Kathryn was a 16-year-old high quad and weighed 130 pounds. Her dad had pulled his back out while attempting to lift her out of her wheelchair to put her onto a bench in the bathtub. He had dropped her more often in recent months, and she really hated even having him involved in her bathing. But, what choice?
Kathyrn’s story is not unusual. She was born with her severe disability. From the time she was tiny her parents bathed her and cared for her. But, as we all hope to do, she was getting older. And with that came new challenges, especially for families who cannot remodel a home.
Life care planning is difficult enough in defining all the different types of support devices that will be necessary, but when you add to that the complications driven by increasing age, emotional maturation, increased weight, as well as housing situation, you have challenges in getting their assistive environment defined for a whole lifetime.
Bathing is not the only issue that has implications and changed requirements with age, but it is clearly one of the riskiest for both the individual with the disability and their caregiver. Safety needs to be paramount in determining the best short and long term solutions. The ideal situation is obviously one where no lifting or transferring is required. And, there should be no risk of slipping or scalding.
There are safe bathing solutions if re-modeling for accessibility is an option. Floors can be changed to allow for unobstructed wheelchair access, doorways can be opened to allow for even large sized wheelchairs to roll in, shower heads can be lowered to be within easy reach from a seated position, and tubs can be modified or simply accessed differently with special chairs.
But first, you have to be able to do the modifications, and for many people with disabilities, home ownership is not an option, so remodeling is clearly not possible. And even for those who do own their own homes, remodeling is expensive, and it tends to lower resale values when accessibility remodeling has been done. And, if you are doing the remodel to care for an adolescent or young adult who may want to move away from home in a matter of only a few years, this becomes a less than ideal alternative.
In addition to safety, bathing effectiveness needs to be a real concern. Sponge bathing is probably the least effective for maintaining skin health and basic hygiene. But far too many individuals see this as their only real option. For some, a sliding chair into a bathtub can work, but if there is no caregiver assisting, slips, falls, or even scalding can be real issues when reaching for the controls of the tub.
And not to be overlooked is also the emotional challenges of sub-optimal bathing alternatives. Whether it is as simple as sheer embarrassment, as with Kathryn, of having someone else lift your naked body into a tub, or the social ostracizing from poor hygiene or catheter accidents that cannot be cleaned up in a timely and thorough manner, the net result is an emotional toll that able-bodied individuals who can shower do not have to face.
All of these issues apply to individuals with disabilities of all ages, and their caregivers. But let’s talk primarily about the added complications of children, who have a habit of growing up! And with that aging process, their bathing needs and alternatives change too.
A tiny child with even a serious disability can be bathed in manners not that different from that used with able-bodied babies. An adult can usually hold the baby, or put them into a small sink based bathing pan, and do everything necessary. Neither safety nor effectiveness need to be issues.
As the child becomes a little older, bathtubs can still work fine, as long as the caregiver is strong enough to lift the child into the tub, hold them carefully, and still wash them thoroughly to keep their skin adequately rinsed with water to maintain health.
But when the child becomes larger, lifting becomes more of a risk factor for both the child and the caregiver. Bathing positions may become problematic, especially for children who may require some degree of tilt to enable proper breathing, such as a child with cerebral palsy. Now how does the caregiver manage the transfer, maintain the proper positioning, adequately perform the bathing, and ensure that no problems occur. With a 100 pound plus child who may also be growing in height to five feet or more, simply handling and maneuvering can be a major challenge.
And, then, as with Kathryn, there become issues of simple dignity and lack of embarrassment in having to be handled so much just to be kept clean.
Not to be forgotten also is the potential for change in the health condition of the child with a disability. Whereas the physical condition may improve with age, as we all know, too often the years are not kind and physical disabilities tend to worsen rather than improve. So even if a bathing solution may work early on, decrease in strength in combination with increase in size may force a whole new bathing alternative.
So what choices really exist? Until a few years ago, there were few alternatives for individuals with disabilities, or for their families. Small children were simply lifted into sinks or tubs for bathing, young adolescents were lifted by the stronger family members into tubs, or given sponge baths, and then as adults, the options really became only sponge baths. In recent years we have seen the development of slides for bathtub access, which can work provided a transfer is possible without difficulty and provided that the individual can either reach all bathtub controls from the bench or have a caregiver who can assist. If controls are not reachable, though, either falls from attempting to reach the controls or scalding from lack of access to the tub controls can occur.
“Walk in” tubs are being heavily advertised right now as an alternative. But these do present a few challenges as well, such as the need to be able to walk in! And once in, the person to be bathed needs to sit waiting for the tub to fill, then bathe as they would in any other bathtub, but have to wait, wet and cold, while the tub drains sufficiently to allow for egress from the tub.
Again, not a bad option, but when you consider that people with disabilities, especially severe disabilities, tend to be at greater risk for contracting diseases, this is not always ideal. And, as stated above, they are for people who can walk in, which is clearly not the case for many who have disabilities.
Approximately five years ago, a portable shower alternative was introduced. While this solution is not perfect either, it presents some important advantages. It is safe for both caregiver and patient since no lifting or transferring is required. Bathing is done right in the wheelchair. It is effective because adequate water can reach all body parts and help ensure that “sponge bath disease”, or aeruginosa folliculitis, does not occur due to soap residue buildup, or simply bacteria that cannot be washed away. Water temperature can be set at the faucet before beginning the shower so scalding is not a concern. And, because the portable showers for accessibility are built to enable a caregiver to reach in to assist without having to actually get into the shower, the experience is much more pleasant for both the caregiver and the person receiving the shower.
And, because the shower is portable, no modifications need to be made to the house. This alternative works well for renters, for individuals who live in mobile homes, or for families who are serving as caregivers but do not want to alter their homes for accessibility.
For children, there are alternatives, but it is important to recognize that as they age, their mix of alternatives may change. So from a life care planning perspective, finding solutions that can work for the entire life span are clearly ideal. While a remodeled home is great, even that may not be as desirable, as solutions that can work at all ages, can be transported to different locations, or even to different homes over time may be preferable.
When the child becomes an adult, and with luck is able to move out and have a home of his or her own, and can make the decisions for their own situation, it is incumbent upon the caregivers and the life care planners to provide a good solution during the growing years. The best news is that this is now possible for a fraction of the cost of remodeling, and can make sponge bathing a horror of the past!
To finish this story, let me tell you about Kathryn now. She has moved from her parents’ rented home into her own apartment. She took her portable shower stall with her and she is able to handle bathing all by herself. She graduated from high school and is now in college with plans to become an attorney representing the needs of individuals with disabilities. And she will tell you that the way she feels now is very different! She no longer feels like “a piece of meat being handled by her parents.” She is now just a lovely, healthy, sweet-smelling, happy young woman.