Alone at the end, really?

At the end of our life, are we truly alone on the journey? (Were we alone at the beginning — moments before birth?) Now that I’ve written it, it doesn’t seem plausible, realistic, and certainly not compassionate.  Even in the purely metaphysical and spiritual sense, this could be argued, especially if you are religious.  However, it’s difficult to argue that anyone can really know how you are feeling inside your body and therefore, that part of the journey is truly all yours.  From the outside looking in of course, most of us will have people with us, including family, friends, religious conduits and the ubiquitous medical professionals.

I’m a planner.  Can we plan for this journey?  If we’re fortunate, I’d like to think “yes.”

 

The Next 30 Days

With 30 days left in Hiya’s Medicare/Medicaid coverage for care facility stay, I was concerned for Hiya.  Where would she go?  How could she even physically muster enough energy to move out of the facility?  We both researched and called other facilities, but were not overly concerned about it as you might think we needed to be.  Perhaps we thought a miracle would happen or that the 30 days would outlive Hiya.

In any case, the 30 days came and apparently without a court order or nasty-gram from Medicare or comment by the care facility staff.  When I asked Hiya as to whether she had received notice from the agency, she brushed the question aside as if it wasn’t worth her energy to answer it.  To this day, I don’t know if the deadline had truly been acknowledged or not.  I can only assume that the care facility made a management decision, and a compassionate one at that, to let Hiya remain in the facility for her remaining days, without coverage or reimbursement to the facility. Perhaps there is some humanity in managed healthcare after all.

Not everything stayed the same however.  Attitudes among the staff and head caregivers seemed to change; interactions became more contentious and Hiya was left to wait longer and longer before requests for aid were answered.  At least this is the story I received from Hiya.  Of course, when I was visiting I didn’t see any of this lack of attention.  The only clue I had was the eyeball to eyeball look between me and the charge nurse mutually acknowledged that ”yes,” Hiya was demanding and a handful.

And, why shouldn’t she be demanding? It was her life she was fighting for.  Other than the weekly visits from me, there was no one else spending time with her to fight for her and with her.  A self-advocate for all her adult life, Hiya knew what she needed and knew what the care team should be capable of.   Getting them to deliver was the challenge.

One example of this was shower time.  Hiya refused to shower in the facility unless it had been properly cleaned and disinfected.  Before selecting the shower stall she would have staff wheel her into each one so that it could be inspected.  If it had any remaining hair near the drain or smelled remotely organic, Hiya would quickly disqualify it.

On one weekend when she desperately wanted to shower and staff had not come to help her do the stall to stall inspection, I wheeled her around.  Although none of the stalls truly measured up to satisfaction, I did come upon a solution.  You see it was Hiya’s aversion to her bare feet touching the shower stall floor that was the primary reason for her concern.  She did not want to contract any more disease from anyone.

After a short trip to CVS/pharmacy for two pair of plastic, industrial looking sandals, Hiya was finally able to comfortably select and take her showers. Sometimes solutions come easiest to those of us on the outside looking in.

Shortage of PCPs Impacts Caregivers

Caregivers have their work cut out for them. You think it’s tough now, wait until 2025 when there will be an estimated shortage of 52,000 primary care physicians, according a recent study cited in MedCityNews and written up in the Annals of Family Medicine.  This number, alarming as it is, is actually worse when you compound in the additional 32 million additional people who will have access to medical care by 2014 when the Affordable Care Act provisions start to kick in.

Caregivers, who typically are the ones who get the first call from their loved one regarding a symptom — life threatening and otherwise — also typically do the first stage of diagnosis — assess the degree of severity of the symptom and what it may impact.  They try to keep in mind what they know from past experiences with the loved one and, more importantly, what they don’t know, in an effort to not overstep their role and make a wrong assessment.  If it’s a symptom and circumstance they deem out of their comfort zone of knowledge and ability to manage, it’s time to call a doctor.

What if there is no doctor available for weeks?  What the study did not review was the number of available non-doctors that might be in supply in 2025.  We all know the wonderful service provided by nurse practitioners.  In fact, many of us prefer the bedside manner and care by a nurse practitioner than the doctor.  I haven’t yet found a study showing the growth in numbers of nurse practitioners, but nursing organizations are acknolwedging that nurse practitioner may indeed help fill the widening doctor gap.

Caregivers may want to consider developing a “rolodex” of nurse practitioners along side the list of doctors who they consider partners in the care of their loved one.  Perhaps you already do this.  While waiting for medical attention, caregivers will inevitably feel compelled to do more research into the symptoms, make more inquiring calls for doctors and nurse practitioners who may be available, and do what they can to comfort their loved one.  At this point, you are really serving as a Quality of Life Advocate.

Welcome!

Karen WinstonWelcome to my site.  One thing you should know right up front.  I am passionate about healing America.  Whether it’s through communicating on patient empowerment, healthy living and disease prevention or working on projects that promote and advocate education and innovation in the life sciences and advanced technologies, I believe we can and must improve the health and prosperity of Americans.
 

I’m also the author of HIYA:  Patient Advocacy was Her Calling and Salvation

Karen Winston Karen is a new and enthusiastic author.  She has held a variety of positions as well as having her own business utilizing her writing, marketing and public relations skills for more than twenty-five years.  During her career, Karen has followed her passion for health and wellness, by serving as marketing director for Jimbo’s…Naturally! and earning a certificate in clinical nutrition from the Natural Healing Institute. Karen currently serves as vice president of programs for CONNECT, an internationally recognized non-profit, business accelerator for early stage technology and life sciences companies. With an overall mission to assist entrepreneurs in achieving commercial success and to stimulate youth education in the sciences, technology, engineering and math disciplines, Karen works with the CONNECT team in building strategic partnerships; collaborating with industry, community leaders, other non-profits and research institutions, and in advocating for innovative funding and production models to improve both the regional and U.S. innovation economies. Karen earned a B.A. in communications/sociology and a minor in French Literature from UC San Diego.