Earlier this month, we shared our plans to try to get a ceiling lift installed in our living room to make transfers easier and safer for the two of us.
We’re finally ready to move forward, working with Thrive For Life, and the cost will be just under $17,000 for the equipment and installation combined.
What is a transfer?
Exactly what it sounds like. Helping José move or ‘transfer’ from one piece of furniture or equipment to another. This is trickier than it sounds since he is no longer able to stand or walk unassisted and has lost most of the strength in and use of his hands and arms. Fortunately, José can still bear some of his weight with his remaining leg strength, enabling him to assist a little with standing and taking a few small steps.
We have no way of knowing how much longer we can make this system work. It is getting increasingly difficult and the cumulative toll on my body as primary (and sole) caregiver has had a noticeable affect on my strength and physical abilities. Between my weakened state and José’s continued progression, transfers have become both tense and unsafe.
You may notice that José is hunched over in the photos and videos. His ALS progression has weakened his neck muscles to the point that it’s hard for him to keep his head up without support. So during transfers, his head slumps forward which causes additional stress on his body, constricts his breathing, and makes transfers even more risky.
How a ceiling lift will help
While we’d originally hoped that it might be possible to have a multi-track ceiling system that could help move José from bed to his sit-to-stand recliner to the bathroom and power wheelchair, the construction of our apartment won’t make that possible.
Instead, we’re just planning to install one track in the living room that will help with transfers between the recliner and multiple devices: the power wheelchair, transfer chair, commode chair, and–eventually–a tilting bathing chair that will be able to roll directly into the shower. This will cover 80-90% of the transfers we currently make each week.
The only other transfer is in and out of bed and we are able to use our hoyer lift to transfer him from his recliner to bed, and from bed into his power wheelchair. And many nights, José actually sleeps in his recliner since he finds it more comfortable.
Unfortunately, transfers from the hoyer lift into the recliner, transfer chair, commode chair, or any other furniture are not possible to manage with just one person (me!) assisting with the transfer. Hence the need for an alternate system.
The photo below is from the Thrive for Life company website and provides an idea of what the SureHands ceiling lift will look like.
How you can help
We’ve adjusted our GoFundMe campaign goal to help with this purchase. When we reach our next fundraising milestone ($60,000, inclusive of all funds raised since 2021), we’ll have secured all the funds needed to cover the cost of the ceiling lift.
How have GoFundMe contributions been used to date?
With the previously raised funds, we were able to complete the bathroom modifications and make seven trips in seven months to Texas Neurology in Dallas so that José could participate in a clinical trial and help advance research into future ALS treatments. For even more details, read the April 2023 update at the very top of our GoFundMe page.
Any new contributions made to the GoFundMe will go directly into an account managed by José and be put immediately towards the ceiling lift installation.
Making a contribution is one way to help, spreading the word is just as important!