CSN Login
Members Online: 8

Doing the right thing

slickwilly's picture
Posts: 339
Joined: Feb 2007

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

lindaprocopio's picture
Posts: 2022
Joined: Oct 2008

You DID do the right thing. What a beautiful tribute! Clearly someone very valued and loved has left us for a better place. And your actions prior to, and following her death, honor that life. You have my most sincere sympathies, my friend.

slickwilly's picture
Posts: 339
Joined: Feb 2007

Linda. Thanks for your support. We always read the posts of people struggling with loved ones they are trying to take care of. And I feel so sorry for them. I don't think any organization including Hospice, Health Departments, Social Services ect can solve all of our problems. They just can't be with us 24 hours a day helping to care for someone. It takes prior planning and the dedication of family members or friends that will step up to the plate for as long as it takes. We can't put death on a time schedule. Before anyone calls Hospice to begin a process of caring for someone they need to take care of themselves. If you don't plan time to get away and sleep, eat and think your going to burn out fast. The rewards of caring for someone are great and you won't second guess yourself later if it is done right. Slickwilly

Posts: 318
Joined: Feb 2008

Slickwilly I worked with the mentally disabled and it is not easy with their physical disabilities as well. What a beautiful unselfish wonderful family you have as well as yourself. She was given the best of care thanks to all of you and now she can rest above and watch over all of you. I know you are missing her but we will all be together some day. God Bless you and your family.
Prayers and Hugs

RE's picture
Posts: 4643
Joined: Feb 2004

Slickwilly, I am so sorry for you loss. I realize there are no words to take away the pain, but in reading your blog it is evident that the love you and your family have for your sister will help to ease this pain. Many, many hugs to you and yours.


Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2015 © Cancer Survivors Network