ALS From Both Sides,
			Care of an ALS Patient By Diane Huberty, Retired RN, Certified Neuro Nurse and ALS Patient

Beds & Mattresses

A frequently asked question is what bed to get for someone with ALS. The answer is that the bed frame is chosen for the convenience and safety of the features it offers and the mattress is chosen for the PALS comfort and prevention of pressure sores -- and the two should be bought separately. Unless you can afford to buy new bed frames and mattresses as the ALS progresses, ignore advice given by those only dealing with the early stages of ALS. They may absolutely love the expensive adjustable bed and mattress they just bought but they haven't yet dealt with the full range of problems that ALS presents. Too often that bed has to be replaced as time passes.

Getting anything other than a hospital bed covered by insurance requires extremely good insurance or extremely good documentation of why you need the extra features of the bed. That includes all the Tempurpedic, Sleep Number, Casper, etc. beds. It also includes specialized hospital and medical beds such as those used in ICUs, beds that rotate, turn into a chair position, or help in standing or transferring the patient. If a hospital bed frame can meet the same need with the addition of extra equipment or a special mattress, they won't provide a specialized bed. The most common scenario is wanting/needing a bed that turns the patient side to side to prevent or heal pressure sores. Since this type of mattress is available for most twin or hospital beds, it is less likely to be covered.

Bed frame requirements

  1. Adjustable Height
    1. Most people are aware that a bed that raises the head and foot is desirable, but few adjustable beds raise the entire bed. That is important for several reasons. In the early stages, raising the bed height helps the PALS to stand up to get out of bed. When a wheelchair is needed, raising/lowering the bed to use a sliding board is an inexpensive solution for transferring to and from the bed.
    2. A Hoyer type of lift for transfers requires several inches of space under the bed to maneuver the legs under the bed and the patient over it. Many of the adjustable beds don't have that space. They require an overhead lift for transferring (which is actually preferable to a Hoyer lift in many ways).
    3. The ability to raise the bed is especially important for the caregiver to be able to reposition or turn the patient without injuring their back. Simple care such as giving tube feedings, bathing, etc. are also hard on the caregivers back if they have to bend over to do them.
    4. Wheels on the bed allow it to be move easily when needed, but the wheels must have locks to prevent the bed from moving when getting to a standing position or transferring.
  2. Rails
    1. Rails are generally considered a safety feature but they have other important uses. They help the PALS turn themselves in bed and provide stability when getting in and out of bed unless they are the wobbly ones that rely on the mattress to hold them in place.
    2. They are a convenient spot to mount not only the bed controls but also call buttons, drink holders, and other paraphernalia.
  3. Wheels
    1. Wheels on the bed frame are not essential but in a small room they allow it to be move easily to get to both side. Getting a Hoyer lift or wheelchair in position may require moving the bed. The wheels must have locks to prevent the bed from moving when getting to a standing position or transferring.
  4. The Resisted Hospital Bed
      If the picture forming in your mind of a bed frame which will provide all that is needed to avoid having to replace it later a hospital bed, you have in mind a bed frame that will fit the PALS and caregivers needs through the entire course of ALS. We can't erase the mind-set that says a hospital bed is only for really sick people, but there are ways to minimize the rest of the things that make people resist one.
      1. Many people say their hospital bed is so uncomfortable they refuse to use it. That scares every who hears that away from getting a hospital bed. The reality is that a hospital bed frame isn't the problem. It is the mattress you put on it!
      2. Couples often don't want to give up sleeping together in the same bed. Because a hospital bed can be raised and lowered, it can be positioned along side and at the same height as a regular bed. They even make foam wedges to fill in the annoying "lover's leap" gap between the mattresses!

      3. Another objection is that they look so obviously medical. There are an increasing number of beds that have normal looking head and foot boards. There are even head boards that slide over a plain hospital bed to make it look like nice furniture. Some people don't care about the looks of the bed, but it can be enough of concern to make people spend a fortune on Tempurpedic or Sleep Number beds only to struggle with them later. The only way they can work long term is if they can be separated so the caregiver can easily reach the person with ALS from both sides of the bed and the height is adjusable.
      4. Insurance, Medicare, and Medicaid will not cover a fully electric hospital bed, just one you have to crank. If you require frequent or immediate position changes, they will cover a semi-electric bed that raises the head/and/or foot but the bed height is stilll by cranking. You can, however, get a fully electric bed through them by requesting it and paying the difference between it and the standard or semi-electric yourself.

        If you are on hospice, you may have to sign off hospice for a day or two in order to get a hospital bed through through insurance/Medicare. This is commonly done when Hospice doesn't provide any type of equipment you need. Discuss with them whether signing off and back on their services will be a problem.

        Mattresses

        Remember the fairy tale of the Princess and the Pea? In it, a Queen doubts the claim of a young woman who says she is a princess. She tests her by placing a pea under a stack of twenty mattresses on the bed where the supposed princess is to sleep. In the morning she asks the young woman how she slept. The woman proves she is indeed a princess by replying that there was terrible lump in her mattress. I suspect that could be a good test for the diagnosis of ALS as it makes a comfortable mattress so hard to find!

        I have done the mattress upgrade routine beginning with an egg crate type of foam mattress topper, then a memory foam topper, then replacing the standard hospital bed mattress with a regular mattress, then adding a second, thicker layer of memory foam, all before realizing that twenty mattresses would not keep me comfortable. I needed a "real" pressure relief mattress. I searched online for one and, because my ROHO wheelchair cushion had worked so well, I bought a ROHO mattress topper for $200 on Amazon. It has been quite good, even allowing me to lie on my somewhat arthritic hips and somewhat subluxated shoulders for an hour or so of a blissful change of position. I don't know if it will be the last mattress I will have to upgrade to, but I do know I could have saved myself a bit of money and a lot of miserable nights if it had been the first one I bought!

More to be added whenever I get another burst of ambition!
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