the dark with little or no nutrients, and I wilted.

I’d like to share a Poem I recently wrote about my labels.

Mindless Labels:

I Walk mindless, Carrying Depression in my backpack

Holding Anxiety in my pockets, RAD socks on my feet

I Wear a BiPolar Blazer to cover my Alcoholic body

Tongue pierced with Anger, Lips pierced with Fear

PTSD colored eyes wearing Rose colored glasses

-Kasper (kelly blake)

The Seedling

seed·ling
ˈsēdliNG
noun
 
  1. a young plant, especially one raised from seed and not from a cutting.
    Once the seed is planted it begins to grow. Seeds require attention and sustenance in order to thrive. Is this also not the case with our children? The seed is planted and with proper care and nourishment it develops into a seedling. But the seedlings journey doesn’t end there. It must be planted in nutrient rich soil and continued to receive sustenance and attention. If you place the seedling in a dark corner and do not encourage growth with nutrients it will not flourish. If neglected it will wilt and begin to shrivel.
    Children also require nutrients and knowledge in order to thrive. Allowing a child to live in poor soil, searching for ways to survive on their own leads to poor choices and bad habits. Throughout my Blog I will discuss many subjects rooted in abuse, neglect, labels, adoption, juvenile delinquency and living with disorders. These subjects are quite common but often difficult for people to talk about. Let’s Learn, Share, Grow and Heal together.
    Kasper (April 2017)

Come Join Me For Coffee

Hello! Thank you for joining me as I drink my coffee. My name is Kelly but I often refer to myself as Kasper. I will delve into that subject from time to time. I am married to a very unique, sometimes difficult man (aren’t most) who just happens to be part Transformer (he’s a quadriplegic). I gave birth to three children and now have a beautiful Granddaughter who I love to obsess about. I have Blogged from time to time, but this is my first blog on this particular platform. Please, stay with me and Look Back and sometimes Forward into the world of “kasper”. My thoughts are sometimes Chaotic but they always have a point. I also enjoy Poetry so I will toss a gem in every now and again. So sit back and sip your coffee and meet me right back here from time to time. I enjoy a strong cup of coffee with cream and sugar.

yours sincerely,

Kelly Blake (PettySwap) AKA Kasper (March 2017)