Hospice Care, Part 4: Mom’s Hospice Experience

This article is Part 4 in a series on hospice care.  Please see the section below entitled “Related Posts” for links to Parts 1, 2, and 3 and to read more on this topic.

First Time Around It Was “No Go”

I was impressed with the way my dad’s final months were made more comfortable physically and emotionally via hospice care, as well as by the support I received from them. I wanted my mother to receive this same comfort care.  She was already in the middle stages of Alzheimer’s disease when my dad passed away, and I knew I really didn’t want to subject her to any more hospital stays in her lifetime, so placing her on hospice care was the answer for me.

I asked the hospice company to assess her, assuming they’d admit her to their service.  Wrong!  The hospice company told me she didn’t meet the strict criteria for admittance as a patient.  In one way I was glad that she didn’t qualify for hospice but, on the other hand, I was somewhat surprised and let down.  While disappointed, I learned their parameters, and also knew it was only going to be a matter of time before she would meet the criteria.  And in April of 2007, she did.

A Different Experience Due to Length of Time on Hospice

The difference between my mom’s and dad’s hospice experiences was due for the most part to the length of time they each received hospice care.  It was provided by the same hospice company, but my father was on hospice less than six months, while my mother was on hospice for approximately two years.

As a result of her extended time on hospice and her continuing decline, she utilized these additional services:

• The hospice company provided more medical equipment for my mom:  a hospital bed with an alternating pressure air mattress, a wheelchair, incontinence supplies, and a medical hoist to help the caregivers lift her from her bed to wheelchair and back again.

• The hospice company consulted with wound care specialists several times who assessed and suggested alternative treatments for the bedsores that appeared despite the excellent care she received. (Yes, bedsores can develop even when patients are very well-cared for. Read more about this subject here.)

• A dedicated hospice volunteer visited my mom once a week and helped my mom participate in arts & crafts or music as much as she could, read books to her, talked with her (even though it was pretty one-sided due to mom’s aphasia), brought flowers and little gifts, and just kept her company if she was sleeping.  These “quality time” visits were greatly appreciated by me, since I couldn’t be there every day.  The volunteer also got to know our whole family and we still are in touch months after my mom passed away.

• When my mom experienced her first ever tonic-clonic seizure, continuous care was provided by hospice for about the next 48 hours.  This means hospice staffers gave her intense around-the-clock care until she returned to “normal.”  This was only offered by hospice as a short term level of care and reevaluated each day, because it is also based on strict Medicare guidelines.

Caregivers vs. Hospice Staff in “Territorial Wars”

An interesting thing occurred during the treatment of my mom’s bedsores.  The board & care caregivers and the hospice RN’s pointed fingers at each other a few times, insinuating that it was the others’ fault that my mom’s bedsores weren’t healing quickly enough.  The caregivers felt the RN’s needed to provide more frequent wound care; while the hospice RN’s felt that the in-home caregivers didn’t turn or reposition my mom often enough since she was bedridden.  It was subtle verbal warfare that I heard both sides of.  Although it didn’t became a big brouhaha, and never went further than a few words spoken privately to me on occasion.

It’s important the staff of the board & care and the hospice nurses easily co-exist and communicate well with each other.  And they should not get into “territorial” wars over who the patient is getting “better” care from.  I knew they all wanted what was best for my mom, but they needed to stay focused on that and not start pointing fingers out of their frustrations over the bedsores.

If you notice this phenomena occurring during your loved one’s care and it’s getting to be more than you want to deal with, contact the hospice team manager and/or board & care administrator and let them get it ironed out.  With mom’s medical condition I believe her bedsores were lingering for any number of reasons, and I never blamed the caregivers nthe RN’s.  All of us were a “village” providing the best care possible for my mom.  Your family could find themselves in the middle of staff turf wars, too, over various caregiving issues, so please be aware.

More Lessons Learned from The Two Hospice Experiences

As I wrote previously, I might have interviewed other hospice companies if I had known in the beginning there were different types to choose from.  Some time after the first year of my mom’s hospice experience, I decided to interview a smaller “mom and pop” type of hospice company a close friend (who is also an RN) recommended.  One benefit was that the nurses’ caseloads with that company were  smaller, so their patients theoretically could receive more frequent or longer visits.  This benefit appealed to me and I thought over the pro’s and con’s of each company for several weeks.

I decided to stay with our original hospice company.  I didn’t want to invest the additional time and energy it would take for a whole new team of hospice workers to get to know and initiate care for my mom.  I realized no hospice company is perfect and it just didn’t seem worth it to make a change at that point.  It turns out this decision to keep the status quo was just a few months before my mom died, and that fact made it an even better decision in hindsight.

Every hospice patient and their family’s experience depends greatly on the individuals on the hospice staff.  Although the doctors, RN’s, social workers and home health aides that cared for my parents were all employed by the same company and therefore had the same goals and philosophy, they each brought their own personality and style to the job.  These can vary greatly and the patient’s family should be sure the staff’s style of communicating and caregiving match what you perceive your care recipient’s and your family’s needs are.

For example, the social worker assigned to my dad’s case was a treasure.  As I wrote in a prior post, she met me in person at the board & care several times and checked in by phone with me regularly to offer support to us on a continuing basis.  When my mom was admitted to hospice two years later, I was pleased to learn the same social worker was assigned to her case.  Later on she left the hospice company and the new hospice social worker approached her job very differently.

This new social worker never called to introduce herself nor made any contact with our family until I called the hospice company with a question that fell under her bailiwick.   She then promptly met me at my mom’s board & care and provided the needed information, but the “connection” and compassion I felt immediately from the prior social worker was missing.  Yes, she technically fulfilled her job duties by efficiently responding to my query, but that was it.  She seemed harried and her demeanor just wasn’t a good fit with mine.  If I needed more help from the social worker, I would have requested someone else on the hospice staff.  Like any paid service, we as consumers have the right to ask that our basic needs be met.

I recommend patients and their families be open to the concept of hospice care.  It is a scary word associated with death and hard to face, but it provides a positive end-of-life option.  Learn about it. Interview local hospice companies before making a decision on which one to use.  Talk with your aging parents about their end-of-life thoughts, plans and desires. Educate your whole family about this phase of life and how hospice can help manage so many facets of it.

I feel very fortunate that both of my parents were able to die with no pain, peacefully and with dignity.  I wish everyone could leave this world in that way.  Don’t you?

If you or your loved ones have had experience with hospice care, please share with us in the comment section below.

And check back soon for more articles in this series.