Do you want to know why I’m SAD?

Separation anxiety disorder (SAD) 

An anxiety disorder in which an individual experiences excessive anxiety regarding separation from home or from people to whom the individual has a strong emotional attachment (e.g. a parent, caregiver, significant other or siblings).


 I was a Preschooler when the person I depended on for all my basic needs was taken away from me. After a few years of adjustment with my new family I was ripped away yet again and given to another family. Then at age fourteen my relationship with my two siblings was forever changed. I was on my way to a new home yet again. I suppose I could have adjusted if I hadn’t lost so many important people from my life in such a short time. There was nothing permanent or even long term in my life. I actually became quite adept at sabotaging most situations in my life. I had very few friends and literally no family in sight. I figured out a few years back that it was easier to avoid relationships then form them. At the same time I find myself struggling with loneliness. The few close friends that I do have I am very possessive of. They are mine, all mine and it is difficult for me to share. If I don’t hear from friends I start to imagine they have abandoned me. But my true fear of loss and separation became clear to me when I found it difficult to throw away empty containers and boxes. I could easily make up the excuse that I could use it for something. I thought for many years I was being frugal by recycling used items. Eventually I was forced to face my “collecting” habits head on when my Husband started making jokes about my cardboard forts in the corners of my bedroom. The first time I had to break down a stack of boxes and throw them out, I actually had a slight panic attack. That is when I knew for sure that it wasn’t about reusing or recycling, it was about holding onto even the simplest of things. When you lose so much in your life it becomes easy to develop habits of hoarding. Now you know why I am SAD.

Kelly Blake 2017

Senator McCain Doesn’t Care

Before you sit down and get comfortable, grab your preferred beverage and maybe a snack.We might be here for a little longer than expected. I am the wife and caregiver of a Quadriplegic man. When I met him he was already Disabled so I was not around to fight for his basic rights and needs. I have been in his wife since 2014 and have to always make sure he doesn’t get overlooked or swept under the carpet. Last year I sent emails to Senator McCain’s office located in Tucson,Az. I wanted them to hear me and hopefully help me with my husband’s SSI Benefits. Or at least give me answers or options. Initially I did receive a response. “We need a signed Authorization Form to have access to your SSI file”  His office stated in a returned letter. I sent the form back to them almost immediately. Unfortunately I had to send it again because the first one we signed Digitally and they needed actual signatures. I waited patiently for a response but still never heard anything. I thought to myself, well, it’s near Election time, so the office is probably pretty busy. I’ll wait a little longer. By the new year I still hadn’t heard from them so I sent another email inquiring about my original emails. Again I receive the request for authorization. I explained to the person who was emailing me that I had already sent the form. I remember sending it because I complained to my husband that the Senator’s office couldn’t even bother to send a SAE. Shortly after this last email we did receive a letter stating that they had contacted our local SSI office and as soon as they heard from them they would contact us. So now here it is the middle of May and I still have no response. The reason i’m writing this in a blog is so that I may get a wider reach and hopefully force a response from my local Government.

