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.