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HOSPICE,, share your experience , to help others!
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 notIN 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