Archive for July, 2010

New Thinking for Effective Caregiving A Conversation Between an Occupational Therapist and a Caregiver’s Coach (Part 2)

Learned Helplessness – (continued from Family Wellness Part 1…)

This topic of family dynamics is so rich, Debra. Are there other ways in which you encounter and work with family dynamics?

Sure. For instance, when there’s a disability issue, there almost always needs to be a shift in family dynamics, because our goal is client empowerment.  The client’s roles and responsibilities may have been changed due to the illness, injury or disability, while other family members may have to take on new roles and responsibilities. These changes are both sources of possible stress on the family dynamics. These stresses require a shift in family dynamics or the family runs the risk of promoting helplessness in their loved one.

As the OT, I do a lot of family training around the client’s ability, showing family how independent the client is, or can be.  I find many times family members aren’t nearly as patient as I am with my client. They may have to watch their loved one struggle taking off a shirt or tying a shoe. Ideally, to truly help the person without taking over, getting dressed may take two hours. But that might not work for the family. We want the client to be as independent as possible, so we have to get it across to the family member that sitting on your hands can be helping. It’s important to give the client the time that they need.

It can be a critical choice; either the family member does a task faster, OR they support their loved one in working toward independence. Doing everything for the disabled loved one promotes what we call “learned helplessness.” It doesn’t help the client to be as independent as possible. We need to meet everyone’s needs, or at least find a compromise that works.

This pattern of learned helplessness can be compounded by a family’s culture.  Especially in transgenerational households, people are more family oriented, helpful (at times to a fault,) and they may have specific habits, roles and responsibilities to which they are accustomed. Out of love, the family may want to do everything.  It may just be an inherent part of their culture.  As OTs we have to be respectful of the culture, yet still be an advocate for the wellness of the client. We draw a balance and try to teach them new ways of being loving.

That’s beautiful Debra, and such a challenge. This comes up regularly with caregivers. I find it helpful to teach them about the distinction between helping, fixing, and true service. Rachel Naomi Remen (Clinical Professor of Family and Community Medicine at the UCSF School of Medicine) spells out the difference between fixing, helping, and serving in her book, “My Grandfather’s Blessings.” To sum it up briefly here, chronic helping supports the helplessness or neediness of the other, and fixing presupposes that the other is broken. Though helping, fixing and serving can look alike to the observer, the inner experiences differ. Over time, fixing and helping are draining, while service is renewing. When we serve, our work sustains us.

Robert K. Greenleaf, gives us the litmus test to know whether we are truly serving our loved ones. “Do those served grow as persons? Do they, while being served, become healthier, wiser, freer, more autonomous?”

So really, Debra, we’re talking about helping caregivers to reinterpret their role, changing it to a partnership with their loved one in a way that empowers them, helping them to grow and to be as independent at possible. This idea of reinterpretation comes up often during caregiver coaching sessions. What other kinds of reinterpretation crop up in your work with clients? (to be continued…)

—Holly Whiteside, caregiver’s coach & advocate, is author of “The Caregiver’s Compass: How to Navigate with Balance and Effectiveness Using Mindful Caregiving.” She invented Mindful Caregiving tools during her caregiving decade by applying to herself the life coaching principles that she had been teaching others. Find her book at, or learn more at Holly can be reached at


July 28, 2010 at 6:32 am Leave a comment

New Thinking for Effective Caregiving: A Conversation Between an Occupational Therapist and a Caregiver’s Coach (Part 1)

Family Wellness-

We all are touched by injury, illness or disability. At EmpowerAbility, LLC, we know that for a client, everyone in their immediate circle plays a role in how well they heal. Whether I’m completing a home assessment, or working directly with the client in Occupational Therapy, it’s not just about the client, it’s about everyone around that person. It’s making sure that the environmental modifications I’m recommending in the home work for everyone.

The time we spend is frequently an almost equal split between time with the family and time with the client. In OT, we have to simultaneously be aware of everyone’s capabilities, limitations, and expectations. One example was with a caregiver whose father had Alzheimer’s. OT was a lifesaver. We were able to pull the daughter aside and help her sidestep burnout, by giving her strategies that helped her complete daily living activities while emphasizing the positive aspects of care. We gave her strategies for communicating with her father that let her get back in touch her values and social relationship that underlie her caregiving role. We also found her local resources that provided respite care (giving caregivers that much needed break,) and also caregivers groups where she could talk with others who fully relate to the caregiving role.

Everywhere along the spectrum, from acute care to outpatient and home health Occupational Therapy settings, the families are involved.

