Tammy Tested. Caregiver Approved. 3ELove

It’s a sign! A sign that communicates values and triumph. “Embrace Diversity. Educate Your Community. Empower Each Other. Love Life.”

When I turned the corner at the April Abilities Expo in Los Angeles, I witnessed a crowd of people jockeying for position at the cash register. What a great sight to see in a challenging economy! These shoppers were looking for a sign, and they found it at 3ELove. Check out the creative twist on the universal sign that dates back to the politically-incorrect days of “Handicapped.” 3ELove replaced the wheels with a heart. Brilliant!

Founded in 2007 by siblings Annie and Stevie Hopkins, 3E Love is a disability awareness clothing line and marketing company. Their mission is all about living life no matter the obstacles, and I think they’ve created a universal sign that will be as familiar and popular as the “Happy Face.”

“By replacing the wheel with a heart, the stigma of the wheelchair is also removed, and it can be a symbol for people with any disability or impairment. It represents the person, not society's perception of their lack in abilities,” according to the website, www.3elove.bigcartel.com. “The symbol is an attitude and a lifestyle. It's accepting one's abilities and rallying around that diversity and turning it into strength.”

3ELove is a powerful example of turning your creative ideas into reality! What’s in your Imagination?

Express Your SELF!

I know from experience that the benefits of having an outlet for creative expression helps me maintain balance in my life critical to the health of my Mind, Body and Spirit. Dedicating time to creativity and self-expression also is an area that takes a backseat on a regular basis. I’m reminded of this given that my father is a professional musician and my husband is a professional artist.

The dominant part of their time is spent on their craft. Meanwhile, I’m just trying to make it down my checklist to see if I have 45 minutes left in the day to squeeze in my workout and to practice guitar. My dad and my husband, however, spend hours writing music, practicing horns, sketching and painting. At the end of the day, they’ll tell me they are still searching for that one melody or that one canvas that’s just perfect.

Having lived with two artisans for so many years, I know there may be another driver at work. No matter what else draws on their attention, they both always have something to look forward to. Neither rest on their laurels talking about the song, book or painting they someday will produce. Instead, they’re busy toiling away at their heart’s desire. What a delicious way to live your life!

Intuitively in my early 20’s, I must have known the impact of pursuing a personal dream. My mother, as you may know had been bedbound for years. At this point in my 20’s, she was diagnosed with a relatively painless, but terminal Non-Hodgkins Lymphoma, and given weeks to live. I was devastated at the thought of losing my mom—and bound and determined to do everything to keep her.

To that end, I wanted everything about her. I wanted every recipe recorded, every story, every piece of advice. Selfishly, I hired a journalism student, Brenda, from my alma mater to work with her on “Katrin’s Korners,” a book my mom had always talked about writing, but never made time to write. Brenda spent 10 hours a week with her on this project.

Admittedly, Brenda offered my mother a level of attention, respect and patience that I would not have. In those hours they spent together, my mother documented for me and my sisters all the short stories we’d heard growing up. The early stories start around the time of the Great Depression, then move to World War II and birth of the Big Band Era, and the revolution of women and the coming of the 21st Century. One theme I picked up on is that no matter the mood around her, my mom was determined to make lemons into lemonade. She lived her whole life that way. The terminal weeks predicted for my mother turned into months, and the months turned into more than a year. It might have been the book project that stretched the weeks for us, but in my heart I believe there is a Greater Spirit that makes the universe tick.

When I founded HomeBoundResources.com, posting my mother’s book, “Katrin’s Korners” was one of my first goals. It took a few years, but it’s there now for the world to read.

In celebration of this month’s theme in www.DisabledDealerMagazine.com, I’ve discounted the books on the website to less than $10. Please check them out at http://www.homeboundresources.com/publications.html, and I hope my mom serves as an inspiration to you.

Don’t wait any longer to pursue your passions. Seize today and discover how much your creativity can energize your life!

Tammy Tested. Caregiver Approved.

Shut Up About Your Perfect Kid!

Laughter is the best medicine! Gina Gallagher and Patricia Konjoian are two sisters who also happen to be ordinary mothers of special children. Gina’s daughter, Katie, has Asperger’s syndrome and Patty’s daughter, Jennifer, has bipolar disorder. In 2006, they abandoned the dream of being perfect moms with perfect kids and published their first book, “Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents with Special Children.” Now published by Random House, these two moms are sharing their lessons on how to approach real life and real parenting with a sense of humor and a loaded toolbox of resources. Here’s an example of genuine caregivers sharing their successes and failures with a broader community. Their website and blog, www.ShutUpAbout.com , is honest and funny. They’re gaining a following from coast to coast, and their book is reasonably priced around $15. Sign up to follow their blog, and be prepared for a busy site where you’ll discover lots of other parents who not only follow, but actively post replies—which may or may not work for you depending upon how your notifications tuned. Most of all, they have a great attitude and I hope they put a smile on your face the way they did on mine.

