Recently my sister Wanda Batiste loss her battle with ALS, (3 Sept. 99). She was 38 years old and was first diagnosed in 1994. My parents and I watched her go through all of the different stages of this crippling decease. My parents and I cared for Wanda from the start, all the way through the end. She remained at her own home throughout and never wanted to be placed in any type of care facility. I write this note to offer a word of advice.
As I look back on the past five years, my parents and I are comforted by the fact we did everything we could for Wanda. We established shifts, we maintained routines, all of which allowed Wanda to maintain a set schedule and also have something to look forward to, even if it was only a different face or voice. By keeping her in her own home, she was much more comfortable and more in control of her surroundings.
We were asked on several occasions, if a service existed or a care provider existed who could take care of her. Our answer was always the same, "it is our job to take care of her". I know Wanda appreciated our efforts, even though dealing with the disease was not easy for any of us.
When the final moment had arrived, and I lifted her from her wheel chair for the last time to lay her on the floor (instructions from the 911 operator), I later recalled something was missing from her at that very moment. I could tell she was finally disease-less, that terrible disease had left her body and she was well on her way to a better place. She looked to be at peace, and relieved.
So I say to all of you who have friends or loved ones with this disease, stand by them, do not get frustrated for their time is relatively short.
Maintain a positive attitude, it will help them to focus on getting their life in order and preparing for that final chapter.
Also, We have a queen size hospital bed, (all the bells and whistle's), with a special mattress in excellent condition and working order. If you know of someone in need, please let me know, all they have to do is pick it up, or get me a local address (Los Angeles area).