So, Debra, you’re really talking about holistic wellness within the family system. Often the caregiver is the one left out of that picture because self-care can seem counter-intuitive from the caregiver’s perspective. Initially, there’s a sort of blindness caused by resisting what is happening, feeling they must “fix” the situation or their loved one.  “I’m trying to help my dad, to slow down his decline, and you’re suggesting that I focus on myself?!” That blindness prevents them from seeing their role in the bigger picture. Seeing caregiving with a broader view requires a new way of seeing for the caregiver. Once they ease up on their resistance and begin to accept that changes are normal and inevitable, they become freer to question, “What is My part in this?” And then they are more open to seeing the need for their own self-care.

So, caregiving is rife with unknowns and things that can’t be controlled. The one thing over which caregivers do have control is their own health and well-being. The family is a dynamic system—what one family member says, and how they are, effects the others. If I’m a caregiver experiencing a mood, it can infect others. If I’m letting myself get burned out, I’m not available to do the caregiving to which I’ve committed. So in order to do my best job, I am actually required to take care of myself, get the support I need, manage my emotions honestly and well. Selfcare is no longer a frill—it’s a necessity.

This topic of family dynamics is so rich, Debra. Are other ways in which you encounter and work with family dynamics? (to be continued)

—Holly Whiteside, caregiver’s coach & advocate, is author of “The Caregiver’s Compass: How to Navigate with Balance and Effectiveness Using Mindful Caregiving.” She invented Mindful Caregiving tools during her caregiving decade by applying to herself the life coaching principles that she had been teaching others. Find her book at, or learn more at Holly can be reached at

July 21, 2010 at 7:55 am 1 comment

Accessible Treehouses… you have one in your state?

I just recently read an article in the July/August 2010 Action, a publication of United Spinal Association, about a company that builds accessible treehouses. I immediately found myself at their website looking at beautiful pictures of large-scale treehouses, with amazing views, that meet the needs of all users.

The company, Forever Young Treehouses from Burlington, Vermont, has a goal to build an accessible treehouse in each state.  It all started in 1998 when Bill Allen, founder, was building a treehouse with Phil Trabulsky at his home in Vermont.  Per the website and article, it is their experience as board members on the Make-A-Wish Foundation of Vermont that has given them a broader appreciation for the needs of children with disabilities, and subsequently impacted their thought process and design for building treehouses.  Thus, the birth of the idea of the universally accessible treehouse.

Twelve years later, Forever Young Treehouses has completed 29 projects in 16 states.  Each treehouse location utilizes trees within the site to create the overall design.  The largest treehouse to date is at Paul Newman’s Hole in the Wall Gang Camp in Ashford, Connecticut and integrates 23 trees into the overall design.

Playing in a treehouse is an experience typically enjoyed in childhood.  Being able to give this experience to all children, regardless of ability, is priceless.  The treehouses not only benefit the kids, but adults can channel their inner-child and enjoy them as well.  The beautiful views and overall landscape, combined with the nostalgia make for an enjoyable experience for all.

I am very excited that there is a treehouse built in Kennett Square, Pennsvlvania (Lookout Loft) as this is not far from my house.  However, currently there has not been a treehouse built for my home state, Delaware…..yet.  I hope to be a part of that change.

Do you have an accessible treehouse in your state?

What do you think of the completed projects?

July 17, 2010 at 3:34 pm Leave a comment

In celebration of the 20th anniversary of the ADA


The Americans with Disabilities Act (ADA) is turning 20 this year.  Signed into law by President George H.W. Bush on July 26, 1990, it is “An Act to establish a clear and comprehensive prohibition of discrimination on the basis of disability.”  Eighteen years later, on September 25, 2008, the ADA Amendments Act of 2008 (ADAAA) was signed into law by President George W. Bush.  The intent of this amendment was to give a larger scope of protection to workers with disabilities.

ADA Basics

There are 5 titles of the ADA.  They include:

  1. Title I—Employment
  2. Title II—Public Entitites (and public transportation)
  3. Title III—Public Accommodations (and Commercial facilities)
  4. Title IV—Telecommunications
  5. Title V—Miscellaneous Provisions (including technical provisions)

For more detailed information regarding the ADA, you can contact The ADA National Network.  Their role is “to provide information, guidance and training on the ADA, tailored to meet the needs of business, government and individuals at local, regional and national levels.”  There are ten regional ADA National Network Centers throughout the country.  Mine is the Mid-Atlantic Center.  Do you know yours?

What will you be doing on July 26th?

Many cities are having local ADA anniversary celebrations.  My home state, Delaware, is having the “Delaware does ADA 2010” celebration on July 26th at Rehoboth Beach.  My former city, Philadelphia, is having their ADA Celebration, hosted by Liberty Resources, at Independence Park.  Where’s your local ADA Awareness celebration? To find out where a celebration is near you, go to this link.

It is only two weeks away, what will you be doing on this anniversary?

What does the ADA mean to you???

July 11, 2010 at 12:03 pm Leave a comment

How does your modified garden grow?

