“You Lift Me Up” Chapter 74
It was not long after being diagnosed with ALS that I needed assistance getting up to my feet. When I was sitting on the couch, Laura would assist me by pulling me up by my arms. Shortly after, I bought my first recliner with a lift feature too help me to get up on my own. Right about now you are thinking “you were 55 and bought your first recliner, what took you so long?” Well, I wanted one for years, but Laura didn’t let me. I fully embrace the “happy wife, happy life” theory. Have you ever heard “happy husband, happy was been?"
When I got weaker and walking was shaky, we used a gait belt. It was strapped around my waist and the handles helped Laura hold me up. (Get your mind out of the gutter, my blog is PG-13). The problem we had is the belt would hit my PEG tube sometimes and boy did that hurt. So we tried putting the belt above my PEG which worked better until I couldn’t bear weight on my legs anymore. If you want to have fun, stand up using the gait belt until your legs buckle, and see how fast your caregivers can catch you. Estimated cost of a gait belt $10 -$300.
We started using the two person lift when my caregivers didn’t want to play any more. They would grab me under my arms and legs to move me. Because of the muscle loss in my neck and shoulders, this too, became difficult. I also think Laura got tired of me asking to be carried around the house like I was someone special. Estimated cost for the DuBois fitness program and to be allowed to carry me around? PRICELESS.
All of the above moves required little equipment or money to buy it. However, they also require more brute force and body fatigue on my caregivers.
We started using a hydraulic Hoyer lift after I gained 25 pounds of my sexiness back and Laura and the girls' bodies were hurting. The Hoyer lift is a patient lift used by caregivers to safely transfer patients. It can be used for lifting patients from the floor or onto a healthcare bed. The truth is, we should have started using it sooner, however, I kept insisting to be carried. Like many other things, we learned through this journey. If I had known how much better it was to use the lift, I would have started using it sooner. It is a lot easier on everyone. However, every time we used it, I felt like an engine block getting dropped into a car. The best thing is it can be used around the house, but not on uneven or carpeted floors. Estimated cost of a Hoyer without the car $400-$15,000.
As good as the Hoyer was, it was heavy for a single caregiver to use and you need clearance under the bed and surrounding areas to move me. So we upgraded to a ceiling lift system. I feel like a stuffed animal in the claw game waiting to be dropped in the hole. I keep hearing "the claw, the claw" in my head when I'm being transferred. After research and speaking to a vendor, Laura decided to go with a multi rail system. This allows the lift to be used anywhere within the rails giving us more flexibility unlike a single rail system. I also like how smooth it is and a single caregiver can operate it. The drawback is it’s not mobile and must be attached to the ceiling causing future repairs when no longer needed. Estimated cost for me to bungee jump ALS style $3,000 - $10,000 installed.
I was thinking about how someone affords thousands of dollars for this equipment, let alone the DuBois fitness program. I did some research and found that private insurance may cover some of the cost and Medicare will cover 80%. If you are a Veteran, you are covered 100%. Ok, that’s a little better, but still another expense for PALS families, so I am going to gift all caregivers the DuBois fitness program from now on.
Anyone wanting to come over and carry me around, just let me know and I will put you on my schedule.
In the end, as your PALS progresses you will have to determine what is best for your needs. Every PALS will not only need to be lifted up spiritually but physically as well.
Love and Blessings
