My brother and I were quite a pair. He with a mental handicap (I can’t say mentally retarded) and me losing my hair at 2 and it never growing back. We were born 13 months apart. We were pretty good buddies until around junior high years. His mental capability is around 9 years old so I never really knew anything was wrong until I became older and he stayed the same. We went to the same school since Highland Park in Topeka had Special Ed. No integration at that time. As he grew older, his emotions changed and he moved to Parsons, KS to attend a new program that would teach him how to work, count money, clean buildings etc and live in a group home facility. I’m not quite sure how I felt about it. I know I felt guilty because a lot of our issues were between him and I and a lot of fighting, I mean really fighting with hitting and me running out of the house scared. His favorite story to tell about one of our fights was when I was in 6th grade. He called me some name and a punched him the head and broke my little finger. It was literally sticking straight out. Unfortunately my parents were away and my grandparents were staying with us. Being a grandparent now, I’m sure she wanted to be done with the both of us. For years, anytime we were all together, or he would meet one of my many husbands, that would be one of the first stories. When he was 21 he became a ward of the State of Missouri which had an outstanding system for the older mentally handicapped. He lived in group homes with round the clock care. He alway had his own room and worked many places.
John and I grew apart for several years because for some reason him being around me would just set him off. I felt badly about this, but also glad I didn’t have to be around him. Not a very nice sister for a while. I went through a phase where I would be embarrassed to be with him. Not a good sister. Remember that television show that had the Down Syndrome brother on it, and how loving they all were. Not all families with a mentally handicapped child or family member are like that. It can be very difficult and stressful. Thankfully some medications really helped his moods and once again we could be with each other.
John would obsess all the time about his birthday. He would start the day after his birthday on December 29 and tell you when his birthday was the next year the entire year and not to forget to send him a birthday present. Oh the trouble he would get in from all of us and he would be told over and over he couldn’t talk about his birthday until Dec. (will that date ever feel the same now?)
One thing I have thought about being with him these last couple of weeks is how alike we are as far as being social. He has many friends in Monet, MO. When he would meet you, he would always talk about the gas prices, when the time would change and the weather. He would also ask you your phone number and if you gave it to him he would call. He could memorize everyone’s phone number
My Mom and Dad lived near him many years when they moved to Missouri. It was always a treat for him to come and see them for the night. He never wanted to be away from home too long. Now most of you know that I am a slob, I won’t sugar coat that. John was a neat nik and his bed was made, his shoes in place and don’t even touch anything in his room because he would know it. I wish I would have received a little of that neatness.
My sister Judy has been his guardian for several years and she only lives about 1 1/2 hours away from him. During the holidays we would all take turns picking John up and taking him home. Stopping for a gigantic fountain drink was always part of the trip and for some reason he and I would get into it over some silly thing, I can’t even remember what it was now, but he would apologize by saying “I’m sorry, I’m sorry, I’m sorry”. Now I want to repeat that a million times to him. Why couldn’t I have had more patience with him in the short time I would be with him.
John loved jewelry, clothes, boots and hats. If you would show up with something on that he liked, you would either end up giving it to him or sending him one! When I arrived this trip he loved my fleece vest that I had embroidered mountains and La Veta. For several days in the hospital he made sure that he was going to get it. He will have it. He has on his watches, rings, bracelets now.
He has missed my Dad terribly since he passed away in 2009. The other night he told me needed to see Dad. I know he will be seeing him and that Dad is waiting. Did you know there is a hymn that says something to the effect that “you may be disabled now, but when you reach heaven you will be whole again”. I need to find that.
Denny began sending him singing cards for maybe 5 years once a month with a $20 bill inside. Denny would play all the cards for me and be happy when some new ones would come out. When John received them he would call my Mom and play the card for her.
John has become very fragile over the years and has had hip replacement, a totally rebuilt femur, survived being septic a couple of times, and a couple of cracked and broken tail bones and pelvis. His pain tolerance is astronomical. Once he had a broken hip for a month before it was discovered. He would just say his hip hurt after he fell off of his bike. That’s another thing I don’t have is pain tolerance, as many of you know.
When I received the call from my sister Judy on March 8 that John was very sick with sepsis, UTI and pneumonia, I decided to fly up to Springfield, MO to spend time with them as he recovered, which he did. He was literally gone and they brought him back. That’s why he is my superman. So, the weekend of March 12, the hospitalist began talking about him going to rehab to learn how to walk better and get stronger. That Sunday I mentioned that he was in a lot of pain when they moved him around in the bed. He set up an Xray of the hip and a Catscan of his stomach. His blood work was out of whack also. He also had a lung biopsy and was hallucinating and very confused like he had dementia. After the tests they discovered that he had cancer in his bones and it had eaten away one of the vertebrae, causing severe pain. Oh my God, this whole time he is such pain, he can’t really relay to us how bad it was. We talked again with the internist and he said that he should go to hospice and get on the comfort program and that he probably had a few weeks. Wow. A big shocker. On Monday the oncologist came in who was a very irritating person. He started in on us that we were jumping the gun and that he wanted to pinpoint where the cancer started and that he could give John 3 weeks of radiation to ease the pain in his back. Also he thought he should have a PET scan. I was getting madder and madder because this same doctor had seen John a few weeks before with bad blood results but sent him on his way. So…I said “if you are so concerned now about him, why don’t you call the lab and put a red flag on his lung biopsy so we can find out what the hell is going on??” He sputtered about dyes and slides, etc. We said “no” to any other treatment because of his severe pain. He was mad and left the room. The internist came and talked to us again and reassured us we were making the right decision. He was soooooo kind and caring and a good listener since we were caught so off guard.
We transported John the next day to the same facility where my Mom lives in Holiday Island, AR. My sister Judy lives there also so it’s easy for us to be with John. Jolene flew down, Denny came up from Texas for a few days but is now in La Veta working on the rv park. John was immediately put on meds and the process began. In this short amount of time he has gone from being able to walk with a walker, feed himself and communicate to now entering the not eating phase, but he still will eat ice cream!! He sleeps about 22 hours a day and one of us is with him at all times. He knows us but tonight he is not responding to me as much. He has had his eyes open quite a bit but I’m not sure what he is thinking or seeing. I hope he isn’t afraid? I cry every night as he looks at me. We tell each other we love each other and give hugs and kisses and we feel very close. It’s like I am having a normal brother/sister relationship with him for the first time since we were little. My heart aches so badly I can barely handle it. Of course I’m a little manic from the staying up all night with him. These silly hospital beds, the sliding down, the pillows getting all messed up as we try to pad him from the rails, it makes for a busy night. I am determined to invent a comfortable non slidable pad that won’t cause all these issues for patients in hospital beds. One night we had him all settled and comfy, (great staff at night who help move him around in bed) and I got settled in my chair. In about 15 minutes he was squirmy and I got up to check on him and a pillow was right over his head. Yikes.
John always had a girlfriend and loves the ladies. They have all fallen in love with him at the hospital in Springfield and here. He would have been quite the charmer I do believe. Probably married as many times as me!
That’s it for now. It’s 2:45 am. He just had his pain med and is not squirmy.