Hospice a/ka How in the Hell do People do This for a Living?

Hospice workers and Hospice Doctors do the work of Angels.  It takes very special people to help patients and loved ones through death.  Every.Single.Day.

I will be forever grateful to the people who surrounded us during those nine days.

I am so glad that Jeremy died at that hospice center.  It was a beautiful facility.  Each room had french doors that went out onto a patio where they kept several bird feeders filled so there were lots of birds and chipmunks.  A mamma raccoon and her two babies visited each evening to see what seeds the birds and chipmunks left.

Beyond the patios was a common area that had two waterfalls, a lily pond, a playground, butterfly garden, four large swings, a picnic area.  It was just beautiful.

And it was quiet.  Compared to the trauma unit it was so calming and quiet.  I saw a difference in Jeremy almost immediately.  He seemed less tense.  *I* felt less tense.  We'd open the doors during cool mornings and evenings so Jeremy could feel the breeze and hear the birds and crickets.

In spite of the fact that I'd brought my son here to die, I had a sense of peace about it and the atmosphere only added to that.

The hospice was so well thought out and planned.  They had beautiful Family Bathrooms with showers, Laundry Facilities, a full kitchen, a beverage station where you could get sodas, coffee, cocoa, etc. and a large, beautiful sun room for relaxing.  Their was a Hearth Room with a separate TV room.

If you had to 'live' there for nine days like we did, it was as much like home as they could make it.

I sat by Jeremy's bedside almost 24/7, going home for clothes once and to sleep in my own bed only once.  Jeremy's girlfriend spent most of her time trying to cope with what was happening.  Apparently her family was not allowed in the facility. Hospice is a peaceful place and they wanted to assure it stayed peaceful for everyone there.

My heart bleeds for his girlfriend, in spite of the things she's done to make this harder for *me*, I still have sympathy for her.  He was her whole life, they lived together and he did this in front of her.  She will be forever traumatized.  I wish I could take those visuals and all her pain away from her.

She had a lot of support among the Hospice Staff.  The Chaplain and Social Worker there spent a lot of time with her and gave her good advice on how to find peace with what had happened.

That's not to say she didn't remain a pain in my ass.

Jeremy went to the Hospice Center to die.  Their job was to keep him comfortable.  We knew it would take a while for him to pass because he was a healthy, strong, young man. 

In the hospital and then more so in the Hospice Center, he would have these periods of agitation.  He'd start pulling his leg up and pulling his head up, thrashing his arm around trying to grab his cath, IV or head bandages.  They'd give him a special dose of his pain or anxiety meds and he'd calm down, but it was hard to watch.  And hard to fight him trying to keep his hand from doing damage,  he was so STRONG.

I'd sleep in a chair beside his bed each night with my hand on his right arm so I'd wake up if he moved.  There was a night in hospice that I spent all night fighting him, the medication didn't seem to calm him for more then five or ten minutes, then he'd be horribly agitated again.  His girlfriend slept very soundly so was not really available to help with him during the night.

At hospice, after several days he began to have more and more of these periods of agitation and the medication would help less and less. He would open his eyes.  (His eyes were too swollen to open most of the time he was in the hospital and he'd very briefly opened them a few times that last day or two in the hospital).  The few times he opened his eyes in Hospice, I felt like he could really see me.  He would stare and stare at me.  I'd talk and talk to him and he'd stare and stare.  It was disconcerting and heartbreaking.  I have no idea if he could see, or what he could see.  Did he connect what he was seeing with who I was?  I didn't know, but it was difficult because we knew HE was in there, he was responding to our commands.  It would have been easy to convince yourself he would get through all this and be ok.

Which his girlfriend did.  She was convinced he was coming awake and that I was essentially murdering him.   

We went back and forth one day when he seemed particularly 'with it'.

She said, "He's waking up."  I said, "Why would you want him to wake up?  What do you think the end game is if he does wake up?  He will just suffer more until he dies of an infection or something.  He can't even get the trach he needs to live."  She said, "He came here in a vegetative state and now he's responsive!  They need to know that."  I said, "That's not true!  He was responsive when he came here and he's doing nothing different except opening his eyes and he couldn't do that before because they were too swollen.  He may be slightly more responsive but that doesn't change the facts."  She said, "Fine, I'll cancel his insurance.  He's on MY insurance you know.  If I cancel his insurance he could wind up in a state hospital, is that what you want?!"  And I said, "The fact that you think he'll ever go back to the hospital illustrates that you are not hearing the facts.  He will never be in a hospital again."

The doctor came in and I asked to speak to her in the sun room.  I explained how Jeremy's girlfriend was  feeling and how hard it was to get her to understand.  "She thinks he's waking up!"

"You don't want him to wake up, he cannot survive and he would just suffer more until he died."

"Well, I'd love for him to wake up  but I know what that would look like for him and don't want that for him, but she just can't accept it for some reason."

"Well, she doesn't have your years of wisdom, she's young and hurting too badly to consider letting go, but our staff are trying to help her through this and I'll talk to her.  I rarely do this as a hospice doctor, I don't often sedate my patients, but I'm going to sedate Jeremy until he passes.   I don't think his agitation is pain related.  I really think we are effectively managing his pain.  I think he's afraid and confused, he's in there, we know he is, and he's probably just so confused and scared."

My heart just dropped at that.  "I don't want him to be confused and scared!"

"I don't either, so I'll sedate him.  Palliative Sedation is something we use to ease a patient's  anxiety. It is a very humane thing.  This will help his girlfriend too.  He will just sleep until he passes.  He probably won't even move. I'll talk to her, I'll explain the reality to her again."

It was hard allowing the sedation because it meant he probably couldn't really 'hear' us anymore, but I knew it was best for him.  The thought of him being scared crushed me.

So before they sedated him I told him how much we all loved him, that he'd had an accident and that he had doctors and nurses taking very good care of him and he would be fine, that he just needed to rest and heal.  I had told him that lie hundreds of times because I didn't want him to 'know' the reality, although who knows what he might have overheard along the way, what he might have understood about his situation.

Don't think for a second that I'm 100% comfortable with my decision.  In my head I know we were simply easing his path, not forging it, but my heart has a harder time with it.