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But that I could ease your pain for one day...

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My very first patient in hospice was an older gentleman named Tom. Tom and Ellie had been married for 47 years when he became my patient. Tom had prostate cancer, and didn't want to leave Miss Ellie or their home. They had a small ritual when they kissed (just little pecks, not big sloppy kisses- these were dignified folks)- they counted their kisses in threes. And they kissed often.

As often seems to be the case, Tom was very, very tall and slender, whereas Ellie was very petite and a bit round, "like a French pony," Tom told me once, with a smile. Tom was a quiet man as well, and Ellie chattered. A lot. She told me stories of their courtship, marriage, raising kids, building their house- I learned a lot about Tom and Ellie's life together. Which was good, in a way- because when Tom finally began to go into his final decline, it meant I knew Miss Ellie well enough to be able to help her.

Tom was wasting away, but there was always one thing he would do- count kisses with his Ellie. I was there the day he stopped counting kisses, and I knew Tom wasn't long for this world. He stopped eating and drinking. I encouraged Ellie to have all the family come and say their goodbyes as soon as possible. Incredibly, Tom was still with us two very long, sad weeks later; he looked like a skeleton draped in skin, he had no bowel sounds, but he kept on breathing. I checked on him daily, checked on Ellie, held her hands and cried with her.

Finally, I asked Ellie if there was anyone, <i>anyone</i> that Tom might be waiting for? Who hadn't come or couldn't come? She hesitated, then said, "Well... my daughter Sarah just got a new job, and they won't let her off to come until the funeral..?"  I asked if Sarah had talked to her daddy on the phone and told him that she couldn't come; Ellie said no.  "well get her on the phone, then- I bet that's what Tom is waiting for!" I urged. Ellie called right then, and Sarah talked to her dad, telling him that she couldn't come, but she understood that he was tired and needed to go on before she could get there, and it was alright. She told him that she loved him and that he should go if he needed to go now.  Of course Tom was past talking- he had been lethargic for more than 5 days; Ellie was holding the phone to his ear for this call.

After Sarah hung up, Ellie looked at me and said, "Do you really think that's why he's still with us?" I nodded, then told her to call me if she needed anything and went home. The next morning, I learned that Tom had passed 4 hours after I left, almost as soon as Miss Ellie went to sleep that night. Their housekeeper had been staying over to care for both Ellie and Tom, and she found that Tom was gone just after Ellie had fallen asleep.

I went to the funeral for Miss Ellie, and she repeated the story of Tom's passing after the phone call to pretty much everyone at the service. Because of his love for Ellie, it didn't surprise me a bit that Tom wanted to be sure that all of his kids were ok with his passing; in close, loving families, that's often the case. I was just glad that Miss Ellie was able to grieve and still go on; often when I lose my patient, I very quickly hear that their spouse has passed as well.  Love isn't supposed to be so hard, but I cannot imagine losing my husband after almost a half century (or even a half decade!).

I hope my marriage turns out like Tom and Ellie's did.

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Anne was a strong-minded woman.

She knew exactly what she wanted, even after 2 strokes took most of her speech and half of her motor skills. She couldn't swallow, but she wanted nothing to do with a tube. I was Anne's hospice nurse.

Anne lived in a custom-built home. It looked like an igloo- constructed of wire and concrete outside, but completely normal on the inside. Anne lived with the son of a family friend, Bobby. He'd built the igloo-house. He showed me the view from the top of the house, too.

Bobby was afraid of morphine, because when he'd served in Cambodia, he'd rescued guys who had been tortured, carried them back to safety. If they were in pain he'd given them morphine to ease their suffering before carrying them to safety. When they died, the surgeons at the medical units would tell him that he should have left these men in soul-shattering pain and not given them morphine. They told him that he had killed them by relieving their pain. So he feared morphine something awful. But he loved Anne.

Oftentimes when you have a stroke, you'll have severe pain on the affected side. Anne had this pain, and at first there was a question as to whether her paid attendants could give her the liquid morphine she needed to relieve that pain. Despite 40+ years of fear, Bobby medicated Anne. She didn't die. She was, however, more comfortable. Was Bobby happy? Oh yes. Was he convinced that he wasn't killing her? Ohhhh noooo- he was positive that he was, despite repeated patient teaching on the dying process, despite the hospice caregiver's handbook, despite everything. But because he loved her, and her comfort was more important than his discomfort, he medicated her just as we'd instructed him.

Bobby cried hard when she died. I hope he doesn't blame himself. I spent several hours with him while waiting for the funeral home to come, and pointed out that she had not had anything to eat or drink for 10+ days. She was dying, and it was her choice. I pointed out that he had made her last days comfortable and easy, and she died knowing how much she was loved.

Sometimes love isn't easy.

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I have always cared for adults in hospice. Mostly because that's just how things worked out, but also because I'm just not sure I could care for a dying child. I don't think that I would have ever thought about the difference between caring for an adult and caring for a child, but then I met Billy.

