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Sometimes I get real frustrated with doctors. We have eight different doctors for my brother and no real answers. When I realized my brother Reid wasn't taking care of himself properly I suggested he take some of the money from selling our parent's house and move out here to be close to me. I went about renting a two bedroom apartment that is literally 80 steps from my place. I arranged a moving company to bring his things out which is a nightmare I am still fighting. I arranged to ship his Pathfinder out. I flew to California and I have never been so thankful for a degree in theater in my life. I was able to use the acting talent to keep from showing how dismayed I was when I first saw him. He is skin and bones. Almost all of his muscle mass has wasted away. He looks way older than his years. Follow me below the orange cheeto as we explore a personal nightmare.

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I am on my second round of care giving. I took care of our Mom for six years. I was lucky in that she was mobile and lucid right up to death. She had a heart attack and passed away in her bed. I did a lot for her including all the shopping. I spent a lot of personal time with her. She had very few friends and after Dad's death was very lonely.

Care giving this time around is much more intensive. Reid and I are both fans of the cartoon Rocky and Bullwinkle. We are both fond of saying I'm strong like moose and smart like squirrel usually in the Boris Badenov accent. I literally have to be since I need to be able to pick him up. I discovered this early on when I had gone to the store and came back to find him lying on the floor. He had fallen and couldn't get up. I got him back up and with the help of his walker got him back to the couch.

Shortly after getting here I had to call an ambulance because he was feeling so bad. He was severely dehydrated. They got fluids in him and for the first time a neurologist saw him. Reid had been told he has Multiple Sclerosis. The doctor who saw him said that he didn't. His new neurologist says the same thing. So began the merry-go-round of doctor appointments trying to discover what is wrong besides severe diabetes.

In January he felt well enough for us to go see The Hobbit: The Desolation of Smaug. He collapsed as we were leaving the theater. The theater people were wonderful. They got a chair for him to sit on and called an ambulance. A couple people stayed with me to help. Reid was in the hospital for five days. Again we had severe dehydration and blood sugar problems.

Reid's doctor in California had him on a sliding insulin scale which meant it was up to a totally non-compliant patient to figure out how much to take. He also told him to go ahead and smoke and eat anything he wanted. Reid smoked and ate junk food.

A nutritionist gave Reid  better understanding of what to eat. We also discovered that I knew what I was doing in making meals. We don't do junk food. I watch carbs, sodium, cholesterol, etc. Several years ago I made a diabetic cookbook after researching on the web since I had a lot of friends and a favorite Aunt who were diabetic. I took my love of cooking and made everything as flavorful and healthy as I could. The doctors also put Reid on a fixed insulin. I check his blood sugar every morning and evening and make sure he takes his insulin. I don't allow non-compliance in my house. I also installed a water purifier in the kitchen and got him a pretty blue water bottle and keep it filled and make sure he drinks plenty of fluids.

My place is small and I had to put bookcases in the hallway. It is too hard for Reid to get to my bathroom so we have urinals that I keep emptied. I wash them a couple times a week with Lysol. I also had to get a bedside commode for him. Being a caregiver means not being squeamish and remembering that you changed his diapers when he was little and you are doing something similar now.

I am the chauffeur and we will be selling his Pathfinder. Reid is now in a wheelchair and I am getting real good at getting it in and out of the trunk. I am also good at getting him out of the front seat and into the wheelchair. At home it is a little easier. I get behind him and sit on the top of the couch and circle my arms around him and stand. That gets him on his feet.

We discovered the hard way that if doctors forget to tell you something that it could be fatal. The gastroenterologist wanted to do  a colonoscopy and check his stomach out at the same time. The only thing they said about his insulin was to take only a half dose in the morning. We were doing the liquid diet and the colon cleanses. Reid was on the commode and I checked on him and he seemed very pale. I asked if he was alright and he said he was but something told me that wasn't true. My first clue was when all of a sudden his whole body jumped. I tried to get him up and on to the couch when he fell before I could raise him properly and went into grad mal seizures. I called 911 and she told me to take his blood sugar if I could. It was thirty. He was conscious enough for me to get Kayro syrup down him. 911 stayed on the line with me until the paramedics arrived. I discovered later that it went convulsions, coma, brain damage, and death. He almost died on me because no one told us to stop the insulin while doing the liquid diet and colon cleanse.

So after all these tests what have we found out? Nothing. The best guess they have is severe diabetes and a possible absorption problem but they aren't sure on the last. I have a calendar on the refrigerator that changes sometimes daily trying to keep up with his appointments.

Reid has been here since September. At this point we don't know when or if we can get him into his own place. I have been taking care of him while suffering from a torn tendon after being thrown off of my feet on the train ride out here in September. It still hasn't healed.

There is a lot to care giving this time that I hadn't had to do with Mom. I give him sponge baths since we can't really get him to the shower. I clean and wipe him. I feed him. I get his medicine down him. I make sure he knows that this was my choice to bring him here and that he isn't a burden.

I keep hoping that with all these appointments someone will figure out what is wrong and restore him to better health. He will never be well. The diabetes is much too far advanced for that. I want some independence for him. I will always be caring for him but it would be nice to set him up in his place where we can have a table so he can build the model airplanes he loves. I will always be cooking for him but I want him to be able to at least make some things for himself if he gets hungry. I would like him to be able to sleep in his new bed rather than a couch that is a bit too short to sleep comfortably.

Care giving is 24/7 365/366. At least I know that I am doing the right thing and hearing Reid tell me how much he loves me makes it all worthwhile. Now if the doctor could just figure out what is wrong besides diabetes.

Originally posted to KosAbility on Sun Mar 30, 2014 at 04:00 PM PDT.

Also republished by CareGiving Kos.

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