Dr. Kopp
I was my husband’s primary caregiver, 24/7, until he died. I cared for him for years before the last months and days. I was surprised and upset ny his death, for I thought he would go on for many more years
I had his favorite drinks (San Pelligrino “Aranciata, Schweppes “Ginger Ale, Filtered Water, “Pepsi”, etc ) all on his bedside, with straws if he wanted, and sponges if that was all he could take.
He eventually refused all of them. It was hard to get him to accept even a swab of his mouth. He didn’t complain of dehydration or thirst. He would reject the swab of his mouth, no matter what we soaked it in. I did it anyway, and kept his lips soft with Burt’s Bees.
Hospice was the most supportive to me, explaining that when someone is dying, they lose the desire to eat and drink, because their systems are shutting down, and trying to do what we think right, forcing food and drink on systems that are shutting down does more harm than good, and can prolong their agony.
If they complain of hunger or thrust, feed them, offer them their favorite beverages, but if they refuse them - who are you caring for, yourself, or them?
Please, people. Those of us who have taken care of a loved one dying of an awful disease do not need to read that we didn’t do right by those we have loved more than life itself.
Hospice, as I understand it, means meeting the needs of people with illnesses that are considered terminal. A strange statistic that isn’t usually discussed - Hospice patients often outlive their counterparts who get conventional medical treatment.
I have read that, but like everything one reads on the internet, it needs to be double-checked.
I was hoping to prolong my husband’s quality of life when he stopped eating and drinking by calling in Hospice. I also had the support of our assisted living center nurses and care-givers, totally separate from Hospice.
Nothing helped. And, I am going to go to my bed and do the usual. Cry myself to sleep, because he was to young and too healthy to have to leave me alone. He was only 72, and hated losing all of his abilities, both physical and mental
Hospice is not to be feared, and I regret the posters who paint these wonderful people in such a bad light. They are wrong, in my humble opinion.
There is a vast difference between “euthanasia” and a “natural death”. The first is criminal, the second can be kind, depending on the circumstances.
Going to bed, hoping for a dream of him.
Some hospices are very good. Some are indeed to be feared, like the one that killed Terri Schiavo.
The hospice we are working with just had a woman come to her in the past month who had been refused by two other hospices. She has esophageal cancer and has had a feeding tube for years without difficulties. She is starting to go downhill, not on death's door, but in need of hospice care. She cannot swallow on her own due to the prior treatment for the esophageal cancer.
She was told by TWO hospice providers that they would not take her unless she agreed to stop the feeding by feeding tube. She has months to live. Agreeing to their terms, which violate federal guidelines, would be a premature death sentence.
Not all hospices are trustworthy. Some are deadly.
I've see stuff in nursing homes I pray never happens to me or a loved one. I don't mean mistreatment. I mean people for which the medical knowledge of the early 1990's could not stop their pain without it becoming a lethal dose. I know because I heard their screams. These weren't the dementia patients these were terminal in pain and death could still be a month or two away.
My conscience in my caring for my dad is clear. People who think the magical answer is tubes etc need to understand THEY HURT and they feel pain much more intense. I've known patient after patient who ripped them out. The process some go through in their last conscious hours makes keeping anything on them or inside them as a catheters virtually impossible. They want everything off of them and out of them clothes, linen, tubes, you name it.