Archive | March, 2017

Back home but feeling unsettled

31 Mar

It was hard to say goodbye to my brother on Wednesday, hop in the car right after the funeral and start our trip back home. Unfortunately that was the way it had to be.

The funeral was so so special. The little chapel was full of his co-workers, caretakers, and ARC employees who were teaching him to sing and draw! He was becoming quite an artist. To watch the wheel chairs and the other challenged friends of his all go up to the casket was heart wrenching. His Sunday school teacher did a wonderful job overseeing the funeral and he had some great John stories. It was interesting to know that John read the bible during the week and they would discuss on Sunday mornings. Such a special brother.

Billie and I rode back to Topeka that afternoon and it was wonderful to have some one on one with her. That happens like once every 5 years! Denny and Ispent the night with Cindy and Chuck and then were up very early to get home in time to pick up Jumper and Bendi. They were so happy to see us and us them.

The house is in total turmoil. Denny is putting new flooring in our bedroom. I love the new blue he painted the walls. He has to use the table saw in the office area due to the snow. I spent all morning with Justin and then a phone call to our internet provider trying to get our internet back. Thank goodness, it is up and running strong. I just spent the last 2 hours working on reservations and confirming some online dates. Now, I have to think of the next project to start on. Of course I would love to sew, which may just happen because we are expecting about a foot of snow.

We are both going to get back in a healthy eating routine. After literally sitting by hospital beds for a couple of weeks I am seriously bloated. Once again, I definitely hope to incorporate exercise this season. I really must because my heart is going to get squishy.

I feel weird just blabbing on. I feel like I need to be quiet and still and mourn. But, is mourning even a possibility for anyone? You have to go back to work, go back home, go on with life……. It doesn’t feel good to me.


26 Mar

IMG_2744Who knew when I came to Springfield, MO on March 8 that my brother would pass away 2 weeks later. Very surreal at this moment,  isn’t everything surreal at 2:30 in the morning.

The day started out nicely. Yesterday John was transported to a hospice facility in Bentonville, AR called Circle of Life. They had been visiting John while in Holiday Island. It was time to get him set up in the comforts of a hospice setting. After he arrived, it took awhile to get him settled and comfortable. The staff was great getting him the right meds so he wasn’t squirmy. While I stayed with him at night in Holiday Island, I did a lot of CNA duties: placing pillows, moving him in bed, breathing treatments, fluids, feeding him. So……last night the CNA’s came in every 4 hours and repositioned him. They kept him dry because he was perspiring so much. I could push the button and someone was there to help. Jolene and I spent the night in the room with him. This afternoon my nephew John and his family came by for a visit. They all said hi to John but he was unresponsive. We hung out in the main area and played cards while Jolene rested in the room with John. Around 4 pm it was just John and I in the room. About 6 I noticed his breathing was getting quicker. I could feel and see a huge change in him in a few minutes. We called for the nurse. She checked him and said this is normal. I asked her if it was imminent. She said no but asked the aides to come in and change his bedding once again because of his sweating. We came back in the room after 5 minutes and they had the bed more upright and I could see that John had his eyes wide open looking at something “out there”. I hope he was seeing Dad and Julie and they welcomed him into their arms. I knew it was happening. I pulled a chair over and held his hand, talked to him and listened as his breathing changed. It happened so fast and then he was no longer in pain.

It was exactly the right time. Bob had just arrived and taken Jolene to get checked into hotel, my nephew John said he had a feeling that he just needed to stay with me, Judy was with my Mom. John knew it was the right time to go. Wow.

“Then the blind people will see again, and the deaf will hear. Crippled people will jump like deer, and those who can’t talk now will shout for joy” Isaiah 35:5.6  I believe John will be relieved of his disabilities and be whole and healthy in heaven. I’m not a knowledgeable bible person, but we were talking earlier this week about some passage regarding those who are disabled and what happens when they enter heaven. I love this passage.

I’m going to try and go to sleep. No need to rush around tomorrow so I may just stay in bed all day. Arrangements will be made on Monday. I wish Denny and my puppies were here. I’ll hold on to Jumper the stuffed dog. I bought him when John was first in the hospital and Jumper pretty much was in John’s bed the whole time.

Thank you, thank you, thank you for the kind notes and thoughts from so many friends from all over the world. It really helps when you are somewhere away from friends.


He ain’t Heavy, He’s my Brother (he is a little heavy for me to move him)

22 Mar



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.