I lost my husband, John, after a relatively quick two-year battle with ALS. It is a devastating disease that destroys the patient’s physical abilities due to muscle and nerve degeneration. It also attacks the health and mental wellness of both patient and family as the days begin to run together.
John began losing his balance, and his falls resulted in several broken bones and chipped teeth. The balance issues continued to get worse and after months of testing, we received the dreaded diagnosis: John had ALS. It would lead to a very difficult death, since there is no cure.
Upon hearing this news, we quickly took as many bucket-list trips as we could. But the quick progression of John’s disease halted plans for more trips. In fact, for the last seven months of John’s life, he was confined to one large room in our house. Caring for an ALS patient puts the entire family’s life on hold. The disease not only affects the patient, it envelops the entire family.
I could see John’s personality changing because he had to ask for help with every task, no matter how small–like turning channels with the remote, holding his “big Coke” or brushing his teeth. He became extremely frustrated and began feeling like a burden to his family. And as the caregiver, I would often be the subject of his frustration and let my emotions get the best of me. It’s excruciating to see the person you love deteriorate and become trapped in his own body. There is no winning or happy ending, and everyone knows it.
John longed for one last vacation, as did everyone in our family. Patients and their families can get into a horrible routine of one bad day after another, with no end in sight. They deserve to escape from the day-to-day battles and routines of living with a terminal disease, especially one like ALS that has no standard progression. The opportunity for both patient and family to just relax and make the simplest of memories together, in an environment that is safe and has taken into account all of their many needs, is not easily found.
I wanted us all to have that one last getaway with John, and I diligently searched for a house that was super accessible for people with extreme mobility challenges. There are all sorts of vacation homes that will claim they conform to ADA standards but they actually don’t—there may be a couple of stairs to enter or narrow doorways preventing wheelchair access to multiple spaces, such as bathrooms. This false advertising poses a huge danger to not only the patient but the caregiver, since they have to resort to lifting the patient and possibly falling.
I couldn’t find a house that would work for us. But I kept feeling this nudge from the Lord that said “why don’t you make one.” I ignored those nudges at first, as I had enough on my plate at the time, but they continued. The more John’s condition progressed, the more I realized I needed to pursue this idea for other patients and their families.
I began looking for a lake house that was within driving distance of us. I looked on Zillow almost daily for five months. I was very disappointed there was nothing that could work. And then I felt God’s presence telling me to look again, just two weeks after John passed away. I did, and saw a house that looked ideal. It had been on the market for 232 days, but I had never seen it, even with scrolling through real estate listings for months on end. Taking a girlfriend with me for the two-hour drive, I immediately knew that this was the right place. Not only was it beautiful, spacious, and nicely situated on a scenic lake with an expansive 10-foot wraparound porch, the home was such that I would simply have to widen three doors, put in a wheelchair ramp and hydraulic lift, and modify the master bath.
The owner had received numerous offers on the house and had never budged from the asking price. I wrote a letter explaining what I wanted to do and we settled on an amount just under his listed price. It is unbelievable how this idea came together and fell into place so quickly. There is no question that it was divine intervention. I didn’t have a lot of disposable funds, but I did use some of John’s life insurance money to acquire the house and begin furnishing it. I formed the nonprofit, Windchime Wishes Limited, and named the home John-boy’s Place.
This home will be available to patients and their families with ALS, muscular dystrophy, cerebral palsy and other debilitating progressive diseases. The patient will have a beautiful view of the lake and a chance to escape the confining environment of their disease and its limitations. The house will be made available for a week at a time absolutely free to the patient and the family. We will provide four full meals for up to 14 people which can be delivered or cooked on site. We will even pay for 24 hours of caregiver time throughout that week to be used however the family wants during their stay, allowing the family members to relax and not have to be on constant call. Maybe best of all, with no barriers to access and all needed equipment located on site, the patient will be less dependent on caregivers for many things, thereby reducing stress and strain on everyone.
As I began promoting my plan across various Facebook groups with ALS patients and families, so many responded with such heartfelt support. I started getting offers of equipment that had been “stored for no reason.” Suddenly, these families were connecting the dots and messaging me with donations of their loved one’s lift chairs, ceiling track systems and electric wheelchairs. Almost all of them said they held onto certain pieces of equipment, hoping they could give it to someone who really needed it, and when they saw my plan, they each got that fuzzy feeling that I’d got when I first saw the house. In addition, I have had nurses, hospice care workers and former ALS family members offering their own time to come to the house and cook for a family or be the caregiver for a week.
The outpouring has been heartwarming in this world where so much seems not to be about giving without receiving. I see God in this plan, in helping me to cope and to give back, in opening so many surprising doors, in helping others to find a bright spot in their loss, and in being able to pay it forward. How each and every aspect of this endeavor has come together, one piece at a time, but with amazing clarity and ease, gives me no doubt of His part in this. I continue to feel a peace and faith that tells me sponsors will come to defray some of our expenses.
It makes me sad sometimes that I couldn’t do this in time to benefit my wonderful husband, but his memory and wonderful legacy will live on with John-boy’s Place.