It is one of the hardest decisions a person can ever have to make….the decision to put a loved one into hospice care. It completely shatters the dreams of the family member or loved one ever recovering from the illness the family had hoped would be beaten and they could live a normal life again.
A few years ago, the phone on the desk buzzed as the intercom came to life. The head doctor’s voice came over the intercom
“Are you busy right now?” The head doctor asked “Can you come into my office for a moment?”
“I can be there in a minute,” I replied. “Let me finish putting in these last codes into the patient’s chart first and then I can be right there.”
“Roger that.” the head doctor replied
After finishing putting in the last of the medical codes on the chart I had been working on, I headed to the front of the office, completely puzzled as to why I was being summoned right as lunch was about to begin.
“Ah, there you are!” the doctor replied when he heard me enter the private office he used for working on reports. It was then I noticed my new co-worker, who had just started in the office a week and a half before, whose eyes were red rimmed and swollen from crying.
“What can I do for you?” I asked the doctor
Motioning to the co-worker, the doctor explained that she had a huge decision and asked if I could take some time, take her for a walk and see what I could do to be of help. I nodded. I needed a break from looking at all the charts on my desk anyway. Soon my co-worker and I were in our warm coats and headed outside to a little walking path that ran alongside the building we worked in.
“How can I help?” I asked my co-worker gently. She softly started crying again. “ They said my dad was terminal with cancer, there was nothing more they could do for him, and they said I needed to get him hospice care. My dad wants to be at home, I don’t want to ship him off to a cold building with no family around!” and then she softly sobbed into my shoulder.
In spite of myself, I chuckled. I asked her how much she knew about hospice care. When she confirmed my suspicions that what all she knew about hospice were merely myths, not facts, she asked me to write down all the facts so she could tell her family what I had told her on our walk.
Here’s the list I gave her…..
The facts about Hospice care are:
1. Hospice is more of a philosophy of care, than a mortar and brick building.
2. Having hospice care doesn’t mean you have to give up all your medical care.
3. You have to qualify to be accepted into hospice care. Most people don’t realize you have to qualify to receive hospice care, and it’s quite a shock to the family when they find that out, however, you can opt out of you wish to do so.
4. You can still see your regular doctor while on hospice.
5. Hospice goals are to enable you to live well, the goal is not to sedate you until you die, like most people fear.
6. Hospice is for the entire family, not just the person receiving hospice care. Most people honestly don’t realize hospice care takes care of the entire family, no matter what the need is. The common myth is that hospice is only for the loved one who is dying, which isn’t true at all. Hospice takes care of the entire family, from counseling, to educating, to something as simple as a listening ear.
7. Hospice care goes well beyond the death of the loved one. Most hospice care places give 12 months of grief counseling to the rest of the family after the loved one has passed away.
8. Hospice is covered by major insurances, Medicare and Medicaid.
9. Hospice is offered to people regardless of age or what the life limiting illness is. (I’ve seen children as young as a year in hospice care while doing medical coding for charts. Those always bring a small tear running down my face when I got those kind of charts to code).
10. Research has shown that the majority of people want to die in the comfort of their own home, not in a hospital.
Once I was done explaining the facts of Hospice care and debunked the myths she had thought were completely true, she looked at me straight in the eye and then motioned that she wanted to start walking again.
“How is it you know so much about hospice care?” my co-worker finally asked as we walked along the path after a while.
“Personal experience.” I softly replied
“Father? Mom? Sibling?”
I shook my head. “My first husband.” I replied
She stopped short. “WHAT??” She blinked in shock. “But you’re so young!”
“I’m actually older than I look.” I chuckled,
My co-worker started walking again “How old were you when your first husband died?”
“34. Three days shy of turning 35 as a matter of fact.”
“He had the gall to die right before your birthday????” I actually laughed out loud right after she said that. “ I wouldn’t quite put it that way…..” I continued chuckling
“Ok, so what am I in for once dad is in hospice?” My co-worker asked
“How much time you got?” I asked as we reached the benches so we could sit down
“Things that happen after a loved one goes into hospice……ok, go!” We talked for a half hour more then headed back to the office we worked at.
