Sleep: don't leave bed without it
Hospital bed size and specs
A typical hospital bed is 36-38" wide.
As for length, seriously consider 80” (same as a twin XL, queen, or king) for anyone but a petite woman and 84” for anyone 6-ft or so +. Do not let anyone tell you that a “standard” 75-76” will suffice. You have the head up most of the time for comfort and breathing, and the body will slip down. Transfers also require “running room.”
Also, in planning out a room, you need a couple of inches between the head of the bed and the wall, and it's much easier to deliver care if there are at least a couple of inches between an adjacent bed and the PALS' bed — enough to stand in.
Linak motors are the gold standard; ask if your bed-to-be has one. Ideally, the bed control has four button pairs — head up/down, whole bed up/down, tilt up/down, legs up/down, as shown below.
Many hospital beds are rated for bariatric patients, simply because many home health and hospital patients need that capacity. Most PALS don't, and beds that are "standard" (non-bariatric) can be less expensive.
Rehabmart, SpinLife, Medicaleshop, are all reputable vendors that have customer service departments and should know their stock, which isn't always all listed on line.
The features you want:
Height adjustment compatible with a Hoyer lift
Trendelenburg and reverse Trendelenburg [this may also be called "cardiac chair" and is not standard for hospital beds]. You actually don't need the Trendelenburg, but the features are sold as a pair.
"Reverse Trendelenburg" positioning is equivalent to "tilt and recline" on wheelchairs, allowing for pressure relief, urinal use, and a more stable "drop zone" for lift transfers since you can pre-angle the bed so the "drop" is in the right spot. You transfer the person with the head only slightly angled, then raise the angle once the transfer is done, so the center of gravity (core) stays in the right spot, which is critical for comfort.
It also facilitates the right sleeping position, and helps protect the hips when the PALS is in a seated position in bed. Try to sit in your computer chair and work or even watch your screen without bending your hips.
Yes, this would cost you maybe a couple of thousand dollars, depending. Insurance will reimburse you a little bit, pretending that you bought a "standard bed" (if and only if you did it in network, if your plan requires that). Of course, you can resell the bed later —they hold their value pretty well if not abused.
Still, if that's not possible, you can add a lot of comfort to a standard bed, that raises the head, feet, or total bed height. Keep reading!
Your bed ideally has a Linak motor [reps may not know one way or the other, though].
A 6" medical foam mattress (shorter is easier for the frame to move and gives you more flexibility in bedding choices), doesn't need to be fancy, you can add an overlay to it if needed; "pressure relief" isn't needed either; there are pressure boots for that.
Manufacturers and even clinics often push for "low pressure loss" and "alternating air pressure" mattresses and overlays. However, many PALS can't tolerate these because of pressure points and unstable joints, so I recommend they only be considered as a last resort.
It is a myth that PALS are as susceptible to pressure injury as spinal cord injury (SCI) patients are. (SCI patients usually can't feel when something isn't right since they suffer a loss of sensation that PALS do not). This myth fuels a lot of expensive, counterproductive purchases of rotating and low air loss mattresses.
In fact, PALS do relatively well with immobility from a pressure injury standpoint. The reasons why are still under study, and may ultimately relate to the reason ALS shows up in the first place, so if you know any scientists with time on their hands…
Peer-reviewed studies, including analysis of PALS' skin, has confirmed that even late in the disease, when they are usually in a bed or wheelchair, PALS rarely develop "bedsores." It is thought that skin collagen is abnormal in ALS, basically more stretchy than in other people.
The #1 cause of skin breakdown is unnecessary pressure points, heat, and moisture, such as leaving a sling in a wheelchair or under the person in bed. Don't!
Heat and moisture are another reason to consider using a fan at night — it can also ease breathing and feelings of stuffiness.
Assuming the PALS sleeps on her back and isn't at risk for a fall out of bed, there is usually no need for a headboard, footboard, or full rails. A half rail on one side (which side depends on the room) can be nice as a place to park a corded remote.
Rotational Beds/Mattresses
Absent a history of pressure injury, most PALS do fine without rotating sleep surfaces, which can actually create pain/degrade sleep.
Think about how well you'd sleep if you were being moved involuntarily all night, especially if you had lost significant fat/muscle padding, creating a greater likelihood of pressure points with every movement, plus you already had unstable joints due to disuse of ligaments and tendons. Oh, and you couldn't move to readjust yourself after being moved.
These beds are popular in spinal cord injury, where loss of sensation increases the probability of undetected pressure injuries. Not so in ALS, where I can count 2-3 pressure injuries I've heard of in the last 15 yrs.
Especially if you get a frame that allows for "tilt" as above, the frame adjustments that reduce pain also reduce the risk of pressure injuries, already rare in ALS to begin with (except when as noted above, a sling is left under the PALS too much, or someone has the wrong wheelchair seat cushion).
The funny thing is, rotational beds are prized for rotating, but they're not very skin-friendly otherwise, because they have so much to house within the bed to make all the rotations.
Closed cell construction and extra solid layers also help warmth and moisture build up, which in turn contribute to pressure injuries/grime buildup. Foam distributes "give" based on body shape. Springs and air can't as well.
The CALS' Bed
If you have an adjusting split king, what you'll miss from a hospital bed, even assuming your lift works at the height limit, is raising/lowering the PALS for care. And keeping your beds together, of course, means you're always leaning over to do anything with the side you can't get to -- eye, arm, scratching, even getting them up/transferring. Also, you may not be able to stand at the head of the bed for head or eye care, or to reposition.