Before I begin telling you the basics of what I wrote in my email, let me explain to you that I am well aware of the basic Parameters and Laws of SSI. I do understand that these Parameters are in place to be “fair” but also to avoid any form of abuse or fraud. However, I do believe in some situations that certain individuals should be given a more thorough look see. My husband is on SSI Disability Insurance due to a car accident that he was in. He was not the driver nor did he cause the accident. My husband was twenty-nine at the time of this accident. Still pretty young don’t you think? Let me ask you a question, how many of you reading this can say that you had your life all figured out by twenty-nine? Probably not too many of you did. Prior to the accident my husband worked a lot of side jobs such as construction and basic maintenance. A lot of young men take these jobs because they pay cash in hand for a hard day of work, No waiting for a paycheck or a Bank. Pretty appealing situation if you don’t mind manual labor in the Arizona heat. Most people at twenty-nine are not thinking about the future or the “what ifs.” I bring all this up because it’s a major factor in my husband’s SSI allotment amount. See, he paid very little into taxes back then so his SSI amount is pretty low. I understand you get paid what you pay in. I guess he should have planned the car accident better. I’ve tried several times to get my husband on the basic SSI but I keep being told he doesn’t qualify. Someone had even told me that he could draw off of his parents SSI if approved. I guess he should have planned the car accident better. He would have had to become disabled before the age of twenty-one in order to do this. He should have planned it early enough in his life or made sure he paid a butt load into his taxes if he wanted to receive a decent allotment. Remember, he was the passenger and not the driver. My next issue involves me personally. I feel like I should have the right to marry the person that I love and want to spend my life with. However, if I had known how much our marriage would impact his SSI benefits, we probably would not have gotten married. So now two years into our marriage we have had to talk about the “what ifs.” What if we just get divorced? What if we move to a different state? Why is this something we should have to think about? My income affects his SSI Disability amount. I make the basic minimum wage in Arizona. Ten dollars and hour at thirty-seven hours a week. I can not make any more or any less. I get no vacations or days off and obviously no overtime. The other reason for my husbands SSI amount is that SSI feels whatever the husband doesn’t make the wife can make up for. Which is understandable for the most part. However, my husband is a Quadriplegic and is 100% dependant on me for his care. If I was able to leave him for six to eight hours I would consider working a second job to make up for his very small amount of SSI. I’m not afraid of hard work, and I would do anything to improve my situation if I was able. So let’s review the situation real quick. He should have worked a lot harder because he was planning to be in a car accident at age twenty-nine. However he should have planned the accident prior to turning age twenty-one. Once he became a Quadriplegic, he should have never dreamed of getting married. Once he was married, he should have expected his wife to work herself to death in order to afford their basic needs. I think that sums it up pretty well. So what options do we really have at this point? Get divorced? Move out of the State? Or would our Government prefer me to neglect my husband’s basic care so I can get a second job. That would mean he would sit alone in a house for hours with very little water and no food since he is incapable of getting his own. I’m no slouch, I rack my brain for hours, day after day, trying to figure out ways to bring in extra cash income. I’ve looked for discounts and services that might help us afford the basics. We do actually qualify for sixteen dollars in food stamps because we’re just poor enough. I think the whole system is a mess and people like my husband get lost in a big pile of crappy papers on someone’s desk. I know it happens to many more people than just my husband and I. I also know that our pleas fall on deaf ears. I have asked for help and now i’ve resorted to “begging” online just so that I can hopefully afford to get a ramp installed into our van. If I am forced to just barely get by, i’d like to have the ability to get outside with my husband. That way we can watch the sunset while we are getting screwed. Even if nothing ever changes for us, at least I can make myself heard. So many people in our government are living a life that people like us could never even imagine. And by that I mean, the ability to pay bills on time and the ability to afford basic necessities.The ability to live without wanting to break down and cry everyday.

Thank you for taking the time to read my story. I’d like to hear your opinion, and if you have a similar story, please share it with me.

Kelly Blake 5/2017

The Caregiver Diary: The Stand Still

In the Beginning

When I made the decision to become Wife and Caregiver I knew it wouldn’t be an easy task. I knew there would be lots of sacrifices on my part. This Relationship would prove to be the biggest challenge I would ever have to face. When we were married, we lived in town. After the first year we made a joint decision to move from our little townhouse. There were several factors involved in this decision but we felt it was for the best. A friend of mine was keeping a watchful eye out for a new place for us because this move was fast sending me into a frenzy. There were so many things had to be taken into account. Most people can simply look at location, size and price. We had to factor in Wheelchair access and bathroom space amongst other things. Eventually my friend spotted a little hole in the wall in a neighboring town. Time was running out on our current lease so I knew I had little choice but to find a place quickly because I can’t really be homeless with a Disabled husband. We contacted the owner and made a deal. I thought at first that this would be just the peace of mind that we wanted. We are now approaching the end of our second year out here. The first year was busy, the kids lived with us most of the year and although that was extremely stressful it was nice having company. I’m not sure if people really realize that when you are a live in Caregiver, your job never ends, so any little break from the monotony helps a lot. After the kids left and the friends faded I started to really feel the affects of being isolated. Each day I sink a little bit further into the pit of depression. I thought moving out here would be great even though we didn’t have a reliable vehicle at the time. After our first year we were lucky enough to get approved to buy a van and I thought for sure we were finally catching a break. I would soon find out exactly how wrong I was. When we bought the van we had high hopes of paying it off and converting it into a wheelchair van. Someone we relied on for medical transportation had told us that it would only cost a couple thousand to convert. We eventually found out that this was very wrong information. The cost of a conversion is at least Ten Thousand dollars. Ten Thousand dollars that we will never have. So now here I am in my second year of isolation, with no real hope for anything better.