Tammy I. Glenn is the founder of HomeBoundResources.com and
HomeBoundResources.BlogSpot.com. She serves as an expert advisor on elder care/aging to KCET-TV Los Angeles and is a member of the Board of Advisors for the National Senior Citizens Bureau. She has nearly 20 years of experience as a caregiver to her mother and is the author of “25 Simple Tips for Caregivers” in addition to numerous contributed articles.

What's in your toolbox?

(Tammy's nephew, Blake, takes after his Great Grampa, Sam "Daddy Jazz" Glenn. Here he is rockin' out at his band's first gig in October 2010.)

One of the greatest personal challenges I’ve faced has been to define my identity within the context of the strong women in my family, particularly my mother. I never doubted for a minute that my Mom—even totally bedbound—wasn’t fully capable of accomplishing anything she set out to do. Same thing with my sisters.

Growing up in the shadow of such strong women is both a blessing and a curse. On one hand, I inherited so many of their incredible qualities. On the other, I had an opportunity to consciously break some destructive patterns and cut my own path. The latter journey is the richest and most difficult to achieve. My mother had high expectations for me. One of them was that I would earn a college degree, another was that I would not pursue a traditional path toward marriage, but rather explore my career options before setting out to get married and have a family. As one more example, she wanted me to be financially independent in that I would know how to earn, save and invest my own money.

Keep in mind that these were cutting edge ideas for a woman, especially born to someone who was raised during the Great Depression. My mother was a teenager during World War II, and a wife and mom during the 1950’s when women barely had driver’s licenses, let alone their own bank accounts.

The point is that we can visualize extraordinary lives for our children. The challenge is to arm them with the tools not only so that they can visualize for themselves, but also so that they can overcome generational obstacles in order to cut their own paths.

Kids—with autism, physical or mental challenges—deserve the best toolbox we can provide. Remember the old Chinese proverb, “Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime.” That’s where your parenting challenge comes in.

We all have challenges. Armed with the right tools, however, we can tackle most anything. It begins with your own paradigm, your own pattern of behavior, which I believe can be altered by asking oneself, “If I could, how would I?” And, more importantly, pass this idea down to a child, “If you could, how would you?”

Nine year old Ryan, whom I met at the Abilities Expo, dismissed the pinball machines a few years back when he first met Chris and Jim Rohan at the Disabled Dealer booth. How could a kid who couldn’t use his arms possibly play pinball? Jim asked that question, found the answer, and today, Ryan is a Pinball Whiz!

Beware your own self-imposed limitations! And, remember that these challenges are just part of the characteristics of who we are. The challenges do not define us. It’s how we use the toolbox that defines us.

I dedicate this month’s column to my handsome nephew, Blake, who I believe is more challenged being a teenager right now than he is by autism. In fact, I sometimes have to be reminded that autism is a challenge for him at all. Blake is a whiz on the electric guitar, he knows how to operate a flight simulator, plays a mean hand of cards, and he filmed and produced the video of my wedding. This is a young man who was and is armed with an extraordinary toolbox—and so far, I haven’t seen many obstacles that he’s not confident to tackle. I’m so proud of you, Blake, for using the tools available to you. And, to Blake’s mom, Kristen, thank you for setting such a great example for mothers who have special kids!

Mobility Matters Newsletter

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Have you seen the latest Abilities Buzz?

The Abilities Expo publishes a free monthly newsletter that is packed with resources. I hope you'll check it out!

Here's a link to the February issue which featured Yours Truly!

http://www.abilitiesexpo.com/buzz26.html

Tammy Tested. Caregiver Approved. The Abilities Expo

For more than 30 years, The Abilities Expo has been serving the lives of people of all ages with all types and levels of disabilities. I vividly remember the first time I learned about and attended the Abilities Expo. It would have been in the late 1980’s. My father and I went together and we saw all kinds of products and learned about various services available to the community.

