When Paul became an independent ward of the state of Montana, he also received medical care for his needs. This is common knowledge amongst those who work with Paul. He also gets a stipend for living expenses.
Yet...
the wrap around services and care givers completely forget that things like, compression socks, donuts for the wheelchair and Paul's comfort, his shoes, his foot care, his braces, mattress pads and gloves are all covered.
We have also told them that if Paul needs anything that Medicaid will not cover to let us know and we will get it taken care of.
So when I asked about these recently, I get back a comment saying that Paul needs money for some of the items that Medicaid will cover.
Once again, I need to ask them to look into what Medicaid will cover and get back with me.
The sad part is that the Federal and State programs have cut everything for our citizens with Disabilities and what was once covered may not be anymore. Each state is different in what they cover so this complicates things.
Ok, breathe.
The cool thing is that Paul simply goes with it and all the while enjoys his life. He is very lucky he doesn't need to worry about these things. We are lucky that we can communicate with his care givers in order to meet his needs. Not easy and very redundant most of the time but worth it to see him happy and safe.
Friday, November 28, 2014
Tuesday, November 25, 2014
Recent obstacles
Last Friday I finally decided to send a note via the Intranet website for Paul's caregivers and agencies. I connected (that Thursday) to the website called THERAP, which Opportunity Resources incorporated (ORI) within their agency, to communicate between the state case managers, caregiver agencies, ORI, doctors and family members. I discovered that Paul had been very agitated and acting out towards those individuals who come into his home and assist him with his daily chores and toiletries. No one called any of the guardians (me, my lil' sister-Anastasia(aka Stacey), and our mom--Ann). This is typical and one of the pitfalls and obstacles we have had to deal with over the past 24 years since Paul has been in Missoula...but that is a complete novel which I will disperse in sections in the future.
Anyway, back to what I read through the communications.
I found out that Paul saw his Primary care Physician, Dr. Lindley and with some issues he found with Paul's legs he said that Paul needs to get some "stockings". Paul became extremely upset and acted out trying to let them know that he wants "socks" not "stockings". The new people in his life were unaware that Paul is very set on what is 'manly' and "stockings" are NOT 'manly'. He also has not been getting cleaned in the shower and his shower was filthy! Paul is a very clean person and when his basic care is being neglected he doesn't sleep, doesn't like who ever it is that isn't doing what is needed. Paul also does not like being left out of the decision making process.
Paul had EVERY reason to be ticked off and since he cannot express himself due to his TBI and physical inabilities, he acts out and doesn't want anyone near him.
Now...as I read all I could think was that these people are idiots!!!! They work with TBI clients and they cannot see beyond their own list of duties and figure out that Paul is upset for a reason and thet need to resolve the issue with Paul.
Over the past 24 years this is what we as a family have dealt with. I realize they are only human and as I continued reading I discovered that there were several new caregivers in his home who were not familiar with Paul and Paul was NOT familiar with them. His short-term memory is pretty non-existent and change (of any kind) affects Paul negatively.
After several minutes...ok about an hour :-) to calm myself...I sent a letter explaining the basic information that his caregivers need in order to get Paul more comfortable with them and in helping him adjust to the changes. Again, I needed to remind them that they need to contact me or a family member when issues with Paul come up.
Now that I am on Therap, I need to remain more diligent in keeping abreast of what is going on. Paul's comfort, security, safety physically and emotionally are my prime motivators. I am his voice and his advocate. The past 24 years has given me the unique insight to know he needs me to fight for him even when everyone...including other family members...do not agree or are not listening.
It is a privilege.
I found out that Paul saw his Primary care Physician, Dr. Lindley and with some issues he found with Paul's legs he said that Paul needs to get some "stockings". Paul became extremely upset and acted out trying to let them know that he wants "socks" not "stockings". The new people in his life were unaware that Paul is very set on what is 'manly' and "stockings" are NOT 'manly'. He also has not been getting cleaned in the shower and his shower was filthy! Paul is a very clean person and when his basic care is being neglected he doesn't sleep, doesn't like who ever it is that isn't doing what is needed. Paul also does not like being left out of the decision making process.
Paul had EVERY reason to be ticked off and since he cannot express himself due to his TBI and physical inabilities, he acts out and doesn't want anyone near him.
Now...as I read all I could think was that these people are idiots!!!! They work with TBI clients and they cannot see beyond their own list of duties and figure out that Paul is upset for a reason and thet need to resolve the issue with Paul.
Over the past 24 years this is what we as a family have dealt with. I realize they are only human and as I continued reading I discovered that there were several new caregivers in his home who were not familiar with Paul and Paul was NOT familiar with them. His short-term memory is pretty non-existent and change (of any kind) affects Paul negatively.
