The Life of a Care Giver

When Randy was diagnosed with MDS, he went down hill quickly. I was his care giver. At first it was not too bad but it meant leaving the house daily for early morning chemo and anti-biotics whch wore both of us out. It meant 8 different times in the hospital and the summer was so hot and parking places at the hospital were hard to find. Every day was a chore. I was living on auto pilot. We no longer got Randy out of the hospital and home, then he had to go back because of so many setbacks. He had to have blood and platelets twice a week; sometimes in patient and sometime out patient. His electrolytes were always out of whack which affected his brain. He was also found to have congestive heart failure.

I was so tired and I really didn't have too much time to grieve only that the Randy I knew and loved was not with me since his diagnosis. He was not lucid most of the time. I had to sleep lightly because he would get out of bed and fall or wander all over getting into things like pouring my scentsy wax out all over and moving things around and couldn't find the bathroom, often urinating on the rug and pulling out his pic line. It was a nightmare. Many times he yelled at me telling me to just leave him alone. I tried to help him get around but he fought me all the way. Then I was hospitalized for a some kind of infection and irregular heartbeat and high blood pressure. Randy was somebody who liked to be in control and he just would not give up his driving. When anyone but him was driving he almost had a nervous breakdown. But he nearly wrecked us one night when he was ill while driving and he finally knew he had to let go of his control and let me drive.

I was living in a nightmare that I could not wake up from. I caught sleep whenever I could. Randy was most anxious during the night. I had to keep him medicated or he got violent, fell down and bruised himself. Often times when he was somewhat lucid, he would cry and ask me to forgive him and that I was the best thing that happened to him. He would say he was sorry for being cruel during his terminal restlessness and that he was just plain scared to die. He finally had his motor home and then he was too sick to use it. He said he was so confused because he did not know half the time where he was or even who he was with. This made him more anxious and confused.

I know now how hard it is for a care giver. It's probably the most challenging and heartbreaking thing anyone will ever have to go through, especially a loved one. Watching them change completely. Watching them suffer. Having them yell at you when you are only trying to help. Having them try to tell you something but the words don't come or they are incoherent. Being worn out to the point of exhaustion. It gets to the point where you just want them to leave this world as they are suffering and the care giver is getting to point that they are almost ready for a break down. Please appreciate the care givers. Their job is probably the hardest job that anyone would have to do. And then to watch them die in front of you and it is bitter sweet because you know they are suffering but at the same time you really are never ready to say good bye to your loved one.