Blog Entries posted by Longjohn
I knew it was coming but I still cried.
My wife has abdominal pain. To change the bed or put her on the bedpan I have to roll her on her side. There is no other way to do it. When I do she moans and groans and pushes back to try to get back on her back. I’m trying to hold her on her side while I am doing what I have to do. One hand holding her up and the other doing everything else. I guess I’ll just have to keep her doped up on morphine all the time because I never know when she needs to use the bed pain. This is getting depressing, it wasn’t a fun job to begin with. I just needed to vent.
And it’s not for sissies. I’m going to talk about what it’s like sometimes and you might not want to read this.
My wife has been getting weaker for a full year. After she was diagnosed with a brain lesion she had a strong radiation treatment. She was still walking on her own at this time. The radiation oncologist referred her to a medical oncologist to continue treatment. She started losing strength day by day after starting chemo. At first I would help her to the car and drive her to the cancer care center. At the CCC I would get one of their wheel chairs for her because they make you check in and go from one end of the building to the other and back again.
She started having trouble with our stairs and I would have to get behind her and push and lift on her butt to get her up the stairs. On the way down I went in front of her and held her hand. I could see this getting worse so I searched online for a used stairlift. I found one on eBay and bought it only to find out the guy had already sold it. It took me three days to get my money back. I couldn’t wait for that so I went to Craig’s list and found another one. Craig’s list works a little better than eBay and I was able to contact the seller before buying it, in fact I didn’t even pay online but gave him cash when he delivered it. I thought I was all set now until the first day we used the stairlift she still had to walk out to the car and we had a total of three steps between the house and the car. She fell on the third step, I managed to get her back on her feet but realized I would need to build a ramp.
I called my son’s father in law when we got home from the doctor. He came over and made some measurements and a list of materials I needed. I picked them up that evening and gave him a call. He came over in the morning and we built the ramp. That worked pretty well until the end of the year she was having a hard time standing and walking. I moved a commode chair right next to her recliner so all I had to do was help her to her feet and turn her a bit so she could sit on the commode. The last week of the year she was losing strength daily and I was afraid we wouldn’t be able to wait for Monday’s doctor appointment. I ended up calling an ambulance for her on Friday evening to take her to the ER.
Our son and I spent the entire night with her in the ER as they ran test after test. They finally discovered she had a UTI just before they were going to ship her to Pittsburgh where they have brain doctors. They started her on IV antibiotic and admitted her to the hospital. She spent a week on the sixth floor getting the UTI under control and another week on the fifth floor getting physical therapy to try to get her back on her feet. They were unsuccessful at that and sent her back home by ambulance and put her on hospice care.
We have an RN visit on Mondays and Fridays for about a half hour and an Aide on Tuesday and Thursday for about a half hour. The rest of the time it’s up to me. I’m getting pretty good with getting her on a bedpan and wiping her butt. I have a couple hundred pairs of rubber gloves to make the job easier. I keep my phone with me where ever I go around the house so she can call me when she has to go. Usually she wakes me twice a night when she thinks she has to poop. When you are bedridden you can never trust a fart. Better safe than sorry. Changing the bedding while the patient is still in the bed is not an easy task.
I somewhat enjoy giving her a sponge bath. I keep the house real warm so she doesn’t get chilled and massage her as I wash her. She seems to enjoy her bath. I tell her how much I love her all the time, after everything is washed I put special body lotion on her because her skin is so dry. I bought her a half dozen hospital gowns because they are the most practical thing to wear when she is in the condition she is in.
We are accumulating quite the assortment of medical equipment. She had a walker from when she had her hips replaced. She used that during physical therapy but they suggested a wheelie walker for her trips to the bathroom. We got one but she never used it. I had a shower chair and adult commode chair from when I broke my hip. She wanted a wider chair because she has wider hips. Now we have two of each. We have a hospital bed complete with the mattress that continuously changes air pressure in the different sections to help prevent blood clots and bed sores. We didn’t have any sheets that size so I bought some twin bed sheets to get us started and ordered hospital bed sheets on Amazon.
We had just about weened her off her steroids before she went to the hospital. They put her back on them. They give her a good appetite but I’d like to see her get off them. Who knows what side effects she is getting from them? They are known to cause weakness and that’s her biggest problem right now.
She slept most of the day today, I don’t think I like that. I would like to see her more active. Well I guess I jabbered enough tonite, I just wanted to say what was on my mind. I’ll try to get back to this and give an update later.
I have been taking a certification course from Crisis Response International to be certified as a responder. The course was a lot more extensive than I expected when I signed up but tonight I finished my certification. With all the hurricanes, floods, fires, etc. going on these days I figured I should do what I can to help.