One option is to have the CALS' bed a couple of inches away but parallel to the hospital bed. Then, the CALS can could reach out and touch the PALS, with enough room to stand between beds and to give care on that side -- e.g. adjusting arm and padding, positioning, and, even, with a slide sheet, executing a dead lift of the person's upper body each day, to make transfer to a lift easier having done a pivot turn to get the head perpendicular to its original position.
Mattress/Overlay
If you start with a medical grade foam mattress for maximum reimbursement as part of your hospital bed, you can add any kind of overlay — foam, gel, air, or a combination. If your condition calls for it, you can move to a low air loss/alternating air overlay. It’s easier (and cheaper) to add overlays rather than replacing whole mattresses, but it also affords you more flexibility as well.
For most PALS, (most people, really — just instead of a hospital frame, you buy an open $100 frame at Amazon or somewhere) the best mattress is 6-8" medical-grade or other compatible foam with a 1-3" overlay such as green latex for extra padding/flex, on a hospital bed frame. The height ranges are based on your height, weight, setting, and where most of your weight is.
Especially if your hospital bed has a 6" or less thick medical foam mattress, a latex overlay might improve comfort overall, esp. if you have lost tone/muscle in your torso overall and don’t have an overlay. The Pure Green Latex line is a good topper option.
Beware of wool-stuffed or other stuffed pads that tend to clump up and cause sweating.
Pillows
For side sleeping, the arm you are lying on can put pressure on your shoulder and hip. A pillow with a "channel" for one arm, or a "comma pillow" may work well, especially with a BiPAP. You can cut a channel through with sharp cutting tool, or buy a pregnancy body pillow. Contour Living has some good ones.
Substituting a "comma pillow" for the head pillow might not work for some BiPAP setups. However, there are many shapes/sizes of these and some can work with a modest head pillow.
For all kinds of sleepers, I often recommend latex pillows for the sort of soft stability they provide, and the ones that you can add/remove fill accommodate changing needs/body padding, like those available from Bedrooms & More, SleepEz, SleepOnLatex, and AVOCADO (all of which also offer good mattress toppers that can make a hospital bed mattress more comfortable). You can add or reduce fill according to your needs.
There are also some prefab pillows with a channel, for “pregnancy," where you thread your lower arm through the channel. Or use a smaller pillow (we went through a ton of “travel sized” pillows from BBN to support the elbows and avoid pressure belt marks) to support the lower arm.
It's a good idea to re-evaluate the PALS’ bed pillow periodically. For example, as neck muscles collapse, you may need a firmer, softer and/or more/less contoured pillow. Look for a foam "shoulder pillow." Latex and memory foam have different properties, and some foam is less supportive than others.
Positioning aids
Pressure boots help prevent foot drop and reduce ankle/heel pain. from instability and pressing against the bed. Prevalon is a good brand but generics may be OK and are cheaper. You can tie them together loosely with a stretchy fabric strip, keeping the feet in line with each hip to avoid foot drop.
You may need hard plastic or styrofoam-type support (can grab from something else) at the bottom and/or on top of the ankle. A foam Velcro belt around the thighs may stabilize the hips, and sometimes travel size pillows as padding need to be part of the mix. Sheepskin (real, not fake, to protect from abrasion and heat/moisture buildup) is good for padding under elbows/forearms in bed/wheelchair, and to protect thighs in the wheelchair against the metal supports.
Of course, pressure boots and stabilizing the hips/legs works best for back sleeping, which you may not be able to tolerate for as long if your bed does not allow for angle adjustment of the torso instead of only the head/feet.
Still, if you stabilize the feet/ankles, that should take some pressure off the hips that you may be feeling while sleeping on your back.
Controlling Temperature
Impaired circulation, abnormally fast metabolism, reduced fat, reduced muscle bulk, reduced mobility = cold for many PALS. And then there are AC units running in summer. And fans that some need to avoid the feeling of stuffy air.
For those who are cold when trying to sleep, or find it hard to maintain a consistent temperature, check out the SoftHeat brand for low voltage mattress pads. They also make blankets/throws for daytime use, even in the wheelchair, but a PALS shouldn't use a heated blanket on top at night, which would risk burns and overheating.
In ALS, you want indirect heat and to protect the pad from moisture, plus you might need a slip sheet under the fitted sheet for transfers, so use a heated mattress pad under the mattress or overlay, not between the mattress and fitted sheet.
You can still have a separate low-friction mattress pad below the sheet to facilitate repositioning. So one way to do it is: fitted sheet, smooth pad or transfer sheet, overlay, low-heat pad, mattress.
Depending on mattress height and the PALS' preferences, you can use high-quality (furniture-grade, not cheap memory foam) or latex foam for the bed overlay. Gel is heavier and tends to trap heat, one of the causes of pressure injuries.
These go under a bottom sheet (to keep smooth, low shear surface against skin) but you may want to have mattress protector (preferably a cooling material like tencel or bamboo) between pad and sheet. If you use a slide sheet for repositioning or transfers, position it just under bottom sheet so our padding was under the mattress protector, which was smooth so the slip sheet could rotate for our transfers.
Also, you can duck-tape the cords that connect to the power outlet to the underside so it doesn't get caught when the hospital bed moves.
Masks
Side sleepers report success with AirFit F30 and F40 masks, particularly. Back sleepers may do well with one of these or even a "hockey mask" over the entire face, avoiding nose bridge pressure. Circadiance masks are worth trying, though some people can't make them low-leak due to less structure.
RespShop, among others, offers mask insurance on some models, where you can return them if they don't work. Your local DME may also have some for trial.
Often back sleepers will use a full face mask at night, since they are not tossing around and losing seal as often occurs otherwise. Then they can use lighter, less cumbersome nasal masks or mouthpiece breathing (taking an assisted breath when they need it) during the day.
