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(Note: This is an article from the
August 1998 issue of
"Focus on the Valley,"
The official newsletter of the
Chippewa Valley Bible Church,
in Chippewa Falls, Wisconsin.)
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by Sally Krohn
Eight years ago I started praying for God to give me opportunities to share my faith one to one with another person. God answered and brought Lew Neff into my life.
Lew was a man from Chippewa Falls, an Airforce Pilot, recently diagnosed with ALS. I had only known of two or three other people in Northern Wisconsin with that disease. Quickly, I became aware of the devastation this disease brings. In a short few months or years it takes a perfectly normal individual and robs them of all control of their bodies. They are likely to become physically helpless, relying on others for total care.
But at the same time, their minds are usually left untouched. They continue to feel everything. They hear and know everything that's going on around them, but can't move a muscle to help themselves. It's sometime referred to like "being buried alive in your own body".
Since the support group started eight years ago, we've learned of one new PAL (person with ALS) about every month. About every six weeks, someone we know of dies. Usually 24 hour around the clock help is needed to care for these individuals. The burden frequently falls on families. Spouses have to quit work, children become nurses aides, life savings are spent on care just to survive another day.
And then there are some individuals who have no family. They have nowhere to go. No one to take care of them. So they end up in nursing homes. I know of one man in the nursing home right now. He's fearful of choking on his own saliva. He puts the nurse call light on and sometimes they come in 10 minutes, sometimes it takes 30 minutes and sometimes he waits two hours. No one can hold their breath for two hours waiting for someone to come suction their throat.
One lady from Eau Claire planned for weeks on when and how to move from her home where she lived with her two children and husband. She needed more care than they could provide. Her son was developmentally disabled. Her daughter was ten years old. Her husband worked ten-hour shifts in Chippewa. She moved into the nursing home and died the NEXT day! She may have choked on her own saliva and when they found her it was too late. Not only that, but then they ignored her wish to have no life sustaining measures. They called 911 and "bagged her" - kept her body alive for 4 more hours. They brought her to the hospital, where her husband and mother had to watch as they stopped the CPR and watched her take her last breaths minutes later.
She thought she had at least a few weeks in the nursing home to say her good-byes to her husband and children. She didn't survive even one day. Right now there is a man with ALS in the nursing home who is asking, "Isn't there someplace where they know about ALS?" He's paying nursing home costs, plus looking at trying to hire his own aides so he doesn't have to be alone. So someone can suction his mouth or move his arm when it hurts.
There are two ladies in Eau Claire. One is a 52-year-old single mother. Her only son just started a job in LaCross. She can't ask him to give it up and come care for her. Her mother is 87 and unable to help. She's hiring help right now for 20 hours a day.
But she wonders how she will manage when she loses her ability to speak. Who will hire the aides? Who will call someone to fill in when one calls in sick? Who will train new aides how to place her just right on the commode, so she doesn't fall sideways?
Another woman in Eau Claire has never been married. She has one sister and one good friend. Right now she's selling her life-long home and moving to a handicapped accessible condo. She can still walk, but is beginning to trip. Her speech is only understandable 60% of the time. How will she find people to work for her or train them when she needs them? Who will pay the bills when she can't write anymore? Who will take the time to listen to her Talking Organizer when she tries to use it to speak? Who will teach her to use a computer, so that she could continue to communicate when her fingers don't work anymore?
Home Health agencies in Northern Wisconsin charge $15 - $17 an hour for a personal care attendant or nurses aide. Some aides only do personal cares, some only do housework. No agency has enough staff to cover 24 hour a day care. Maybe if you hired a nurse at $21-$25 /hour, if you're really lucky, some agency MAY be able to provide staff, but most likely not. But nurses don't clean houses, etc. Very few can afford theses costs and even if you could, most agencies aren't equipped to provide staff. No agency has staff knowledgeable about ALS. No agency provides adequate training about ALS to their staff. No one has much experience with Word Boards or Talking Organizers or Augmentative Communication Devices or Auditory Scanning.
Lew Neff died in February, after fighting eight long years with the disease. Since his death, God seems to have expanded His answer to my original dream, because He has brought into my life many more people -- Sandy, Ruth, Peder, George and Susan, Billy and Michelle, etc., etc., etc. And now, He has given me a dream.
God has given me two weeks vacation from my job as an Occupational Therapist at Luther Hospital to initiate the search for resources and people that can help make this dream reality. The time for action is now! Every day we wait brings each of the PALS closer to the end. They deserve to be cared for with love and dignity!
I don't have a home in which this could happen. I don't have the finances with which to start it. But I have a BIG GOD and believe that through His people, this ministry could become reality in the Chippewa Valley. Please join me in this worthy endeavor!