In particular, I remember a Lift Chair that would elevate (example pictured) to help a person get near standing before putting significant weight on the legs. My Dad and I were fascinated by the then-advanced technology, and wishing we’d known about this a few years prior when my mother might have been able to benefit from it. We also saw bath aids, patient lifts, and a variety of wheelchairs. Talk about two kids in a candy store! Think how far we’ve advanced in the last 15 years!

The Abilities Expo is now in its 32nd year. Technology has evolved, as have the menu of products and services. In addition to the opportunity to visit with a lot of vendors in one location, The Abilities Expo also offers relevant workshops on important topics like accessibility, financial planning, how to purchase an adaptive vehicle, travel, dating and more. Among the other highlights I enjoy are the sporting events and entertainment geared especially toward individuals with physical challenges. Moreover, I found it very comforting to attend a conference with like-minded individuals who understood the challenges my family and I were encountering every day! This was a great way to meet new friends, and to expand my knowledge and support system.

The Abilities Expo is coming to Los Angeles April 15-17, and the Expo also is held throughout the country in New York Chicago, Houston, San Jose and Atlanta throughout the year. There’s no charge to attend and my compliments to American Airlines for offering a 5% discount for travel to the L.A. show.

While it’s my pleasure to tell you that I’ve personally tested out the Abilities Expo and know a number of caregivers who wouldn’t miss it, I have one criticism. The Los Angeles Convention Center is not the easiest venue to navigate—and that’s my own personal experience, on foot, in my sneakers! Still, the fact that the Expo demands a large venue like the one L.A. has to offer tells me that the show continues to grow and that means greater products and services are available.

For more information, check out their website at: http://www.abilitiesexpo.com/ I hope to meet you there!

Caregivers: Giving our stamp of approval!

Last month, I worked with my team of advisors to introduce a new stamp of approval: The HomeBoundResources.com “Tammy Tested. Caregiver Approved” Seal of Approval. My motivation for doing this stems from years of frustration investing in expensive products and services that yielded failed expectations.

It is reported that the combined market for U.S. home healthcare products has approached and may have surpassed a $5 billion industry. $5 billion! Products are costly, difficult to obtain and usually don’t offer a money-back guarantee or return policy. Furthermore, while manufacturers have good intentions, the best product designers are ones who have been in the trenches and can empathize with physical challenges of being both the caregiver and the patient.

It’s unfortunate, but manufacturers still are not refining their designs with the end-user in mind. I’ve heard from numerous caregivers who continue to find mistakes made not only in the design of products, but in the overall accessibility. The voice of the caregiver and the patient are not being heard in the healthcare industries that serve the population. Furthermore, each care experience is unique, and individuals still must evaluate products based on their personal range of abilities, affordability and physical requirements. I think this becomes easier with time and experience, but caregivers who are new to their situation don’t have that luxury.

The HomeBoundResources.com Seal of Approval uses some basic methods of evaluation to set a benchmark. Most importantly, by offering the Seal, I hope to raise awareness of Empathic Design and encourage manufacturers to engineer their products with the utmost sensitivity. Based on my experience and in consultation with numerous caregivers and patients across the globe, I developed the following criteria for evaluating a product, and I hope to apply this to services as well:

• 
  
  Empathic Design o Is the end-user in mind? Has the manufacturer consulted with caregivers and patients to incorporate the attributes that will best serve their customers?


• 
  
  Demonstrated Use o How widely tested/used is the product by caregivers/patients?


• 
  
  Functional Quality o What thought went into the materials, construction, and weight?


• 
  
  Accessibility o While the patient may be the ultimate end-user, the product must consider the caregiver’s role. How easy is this to use? What is the pricing/return policy? Is a demonstration available either in person or on the internet? Will the patient be self-sufficient? How much help is required?


• 
  
  Aesthetic Quality o Adaptive devices are plentiful, but will the patient take pride in using this product?


• 
  
  Manufacturer’s Reputation o How is the manufacturer perceived in the care giving community? Do they maintain a Satisfactory rating or better by the Better Business Bureau?

We’re in this together, and the criteria are not cut in stone. As our knowledge increases and new technologies emerge, so too will the criteria for the Seal of Approval. For now, please join me and other caregivers in sending a message to empathetic manufacturers and designers. Make sure the voice of the caregiver and the patient are heard by demanding effective products and services.

When siblings buy their way out of caregiving...

Tammy,

I am so excited to write to you. I would love to start a community support group for caregivers. I have been caregiving for quite awhile...first my husband during his illness till he passed away, then my father, and now my mother. I love taking care of my family, but I do get overwhelmed, and lonely at times.

