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HOSPICE,, share your experience , to help others!

11 years 2 months ago #20146 by TheWifeAgain
I work coordinating hospice care through a well known nursing association. All of the patients I work coordinating their services remain at home and the planning of wants, needs, are all clearly discussed and decided upon before the in home care is initiated.
Many families and patients have different expectations, understanding of and opinions of what they consider to be the best for their situation.

I try to make a good match with the worker that will be going into the home. Sometimes they go for short periods of times and other times they are in the home for 24 hour care.

All of the HHA's and nurses that work in the capacity as a hospice worker are truly very special people.

Always be sure to make your wishes and expectations heard. We want to make the hospice experience what you expect it be.

Age 53 Currently
Bladder Cancer Diagnosis October 2006 T1G3
2011 Finally made it 6 month between Cystos
8/22/2011 Cysto in the OR
(BCG and BCG Maintenance over the years)
Graduated to yearly Cystos
Tumor found at first one year Cysto - TURBT 4/26/2013
Kidney pain - CT scan 5/1/2013

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11 years 2 months ago #20136 by Gene Beane
Clara,
Thank you, my posting this is about doing the right thing for your situation, ours was different. I saw a few getting food, it didn't pertain to us and I didn't ask why, some patients are on a different route at hospice. Ours involved no feeding tube hence our situation. I understand this now.
Involving the issues of family, the kitchen and other parts of the facility were ours to be used as we wish. The women from my dads church kept the kitchen full of food.
FINDING PEACE...... The many doves, butterflies , and the site of the Catalina Mountains took me to a spiritual place. One I share with my dad today. Nature gives me peace and away from how it happened. Find peace in what you shared.
Something else we shared was a trip in Sept. just 2 months before his ordeal, he met all of us in Vegas with his wife, oh what memories we have there. He spent 2 weeks at our house in August, seeing all the great grand children, so when you look back, maybe it was his time...
If tis helps others I am glad.....Ginger

Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet

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11 years 2 months ago #20126 by Clara
Ginger,
I think your idea is great...the only experience I have had was when the man my sister planned to marry had a stroke and was sent to Kate Reynolds Hospice in WS and also a young cousin spent time there.

From what we observed there and from reports of other people that have used the facility, you could not ask for better care.

One night when I was there, one of the churches had sent food for the families for anyone that needed it.

Also, my cousin had a dog and they were allowed to bring it in for her.

There is a Hospice facility within two miles of our home and a friend was a nurse there but it was not being used as much for hospice as it was for rehab for patients that had broken bones and were on their way home.
She has gone back to Forsyth Hospital in the ER but she said she knew all the girls that worked near us and she would highly recommend it to anyone. I am really hoping we will be able to do inhome care...but who knows.

I just thank God for every day we have here.

Prayers and love
Clara

Caretaker of husband, Bob.
Stage IV
Diagnosed Jan, 2007

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11 years 2 months ago - 11 years 2 months ago #20123 by Gene Beane
Friends,

