A debatable issue – Is it mandatory for hospice patients to have caregivers at home?

By Patty Ayers

You’ve been through the emotional process necessary to make the decision for hospice care with your loved one. Imagine if when you said “yes” to hospice, the agency you were considering said “no.”

Apparently, 12% of hospices nationwide do say “no” when the hospice patient doesn’t have a caregiver at home 24/7.

After reading the recent NPR article Why Some Hospices Turn Away Patients Without Caregivers At Home, I’m left with mixed feelings of confusion and frustration.  I can say with the utmost certainty that the hospice I work for does not turn away patients who do not have adequate caregivers at home!

Sometimes it all comes down to money…when you are the caregiver in hospice

By Patty Ayers

According to the article The high cost of caring for parents, MSN, October, 2011.  “One-quarter of adult children provide physical or financial care to an aging parent — a proportion that has tripled in the past 15 years, according to a recently released MetLife study.”  Nowadays it’s difficult for a family to survive on two incomes let alone budgeting for the needs of another person, which in many cases can be very expensive.  In many cases caregivers end up quitting their jobs to care for another or miss so much time from their jobs that they compromise their position, pensions or miss promotion opportunities.

Graduating from hospice care

By Terre Mirsch

I stumbled upon another blog this weekend- one that immediately caught my interest because it is written by a hospice patient. In Til we meet again, Wanda shares her journey through hospice, checking off items from her bucket list and learning to live each day to its fullest. I found her spirit and willingness to openly share her journey with others inspiring; her zest for living is a force to be emulated by all of us. As I read through Wanda’s blog posts, where she discussed a variety of experiences and emotions, I was not surprised when she posed the question, “Is death the only way out of hospice?”

Understanding the Medicare hospice benefit

by Terre Mirsch

While attending a national hospice conference a few years back, I recall listening to Mary Labyak, one of the earliest pioneers of hospice care in our country. I’d heard Mary speak previously and, although I never had the honor of knowing her, she was a mentor for me throughout my career. Mary stated, “When you’ve seen one hospice, you’ve seen one hospice.” I was puzzled for a moment but quickly understood—and she was certainly correct in her declaration. Hospices across the country were continuing to find new and innovative ways to deliver services, developing programs that meet the unique needs of their communities. One is as different as the next. Some hospices are small, focused on providing care within a small geographic area, while others are large with a nationwide reach. Some service urban environments while others meet the challenges of servicing rural communities. Some are not-for-profit providers, some are for-profit, and others are government sponsored. It can be a challenge to navigate through the array of programs that may be available to you, and for this I refer you to my prior blog “Choosing a hospice: Finding the right program for you and your loved one.”

But caregivers can also take comfort in knowing that there are some things that are certain and consistent across all hospice programs. The Medicare Hospice Benefit was made permanent by Congress in 1986, defining hospice standards and required services in order for a program to obtain federal certification. Additional licensure requirements exist in most states. Accreditation organizations also have standards that define standards for service and quality. All recognize that as illness progresses, a variety of support services are necessary in order to adequately support patients and families who are facing life limiting illness. All recognize the need for bereavement support following loss. These services provide advantages that other types of care may not in the face of serious illness.

Navigating the health care and hospice system: Getting the right care at the right time- Part Two

By Terre Mirsch

For most of my life, I have been on the professional side of caregiving- supporting the patients and family members under my care in a variety of settings. In more recent years, I found myself on the other side of caregiving—no longer the expert nurse but a family caregiver. While having a professional background provided me with a baseline knowledge that isn’t always as readily available to others, the task of navigating the health care system was far more arduous than I had ever imagined. These experiences provided me with a renewed appreciation for the advocacy role that caregivers play every day.

Navigating the health care system: Getting the right care at the right time- Part One

By Terre Mirsch

Navigating the health care system is often among the most challenging aspects of caregiving.

Understanding what is, and what is not, covered by health insurance plans such as Medicare, Medicaid, and private insurances is essential for informed decision making and ensuring that your loved one has access to needed care. Many are surprised to learn that traditional insurance coverage does not provide the 24-hour care that is referred to as ‘custodial’ care. Custodial care is non-medical care, or non-skilled care that assists with activities of daily living. As illness progresses, it is common that people need help with these activities including bathing, dressing, feeding, movement, toileting, or incontinence care. Sometimes, people have long term care insurance that can help pay for this care if certain criteria are met. Last week, my colleague, Patty, talked about options for full-time care including long term care in a nursing home or hiring a caregiver to assist you in your home. Thank you, Patty, for providing this valuable information.

When full time care is needed for your loved one: Choices in hospice and home care

By Patty Ayers

So, imagine this: for the last three years you have been caring for your dad in your home with the assistance of your spouse.  Until this day, Dad’s health was not great but he was at least able to walk, eat and dress himself with little to no assistance.  But today when you went to wake him, it appears as if may have had a small stroke or something neurological that has changed his ability to do anything for himself.  You call 911 and he is taken to the hospital.  After being evaluated, his doctor said that only time will tell if he will regain his ability to do things for himself.  Furthermore, the doctor has informed you that Dad’s heart is failing and he refers you to palliative care.  Dad is then sent to a long term care facility for rehabilitation and will be sent home in a few weeks.  Over the next month it becomes apparent that dad will require total assistance when he is finished rehab.

At this point you might be feeling a little lost, overwhelmed and asking yourself questions like “how will I care for dad now?”, “Should I consider placing him in a nursing home?”, “what will it cost if I need to hire someone to help with his care?” And “who do I call for help?”

Share your healthcare AND end-of-life wishes

Today is National Health Care Decisions Day, an initiative to encourage patients to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be. While public awareness of advance directives is widespread, less than one third of Americans have a living will. And a Pew Research Center survey, conducted in November 2005, revealed that while people are much more willing to discuss end-of-life care preferences than they were a generation ago, only about 50% of children have had these conversations with their aging parents.

Creating meaning through storytelling at end of life

By Terre Mirsch

After experiencing a childhood of poverty and hopelessness, John vowed his own family would never experience hunger or lack for anything. His shame prevented him from sharing his childhood story with others. After a life time of working 16 hours a day 7 days a week, he looked forward to retirement as an opportunity to make up for lost time with family and friends. When his diagnosis of advanced colon cancer shattered his retirement dreams, he was overcome with despair and regrets. His daughter, Bonnie, was bitter and resentful that she would need to take time away from her own family to care for him when, indeed, he had not been there for her. In the telling of his life story, John was able to express his love for Bonnie as well as his regrets, while asking for forgiveness. Bonnie was not only able to forgive him, she now understood and admired his resilience and determination. This deeper insight helped her to see the characteristics of strength and fortitude that had been passed on to her. The remaining time that John and Bonnie had together became an opportunity to love, share, and more deeply understand each other.

Money matters: how hospice can help you plan ahead

Your hospice social worker can help you understand some of the necessary first steps
By Patty Ayers

How much do you really know about your finances or your parents’ finances?

One major stressor that hospice caregivers often report is the task of taking over paying the bills or financial matters for their own household or for their parents.  Ask yourself this: what exactly does it mean to be the Power of Attorney (POA) on behalf of someone else and how do I start the process?