Hospice care is specifically designed for those with a major or terminal illness and a prognosis of six months or less remaining in their life’s journey. I, like many, had really never heard of hospice care until the need for it struck our family like a bolt of lightning. The “Big C” diagnosis for my mother was doled out in early 2008 – stage 4 pneuroendocrine cancer, a form of cancer none of us had ever heard of. The few rounds of chemo that my brave mom took on likely did more harm than good, and as her condition declined rapidly, my father and I knew it was time for ‘the talk.’

Deciding to Seek Out a Hospice is Only the First Decision

Sitting down with my father and mother while she was still very functional allowed us the opportunity to make the hard decisions, as we had all come to terms that this illness was, indeed, terminal. Even though there were only two of us to help with her care (if I agreed to quit my job and college), mom wanted to spend her remaining time on Earth in her own home rather than a hospital.

With that decision made, we knew that even with a solid commitment from the two of us, she would need outside professional medical help, and hospice care was recommended by her primary care physician. We did hours of online research to find a reputable hospice and made a half dozen phone calls to find the right one for us.

After asking about the availability of 24/7 home assistance, medical equipment, pain management care, and assistance with personal care, we were surprised to find that not all hospice care programs are designed the same. Our limitations in time and knowledge about caring for a terminally ill person had us seeking a level of premium in-home care, and finally we had set up an interview with the intake staff of what we hoped would be our selection.

Patient Intake with Hospice: A Long and Arduous Process

Intake with a hospice care is actually a process that can take several days or even a couple of weeks as they determine whether you qualify for the care and whether your insurance will cover it, and then they finally move on to getting to know the patient better. However arduous the process, the hospice seemed to make every effort to guide us through the process painlessly. You catch on fairly quickly that being prepared with the right paperwork and documentation from various physicians speeds up the process immensely, and knowing what services you need is a good idea.

Because we were newbies to this, the hospice staff ensured us that a physician and nurse would be on call 24/7 to come to our rescue if her pain medications were ineffective, if her overall condition declined, or if her pain levels worsened. At times when we needed extra help to deal with a decline, nurses and aides could come out and assist around the clock. The hospice certainly lived up to their end of the deal, and they delivered medications, medical equipment, and timely service any time we requested it. Overall, I would say that our diligent research of authentic reviews and getting recommendations from medical professionals certainly led us to find just the right hospice care, so ask around and get actual information from those in the know if faced with this choice.

If I Knew Then What I Know Now

What truly surprised me the most about the entire experience is how exhausting it is to care for a terminal loved one 14 hours per day, literally trapped in the home becoming a mother figure to your own mother. You cannot leave a strong willed patient on heavy drugs alone for a second, or else they will try to get up and can hurt themselves. Instead of calling the hospice more often to send out an aide or volunteer for a few hours so I could have respite myself, I toughed it out on my own, much to my own personal expense. If you have the help at your disposal – take it! Your health is important too, so take the help.

A particularly positive aspect of hospice care that I found to be amazing was that every member of the hospice team who came into our home, doctors, nurses, aides, chaplains, and social workers, were nothing but supportive and caring professionals. Many of them hugged me and my father as we cried, offered their support, and helped us through this painful time. They taught us how to give my mother medications, log them in the journal, and how to monitor her vital signs – you really get what you pay for with a good hospice, so skimp on price only if you have to.

Remarkably, this hospice offered families ongoing bereavement counselors during the time of hospice and for one year after services conclude. Stubborn me, I didn’t take them up on it during the process nor afterward, and this was a mistake that I look upon with some regret. You might think you are okay, but after seven months of ongoing care for your beloved family member, you probably could use the help. I’d recommend seeking out a hospice that boasts such a program, and my advice would be to take advantage of the bereavement counseling.

The downside of any hospice care situation is that you pretty much know the end result, but amazingly our hospice people didn’t stop there. They worked hand in hand with our chosen funeral home on that final day to ensure that this tragic, but expected, moment was as painless as possible. We had phone calls and visits for weeks from chaplains and social workers who “just wanted to check in.”

Overall, choosing a hospice is one of the saddest and most trying times of your life, whether you are the patient or the loved one. However, with good research and by using your instincts when interviewing potential care givers, you too can have a predominantly positive experience with hospice care providers.