Before March of 2004 I never had an experience with hospice. I think the situation of the patient, whether its cancer, a stroke, etc. plays a large part in their hospice care.
Everything is an issue , right down to how they are transported to the facility. We had one day for choosing and setting into place our dads hospice care.
The info on his situation is most important to understand my experience which was devastating to me and my brothers and sisters. Keep in mind the setting was Tucson Arizona, where he lived with his 2nd wife of 17 years, her daughter and family. This situation may come up in others situations therefore I mention this fact. In Ohio he had 6 children , 12 grand children, and was his bases for his life in the beginning. He was very close to both sides.
This is what led up to hospice,, chest pains Nov.20, call to us , going to do open heart, before we could get our 2 cents in he was done,,he was 87 and in good shape for 87, very active, strong personality, made everyone laugh.
He made it through, ready to take on the world, when there with him one week later, a staff infection in his leg, rebounded to get in January a blood clot,
rebounded well in rehab, had his 87 birthday with him at rehab, Feb. and March recooping. I spent 8 weeks with him periodically throught he 5 months. Watching over rehab, making sure they weren't letting him veggitate away in bed, which happens to alot of our parents because of not enough staff to walk them to the bathroom. Diapers are easier for them. They are put in a category of "almost dead anyway ", THIS IS NOT ACCEPTABLE..therefore my presence.
THE LAST DRAW.
March 15 went to lunch with his wife, no walker with him, it embarrassed her to have that parafanalia, when leaving the restaurant they both fell on a high curb, he broke a bone in his back. Back to the hospital,and rehab, first day at rehab the therapist couldn't get his attention, he was having a mid brain stroke, we got the call, got on a plane, all 6 of us, and saw him in intensive care, HERES THE REAL IMPORTANT PART. he couldn't swallow, slightly paralyzed on left side, now hes had no food for 2 whole days,DAD SAID NO FEEDING TUBE,,I SAW HIM SAY IT MYSELF WHICH WAS WHAT I NEEDED.
Hospice,,later that day 2 men came with a guerney, after much discussion with the OTHER SIDE( HIS WIFE AND HER DAUGHTER), my first problem,the men are arguing with the nurse about how much urine can be in the transport bag when transporting, the nurse didn't want TO change it.FINALLY I SAID CHANGE THE F
BAG.. (sorry dad) REALLY!
They rushed him down the hallways, my dad s eyes were wide open as I held his hand and asked them to slow down, he was taking in everything. What I found out later is that they hurry so as the patient does not die on there watch.. When putting my dad in the transport vehicle I was shocked, it looked like a 4 panel bakery truck,, this is upsetting , it did get better,We arrived at a beautiful 10 room hospice facility, the nurses were nice, the aides were NICE, he had a private room, here at the foothills of the mountains. A private patio with a large jasmine tree outside his door. MY DAD WANTED WATER OR ICE CHIPS, they said no, swab will do.( interesting enough they said he would choke to death on the water) He was comfortable,he was started on morphine shots around the clock,THEY BATHED HIM, TURNED HIM, THE VIGIL BEGAN. We were given a pamphlet, it was to real for me to read. My sisters and I took up residence in THE FAMILY ROOM",,running in and out of his room at will. talking of the sleds, bikes, and trips he gave us when little,our weddings, OUR MOTHER,,and mostly how nice he looked as he was dapper kinda guy. We were told 4 days max, well day 4 they said he isn't moving along as thought, THIS IS VERY DISTURBING FOR THE FAMILY, insurance covered 5 days, so dad was becoming a problem, problem solved. REALLY.. Day 6 it was over. EVERYONE AGAIN WAS NICE. HIS CARE WAS SUFFICIENT,HERE IS MY ADVICE ON HOSPICE.
COME TO GRIPS WITH WHAT IS ABOUT TO HAPPEN.
TRANSPORT THE PATIENT HOW YOU WANT TO
SET UP WITH THE FACILITY WHAT YOU WANT DONE AND HOW MUCH PRIVACY
THINK ABOUT WHAT IS IMPORTANT TO SAY WITH THE FAMILY, TO SHARE
HAVE FOOD BROUGHT IN FOR FAMILY
BE READY FOR SOME HOSPICE AIDES TO SAY THE WRONG THING,
(your frame of mind is in a different place)
ONLY ENCOURAGE THOSE YOU WANT THERE TO BE THERE.
SAY YOUR LAST GOOD-BYES EARLY ON
BE READY FOR ANYTHING. Somethings will go smoothly, some will not

IN CLOSING EVERY SITUATION WITH HOSPICE IS DIFFERENT, I HATED EVERY MINUTE OF IT BECAUSE OF THE FINALITY, THE WORDS OF THE STAFF WERE EMPTY FOR ME.
For me I get peace knowing I spent 8 weeks with my dad over the 5 months, and was able to have all his children with him,I am thankful for that, but to me No HOSPICE CAN TAKE AWAY THE PAIN THE FAMILY FEELS, ONLY THAT THEIR LOVED ONE WAS COMFORTABLE...BE A VOICE, IN THEIR DEATH Ginger Beane

Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet

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