My biggest frustration has been my feeling of resentment towards my siblings, their attitude that it is my obligation, that they don't have to be a part of this.

They contribute money to Mom's financial situation, but it ends there.

Thanks for your wonderful website.
Lindsay

The Fold-Away Wheelchair Shower

(As published in the February 2011 edition of Disabled Dealer. http://www.disableddealermagazine.com/)

How much is a shower worth to you?

If you don't have bathroom facilities that will accommodate your physical challenges, then access to a portable shower that can be set up in the privacy of your own home may be the answer.

I wish the FAWSsit had been available when I was a caregiver for my mother. Without major renovations, our home bathroom would not accommodate her for either the toilet or the shower. The sponge bath was her only option and we were fortunate that she never encountered any significant health issues that were related to hygiene.

The FAWSsit has been available for several years now and used by countless individuals with special needs. This is the kind of Empathic Design that I look for in good quality products. The fact that it was designed by a caregiver and tested by people with multiple challenges gives me greater confidence in my recommendation.

Take a look at http://www.fawssit.com/ for specific details. This portable shower weighs in at about 40 pounds, is user-friendly and comes in several models that adapt to various situations. It sets up in five minutes near a kitchen or bathroom sink and offers a fair amount of privacy and easy clean-up. I do recommend the accompanying water-resistant travel wheelchair for use with this portable shower. While total costs are likely to be far less than a remodel, a good shower is priceless!

Looking for Individual Health Insurance

Until recently, my husband and I had healthcare provided by an employer. When we realized we would no longer be covered, my hair started to curl. I've been so accustomed to making sure everyone else around me was taken care of that I panicked when I had to think about me.

It is almost more overwhelming to have to think about one's self than it is to think about the care of another. I had lots of emotional issues swirling around me and somewhere in the middle of that I needed to wade through it all and find answers to my questions.

I use lists to help me get things done, so that's what I did in my search for insurance. I made a list based on conversations that I had with various friends who have had real experiences:

• Prescription coverage
• Annual cap on out-of-pocket expenses
• 0% co-insurance coverage (this means that I don't have to pick up any additional annual costs)
• Hospitalization
• ...just in case...maternity coverage
• Reasonable deductable
• Reasonable office visits

In addition, I called around to some of my friends whom I know are in a similar situation where they provide their own coverage. I received some valuable input that I factored into my equation.

• One friend had major medical with a $3,000 deductible, but no office visits or prescriptions. She recommended I use www.esurance.com
• Another supplements their major medical plan with a Healthcare Savings Account. This is an interesting option because the funds you save are tax-free. She told me she has a debit card which she uses for everything that's medical related.
• Still another friend, whom I met at random at an event, shared her experience battling breast cancer with her major medical insurance. Her annual out-of-pocket was $15,000 with additional co-insurance costs. She would not go this route again.
• None of the folks I've talked to have suggested that I speak with their insurance representative. Most know about www.esurance.com

Actually, www.esurance.com was daunting when I first signed on to the site. I don't have a lot of patience to wade through the details. So, I asked for a call from one of the representatives. The phone rang immediately!

I shared my criteria list (above) and he boiled it down rather quickly for me. I knew I wanted to stay with one of about four companies and within those, it was clear that only one was an option.

Your experience with purchasing private insurance would be much appreciated. I hope you'll share your thoughts here at the HomeBoundResources Blogspot.

From my heart to yours,

Tammy

Managed Care...My "Plan A"

I've been looking into Long-Term Care, and recently had an interesting conversation with a friend who is an Occupational Therapist. These are the professionals who evaluate one's ability, among other things, to live independently.

She posed some interesting questions which I am now considering. To date, she asked me how many of the grandparents and parents in my family had required long-term care. By the way, Long-Term is defined as one month or more of 24-hour care. To this, I responded, "None, outside of my mom." Everyone's healthy, active, maintaining a strong social network, traveling, and even keeping part-time jobs of some kind. Neither my husband's parents nor my father show any signs of memory loss or slowing down.

Based on her professional and personal experiences, my friend challenged me on my perceived need to purchase Long-Term Care. She suggested that unless one of our parents were to have a major accident or develop a long-term, life-threatening illness (which doesn't run in either sides of our family), I may want to consider Managed Care as my first line of defense.

