July 24, 2016, by Kristin Neva
“On nights like these, I wish I were in heaven, ” Todd said when, at six this morning, he asked me to put him in his chair to end his miserable night in bed.
I was up every hour or two with him, and it was rough for me too.
As the ALS progresses, I’m thankful we have help a few nights a week when caregivers put him to bed and turn him every hour or two. We treasure those nights of sleep.
Thank you to those of you who have sent money that allows us to hire help.
We are aware that as the disease progresses we will need more and more help. I recently spoke with a woman who just lost her husband to this dreaded disease. In his last days, she was up with him every twenty minutes.
Recognizing what lies ahead of us and finding that our current house layout is not meeting today’s needs, we are building a caregiver’s addition — a room right off Todd’s bedroom where a caregiver can sit and read within earshot.
Todd is looking forward to using this space as his office during the day — a quiet place to work on the computer and host visitors, as well as a private space for home health professionals to work on him.
In our recent hot, humid weather, Todd can’t sleep without running his window air-conditioner — but when the addition goes up, we’ll lose his second window, so at that point we’ll be unable to open a window on cooler days. So we would like to install a ductless mini-split in his room and office. He feels better and his feet swell less on hot, humid days when he has air.
We took out a loan that will get the addition up, but to keep the payment affordable, we are short about $10,000 to finish it off. We figured we can add flooring, trim, closet doors, etc., at a later date if needed, but we really would like that air-conditioning system.
Will you be a part of our caregiving team to help Todd be comfortable at night and help me sleep? If we can raise $10,000, we can finish off the addition this summer. Any additional funds will pay down the addition debt or be used for nighttime help.
If you would want to sponsor us with one night of sleep a month, consider giving on a recurring basis. We’ve found that having someone come in from 10:30 to 2:30 or 11:30 to 4:30 works pretty well. The cost is between $60 and $100, depending on how many hours the caregiver stays and whether we can find a CNA/nurse private pay or through an agency.
Our mailing address is P.O. Box 367 Hancock, MI 49930. We have also set up a Go Fund Me site for raising funds for the addition. https://www.gofundme.com/2fux5sc
Thank you for being part of our caregiving team!
Featured Image: Our Caregiver Addition is underway.