Doing the right thing

I have been away from the discussion boards for a couple weeks and its nice to be back. Last week my sister passed on after fighting a genetic illness for 48 years. She was born with Hallerborden-Spatz, a rare disease that allows iron to build up in the brain and replace brain cells. She was quite normal until two years of age and then everything stopped. Over the years my sister continued to decline as body functions failed. My mother, father and family did't believe in throwing someone into a mental institution and forgetting them. So she was kept at a nearby home for the mentally handicapped and brought home on weekends and holidays and for other special events. She sailed and flew in planes and never lacked for the things she loved. My mother was an awesone caregiver for 48 years. When we knew her body was shutting down she was brought to my mothers home. She had a cathater in place so we brought in a hospital bed, morphine pump and suction pump. She had an air mattress that changed the pressure points every half hour to prevent bed sores. Then we spent the next eleven days playing her favorite music and talking to her everytime her eyes opened. My mother and step-father took care of the daytime hours and I took the nights so they could sleep. Hospice was available and called everyday but they were never needed. The local Health Dept nurse stopped in everyday and they were a great resource to draw on for care and support. My sister passed on quietly and without pain surrounded by a loving family. I won't tell anyone it was easy and that we were not wore out emotionally. But it was the right thing to do and we will never second guess our decission to bring her home. Hospice care can be a good thing with family support, hospice organizations and heath professionals in place. But it takes a dedicated team effort. There is no way to thank everyone enough for the support we received, so we did what we thought was right. Hospice received a wheelchair and will get whatever is left of the insurance money. The home for the mentally handicapped received a wheelchair and stereo. Her doctor got a steak dinner. The hospital nurses who had never delt with anyone having this genetic disease got flowers, donuts, cakes ect. To say I am proud of my loving and caring family is an understatement. I will miss my sister Cynthia Ann Wilson for the rest of my life. But she is in a better place now and surrounded by love. Slickwilly