Managed Care is a great alternative, if needed. Managed Care facilities offer safe, comfortable living environments where people live independently, and have access to immediate assistance or medical help. Also known as Senior Living Communities, I understand they equate to living in a dormitory at college. Seniors can usually choose from a variety of living situations that include apartment-style, townhouse or a free-standing home. Occupational Therapists, like my friend, are on staff to regularly assess each person's needs and to ensure that everyone's needs are being addressed in a timely manner.

In the event that I live across the country, as is the case with my husband's parents, then a Managed Care facility would allow them to stay close to their social network and established physicians. I believe that this is one of the single-most important factors in a care-giving decision. What's more, Managed Care facilities often host a hospital on site that is within walking distance of the residences. This is another important component in making sure that spouses and friends have easy and frequent access to support one another.

Now, I have not yet explored the costs of my "Plan A," but I think this is a much more realistic and humane approach to ensuring a safe, dignified and loving solution for parents who are clearly independent and capable of caring for themselves.

I'll be sending out a sample of the assessment used by Occupational Therapists to determine an individual's ability to live independently. If you'd like a copy, visit the Home Page at http://www.homeboundresources.com/ and sign up for my weekly tips and information.

If you've had a personal experience in determining your best plan: Managed Care and/or Long-Term Care, please share your thoughts with us.

On being the Grievor and the Consoler

Two close friends each lost their mothers this last week.

The first call came last Saturday evening. The second call came Sunday afternoon. Each knew death was imminent, and each family was preparing in its own way. Still, the pain of losing someone so close to you is beyond words.

That's part of the reason I'm addressing both the role of the Grievor and the Consoler this week. I'm not sure which is more uncomfortable. It's because Death is such an uncommon routine to most of us. When it happens, we don't know how to act or how to console. Whichever shoes you find yourself in, it's good to have a plan.

Now, my two friends are quite different. One follows religion and the other doesn't. Both, however, are following their own private rituals in order to heal their hearts. I, as the consoler, stayed present and emotionally available for both of them this week.

In the case of my first friend who is an observant Jew, he and his family are finding tremendous comfort in following the rituals of the religion. Judaism has very definite ways by which the deceased is not only prepared for burial, but also mourned following the services. It's from observing these practices myself that I've found it so important to encourage others to explore some branch of organized religion.

People find tremendous comfort in being surround by their family, their friends and their community. Religion--whatever Faith you practice--offers a roadmap toward healing. If you have not explored or recently participated in a religious community, I hope you'll consider it as an option. We are not meant to go through Life alone.

That's why, in the case of my second friend, I encouraged him to organize a memorial service of some kind to celebrate his mother's life. His mother specified that she did not want a burial service, so her children have made private arrangements for her body.

By not having a ritual in place, however, my friend and his sister were left a little uncertain as to how to confront their grief as well as the friends and family who also were feeling the loss. I encouraged them to consider having an Open House Memorial at their mother's home. Just like my first friend who would be surrounded by family and friends who loved his mom and loves him.

"Don't worry about the food," I said. "There'll be plenty of food!" It doesn't seem to matter what culture, what religion, everyone shares the love of comfort food. In both cases, my friends were smothered with love, hugs, good food, old stories, new stories, and their mother's houses were so crowded and noisy that I wondered if their mom wasn't around the corner laughing and crying with the rest of us.

Death is not comfortable--now should it be--for the Grievor or the Consoler, but when the time comes, there's no getting out of it. Neither the Grievor nor the Consoler needs to say much. Sometimes a hug says it all.

Most of all, map out a ritual so that you don't have to improvise while you're in a heightened state of emotion. You don't have to have every detail figured out, but have a framework of a plan in place that will help you and others begin the healing process.

This week, I write in memory of Martha and Corinne--two extraordinary women who influenced my life with their smiles, their good cooking, their passionate approach to life, and most of all, their precious sons who will always be two of my best friends. Hugs Guys!

Starting the dialogue...

It’s time to have that talk about Long-Term Care with The Parents.

Don’t be surprised when I tell you that even with my years of experience as a caregiver, I’m still fumbling through some of the fundamentals. Long-Term Care is a good example. I’ve had discussions with my father about the subject, but I now have a new dynamic in my life. I have In-Laws for the first time.

Last August, I married a kooky, wonderful and talented man. My husband and I are polar opposites in many ways. He represents the childhood I never had, and he's like a big kid who still likes to build sandcastles and have pillow fights. This is a man who doesn’t have to have the bed made and the kitchen spotless in order to have a great day. He wouldn't lose precious time that could go toward watching the sunset or going to the golf course.