As Bill and I plucked the first cherry tomato from our garden I was inspired to write this post.  Every year we plant a vegetable garden.  Typically, it is filled with a variety of tomatoes and peppers; habanero, jalapeno and chili peppers along with some herbs.  Although, it is due to the many hungry rabbits in our backyard, combined with Bill needing access to the garden from a wheelchair, that we require a few modifications.

We have quite the proliferation of rabbits in our backyard, which would require any in-ground garden to have some kind of fencing to keep the animals out.  This typical garden setup not only poses many accessibility issues, it requires the gardener to do quite a bit of bending to tend to the plants.  Currently, we are gardening out of large pots, where the top of the pot is 2 feet off the ground.  This has eliminated the concern of the rabbits and places the growing vegetables at a height Bill can access from a manual or power wheelchair.

This setup works well for us, but still requires Bill to take a front or side approach to the potted vegetables to access them.  The ideal setup would be to use raised planters with easily worked soil.  These planters provide the same benefit as the pots with raising the height of the vegetables to an easy to reach height for all gardeners, but gives the added benefit of allowing a wheelchair user to roll under the planter for increased ease of access.  The raised planters would also provide knee space for a gardener that chooses to sit on a gardening bench while tending to the plants instead of standing.

We also use a gardening cart.  Bill has a place for a hitch on the back of his power wheelchair (yes, a hitch!) and is able to put the handle of the cart around the hitch and pull the cart to the desired destination.  The cart holds all of the needed gardening supplies and allows Bill ease of access and use as the items are also raised off the ground.  A cart is of benefit to any gardener, as it allows for ease of transport of the gardening tools and other necessities, while also placing these items at a height that decreases the need for bending. Being able to transport all your needed items one time, versus making multiple trips also maximizes your energy conservation.

Depending on the needs of the user, there are a plethora of products that allow for increased independence and overall ease of performing gardening.  Here are a few more to go with the items mentioned above:

  • Long handled tools to maximize reach and decrease bending
  • Ergonomic tools to help relieve stress on joints
  • Adapted garden spray will easily attach to a wheelchair and has multiple adjustments for increased ease of use
  • Garden bench/seat: many different kinds on the market now, some with wheels to help navigate the garden while seated and some with compartments to carry tools and other gardening essentials.

Along with these modifications, it is also important to make sure to work for short periods of time and take breaks.  This will help to conserve energy and maintain a safe working pace while working in the outside heat.  This is especially important for gardeners with difficulty regulating their internal temperature.

All gardeners should take precaution regarding sun exposure, but gardeners with impaired sensation should make sure to take a few extra precautions.  Proper clothing and protection for the hands and feet is necessary for all gardeners, but is imperative for gardeners with decreased tactile sensation as it decreases the chance of unknowingly causing cuts and bruises. Proper skin inspection should be done once the activity is completed.

Happy gardening!

What adapted gardening products do you use/like?

Fruits of our labor....lots of hot peppers!

July 4, 2010 at 9:28 am 3 comments

The role of Occupational Therapy and Aging in Place

I have been an Occupational Therapist (OT) for 15 years and I continue to love what I do.  However, as mentioned in previous posts, I am frequently still educating the public about what Occupational Therapy is.  I am dedicating this blog post to continuing to educate about OT and promote our work with Aging in Place.

According to the American Occupational Therapy Association (AOTA), OT is “a science-driven, evidence based profession that enables people of all ages to live life to its fullest by helping them promote health and prevent—or live with—illness, injury or disability”.  Essentially, the person who needs OT can be anyone, for whatever reason, that cannot do the things in life that they want or need to do.  We look at a person’s occupations (work, education, leisure, play, social participation, sleep, etc.) that are meaningful to them and work to maximize the person’s participation and independence with completion of these tasks.

As Occupational Therapists, we look holistically at the person, taking into consideration their strengths and limitations and how this will impact the task to be performed.  We are also considering the environment in which the task is to be performed and how the environment may also impact the person’s health, wellness and participation.

So, what is an OT’s role with Aging in Place?  Part of AOTA’s 2017 Centennial Vision “is to meet society’s occupational needs”.  This can be done with the aging population by helping them to age in place and “live life to its fullest” (AOTA slogan).  By utilizing our science-driven background, we are able to assess how a person may function in their home and participate in activities of daily living (ADLs).  We gather this information and make recommendations to improve a person’s independence and safety within their home.  These recommendations may include simple, or more involved environmental modifications such as recommending rocker switches, the addition of more lighting, lever handles on doors to the installation of grab bars, a curbless roll-in shower or the adjustment of a counter to allow for wheelchair accessibility.

As an Occupational Therapist that specializes in environmental modifications, I feel I bring a unique perspective to the aging in place and home modifications team.  We (OTs, contractors, builders, interior designers, product vendors, architects) are all pieces of the puzzle, but together best meet the needs of the client for aging in place home modifications.

July 3, 2010 at 9:26 am 3 comments

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