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Organizing  the  Bedroom  for Incontinence  Care

This phase of care can last for years and their physical needs  must be addressed with the same determination as we afford our newborns.    

• They tend to lose weight, their body stiffens and begins to curl into the fetal position.   They become emaciated no matter how nutritious their meals are.   

• Skin quality is a primary concern during this stage, as is oral hygiene and incontinence care.    Bed sores are a constant concern.   It is amazing how quickly a pressure point can develop into a full scale bed sore, the depth and size of which can result in hospital care.   It goes without saying that preventative care is the key.   For what it is worth, until the last week of Tom's life (and 4 years of that life were spent in bed or in a chair), he never developed a bed sore.   This was due to how he was propped, how he was handled and how his hygiene was handled.   

• Urinary tract infections happen,  and they can't describe their discomfort.   

• A simple cold can turn into pneumonia overnight because their immune system is impaired.   Our people die of pneumonia or septicemia because of the breakdown of the immune system or they die of starvation and dehydration because they lose their ability to swallow.

At this point in care you can return your home to it's formal glory.   Your person is no longer able to get into any trouble if left unattended.   In fact I recommend that you do return favorite things of theirs to their view.   Give them the window view if possible so that they can see the outside world, even if they can't express a relationship to it.    They will continue to enjoy their favorite music, massage therapy, aroma therapy, having their hair and nails cut.   All of these tactile things are important to them the way these things are important to a newborn.  These things are also important to their health.  

Basics to consider:   

Bathing:  There are those who feel that daily bathing is not only unnecessary, the constant handling can put them at risk.   I disagree.   I always felt that the pouring of water over Tom everyday was not only a therapeutic thing to do for him, knowing we all feel better when we feel clean, I felt it was also a spiritual exercise.   Shower time was a time for more touch, body contact, soft caresses and love, similarly to how I behave when I bathe my grandchildren.  

The Recliner Moving Tom from  bed, to recliner, on a daily basis had benefits for circulation and general health as well as keeping them in the mainstream of life as much as possible.

• If you don't have one and have the means to purchase one, do so.

• Make sure it is a softly padded one with solid fabric from the top to the bottom of the foot rest.  There are some that have a space between the seat and the foot rest.  This is a booby trap waiting for your person to accidentally step inside and fall. 

• Because of Tom's height I also wedged an ottoman under the foot rest.  This not only provided support for his whole body it also deterred him from getting out of the chair because the foot rest would no longer release.

• As his condition worsened, I added an egg crate mattress which I cut to size and covered that with a soft throw.  This added extra support and softness.

• Notice the pillow under his knees.  Tom's body began to curl by then and the pillow kept his heels from rubbing on the chair and to gave him extra support under his knees.

• Always keep soft cotton socks on.  Tom was still able to stand and walk with help, although he also used a wheel chair by the time this photo was taken and he was still wearing sweat pants daily.   Shortly before he died, the sweats came off, although the socks stayed.  I used down comforters and wraps to keep him warm.   

Maintaining good basic health isn't about prolonging their lives as much as it is about giving them as good a quality as possible to the life that is left.    At this stage of care the only prognosis is death.  They will die with or without family contact, social stimulation, and nothing but the very basics of care.  However, having seen Tom through to the end and having provided him with more than just the very basics of care, I know his death wasn't as lonely as it might have been because of the nurturing he received.  

Get a hospital bed.   Medicaid, Medicare, and in many instances private insurance will cover the lion's share of this rental.   Report the stiffness that develops to your doctor and tell your doctor you need a hospital bed.   It is good rule of thumb to assume that once they are unable to walk, they should have a hospital bed.    You need a prescription from your doctor in order to facilitate it's rental through Medicare, and any medical supply place will expedite the necessary papers for Medicare, Medicaid or your insurance.   If you have Hospice on board they will take care of the paper work for you.   You can have the bed within a day.   It comes in pieces so it will fit into any apartment or home.    It will be assembled for you.  Your only task is to make sure the room is cleared of space for the bed.

For a detailed description on how to set up the bed with illustrations click here....

• These beds come with mattresses which are covered in plastic.   As stated above, this can be very hard on the delicate skin problems that develop with this disease.   I not only covered Tom's twin size mattress with a queen size feather bed, I also added an egg crate mattress on top.  This eliminated any need to deal with the plastic being any where near Tom's body.

• The feather bed proved to be the best investment I made.   As Tom's illness progressed the softness cradled him.   They are now available in a synthetic fiber fill which seems to have much the same resiliency as down.  There are wool pads now available through various catalogues and a variety of foam pads that actually conform to body shape.   These are possible substitutes if your person is allergic to feathers.    

• Egg crates come in different sizes and depths.   Some allow for pressure points where body contact is most common and the more expensive ones are quite sturdy.

• There are also air mattresses that work on a small motor which systematically alters the depth of the mattress at different points so that the body doesn't hold the weight for any prolonged period in one position.    These are available through medical supply companies and I doubt that Medicare or Medicaid will pay for this luxury.  For those who can afford it, it is simply wonderful for our people.

NOTE:   It is possible to cover a feather bed and an egg crate with a fitted cotton sheet and it will hold both together.   I know because that is what I did.    On top of the sheet I then placed the baby crib pad topped with the towel.  Over him I used a top flannel sheet and a down filled comforter.   Tom literally slept on a cloud.   (The top sheet ceases to be a problem once they are bed-ridden because they can't move enough to tangle themselves in the draperies and the extra cover offers more warmth.)   For what it is worth I still use a fitted sheet to cover the down feather bed I sleep on.

This is very important once they are bed-bound:

• You must keep the knees, elbows, heels, the neck and the bum supported at all times.   

• Put pillows under the knees, at the base of the feet and between underarms and the body if they are in a reclining position.   

• If they lie on their side put a pillow between the legs so that ankles and knees don't rub together.  

•  Body pillows on either side of the body at night save their banging into the bed rails.     

• And last but not least, pad the bed rails.    The amount of damage they can do to themselves if they have myoclones  (uncontrollable jerks of the upper and/or lower torso) can be impressive.   

• If their extremities don't lay flat on the bed or in a recliner, then prop that portion of the limb with a pillow.  

If you have ever propped yourself up in bed to read with your knees bent up then you know how a good deal of you time is spent fighting gravity while your heels rub along the sheets as your knees tend to straighten out.    Where we can reposition ourselves without any problem, they can't.   A pillow under the knees and at the base of the feet remedy this so that they don't have to struggle at all.  

The point of all the pillowing is to fight the affects of gravity on skin rubbing on sheets and other parts of the body.   These are where the pressure points begin and these then move into bed sores.   The propping also relieves the aching that comes with muscles and bones that can't be straightened but which nevertheless feel the affects of gravity pulling on them.    

I see body pillows, neck pillows, knee pillows, arm rests, advertised on television and in catalogues and they are carried in a host of stores.   

Even if your person is cared for in a nursing home, these props are essential for good skin maintenance as well as the overall comfort of your person.     I recommend that you speak with nursing home personnel regarding this issue as a means of educating them and other caregivers.     

The recliner chair:   As one last extra point, look at the angles of a recliner chair and you will note that the legs and back are supported in a cradle position.   This angle needs to be reproduced for our people while they are in bed.   Even babies sit in the cradling arms of their car seats.    While our babies are slowly straightening out as their limbs and spine become stronger, our people are moving in reverse.  Being cradled is just as important for them for much the same reasons..

The Assisting and Supervision Stage

The Taking Charge Stage

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