Thursday, September 25, 2008

Hallelujah for Hospice

I've been sitting here all day waiting for today's essay to pop into my head. Usually it presents itself the night before while I am falling asleep. But I fell asleep quickly last night depriving my inner author of adequate time for cogitation.

I slept so soundly last night. It was one of those lovely, peaceful sleeps that are more often a part of my fantasy life than my reality. What a pleasant change to wake up refreshed. Perhaps my sleep center is not wired properly. My mother says the nurses applauded when I left the nursery because I stayed up all night long every night during my newborn stay. And I have had sleep issues, off and on, ever since.

So far the symptom management is going well. I am on a continuous pump of fentanyl (yes, it doesn't make me sleep or treat pain but we are using it for the cough). It is on a patient controlled anesthesia pump so I get a baseline amount and if a coughing fit starts, I can give myself a bolus. I took a shower today without having a coughing fit, which is a hopeful sign. Tomorrow Bill and I will take a walk and see how it goes. So far we have been able to avoid the nausea and vomiting side effects, but the itching is pretty severe. So that's the next item on the list of puzzles to solve.

Now that the edema has been treated, we are starting to wonder if the skin on my legs is tightening from the scleroderma. When I first developed the disease that skin was virtually unaffected. But suddenly, my thighs feel like they have turned to stone. What a greedy little disease.

The staff here is amazing. They spring into action at the first sign of a coughing fit and help me in every way possible. This is truly the most "caring" healthcare institution I have ever experienced. Surely hospice attracts a special type of person but I also think the shift in purpose from cure to care is essential in creating an environment where the patient's comfort is truly the central and unifying focal point. Perhaps it sounds like hyperbole but I feel like a child in the lap of a loving parent. I feel so completely and utterly at peace.


MJH said...

That sounded sooo restful and peaceful. I wish that's possible for me when I'm sick and still need to tend after house, husband, and two little ones. Thinking of that made me laugh as it is part of vibrant motherhood. Nevertheless, it is my desire to be restful and peaceful in my last days... I'm so happy for you!

Hope said...

hi michelle kevin here i just want to say how inspirational and thought provoking your blog has been to me personally. it has caused me to look at my own life and appreciate the little yet very important things in life. i also wanted to share a website where u can upload your slide show. its once u have it uploaded it provides u with a link that u can post on your blog so your readers can view it in its entirety. if u should need help please feel free to contact me at kmhops420xxx@aol,com. i hope this info proves to be valuable

Ana's World said...

Michelle: I'm glad you slept well. Love and peace to you sweetie. Ana

Annie said...

oooh michelle. i'm happy for you. you've made me smile so much in the past few weeks that i've known about your blog.

you're truly an inspiration.


Deborah said...

Hello Michelle
Sleep is so important -- I'm glad that you got a good night's sleep, Hopefully your stay in hospice will give you more restful nights.

albischof said...

Sounds like you had one of those small "miracles" today. I am so glad that you are having a positive, peaceful experience at hospice. So many people have such a negitive opinion of hospice. Hopefully people will read of your experience and see it in a new light.

Sending many prayers your way!

Autenrieth Family said...

AHHHHHHH! You brought tears to my eyes knowing that you are so comfortable! Lots of love!

selicato said...


Alleluia, Amen! I can't tell you how how happy we are to hear of your peaceful, restful stay, and best of all, with minimal coughing and nausea. I'm sure the extra sleep has given you a renewed energy as well. It sounds so special where you are. You deserve all that loving and warm environment around you...a sweet retreat. Love you!

Linda Crispell said...

I am glad you are being well cared for and getting such a sound sleep.
p.s. you are an amazing writer!

Chip said...

I am so glad that you are feeling at peace.

desert dirt diva said...

congrats on your sleep!!!yea a good nights sleep is worth a million bucks...and those coughing fits must be awful, also glad to hear there under control for now..have a good weekend and its nice to hear you and bill will be walking..

Anonymous said...

I'm so glad you're getting the wonderful care you are at such an important time. I second that hallelujah!

easydoesnt said...

Woman and a Fork

There was a young woman who had been diagnosed with a terminal illness and had been given three months to live. So as she was getting her things 'in order,' she contacted her Pastor and had him come to her house to discuss certain aspects of her final wishes.

She told him which songs she wanted sung at the service, what scriptures she would like read, and what outfit she wanted to be buried in.

Everything was in order and the Pastor was preparing to leave when the young woman suddenly remembered something very important to her.

'There's one more thing,' she said excitedly.

'What's that?' came the Pastor's reply.

'This is very important,' the young woman continued. 'I want to be buried with a fork in my right hand.'

The Pastor stood looking at the young woman, not knowing quite what to say.

That surprises you, doesn't it?' t he young woman asked.

'Well, to be honest, I'm puzzled by the request,' said the Pastor.

The young woman explained. 'My grandmother once told me this story, and from that time on I have always tried to pass along its message to those I love and those who are in need of encouragement. In all my years of attending socials and dinners, I always remember that when the dishes of the main course were being cleared, someone would inevitably lean over and say, 'Keep your fork.' It was my favorite part because I knew that something better was velvety chocolate cake or deep-dish apple pie. Something wonderful, and with substance!'

So, I just want people to see me there in that casket with a fork in my hand and I want them to wonder 'What's with the fork?' Then I want you to tell them: 'Keep your fork .the best is yet to come.'

The Pastor's eyes welled up with tears of joy as he hugged the young woman good-bye. He knew this would be one of the last times he would see her before her death. But he also knew that the young woman had a better grasp of heaven than he did. She had a better grasp of what heaven would be like than many people twice her age, with twice as much experience and knowledge. She KNEW that something better was coming.

At the funeral people were walking by the young woman's casket and they saw the cloak she was wearing and the fork placed in her right hand. Over and over, the Pastor heard the question, 'What's with the fork?' And over and over he smiled.

During his message, the Pastor told the people of the conversation he had with the young woman shortly before she died. He also told them about the fork and about what it symbolized to her. He told the people how he could not stop thinking about the fork and told them that they probably would not be able to stop thinking about it either.

He was right. So the next time you reach down for your fork let it remind you, ever so gently, that the best is yet to come. Friends are a very rare jewel, indeed.They make you smile and encourage you to succeed Cherish the time you have, and the memories you share ... being friends with someone is not an opportunity but a sweet responsibility.

And keep your fork.