On the other hand, there's me. I take everything very seriously and while my other half is still responsible, he'll be out the door for a walk on the beach while I'm still folding the laundry. My running joke is that somewhere in the middle of his playful nature and my workaholic personality is a normal person experiencing a healthy balance.

While I value that Big Kid quality for which I married him, my husband also reminds me of a little kid who will go out of his way to avoid talking about the tough stuff. Take, for example, our most recent discussion on Long-Term Care which was prompted by discussions we’ve been having with his brother and my new sister-in-law.

Whether or not this is the right response, it seems that the issue of long-term care leads one to jump to the end-game which is the realization that people eventually die. No matter your age, I can’t think of too many people who want to discuss the end-all, be-all of death. But, somewhere between now and that last breath may or may not be a road that takes us down the path of long-term care.

Let’s add one more layer of complication to the subject at hand: Distance.

As is the case in many families today, the parents live in one area of the country and the children often live in other parts. In our case, we live on opposite coasts, fondly referred to as The East Wing and The West Wing. The East Wing houses our three young nephews, whom I know from personal experience to be a delicious handful and it’s a plane ride for everyone when we go to visit The Parents.

While my husband and I dated for a few years before we tied the knot, it wasn’t until the week of our wedding that we had a semi-serious discussion with my new brother and sister-in-law about long-term care should The Parents require it. It wasn’t until that week and a holiday visit that followed that certain realities sunk in.

Reality #1: My Sister-in-Law explained the overwhelming responsibilities that she and my brother-in-law have in raising their family. To be sure, raising children is an enormous emotional, physical, mental and financial commitment. She shared with me that they are not in a position to provide financial or physical support in the event of a long-term illness.

Reality #2: The Parents have a modest retirement, are in fair health, and do not have long-term care insurance.

Reality #3: The Parents live across the country, so the logistics and cost of care for them has the potential for being a significant burden on us given the position that The East Wing has taken.

Reality #4: Tammy is compelled to raise her concerns with her husband and eventually her in-laws so that we can make an appropriate plan that honors everyone’s resources and capacity.

Here’s where I am today, June 28, 2009. Hubby and I have been chatting for the last several months and he now understands my concerns. He encouraged me to raise them directly with his mother. Fortunately, I have an outstanding relationship with my Mother-in-Law, though I recognize that Long-Term Care is a very delicate subject in any relationship.

My biggest challenge was how to raise the subject with all The Parents. So, here’s what I did. I received some information from work about long-term care insurance and I used that notification as an opportunity to review plans with my own father. Following that discussion, I raised the subject during a call to my Mom-in-Law, sharing with her some of the thoughts my Dad and I had explored together. She's was very receptive and I gave her ample time to contemplate our talk.

Now, we have plans to see my husband's parents in person this summer. We’ve already set the stage for continuing this dialogue with them at that time. I’ll let you know how that goes, and in the meantime, I would really welcome your thoughts and ideas on making this a successful outcome for everyone concerned.

Good Grief!

Good Grief! I forwarded a link to this new blog out to the http://www.homeboundresources.com/ subscriber base, and received a handful of replies requesting that I remove their names from the list because they were no longer caregivers. One lost her mother, another lost his wife…so heart-wrenching. They collectively said that if I addressed the recovery after the loss, they’d welcome my thoughts. So, this one’s for you guys…

I don’t have to tell you that Attitude is Everything! Sometimes I’ve got it, and sometimes I can’t find it. In the case of my mom, I knew intuitively from the time I was a little girl at the age of eight years old that my mom was likely to die earlier in my life than later. Her health was so fragile, and each year brought a new level of loss to all of us. First she lost the use of her hands, then her ability to live without pain, then her mobility which prompted the use of a urinal and the bedpan.

It wasn’t until I put myself in psychotherapy in my early 30’s that my therapist looked at me and said, “You’re an expert in Loss. You know how to deal with this.”

What a concept! At least in one person’s eyes, I was an expert in the field of Loss. My therapist was correct. Believe me when I tell you that’s a bit intimidating. But, count on Loss to be a certainty, in the same way that we count on Gravity to keep us Earth-bound.

Think of it this way. If you know your Mind, Body and Spirit are about to be flipped upside-down and sideways, how can you best take care of You in order to ride through the Loss you are about to experience.

If you haven’t started with Your Body, let’s start with the basics. Are you getting enough sleep? Are you eating healthy and regularly? Did you floss today? Did you look in the mirror and give Your Self positive feedback? Words are very powerful tools, and the words you speak to Your Self have a greater impact than the words of other people.

