Hospice and Palliative Care: Helping During End Stages of Life

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No one needs to die in pain. That's what the hospice social worker told me, as I signed the papers that would put my dad on hospice care. No one needs to die in pain. That's the mantra of hospice, and it became my mantra, as well. I had to believe it, as my dad had suffered so much.

For weeks, each time I walked into Dad's room in the nursing home, he'd be rigid in bed, up on one elbow and slamming his fist against his hand. Pow! Pow! Pow! Over and over, he pounded fist against hand. I'd try to get him to relax; to lie back. He couldn't comprehend. Pow! Pow! Pow! He was trying to knock out the pain.

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Dad was in Rosewood, where he'd lived since the brain surgery that was to correct the results of a World War II brain injury, compounded by age, failed. Dad went into surgery foggy, from fluid building up behind scar tissue. We soon learned that, while the surgery was medically successful – the shunt that was inserted into his brain to drain the fluid worked – Dad suffered from what I call "instant dementia."  He needed complete nursing home care.
 
Each time I saw him in such an agitated state, I would hurry from his room, back out into the hall to talk with the nurse. Had the doctor been in yet? Had he seen Dad like this? Would he please help us get Dad on hospice?
 
"Dad's in pain, Sarita. It's obvious. Can't the doctor give him something?" I'd say.
 
"I know," she'd answer. "He's in pain. We know him and can see it. The doctor looks at the records and says he sleeps so much, he can't be in pain."
 
"But look at him!" I'd plead, choking on tears. 
"I know," she said. "I know. We're working on it."
 
We knew Dad was wearing down. He didn't have long to live. But did he have to be in such pain? I wanted him under hospice care. The doctor said he wasn't ready.
 
One day, while I was working at my newspaper job, the phone rang. It was the head nurse from Rosewood. She said, "Carol, we did it! He's going on hospice. Can hospice call you at work? If you can do the paperwork now, we'll get him started."

A hospice social worker called me at work, and even came up to my office for the initial interview. I did the paper work, and met the hospice people, after work, at Rosewood.

 
 

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JenJilks

Give a Hug

Jan 2, 2009

Great article, Carol. This is a huge issue.

I know that my father was in pain. In his case he sang, LOUDLY, when he was experiencing it. I had to fight long and hard, but fight I did - for more pain relief. I wish I had fought harder and sooner. My deepest regret.

I did figure out how to work through the Ontario health care system. It was not easy.

 
 

Thanks, Jen.

Fighting for pain relief is hard. I had to fight to get the doctor to put my dad on hospice care, even though the nursing home people knew he should be. The doctor said he slept, therefore he wasn't in pain! Nonsense. It was obvious that he was in pain.

As soon as he was under hospice care (with the help of a very tenacious nurse), he relaxed and was able to receive the love offered. His pain was abated. But it was a long fight.

We all have regrets. I regret I didn't touch more than I did. I had so much to "do" with so many people needing me. I should have slowed down and touched more. But I can't go back.

We can both share with others our triumphs and regrets. That's how we move forward.
Carol

 
 

kimisme

Give a Hug

Nov 4, 2009

i have been thinking that i would like to help people cross over. to give comfort & help them pass peacefully.
could this be a job.
i feel it would be very fullfilling to do this.

 
 

JenJilks

Give a Hug

Nov 4, 2009

There are a great many Hospice groups across the continent. They run (in Canada) on 30% taxpayer dollars, and depend upon donations. Volunteers are given mileage in return for their time and energy. There are various training programs, peculiar to each district or region. For example: http://www.nhpco.org/

All health care practitioners SHOULD be trained in end-of-life and geriatric care, but many are not required to have these specific qualifications.

 
 

Hospices have volunteers and hire people, so it could be a paying job. To be hired, you'd need some training. But it's a rewarding field for many.

Carol

 
 

charlene66

Give a Hug

Feb 17, 2010

I have been a hospice volunteer. It has been rewarding. Some family members don't want their loved ones to die alone, or there is no one, so when the time draws near some groups have volunteers rotate shifts to sit with the patients. I did this once, and it so happened she passed while I was there. It was an overall good experience and I would do it again. kimisme should look into volunteering or job shadowing if she feels call into this work.

 
 

pamela6148

Give a Hug

Mar 31, 2010

I have just come from my moms house. She got a letter from Hospice. Now I'm curious, she kept asking me to read it and I kept saying no because it was mixed in with a lot of paperwork and I didn't want to disturb it. I'll be ther 2morrow and will take a look at it. But I do have a question about this.

My mom is 90, she doesn't have cancer which is mostly associated with hospice, (or atleast I thought) so I'd like to know if possibly someone referred her, or someone phoned to have them contact her. The caregiver said they probably sent it due to her age, I don't know. But mom asked me if hospice deals with people who are dying. I said I believe they serve many purposes.

Can someone answer this question for me, how did they get in touch with my mom and has this ever happened to anyone else, hospice contacting you before you contacting them?

 
 

pamela6148

Give a Hug

Mar 31, 2010

I'm sure there is someone out there who can give me info on Hospice.

 
 

kimisme

Give a Hug

Mar 31, 2010

thank you for the responses. i just figured out that i had them. one step at a time & it will all work out.
peace to all
kim

 
 

pamela6148

Give a Hug

Mar 31, 2010

Can someone tell me who my mom ended up with a letter from Hospice. That's all I wanna know.

 
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