I Really Did Not Plan to Become a Caregiver

I really did not plan to become a caregiver—it’s just what life handed me when it was least convenient. I was working as a senior health care executive for a major computer corporation when my only sister, and only remaining family member, was diagnosed with a very aggressive form of cancer. Suddenly, a decision had to be made—to leave her alone to suffer through the horrors of chemotherapy, multiple surgeries, and radiation, or to set aside my hard-earned career position and give her what comfort and dignity I could. Clearly, there was no choice. I took a year’s leave of absence from work and took over all the tasks of managing her IV’s, her illness, her doctor appointments at the Mayo Clinic three hours from home, her bathing, her hydration, her household, her life. Mine went on hold.

But, as a person always driven to do my best, I determined that my 6 years of pharmacy education and my 30 years of career accomplishments could help me move into this most important job of my life. And, from it came a critical realization that not all of the challenges of daily living have acceptable resolutions. While we were always able to get excellent medical care, even in her home, the most basic daily need of a decent shower was not possible. From that year of watching both her health and dignity decline, I determined that I could not simply accept this ugly fate for someone I love. And I didn’t. I, along with my husband and two friends, designed and patented a shower for use by anyone who could sit in a wheelchair, be they temporarily or permanently disabled.

In the 7 years that have now passed, I have learned a tremendous amount from the individuals we seek to help now, and know that I can give perspective on alternatives for hygiene care that come from not only a solution provider and company owner, but also, and most importantly, from a sister who did her research and really did help to keep her sister alive and as healthy as possible against incredible odds. My greatest joy now comes from reading letters from other individuals with disabilities who are also feeling healthier, happier, and cleaner, because of a simple portable shower. What a gift that is to me!

Judy Seidmeyer, R.Ph., F.A.C.A.

Accessible Bathing While Traveling

What a joke! Unfortunately, it is really a sad commentary on the options available for most individuals with real disabilities. And, too often, the lack of truly viable bathing options when traveling has resulted in simply the resignation to stay home, where the only potential accessible bathing may be. But that does not have to be the case anymore.

Trip planning for individuals with disabilities has traditionally been a very real problem. Hotels that claim to offer accessible rooms may have only a very small percentage of their rooms set up for accessibility, usually fewer than 5 or 6 in total, or they may only really be offering a bathtub with a grab bar, or a bench at the far end of the bathtub but water controls at the front. These options are not easy to negotiate for many quads or paraplegics who, even if they can get into the tub or onto a bench, cannot control water temperature or flow. Cleaning crews may use cleaning agents that leave a slick residue—a perfect set up for falling-- even when access has been possible. Or a room may have doors which do not allow for total wheelchair access. You know what I’m talking about.

But, there are now solutions for travelers, and many of these solutions are compact, light-weight, and very affordable. Whether a person is in a wheelchair due to spinal cord injury, ALS, or simply age-related weakness or instability, the options now exist to meet all the basic personal care needs—including showering—and allowing for the continuation of an active lifestyle.

There are a few keys to easy and dignified traveling which can open a whole new, stimulating world of experiences, no matter what an individual’s disability may be. By asking specific questions, and obtaining a few essential support items, you can ensure that you can have a pleasant experience in spite of the present lack of accommodations for individuals with disabilities.

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Bath Safety

Most of us take bathing and bathing safety for granted, but there are millions of clients with disabilities for whom this is either a luxury, or simply not an option. But, the HME/DME industry has more options to address the bathing needs of individuals with disabilities than ever before. And safety no longer needs to be a concern.

Traditionally, the issues for bathing individuals with disabilities have been numerous and varied. The type of disability, the nature of the care giving environment, the control or ownership of the home, the financial resources available, to name just a few, have dictated not only the alternative for home care, but also may have been the determining factors for transfer from a home environment to a nursing home or other permanent care facility.

The type of disability has, and continues to be, the most critical determinant for selecting the bathing alternative. Seniors, for example, may only feel a little instability when standing, and the use of a simple hand bar may suffice. Some individuals may be able to stand, but only for a short while. But there are also a lot of individuals who are more severely disabled and may not be able to safely do transfers or walk-ins to address their bathing needs. Children with cerebral palsy can often be lifted into a tub for bathing, until they grow and become too heavy for parents or caregivers to safely lift them into the tub without risking accidents to either the CP patient or to the caregiver. Likewise, high quads, amputees, individuals who require a reclined position, even some paraplegics, may not benefit from the equipment alternatives that have traditionally been available.

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Bariatric Bathing Solutions

Judith L. Seidmeyer, R.Ph.
President, Care Giver Support Products, LLC

Kermit the frog used to say, “It’s not easy being green”. He knew that the world doesn’t always understand how hard being somewhat different can be. The same is only too true for very large individuals, or bariatrics, and especially for the morbidly obese. It’s not easy being big. Issues that are faced by the obese include fitting into spaces designed for the average sized individual, but they also face challenges of poor balance, problems of adequate hygiene of areas under skin folds, and even complete washing because of the inability to reach parts of their own bodies. Caregivers, too, face significant safety and logistics issues when assisting bariatrics. Unfortunately, the solutions for daily living have not always been designed to address the needs of the obese.

The medical community and the manufacturers of products for individuals with disabilities are now addressing the needs of large individuals.

Before going into the types of bathing support devices now focused on the bariatric community, it is important to truly understand the problems they face. One of the first problems is simply that of access. Getting into a bathroom, for example, that has a 24” door, as many of them have, can present an obstacle that previously could only be addressed by re-modeling. And, even if the doorway is large enough, most shower stalls or bathtubs are designed for individuals under 250 pounds, or thereabouts. A 36 X 36 inch shower is simply not going to be usable by someone who weighs 300 pounds or more. And a standard bathtub is out of the question.

But, along with access, balance is another key problem for large individuals. Simply wielding 400 or 600 pounds or more around on a skeletal structure designed for half or a third of that weight presents significant challenges. And, falling can be catastrophic. IF the person can get up by themselves, they continue to face injury issues; but in many cases, an individual of large size simply cannot get themselves up and may suffer further injury when others try to assist. Stepping into a shower stall or a tub, even an over-sized shower or tub, presents dangers of slipping and falling, and poor balance will only exacerbate the problem.

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Raise Your Hand If You Want To Go To A Nursing Home To Get A Bath

Judy Seidmeyer, R.Ph., and Patricia Johnson, R.N.

No one, huh? Well the facts are simple: If you cannot address the basic living needs of an individual, including seniors, what is the choice?

As baby boomers are in their 60’s, many of them are facing not only the prospect of life in a nursing home themselves in not too many years, but many are currently facing the issue straight on with their parents. They want to make it possible for Mom and/or Dad to stay either in their own home, or move in with their baby boomer children. And in many cases, the bulk of their day-to-day needs can be met well by one or the other of the children or spouses being able to be there with the senior. And, care from agencies both public and private can be excellent. Food, medical attention, even housekeeping can be obtained, and even paid for, by Medicare and other programs.

The rub is bathing.

It is not that some bathing alternatives may be available, especially if you have money. You can do an accessibility re-model to a bathroom, or install one of the “walk-in” tubs. You have to own the house, though, and you have to recognize that the value of the house will not be increased, but will most likely be decreased with this type of re-model. If your parents are in their 80’s, they may not have the financial wherewithal to do a $25,000 re-model. And, baby boomer children may not want to make a permanent change to their house to meet their parents’ needs, especially when they see that the years remaining may not be long.

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Tammy's Team