Care to elaborate?
Which part?
Your bad experience?
Oh sure, I have posted this many times before, because it still bothers me so much, as well as the rest of my family. We had a horrible experience with Hospice and my grandmother. We knew my grandma had some dementia. She lived at assisted living. They thought she had a stroke, we all ran to the hospital where they said she didnāt have a stroke. The hospital said they wanted her to go to a rehab place, see if she could get stronger before going back to assisted living. She was set to leave the next afternoon. That morning the hospital wanted us to meet with hospice. They told us she had 24-48 hours left, but didnāt give us any real reasons, made it seem we should hurry. My Mom was health care proxy, we (she) signed the papers and grandma stayed upstairs in the hospital in 1 of the 4 hospice rooms.
Before she left the regular room, she had 3 ice cream skippy cups. Once she was in hospice, they said no meds, no iv, no food or drinks. We argued with hospice, tried to get her out of it, and they flat out said no- papers were signed. We had a nasty nurse that later they apologized for and said she was āgoing to be taking a break from Hospiceā. For 19 days we sat with my grandma watching her body shivel up. No food or drink. She did eventually pass. She had 4 ports for meds in her stomach (morphine). It was a horrible situation and we all promised each other to never use hospice again. This was our 1 and only experience.
They may be good to help the family, and they seemed to be willing to pray with the family, but my thoughts that were brought up was āWHAT ABOUT THE DEHYDRATED PATIENT?!?!?ā I wanted them to do what was right for her- I can pray on my own, get support for myself after she was gone. We, as a family, still have many, many regrets.
There was no way to reverse what was signed. I know every Hospice is different, but thatās not how we wanted our family member to pass. This was just one familyās experience, but it was enough for us.
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Sadly, I had a very similar experience when my mother was in hospice. It was horrible, and totally unexpected since I had heard so many great things about hospice in the past.
Also, for the record, I donāt think you are crazy for not continuing chemo. I think you are smart and brave. I have seen too many people spend their last days being sick instead of doing what makes them happy. Hugs to you, Kim.
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Bringing in some Thursday Jingles for a nice day for you, Kim ā¦filled with simple summer pleasures ā¦ ((hugs)) ā¦ in my thoughts always !
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Thanks Busy! 
going to be a muggy one today. But that is okay.
Interesting morning development.
Well actually I have started feeling this way for the last 2 days. And I hope folks will not get upset that sent me all the sugary goodies. But I am totally repelled by anything sweet. Those goodies from A & G I cannot even eat.
They will not go to waste at all, The Ex is a sugar hound, all he eats s pastry stuff, and he loves A & G.
It is like my body is saying NO no more sugar, quit feeding the tumor, and while many do not agree with this I have read many things and docs who say avoid sugar and Sugar feeds tumors.
Whatever it may be, I am heeding it. I figure I better listen to my body now since I ignored all itās warnings for the past 2 years.
Coffee is now only yummy with heavy cream, and a dollop of Honey.
Interesting huh?
Now if I could only get some lawn service to CALL ME BACK!!! For crying out loud does no one want to make money anymore.?
I have let the front get too long, and I do not want to burn myself out doing the front, the back I can handle.
I just want someone to come every other week and mow and trim the front, is that too much to ask??
Okay well I wanted you to hear my newest development. Off to do my 6 postings before it gets too hot.
Have a good day my friends, You think of me, and I think of you guys all the time as well. And how I have finally given up on the few local friends I have. Not worth the effort or one more thought.
I had a seriously evil thought last night, but I doubt I will act on it. will tell you tonight. (((((Hugs))))) Kim:)
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Go get 'em!
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Apparently yes, it is too much to ask for companies to call you back 
I understand theyāre probably busy but it would make sense to at least return a call and say either they are too busy or schedule you for later than you may like. I hope you find someone.
Iāve read that sugar feeds tumors too.
Have a great day!!
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You amaze me with your energy in this hot weather! Rock on!
And I want to just chime in and say that hospice can be a GOD SEND also. Iām sure it totally depends on location. We brought them in a month or two before my dad passed and they were amazing. They did not limit or cut off food/water. They paid for literally everything (all meds, all medical devices, anything you could ever think of, nurses at the house when we needed themāand we could choose the ones we liked and boot the ones we didnāt!)