After several minutes...ok about an hour :-) to calm myself...I sent a letter explaining the basic information that his caregivers need in order to get Paul more comfortable with them and in helping him adjust to the changes. Again, I needed to remind them that they need to contact me or a family member when issues with Paul come up.
Now that I am on Therap, I need to remain more diligent in keeping abreast of what is going on. Paul's comfort, security, safety physically and emotionally are my prime motivators. I am his voice and his advocate. The past 24 years has given me the unique insight to know he needs me to fight for him even when everyone...including other family members...do not agree or are not listening.
It is a privilege.
Saturday, November 15, 2014
Breathe
One of the first things I remember after we arrived at the hospital was that Paul had just made it through surgery. They drilled a couple holes into his skull, over on each side, to release the fluid pressure inside his brain. The doctor said he was in a coma and that best case scenario was that he would live maybe 10 hours. My mom, my older sister and I were in shock. I don't remember any of us saying a word until that 10 hours was up.
Thursday, November 13, 2014
Foundation of Love
Over the past 29 years I have celebrated my brother Paul by sharing his world, his passions and his love for life with the family that distance and time took him away from, with the friends he has met in his world and with my friends that celebrate Paul with me.
It has been 29 years since his horrible one car rollover in 1986, where he was given 10 hours to live. Seven and half months later, he came out of his coma and began his life over. I was 17 going on 18 and into my Senior year of high school. I did not have a clue as to what was going to happen to my brother or to our family. The first 3.5 years he spent with our Dad, Rod, and his wife, Kathy, with our little sister Stacey (aka Anastasia), learning how to talk, how to walk, and how to live again. What Kathy gave Paul was a life that has endured since he woke up that November of 1986.
He has since out lived and out shown any expectation of what a person was able to have after the severity of his brain trauma. He paved new paths and is still teaching those who work with him from his caretakers to his doctors to his friends and I think most importantly to his family. I have been so blessed with his gift of life and the love he shares with all who come in contact with him. I am very protective of my brother Paul. I love him so much and want to share our experiences with other families, friends, and caregivers of those with TBI (traumatic brain injury).
For this reason, I am creating a foundation for Traumatic Brain Injury in celebration of Paul. The roads I have been on with him have not been easy. His fight and zest for life simply wouldn't and still won't quit. As he gets older we face some very heavy decisions as to his care. I know if my brother could express his thoughts he would want to help others in similar situations and support them on their journey.
This blog will be about Paul's journey up to this point and to whatever and wherever the future takes him. I will be his voice as well as share what I have learned so others may be assisted with their journeys.
Once my foundation is up, I will link this to the webpage where those who visit it will have free access to anything and everything about TBI. My hope and prayers is that our family's experiences will help TBI victims, their families, their caregivers and those medical professionals through the many, many challenges and opportunities ahead of them. I am hoping that a strong support community will grow from this and that all of our legacies will enhance the future treatment and care of those who are affected with TBI.
It has been 29 years since his horrible one car rollover in 1986, where he was given 10 hours to live. Seven and half months later, he came out of his coma and began his life over. I was 17 going on 18 and into my Senior year of high school. I did not have a clue as to what was going to happen to my brother or to our family. The first 3.5 years he spent with our Dad, Rod, and his wife, Kathy, with our little sister Stacey (aka Anastasia), learning how to talk, how to walk, and how to live again. What Kathy gave Paul was a life that has endured since he woke up that November of 1986.
He has since out lived and out shown any expectation of what a person was able to have after the severity of his brain trauma. He paved new paths and is still teaching those who work with him from his caretakers to his doctors to his friends and I think most importantly to his family. I have been so blessed with his gift of life and the love he shares with all who come in contact with him. I am very protective of my brother Paul. I love him so much and want to share our experiences with other families, friends, and caregivers of those with TBI (traumatic brain injury).
For this reason, I am creating a foundation for Traumatic Brain Injury in celebration of Paul. The roads I have been on with him have not been easy. His fight and zest for life simply wouldn't and still won't quit. As he gets older we face some very heavy decisions as to his care. I know if my brother could express his thoughts he would want to help others in similar situations and support them on their journey.
This blog will be about Paul's journey up to this point and to whatever and wherever the future takes him. I will be his voice as well as share what I have learned so others may be assisted with their journeys.
Once my foundation is up, I will link this to the webpage where those who visit it will have free access to anything and everything about TBI. My hope and prayers is that our family's experiences will help TBI victims, their families, their caregivers and those medical professionals through the many, many challenges and opportunities ahead of them. I am hoping that a strong support community will grow from this and that all of our legacies will enhance the future treatment and care of those who are affected with TBI.
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