I have been working with Zane a 16 year old non-verbal autism boy at church for about four weeks now. I would love to see a breakthrough but realistically looking at it if he hasn't had a breakthrough in 16 years who am I to expect anything now. Anyhow I was at a swimming pool about an hour south of where I live on Friday and there were only four or five people at the pool. I started talking with the one lady that was there and somehow I started telling her about Zane. She said that is really odd because she used to work with a little boy with autism who's name was Zane. She asked me if his mom's name was Lisa and I said yes. We both were talking about the same kid. She works at an autism center and she said she always wondered how he was doing now. I told her how much I was hoping to see a breakthrough, at least enough that he could communicate because he gets so frustrated at not being able to talk. I asked her if there was much hope for someone that still couldn't speak at age 16. That's when her boyfriend who had been sitting beside her on a lounge chair spoke up. He said he had autism and was non-verbal and he didn't see any breakthrough until he was an adult. He said he was about 18 years old when things started to come together for him. I told the director of the ministry I am working with about this meeting and the boyfriend who's name is Shawn and his coming out of his prison of autism as an adult and her mouth dropped open. She said: "You met Shawn?" I have his book, I'll bring it in for you to read. He has written a book about his experience growing up being autistic and the frustrations that he had. He now works as a reporter for a local newspaper. I am expecting a great breakthrough with Zane, this "random" meeting was destined to take place to encourage me to press on and not give up with Zane. I can see so much potential in him that just can't get out.
I am really healthy but I'm not as healthy as I once was. Old age has a way of messing with people. Crashing used to cause me to spend money buying parts to fix my bike. Now that I'm older my bike always survives the crash fine but I get beat up and broke. A couple crashes ago when I hit the deer and broke my collar bone and shoulder blade my wife told me I was lucky I didn't break my back/neck or die. I shrugged it off but I'm beginning to think about it more. This crash in April my broken rib healed up pretty well but the ortho doc said my shoulder will always be like it is now. I have a new primary care doctor that is going to hook me up with a shoulder specialist to see if there is anything that can be done. I can still ride ok and I can run. Two out of three isn't bad for someone 67 years old but it sure would be nice to be able to swim again. I can still swim enough to not drown but not good enough to compete. I swam two hundred yards at a nice easy pace and my shoulder was killing me. Every stroke I could feel/hear my scapula and my clavicle clanging together. Maybe my ortho doctor said they can't do anything because my Medicare Advantage plan won't pay them enough? If this injury really isn't fixable then it's good I did it after I retired because I would never be able to do my job the way my shoulder is now.
On the bright side five years ago I was diagnosed with Lymphocytic Leukemia. A throat surgeon removed a couple lymphomas from my neck and my oncologist has been monitoring me ever since. She says that my type of leukemia is incurable but slow progressing. I have blood work done every six months and visit my oncologist for a check up. I had my six month check up today and she said my blood looked good and that she won't need to see me for a year. I lost ten pounds since my last check up, not sure how I did that because I really haven't been riding very much. I do a lot of kayaking/fishing with at least four miles of paddling. It doesn't feel like a work out but I suppose it's better than watching Oprah.
For years I always did the Tour Of Mercer County century ride. This year I haven't been riding much and I haven't been working out at the gym, two things I always did. I have been hanging around the house when I'm not at work and taking care of my wife after her surgery. Anyhow I figure out last night as I was sitting around the campfire in our yard with my wife that I could do the short 35.5 mile ride and be back home by lunch time. I got up at six am and got my stuff together, we had a light rain. I got to registration about 7:10 am. got signed up and went back and unloaded my bike. I noticed the guy parked next to me had a pink cue sheet (35 mile ride). I struck up a conversation with him and found out this was his very first organized ride. He was a bit unsure of himself but wanted to try it. He said he has been doing 20 mile rides from his house and has lost 40 lbs since he got his bike last year. I told him I could ride with him if he didn't mind an old slow guy tagging along. He had no clue the amount of climbing he had in store for him. I warned him that we were basically going to be climbing and descending for the entire ride. He climbed at a faster speed than I did but I had lower gears. One third of the way through the ride he said he was really glad I was slowing him down. He said if he would have rode it like he rides his normal rides he would have been calling for someone to come get him by the time we made it to Mercer. He had to get off and walk on a couple of the climbs. He has lived in Mercer County for a long time and had no idea we had hills like this. On the return part of the ride he had trouble with leg cramps. He said he had been drinking Gatoraide and lots of water. I know he drank a lot of water because I was behind him watching him.
We had a pretty steady rain on the return half of the ride. It took a different route and he was excited to not have to ride back over those hills we just rode. I told him not to celebrate too much, the return route isn't much better. We kept seeing a skinny lady and a young man looking at their map and then we wouldn't see them for awhile. It turned out they were looking for shortcuts because they were beat and just wanted to get back to their car. They took at least three shortcuts off route but we still got back before them. It was a good ride, I'm glad I went. I have been feeling cooped up during my wife's recuperation. The noob said he enjoyed the ride and plans to start training on hills so he can do the fall ride the same group puts on.
I don't know why I enjoy coaching noobs so much but it give me a good feeling to help people out while they are learning the ropes and encourage them. This guy is serious about getting in shape and losing weight. I didn't ask him how much he weighs but probably not too much more than me. He is a lot shorter than me. There were a couple Strava segments on the ride and even as slow as I am I placed well in the over 65 age group on each segment.