Why I Hate Hospice
71Die young and leave a beautiful corpse? Or hang in til you reach a ripe, old age so people can say, "He had a good life."? Clock out suddenly with no notice? Or wither away slowly over weeks, months or even years? There are pros and cons to each scenario. But one thing's for certain: we may not know when, where, or how, but we're all going to die.
My Role Models Have So Far Been Positive
Both of my parents are now dead. Mom (God bless her) died on my one year wedding anniversary in 2005. A lifelong smoker, she had COPD. That is what finally did her in. She was 2 months shy of her 81st birthday and said she was shocked to make it to 80.
Mom suffered with her lungs and related issues (swollen ankles) for years. But she wasn't "dying" per se. In the end, it was a mere 18 days from hospitalization to check out.
The way we knew it was serious was Dad carried a portfolio of important papers -- including her Do Not Rescusitate (DNR) with him at all times. He told us he and Mom had been having some serious discussions.
He was prepared. She was prepared. At the exact moment of her death my Dad was in church praying for God to take her.
Dad's Last Wishes Mostly Granted
My Dad outlived Mom by 3.5 years. He was hale and hearty up until September. Then he went downhill fast.
Prior to his final hospital stay he'd had quite a few others. As a result, he'd become quite a favorite of the hospital chaplain, a lovely red-headed woman named Suzanne (who, we speculated, might be an ex-nun). Suzanne seemed to always time her visits when I was there. I don't think either my brother or sister ever met her. But I had the pleasure of many prayer sessions with her.
I also had the opportunity to discuss death in a philosphical way with my dad. He had a strong faith and was not afraid to die. Why should he be? His life partner was waiting for him, as were his loving parents.
Weeks before he died, Dad spent a lot of time at his desk. He made sure all his affairs were in order. He did all the things they say happen to people preparing for the transition from body to spirit.
He stopped eating. He spent more and more time thinking/living in the past. He rejected medical help. We felt him pulling away from us little by little.
For me, because I knew his wishes, this was less painful than it was for my siblings. Of course I didn't want him to leave us. But I also knew the reason he was hanging around was not for himself. It was selfish to want to keep him around when his body was failing organ by organ.
In the end, Dad's final countdown was blessedly short as well. Back into the hospital on a Sunday. Moved to a rehab hospital* on Thursday. Taken to the ER the following Saturday, where he died early Sunday morning, surrounded by his family.
*A quick note about rehab hospitals. I am convinced there is only one way out of these facililties. And it's not standing up.
A Long Slow Death Sucks for Everyone
It's been a mere two months since we buried my father. Now we're on a death watch for my father-in-law. He is under the care of the big "H." He's receiving what they call "palliative care" and is officially "in hospice."
According to the physician's order that hangs on his kitchen whiteboard he has "end-stage lymphoma." No one has given us an exact timeframe, but it was his doctor's idea to get hospice involved. Typically that means the patient is expected to live less than 6 months.
In my father-in-law's case the family has vowed to not allow him to go into the hospital. No matter what. His last hospitalization (surgery on the lymphoma -- before two rounds of chemo and radiation) was a disaster. He tore at his IVs and yelled for his shoes, over and over and over and over and over.
You see, my father-in-law also suffers from Alzheimers. This is sort of a double whammy medically, but in a way, also a blessing. He does not seem to understand what is happening, either within his body or around him. He relates his pain and symptoms at the level of a three year old.
Each day he withdraws a little more from life. He's spending more time in bed. He cannot eat solid food because the lymphoma has closed up his esophagus. He's lost at least 25 lbs.
And we, his family, sit by helplessly. Intellectually, we know and accept that he won't be getting better. We're well aware of the subtle changes and what they mean.
The hospice nurses come once a day and do a quick checkup. About the only comfort they offer is to up his dose of morphine if he's having breakthrough pain. He's on enough now to kill a horse.
Living with terminal illness is like living under a boulder. There's a steady, crushing ache that only death can abate. At the same time, we are painfully aware that we should be feeling grateful for each day we still have him here with us.
We don't want to rush things by getting ahead of ourselves. We have one foot in life, but one foot already in the funeral, if not the grave.
I know what we're going through is NOTHING in comparison with the suffering my father-in-law is enduring.
But it does explain why I hate hospice.
I Don't Know How To Let Go
- Hospice
Hospice Services, Make a Donation, Find a Local Hospice, Frequently Asked Questions, The Hospice Concept, What Questions Should I Ask About Hospice Care.