Once I am doing the best I can to care for My Body, then I reflect on My Mind. My best advice is that when I want to be successful at Loss, I do my homework. I feed my Mind with good information that helps me understand what’s coming down.

One might not always have the luxury of time to prepare, but either way, I suggest you try to intellectualize what’s transpiring in your life. Look for successful role models—because YOU ARE NOT ALONE!—who have achieved balance and success in their struggle. Study how they did it. Pick and choose what you think might work for you and give yourself ample time to process, to prepare and to heal.

I personally saved the Spirit for last because I find that when my Body and Mind are nourished, my Spirit follows along more swiftly. I do have friends, however, who have strong Spirits and an unshakable Faith that allows them to move more gracefully through Loss than I do. In addition to Faith, I have one simple prescription for feeding your Spirit.

Look for experiences, words, smells, tastes, opportunities for touch that are energized with light and happiness. After my mother died, I went to the movies to see “Driving Miss Daisy.” Big Mistake! The content of that film made me sob uncontrollably for 20-30 minutes. For several years after that, I was very careful to select books, movies, experiences that gave me a lot of smiles and laughter.

I was raw with emotion when my mom was diagnosed with a terminal illness, and that emotion lasted for several years after she died. Now was my time to take care of me, and I did that by drawing a line in the sand and filtering who and what surrounded me. On hindsight, it took about eight years after my mom’s death before I enlisted the support of a therapist. I encourage you to explore that option sooner rather than later, but most of all, please don’t be reluctant to seek the help of a professional. They have tools to share with you that will accelerate your healing in ways you would never imagine!

If my father’s ready to share his journey, I’ll encourage him to write the next entry on his recovery. After all, I lost my mom, but he lost his life partner, his best friend, his lover, his wife. He was fortunate in that he knew her death was imminent and he made a healing plan for himself for when she died. What’s even more extraordinary about my father is that he had the courage to implement the plan and follow through even when his heart was breaking. He forced himself outside of his comfort zone, to date, to make new friends, and to break into new social scenes. Fast forward 17 years later and he is living one of the most fulfilling times in his entire life! I couldn’t be happier or more proud of having a father with that kind of strength.

If you haven’t found that yet, keep searching. I’m confident you will find it, too!

By the way, if you’d like to subscribe to the http://www.homeboundresources.com/ website, check out the sign-up box on the home page of the website!

And, don't forget! If you're going to experience Grief, think about it with a good attitude. Think, "Good Grief!"

Recommended Reading

“25 Simple Tips for Caregivers” and “Katrin’s Korners” were published with the caregiver and the patient in mind.

These books and my efforts through HomeBoundResources and the blog are a labor of love for me. When I look back on 17 years of my life as a caregiver, I feel an obligation to share with you the lessons of this experience. Together, as a community, we have a wealth of knowledge from which others can benefit.

Please check out these two publications, available for purchase at http://www.homeboundresources.com/publications.html

In the last year of my mother’s life, I hired a journalism student from California State University, Northridge to take dictation and transpose my mother’s delightful stories into a book for me and my family. These were the five, 10 and 15-minute vignettes that my mother had collected over her lifetime. The stories about my grandfather leaving his home on the Indian Reservation to become a cook on a wagon train, the one about my grandmother’s first experience driving a car without knowing where the brakes were, the time my sister, Debbie, drug a garden hose into the neighbor’s dirty house, so she could help with the cleaning!

I could go on and on with these stories, but if you enjoy Author Robert Fulghum, then you are bound to enjoy “Katrin’s Korners” by Author Katherine Alice Budd Glenn! It goes to show you that some of your life’s greatest accomplishments can be made from your hospital bed!

“25 Simple Tips for Caregivers” are some of the most basic instructions and ideas on how to use a bedpan, how to shampoo someone else’s hair, how to participate in a democratic society when it’s hard to leave the house. 25 Tips is hardly scratching the surface, but it’s a beginning, and I hope it’s a beginning that gets you thinking about other ideas that you can share to make a homebound experience less debilitating and more enriching.

Empathic Design & Bed Pans

I was in the local pharmacy where I had déjà vu. “Is that the same bedpan design I recall seeing 20 years ago?” I wondered. “Did engineering design stall, or is it just that nobody knows to challenge the norm?”

When I look back on my experience as a caregiver and as a patient, I recall numerous stories of jury-rigging a situation so that my father and I could accommodate my mother’s physical challenges. My father will vividly recount the hours he spent researching wheelchairs, patient lifts, door hinges, intercom systems, portable ramps, female urinals, and the indispensable bedpan, known more colloquially as a “piss pot.”

