THE TRUTH ABOUT HOSPICE
I think a lot of families that opt for hospice care are surprised. We picture nurses and aides taking care of your loved one in their house and them passing like in the movies. My Dad’s passing was the second time I was involved with hospice. We used them with Jolene’s Mom too. Different services but they were pretty much the same.
The doctors, nurses and aides that do hospice work are incredibly special people. There is no doubt about that. It’s just that the service is not what most people expect and death is not like in the movies. Simply put, hospice is a do-it-yourself with some guidance death kit .That’s not a bad thing, really it’s not. It’s just not what I expected and I’m sure a lot of people feel the same.
I think most people picture a staff of around the clock professionals coming into your home to care for your loved one. You think if you do have to give a dose of medication, someone will clearly tell you what to do. You think you will know when they are close to passing and the death process will take maybe one or two days if that.
We chose hospice care when Dad started to decline quickly and he didn’t want to go to the hospital anymore. He wanted to be at home and we wanted to be the ones taking care of him. Hospice delivered a hospital bed, bedside table,oxygen and a box of “special” medications. They stopped most of his medications except his heart meds. You sign a paper agreeing not to call 911. That’s hard.
The nurse comes 2-3 times a week for about an hour. The aide comes 2-5 days a week to help with personal care and change the bed. He stays about an hour. Other than that, you are on your own. My sister, I and Jolene stopped working and we slept in shifts to be with him around the clock.
I couldn’t help but think, what about people who don’t have family that can do that? Who takes care of the patient? How do they pay their bills? Suppose there is no family or they live far away? There have been some recent news articles about hospice being really only for the upper and middle class. At first that took me by surprise. But think about it, people who live paycheck to paycheck could never do it. Emotionally, I think a lot of families couldn’t do it. Not everyone can take an undetermined time off work. You really have no idea how long your loved one will need you or how much care they will need from you. Even with four of us, we were beyond exhausted when Daddy passed.. We were so lucky to have family and friends that came everyday. They brought food and love and hugs that truly got us through. How do people without that survive?
Death is complicated, even for the professionals that work with it every day. They can tell you that the process has started, but even they can’t tell you how it will go. It took Daddy about 10 days to pass. At first we didn’t realize that it was happening. We thought he was just getting weaker and needed more and more care. We only realized it was the start of his death long after everything was over. I know it seems trivial when someone you love is passing, but you still have to call your boss and tell them you are not coming in. And no, you have no idea when you will be back. It could be two days, it could be two weeks, Who knows? How easy would that phone call be for a lot of us?
Then the time comes for the Special Medications Box. Morphine, Ativan, Haldol, medication for nausea, medication to dry secretions and a few more. At first the nurse tells you how to measure out the concentrated morphine and how to administer it to an unconscious patient. They tell you how often to give it. But the patient’s needs constantly change. He may need more medication at night or less if they can do without. You will be up all night deciding what is needed. There is a 24hr call number that gets you an on call hospice nurse that may be hundreds of miles away. Some are kind and patient, others are all business and on to the next call.
You are often told to use your judgment. But how does anyone have any judgment about how much morphine to give a dying patient? It’s 3am and you can barely think, no less make a good decision about how much mediation is needed. The responsibility and stress are tremendous. The hospice people say not to worry, there is no wrong thing to do. But when you love someone and their amount of time on earth is literally in your hands and your are beyond tired and haven’t slept for more than 2 -3 hrs at a time in days……you have no judgment. All you have is fear and the pain of your heart slowly breaking.
Daddy passed in the early evening. A hospice nurse came out within a half hour and pronounced him. The funeral director came about and hour after that. They quietly took Daddy away. Hospice came and took the equipment away. Everything looked normal again, except Daddy was gone.