- Hospice Foundation of America
Hospice Foundation of America is a not-for-profit organization that provides leadership in the development and application of hospice and its philosophy of care. Through programs of professional development, research, public education and information
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Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying
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The Hospice Handbook: A Complete Guide
Price: $6.00
List Price: $16.99 |
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60 Minutes - The Cost of Dying (November 22, 2009)
Price: $17.95
List Price: $17.95 |
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Hospice Care Awareness Ribbon Mouse Pad
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Comments
MM, I'm very sorry to hear about your dad, your mom too, but I am comforted by the way they parted. My dad went the way your father-in-law is going, and I can only nod emphatically to everything you say about these final stages. That "steady, crushing ache that only death can abate" goes both for the terminally ill person and for the loved ones. I shudder to think back at those days when my dad was that way. I swear, I wish it to no figging one in the world, worst enemies included.
Thanks for sharing this, hugs your way.
(why isn't there a comfort icon like a hug, instead of that stoopid smiley face?)
--*H*--
Your story reminds me of that song, "He Was Walking Her Home".
Thanks guys (that's all 3 of you, GT, Elena and Teresa). I finally got the final capsules in. Now there's a video and a photo. I do appreciate your support. This isn't a very romantic offering for Valentine's Day. But it's MY Valentine's Day. We're on our way over to in-laws to bring them some candy. Well, my MIL. FIL can only drink liquids. I'm actually grateful to be able to participate in his final weeks/days. I will say, the support of HP is incredible. Couldn't do it without you and hugs and smiley faces:-). Thanks again! MM
Big hugs to you MM. Thanks for sharing your story. It's never easy.
I really have no words, other than to offer my prayers and support. I cannot even imagine the difficulty you and your family are going through, or the pain of your father in law.
It could only be hard writing this down and sharing it. So with all the hubbers who have posted before me, I say this calls for a group hug!
You poor love - and your husband, as well.
(((((((( MM)))))))) here's my hug dear. I know what you are going through. Been ther with my mom and father-in-law, aunt Irene and it is tough. love dear
Many thanks, dear Hubber friends. It's particularly warming to get hugs from the "tough guys" in the crowd (you know who you are). But just knowing there are sympathetic friends around the world is amazingly comforting. Thank you all again. Probably time to get back to usual: sarcasm with a dash of sauciness tossed in for good measure:-)!
MM, I feel for you. I know the mourning process can be very difficult.
Times like this are hard. I was just fifteen and I had to watch my mother for a year, die of cancer. In the 70's, in a small town, she was confined to a hospital bed for the last 3 months shot full of morphine for the pain. Death was a relief, that it was finally over.
As for my, dad he was smoke and got emphysema, so he had to take blood thinners. He kept having blood vessels rupturing in his brain. He lived to be almost 80, and I had moved away because of work, and could only visit once or twice a year. He finally had a major stroke and died. Which was a final relieve too, because we all knew it was going to happen.
But we still miss them and wish we could see them, I have enough faith in my Lord Jesus Christ and My Heaven Father, to know that life continues, and that death is just another step in our eternal life. I know this does helps to comfort some, but the emptyness cannot ever be filled.
Take care.
Keep on Hubbing.
I was touched by this story of your dad and I can see you loved him very much. These type of stories are sad, but in a way also happy too because it shows he lived a full life and was aware of his duties before dying. Great hub.
This is such a touching story. I am sorry for the losses in your family. My family had a much different experience with hospice care. My grandfather had melanoma. He went through treatment, and seemed to be doing better, but then, took a turn for the worst. Hospice care was an excellent choice. He didn't want to die in a hospital, where restrictions were put on family and friends visiting. He was surrounded by his family at the end. He died the way he wanted to, and it was thanks to the hospice care he recieved. The nurses that came were wonderful, and caring. I am sorry that your experience was so terrible.
My experience with hospice is still occurring. I can't really fault the nurses. They're doing their job. And hospice is enabling my father-in-law to stay at home. That's important to my mother-in-law and certainly would be to him, also -- if he had any clue about where he is. We just know that a hospital setting would be torturous for him. He does not do well in a hospital setting (who does).
Sorry to hear about the passing of your grandfather, Anna Marie. Sounds like his passing was as smooth as could be expected. That's what we're hoping for, too. Soon, I am sure. Every day is precious!
It sounds like you are a wonderful and supportive daughter-in-law. I'm sorry for your struggles.
This outpouring of love and support is just one reason why I love this community. Peace be with you, you are in my prayers.
A very raw hub indeed.
I share the compassion as the others here and in letting go. My 83 yr old father was recently plotting where he will be put to rest. Although he had a top-notch gravesite already paid in full, he changed his mind over the last few weeks and chose to be buried on the military grounds.
Im really proud of my father because the war was what his entire life was about.
This read says that you are proud of your parents as well.
Hi Newsworthy. Indeed, it's a good thing to feel proud of our parents. Their generation -- military service, rationing at home, everything -- molded them into fine specimens.
I am very proud of both of my parents and of my in-laws. Too bad we don't appreciate them this much when we (and they) are younger! Thanks for stopping by.























goldentoad says:
10 months ago
I wish I didn't have to use any words right now and just give you a hug.