Everytime I read this thread I want a mater sammich.
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Yes to hospice when appropriate and definitely yes to the palliative care people, who can come in any time and just help maintain the best, most comfortable life possible!
My husband was a total sugar hound and loved his bacon, pork rinds:eek: , coffee!!! and fried anything. And thenā¦ he wasnāt. Not sure if it was the chemo or what, but he stopped the coffee (switched to green tea) went sugar free (he was also diabetic so some of that had already happened) and said most stuff was too sweet.
What he did love, both sweet and not) was tapioca pudding (store bought!)
Boost (glucose controlled)
Hamburgers, tomatoes, corn
toast with sugar free jam
sugar free ginger ale (LOVED even when really, it didnāt matter, thatās what he wanted!!
my homemade(no machine, made the easyway) strawberry ice creamāyeah it was sweet but he loved it. :love-struck:
good luck pestering the crap out of the lawn company!!
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@Callista17 Iām sort of confused and itās none of my business but I am just trying to understand. What happened was that you signed a hospice agreement with a hospital that involved withdrawal of all support (including food) and then afterwards you changed your mind and the hospital would not let you take your grandmother out? They would not let you transfer her out of the hospice and to another facility?
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{{Kim}}
Iām with you on service-oriented companies not calling back 
Iām ok if you donāt want my business but at least have the courtesy to tell me thatā¦ Iām working on two different service areas and having a heck of a time getting someone to call me back (at at least one company in each area initially sounded very interested in helping until they fell off the face of the planet ),.
Eat what tickles your fancy and what sounds appetizing (and easy).
Hospice sounds like so many other service areasā¦ there are the good and the bad. Research, be informed and read any paperwork before you sign.
Is there anything non-foodie that strikes your fancy that we could provide?
If you donāt want grassā¦ come to my houseā¦ no grass and one rainstorm in maybe the last 4-5 months :eek:
Tell us how youāre doing later today!
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I certainly donāt want to get this thread sidetracked, but we absolutely never signed anything withdrawing food! We agreed to hospice based on the medical professionals reccomendation she had hours/2days to live. We did not know it would include withdrawing food or all regular medicine (bp meds), and we could not take her out of hospice. We could put her into an ambulance and take her to another hospice facility, but could not revoke hospice.
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When we met with hospice, certain things were made very clear to us: hospice was not going to administer any IV fluids or supplemental nutrition. Whatever DH wanted to consume by mouth, he could, but soon he would not be able to. He received pain meds, but his other meds were stopped. I continued to flush his PICC line and a drain, because a clogged drain would be uncomfortable for him.
The hospice people said that when a personās body starts shutting down, it starts shutting down. Expecting it to process additional fluids or food is hard for it to do, and can cause discomfort.
Generally people are admitted to hospice when their expected life span is six months or less. I could take him to the facility if I needed help or a respite from home care, and he could leave at any time without leaving the hospice system.
Iām sorry that some of you have had bad experiences with it.
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Are you in the United States? You might consider consulting a lawyer. The hospital failed to disclose to you that hospice involved withdrawal of food and medication?
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Yes, thank you. We did report it and made appropriate complaints. We knew no iv meds, feeding tubesā¦we understood thatā¦but 19 days is a long time without food or drink.
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Our hospice people were absolutely wonderful.
When there was a question if to start adding supporting treatments, which they didnāt do, but we didnāt have to sign any such, they kept offering that as a choice, but it would involve moving to the hospital, no more house hospice services.
The choice was always that of the patient and/or those in charge, not for the hospice to decide and that was made very clear.
Now, hospice would also work in the hospital or nursing homes, not just in peopleās homes, but there, they too would not care for anyone with supplemental feeding or machines, the hospital then took over if someone wanted to go that route.
As long as the patient was only under palliative care and let nature run itās course, that is when hospice stepped in and they really were very good at that for everyone, patient and family.
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I am so sorry. We recently had a family member go off life support and it took much longer for her to pass than anyone had hoped for. Sometimes it does. Doesnāt make it any easier when it happens to you. I am sorry for your loss.
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