These are the following products and how we use them to make Bob happy and comfortable when he is in bed. As always, ALWAYS ask insurance, your local ALSA chapter, your PT/OT team, and any other foundations you work with for these things first. Bobby and I have made many mistakes with just buying products first to find out they could have been given to us or covered by insurance. I have provided Amazon links as reference and last resort.
The first is we have a memory foam mattress and adjustable bed frame. Both of these we got from Sleepy’s although they are no longer carried there. It is important to have a memory foam mattress for two reasons; first it allows a more sturdy and even base for the special mattress pad we use and secondly it does not have pressure points from springs, which can contribute, to bedsores. Here are the links for the mattress and the bed frame PB873. The adjustable mattress frame is crucial to help in positioning. Our frame allows for head, lumbar, and feet adjustment as well as massage functions and has USB ports on the sides of the frames.
The mattress pad is really important for comfort and for the prevention of bedsores. The Roho products are individual chambers connected together so that as a pressure point is created the air moves in the adjoining chambers supporting that point rather than letting it sit on a hard surface. We have two Roho mattress pads on our queen bed. This allows for a seamless surface. One pad was covered by insurance and we purchased the second from Amazon.
A side note about the bed is about positioning. Bobby likes to sleep on his side but because we have a queen mattress and we share the bed, there is not enough room for him and me when we roll him towards the center of the bed. To compensate for this and to allow for an even amount of time on each side, we rotate the bed allowing him to change which side of his body rolls to the outside edge of the bed.
Many people ask us how does Bobby wake me up at night if he needs something. Before he lost the ability to talk he would yell or make some sort of sound. I used to be a very light sleeper and so this wasn’t much of a problem. Now he cannot make a loud enough sound and I have become a much heavier sleeper. Our solution we borrowed from a stay in the hospital. It is a metal touch sensor that clips to the pillow. It has an extremely loud piercing buzzer sound! We bought two from Patterson Medical before we thought to ask it to be covered by insurance.
The other tool we use currently in bed is a mechanical arm that holds his Tobii Dyvanx. We got this idea from fellow ALS Warrior Jay Smith. We have a bedside arm that came with the Tobii but we have found that the smallest movement (which is really easy to do) makes it unusable. This arm stays in position better and allows caregivers to access and attend to Bobby without fear of bumping the computer. Bobby recently wrote a bit about it here.
In the colder months here in Rhode Island Bobby likes to have heavy blankets on him that exasperates his foot drop. We combat this and make it more comfortable for in two ways.
The first is what we call a “bed tent”, it is a cage like arch that keeps the blankets from weighing down on his feet.
The other product we use is a pair of foot braces that are covered in UGG like material. They are really stiff and have hard plastic backing them to keep his ankles at a 90° angle. We got these covered through insurance.