The Stand Still
When we moved to a more isolated area I said I could deal with it as long as we got a vehicle to get back and forth to town. I know that even though I enjoy my privacy, I also need socialization. So now I sit here staring out the same window everyday with tears in my eyes. I never thought my life would come to a complete standstill at Forty-Five. I see life happening all around me and it dawns on me that I won’t ever have that life. I see people fishing, swimming, vacationing or even just hanging out with friends and it hurts. I understand I made this life choice and my love for my husband is no less than it was the first time I realized I loved him. I just never expected to live my life in isolation and I am truly not sure how much longer I can actually do it without losing myself completely. Everyday I feel myself getting more depressed and bitter and I don’t want to be that way. So I guess for now i’ll just sit her staring out my window daydreaming and trying to remember what it was like to actually have a life.
Kelly~ 2017

We went on a road trip once, and I lost my ID

It was May 13th, 1977 when we took our road trip to Poplar,WI. I was only Five and a half years old then. Road trips are always exciting but this one felt different somehow. We were going to visit someone from what I understood but I wasn’t exactly sure why our mother wasn’t with us. The only thing I was sure of was I had my hard pink suitcase that carried all my little belongings. We eventually arrived at a quaint little A-Frame house with a large St. Bernard. The family seemed really nice and very happy to see us. Before I knew it, the car that had brought us to the house backed out of the driveway, and left us behind. They never did come back for us, and nobody ever brought our mom. Once I was old enough to understand I learned that the house we were brought to was called a Foster Home.

Foster care: A system in which a minor has been placed into a wardgroup home, or private home of a state-certified caregiver, referred to as a “foster parent”. The placement of the child is normally arranged through the government or a social service agency. The institution, group home or foster parent is compensated for expenses.

Foster care started as a result of the efforts of Charles Loring Brace.

Brace believed the children would do best with a Christian farm family. He did this to save them from “a lifetime of suffering” *Nordmark, Oliver. “Orphan Train History.” : REVEREND CHARLES LORING BRACE. N.p., 09 Feb. 2010. Web. 19 Oct. 2013.

We lived in this Foster Home for a couple years while we waited for our mother to come for us.This is something that never happened. They told us that she showed no real interest in getting us back with her so they ruled our case as Abandonment. We were eventually put on a list for Adoption. At age six I never even knew there were differences between us and the family that we lived with. I wasn’t even aware until I was Adopted that I was “Native American”. I just thought I was a kid, like everyone else. I realized later on just how wrong I was.

Transracial Adoption: Placing a child of one racial or ethnic group with adoptive parents of another racial or ethnic group.

When you adopt a baby, do you take on responsibility for fostering the child’s connection to the culture or cultures of origin your baby leaves behind to join your family? Or do you just try to integrate that child into your own family’s lifestyle and culture? Having been born part Native American I should have been privy to my family’s history and culture. Instead I was raised in a Lutheran household with parents that were from Finnish and German descent. Never the wiser that I had lost a lifetime of culture because of my Adoption. I came from a proud nation of Chippewa Indians. I learned about my family and culture on the internet. I was the poor little Indian in a white person’s world. I am not necessarily Anti Adoption, but I am most definitely Pro Education. I believe in the preservation of culture. I am not against Transracial Adoption if culture and heritage is taught and preserved. I have been angry all of my life because I know nothing of my family or culture except for what I find on Google. Forty years of culture lost even after the The Indian Child Welfare Act of 1978 (ICWA) was established. Even after 1978, Native American children were placed in Non Native homes.

So to recap, In 1977 I went on a road trip, and that’s where I lost my ID.

Kelly Kasper ~Blake (2017)

I’m Fine

Depression ~ A common but serious mood disorder. It causes severe symptoms that affect how you feel, think, and handle daily activities, such as sleeping, eating, or working.


Depression: The result of fighting a War against things I don’t want to remember ~Kelly Kasper

I don’t know what it’s like to physically drown, but sometimes I imagine how it might feel. To Drownsubmerge or flood.

When I am a on a LOW I often feel like i’m drowning. Submerged in emotions and flooded with sadness. Struggling in a sea of darkness, forever reaching for a helping hand. Searching for an air hole to breath out of. I wish I knew how to swim a lot better, but i’m great at treading water so I am able to stay afloat. What I have learned over the years is that I must always stay aware of myself. I don’t always recognize right away when i’ve reached my low, but when I do I take note of triggers. Recognizing triggers and being aware of yourself is the best way to fight self destruction.Depression affects so many people. It has the ability to destroy so much. Self awareness is your best ammunition.

Kelly Blake ~2017

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)

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