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Sometimes you can get a bit cocky in life. I was a caregiver for my Mom for six years so I thought I knew everything I needed to know about care giving. I brought one of my younger brothers out from California after we sold the parent’s home with the intention of setting him up in his own place right across from mine. A month later we still don’t have him in his own place.

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Reid has severe diabetes and multiple sclerosis. He has to use a walker to get around and leg braces because his legs are very weak. He is 5’6” and 108 pounds. He looks like a skeleton with flesh on it.

The main reason I haven’t gotten his place set up is because at the moment being by himself, even if I am only 80 feet away, is not a good idea. He has been falling and can’t get up without my help. He spends most of the day on my couch, which has been made up as a bed for him, watching television or doing crossword puzzles.

There are times when his legs and feet refuse to work and I have to manually help him move his extremities. There have been times when he just plain falls to the ground and I have to lift him up. I am fortunately strong for my size and so far I have been able to get him back up. I have a couple of grandnephews who live a mile away if I have problems they can come over and help.

Reid has problems getting through my hallway to the bathroom so I bought him a urinal. For the most part that works out but we have had incidents where he just couldn’t get his body to work fast enough and I have had to change sheets on the couch, his clothes, and clean the rug.

He has good days and bad days. On bad days he is in a lot of pain. He is allergic to most narcotics and relies on aspirin.  The tramadol I take for my severe arthritis does seem to help. Unfortunately the only Doctor taking new Medicare patients can’t see him until December 18th so we are having to ration the pills so that both of us have them available.

The one area where I have had success is in his eating. He was doing mainly junk food in California. I love to cook and am actually writing a cookbook. He loves my cooking. I try to make my recipes healthy but tasty at the same time. I am trying to get some weight back on him and hopefully some muscle mass. I sort of expected to gain weight myself since I am eating more but have actually been losing since I have to be so active in caring for him.

One of the main things I am learning is how to keep him from being embarrassed when he has accidents. Last night I had to wipe him down and change the sheets and his clothes when he couldn’t get to the urinal fast enough. I have also had to give him sponge baths and clean him after using the toilet. I remind him that as his big sister, who helped take care of him as a baby, that I’m not seeing anything I haven’t seen before the parts are just a little older.

My hope is that they will be able to get Reid onto some of the drug trials and find something that will help keep his multiple sclerosis in check. We can deal with his diabetes with insulin and diet.

The hardest part for me is trying to be upbeat. It is really hard to see him like this. Pixie has been playing nurse and on bad nights will curl up on a cushion on the living room floor and keep watch over him at night. She comes back to me in the early hours of the morning to make sure mommy is okay too. I assure her that I am okay just tired. Nurse Pixie prescribes afternoon naps for that and she loves showing me how to take them.
 

Nurse Pixie

Originally posted to KosAbility on Sun Nov 10, 2013 at 02:01 PM PST.

Also republished by CareGiving Kos and Street Prophets .

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