To be sure, standardization in design offers certain elegance when it comes to a company’s bottom line. After all, mass production often equates to profits. But, there exists no better contribution to one’s own “bottom line” than a comfortable bedpan—and yes, they do exist!

Tammy's Tip: Check out Allegro Medical Supply for good product designs.

Clearly, I’m touting personal experience here. I helped my bed bound mother use a bedpan on a daily basis for nearly 17 years. On an even more personal note, I used one myself following an emergency appendectomy when I was in my early 20s. All the more reason I was struck by the antiquity of design during my recent trip to the pharmacy.

Now, there are bedpans and then there are bedpans. They are made from a variety of materials, including metals, glass or plastic. Plastic is more popular for home use. Bedpans also come in a variety of shapes and sizes. A European style looks like an oversized cooking pot with a long handle. Then, there’s the traditional oval style which reminds me of an episode from the popular television series, “M.A.S.H.”

More recently, an ergonomic style of bedpan was introduced by Cleanius. It looks like something out of a Star Trek episode, and boasts a design that offers privacy, reduced stress and odor, and less juggling for men who often require a urinal with the traditional bedpan.

Well, men may have their own challenges when it comes to using a traditional bedpan, but we can all relate to the immediate hours of discomfort that follow any lower abdominal surgery. One doesn’t want to cough, sneeze, or roll over, anticipating the shockwaves of pain that will accompany such an act. Foregoing the dignity issues involved (because that’s a story all by itself!), I do not know of a bed pan that would not require patients to bend their knees, secure traction with their feet, and use their stomach muscles to lift the lower back, in order for the bedpan to slip into the proper position.

Herein rests my main quandary. Twenty years later while scanning the shelf at the pharmacy, I took note of high-tech walking canes, crutch pads, bed pads, shower chairs, urinals for men and women—all helpful products. On the top right shelf, however, was a sleek looking bedpan with advertising boasting easy clean-up, strong construction, and the number of liters the receptacle would hold. The designers overlooked the comfort factor altogether. The four-inch high sides of this standard design require bent knees, lifting of the “bottom line,” more commonly referred to as bridging, and an arched back—none of which consider the comfort or pain-level of the patient. Where is the sensitivity in design?

Fortunately, there have been some movements by engineering designers to improve on healthcare aids. My personal favorite is the “slipper foot” or “fracture” bedpan, tapered with a wedge that allows the patient to find a comfortable position with few worries about having ample room in the receptacle. Clearly, Cleanius is putting some thought into their design, but how can we encourage other designers and engineers to do the same?

“Spark Innovation Through Empathic Design,” written in 1997 by Dorothy Leonard and Jeffrey F. Rayport for the Harvard Business Review, was one of the few reports available on the internet that addresses the need for business to survey and listen to customers. “Sometimes, customers are so accustomed to current conditions that they don’t think to ask for a new solution,” writes Leonard and Rayport. “Consider how subtle are preferences of smell and sound, yet car manufacturers can design automobile interiors to evoke the specific scent of expensive leather that U.S. buyers expect in a luxury vehicle.”

Well, now why can’t we give this attention to healthcare aids? This technique is called “Empathic Design,” and while many leading corporations employ these techniques in their research and development, Empathic Design still is not common practice. Leonard and Rayport indicate that unless a current product exists in the marketplace, one that “embodies at least the most primitive form of a new product, consumers have no foundation on which to formulate their opinions.”

In my experience, consumers who are dealing with healthcare issues and challenges have little energy left to solve their immediate problems, let alone change an industry. Still, a tidal wave of consumers with special needs is looming on the horizon. This consumer base will be looking for products that give them a positive experience. Simple communication about what’s working and what’s not will be the dividing line between successful businesses and those that fail. After all, this just isn’t about bedpans. It’s about everyone’s bottom line.

Caring for the Caregiver

A word of advice...Take care of your Self before you take care of others.

Of course, that's the ideal approach. Unfortunately, I'm reminded all too frequently that we don't live in an ideal world. Still, small efforts go a long way. My gift to you today is Pajama Yoga, a video produced by writer/editor and yoga enthusiast, Jean O'Sullivan.

It only takes a few minutes in the morning to limber up and be ready to take on the day. Check out the link to her fabuous YouTube video which is listed under PAJAMA YOGA in My Favorite Links.