It is Labor Day and as I was reading the TLogs I want to say thank you for picking this back up. Communication is important! Without it so much slips through the cracks.
Yes...it takes a few minutes but the BENEFITS supersede any and all reasons not to do it. Allow me to share a few insights.
Our Dad, who died 11 years ago, taught me to fight for what I believe in and my family...even if it means stepping on a few toes. I look back at when Paul spent 7 1/2 months in a coma, then another 5 months getting ready to go home. The doctors and services were saying put him in a nursing home and forget about him as he will never be able to have a life. Dad and our step-Mom said "Like HELL we will!" They took him to Bigfork and spent the next 4 years helping Paul gain Independence. He came to Missoula after that and has been the awesome, amazing Hero and person that you have the privilege of knowing and working with. This attitude has kept him fighting through the ups and downs of his life.
Let me tell you of a time, in the not so distant past...(2 years ago) when Paul's services stopped communicating. At first it was a matter of inconvenience due to limited time, over-worked staff and too many things to do. However, within a couple months Paul was neglected. He was left to shower by hisself and couldn't get clean, he began falling again, he was showing up with bruises and scratches. He wasn't eating and lost a lot of weight. He was short-tempered. He was angry. He acted out. His apartment smelt like a sewer. His bathroom was filthy. His refrigerator had out-dated items and he was taking the same food to work everyday.
We, as his Family and Guardians, stepped in as soon as I possibly could get my little sister, Anastasia, there to find out what was going on. She was the nice one. If I found Paul in the state he was in, where it took 3 hours to soak off the poop from his backside and two weeks to clean the urine off his clothes, shoes, carpets etc. I would have gone Ballistic! My sister was devastated to say the least. We removed those services and the main care-hab trainer. Obviously for very good reasons.
I am NOT saying this is happening again however, when I get nothing in ways of communication and I get rudimentary, blah responses I question what is going on.
My brother WILL NEVER be mistreated again! I will do all I can to support and assist his services in order to provide Paul with the best possible care.
I ask one thing and one thing only...and that is to "Communicate". I do not care if it is a once a month phone call for months things are going well and smooth. Or an email every two weeks to just catch me up on what is going on. A Notepad for the caregivers to communicate in when they come in after each other. A T-Log. I am open to any of these.
As for a computer in Paul's apartment. A computer/laptop is not an item Paul can afford and he will never use it. It provides nothing in way of human interaction, which is what Paul desires above all else. His money needs to go towards "outings" and "games" plus those items he needs for toiletries and personal care that his "services" do not pay for. The cost of the internet each month is money that needs spent for things Paul uses. It will also be too involved for the caregivers to use with Paul as he will never remember any of it and will lose interest. Yes, it is one solution but it is not viable for Paul and his situation.
I realize that there may those who disagree or feel different. I realize there are those who do not like "ME" or my involvement. I do not care. Paul is my brother and I will do all I can to protect him and make sure he is living the life he loves and wants. I realize his situation better then I feel you give me credit. I have been with him all my life and I was the one who has fought with and alongside those services working with Paul as well as against those services who did not do their job and neglected him. I am here to work alongside you. I am your conduit however, I am Paul's Advocate and Guardian first.
I have never felt like an adversary to his services. I am a defender and resource. Please do not cause me to rethink this position.
Shana (sister and guardian)