Where have you been, Billy-boy, Billy-boy? )

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My very first ventilator patient was Ms Polly; Ms Polly had a progressive disease called Polymyositis, which slowly paralyzes the muscles, including those of the lungs. Ms Polly had caught pneumonia, and then was unable to be weaned off of the ventilator. She was given 3 choices: live in a nursing home on a ventilator, go home w/home care on a vent, or go home on hospice to put her affairs in order and plan her funeral. Ms Polly picked Hospice.

My Only Sunshine... )

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I have worked traditional hospice, and I have worked open hospice. What's the difference? Well.. traditional hospice does not accept patients on ventilators or with nasogastric tubes or on TPN (IV food, essentially). I know it has its place, but open hospice is much, much harder for the case manager. Why? I'm fixin to tell you. I'm going to tell you about 2 people that made a huge impression on me. Both were open hospice patients. The second story will be my next entry.

You tell me why they were so hard to accept. )

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sad sad
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Lately I've been thinking about my hospice patients, and I've got an inclination to tell their stories. Because I'm an RN, I forget that not everyone deals well with blood, poop, graphic medical descriptions, etc. So you can read this first entry (or not), then decide if you want to read more.

Anyway...

My first memory is about a little 70-something year old lady, put in the nursing home to recover from surgery. However, she had not been there long (about 2 weeks) when the nurses realized she wasn't eating or drinking, and advised the family to insert a PEG (percutaneous enterogastric) tube (a feeding tube). Her daughter knew mom did not want to have a feeding tube or such measures, so she is referred to hospice. I'm the admissions nurse, so after daughter has signed all the legal stuff with one of our social workers, its my turn. Now, I'll tell you straight up, I tend to do a thorough physical exam, then read the chart and see what medicines they're on. I come in, introduce myself to the patient and her family, and start my examination. Its very quickly evident that this little woman is in pain. Severe pain.

This is where the graphic/stupid starts. )

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Current Music:
Rebel Rebel- David Bowie
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I'm so freakin tired. Mind and body. Siiiigh.
Current Mood:
exhausted exhausted
Current Music:
none... futurama on the tv
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Angry All theTime

Here we are
What is left of a husband and a wife four good kids
Who have a way of gettin on with their lives
I'm not old but I'm getting a whole lot older every day
It's too late to keep from goin' crazy
I got to get away

The reasons that I can't stay don't have a thing to do with being in love
And I understand that lovin a man shouldn't have to be this rough
You ain't the only one who feels like this world left you far behind
I don't know why you gotta be angry all the time

Our boys are strong the spittin image of you when you were young
I hope someday they can see past what you have become
And I remember every time I said I'd never leave
But what I can't live with is memories of the way you used to be

The reasons that I can't stay don't have a thing to do with being in love
And I understand that lovin a man shouldn't have to be this rough
You ain't the only one who feels like this world left you far behind
I don't know why you gotta be angry all the time

Twenty years have came and went since I walked out of your door
I never quite made it back to the one I was before
And God it hurts me to think of you
For the light in your eyes was gone
Sometimes I don't know why this old world can't leave well enough alone

The reasons that I can't stay don't have a thing to do with being in love
And I understand that lovin a man shouldn't have to be this rough
You ain't the only one who feels like this world left you far behind
I don't know why you gotta be angry all the time

I don't know why you gotta be angry all the time


Life As We Knew It

The key's in the mailbox, the u-haul is loaded
This is the last time we'll call this place home
The cat's in a cage to leave at your mother's
I'll be halfway to Ashville when you wake up alone.
It's been a while since I've seen Carolina
It always was beautiful this time of year
And if this is the end of life as we knew it
You won't find me living around here

I love life as we knew it
I still can't believe we threw it away
Goodbye that's all there is to it
Life as we knew it ended today.

I'll leave a number if you need to reach me
You always called when I had to be gone
I know that here in my heart life as we knew it lives on.

I love life as we knew it
I still can't believe we threw it away
Goodbye that's al there is to it
Life as we knew it ended today.

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The Things You Left Undone

Saturday, I drove into town
In the co-op where your friends hang out
I heard one say "What's she doing here?"
Well, I held my head up high, swallowed my bitter tears.

Yesterday at the hardware store
They said "I'm sorry, you don't have no credit anymore"
Well I walked out of there trying so hard to think
Of another way that I could fix the kitchen sink

Got into the truck and it wouldn't start
Is it any wonder that I'm falling apart?
Oh, I'm just another one of the things you left undone.

Well I got home and went out to get the mail
Walked back down the driveway with another pile of bills
I need a job, boy, one more than I have
Last night I fell asleep looking through the wanted ads.

Woke up this morning on the pillow you left
Laughed a little crazy as I made up the bed
It's just another one of the things you left undone.

I'm still finishing what I didn't start
I'm still mending on this broken heart
Oh, it's just another one of the things you left undone.



Current Mood:
sad sad
Current Music:
Hubs swearing in the kitchen...
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