I learned shortly after our walk that my co-worker had taken to heart what I had told her, and her entire family was at her father’s bedside when he passed away three weeks after our little walk.
Here’s the things I shared with her that day:
1. Tempers are going to flare. You may love your siblings and other family to death, however, having a loved one in hospice care is going to leave you tired, stressed, emotionally and physically drained. I have lived this reality. I slept for a full 24 hours after my first husband died. I was that worn out from the stress and being emotionally and physically drained.
2. If there is a living will, the majority of the time the wishes of the person in hospice aren’t going to be followed very well if it’s necessary that the care must come first. It’s just a reality. People can put what they want in a living will, however, family do what they think is best, leaving the wishes of the person dying not being followed. This happens more often than not. And if the wishes are followed, be prepared for some anger of the other family members blistering you from family who just aren’t on the same page.
3. If you have power of attorney, use it but don’t abuse it. I have sadly seen people think they have the right to undo everything. it brings a lot of heartache if the power of attorney is put in the wrong hands.
4. If it brings closure to other family members, give them space as they say goodbye. I personally lived this scenario. My first husband had wanted to die at home, however, his siblings had him taken to the hospital. When the hospital got wind that there was a power of attorney and it was none of them, the siblings could not forbid me from saying goodbye to my first husband, even though that was exactly their wish ( he was a few years older than me, yes). However, I understood that his siblings were also grieving, and wrestling with the reality their brother was going to die by that evening. After I had said my goodbye, I asked the nurse to let his siblings back into the room. All heck broke loose when the request got back to the head nurse, who had seen how poorly I’d been treated by the rest of his family. I held up my hand to stop her and quickly explained that when their mom had died, they had not been allowed to see her before she died. I was not putting his siblings through that second time. They needed to be there in the room, without me being there. When the doctors and nurses saw I was completely serious about my request, and that I wasn’t backing down, they relented. In the years since that night, I have had no regrets for making that decision to let his siblings be there in the room when he passed away. No regrets whatsoever. It helped give them closure.
5. The person will rally one last time have one last hurrah before fading away completely. They will gather all their strength and it will be like everything is going to be ok. It’s the loved one’s swan song before they pass away.
Many people are shocked when they find out none of my first husband’s siblings came to the funeral. I wasn’t offended in the least. That was their decision and I honored and respected that decision. By giving up my place in the room as my husband passed away, they had closure, and as such, they didn’t feel they needed to come to the funeral. And yes, people have told me over the years they think I was completely nuts to do that. Honestly? It just felt like the right thing to do and I’ve had no regrets for doing it the way I did.
I have pointed out and have continued to point out over the years that I was not the only person to lose him. His father lost his son, his siblings lost their brother, his nieces and nephews lost an uncle. I honestly thought that was the best gift I could give them, after what had happened with their mom and they weren’t allowed in the room as she passed away. Giving up my place in the room was a no brainer at that point. I cared enough about his siblings that I refused to put them though not being able at saying goodbye to a loved one a second time. I just simply couldn’t do that to them, even though I had every right to kick them to the curb if I had wished. I took the high road and let them say their goodbyes in their own way and on their own terms. Sometimes making the right decision is not always the easiest decision ya know? I took the high road and I’ve had no regrets whatsoever in the years since then for doing so.
Have I hear from my first husband’s family since my first husband passed away? No.
Would I love to hear from them? You betcha! I’d be over the moon to have any of them reach out and let me know how all of them are doing. I have missed them terribly.
Death changes many things. Having a loved one in hospice makes that change burst out into the open a lot faster than it would have otherwise. It’s not fun, it’s not pretty, and sometimes, life is super messy at times, it’s just that way.
Having a loved one in hospice is not easy, for anybody. Having them in hospice gives all of you a chance to say goodbye and a better quality of life even if it’s just a short time. Treasure the time you have left. You never know when death will come knocking.
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