My 93-year-old grandmother who has all timers and dementia has spent the last seven years of her life in a nursing home. My mother and her sister take turns visiting my grandmother daily. Other family members visit my grandmother as well. I visit my grandmother every other Sunday with my mom. My grandma's health has been diminishing because of her loss of appetite. She's always been a little bit chubby but she has been losing weight drastically because of her loss of appetite. My mom generally feeds her fresh fruit Jell-O and thickening liquids that the nursing home provides. We've all discussed that my grandmother probably gets no other nutrition besides when someone comes to visit and spoonfeeds for lunch or dinner.
A few weeks ago a hospice representative approach my mother and told my mother that their services would provide comfort for the family and my grandma as my grandmother's health continues to deteriorate.
Last week when I went to visit my grandmother I noticed that she had a brand-new chair that seeded her a lot better and she seemed more comfortable.
today when I arrived I thought my grandma was dead. I've never seen her look so poor and not in control whatsoever of her body functions.
We proceeded to the nurses station and found out that hospice has been administering morphine since Friday at midnight every six hours but the nursing staff could administer more every two hours if they felt my grandma was in pain. I asked the head nurse how has this happened that the family has not consented to morphine yet my grandmother has been given morphine for the past 48 hours... The head nurse said that hospice is supposed to contact the family to let them know but in order to stop giving her morphine they would have to have a doctors order faxed to them immediately... Where they would have no choice but to give her the dosage. I am mediately called hospice and left a message on their Emergency number. My mother said by the time she got home hospice had already called she return your phone call and they agreed they would call the nursing home and tell them to stop. This evening around 630 we were called by the nursing home letting us know my grandma's blood pressure was 74 and they said she may not have much time left to get to the nursing home immediately. Grandma was itching her skin and hair... The majority of the time she seemed disoriented and confused and still highly medicated. Her mouth was wide open and it looked like she desperately needed water or something moist to quench her thirst. A hospice care worker was there as well and said she would be willing to meet with me in the hall to discuss my grandma's condition. I told her I was not interested in speaking to her about my grandmother's condition and they have already caused enough problems. Miscommunication could be detrimental to my grandma's condition... And no one in the family had consented to my grandmother given morphine.
My question is do you think my grandmother will survive after having morphine in her system for more than 48 hours? The nursing home also told us that hospice had change the doses of some of her medicines and in fact she was placed on another medicine for anxiety; one that is not recommended for Alzheimer's and dementia patients- we were told the drug makes patient very lethargic.
Seroquel 25 mg -- is the drug and dosage.
My grandmother hasn't had food or liquids for several days now. I'm actually ticked that hospice could be so negligence and not inform the family about the morphine and we had to find out through the nursing staff at the hospital.
The nursing staff knows my grandmother for seven years -- it's not like no one came to visit her-- family was constantly surrounding her-- now hospice has come in and in within one weekend has caused her to be incoherent, non-responsive in a coma like state.
The way it's been explained to me, by the Hospice that works at my mom's NH, she needs to be medically certified as being ready for Hospice, but that we can chose to discontinue Hospice service at any time. Her sister, my aunt, went on and off hospice for years, rallying when she was not expected to live several times.
Her last day at the nursing home, I spoke to her doctor and asked that she be taken back to the hospital. He refused saying in a very belligerent tone that she was dying and that sending her back to the hospital would not do any good.
Later that evening I spoke to the hospice nurse by phone and asked about sending my mom back to the hospital. She told me that I was being selfish and wanted my mother to suffer so she could be with me.
Now thinking back, it seems that both her doctor, who was being paid by hospice, and the hospice itself refused or at least strongly discouraged taking my mom back to the hospital.
She died a few hours later. I have been in a state of extreme grief and emotionally distraught ever since.
I don't have any great words of comfort other than "I'm sorry". I hope that you are able to find peace.
If younger and our grandparent(s) and/or parent(s) had a crystal ball to see into the future, I wonder if they would say "let me suffer a horrible death, give me nothing to reduce the pain, I want my love ones to see me whither in agony".... I don't think so. We, ourselves, wouldn't want that kind of death for ourselves.
I know for myself, it I was approaching death, make it as painless as possible, and make it quick.
When my Mom was in the hospital during her last days I was amazed how a person could linger for so many days without food or water. As was explained to us if they gave her fluids she would be like a bag of water cause her kidneys were shutting down. She could not swallow and her living will had specified no feeding tubes or any artificial means to keep her alive.
So it seemed cruel and inhumane not giving her food or even water but what was the alternative. The morphine was probably the most humane thing they did give her at that point. At least she was not aware that she was starving.
I think it was harder on the people who loved her than it was on her. When deciding what to do for our loved ones maybe thats something to keep in mind.
What would you want if you were them, not what you want.
They used to just show rosey pictures of childbirth, too. Life, death, birth; they are all messy and painful. I'm all for making things better through science.
to me watching my Mom, knowing in her lucid moments which at the time were very few, that she was probably thirsty and so on. I would imagine her thinking why are they doing this to me. But in retrospect I don't believe she was thinking much of anything. However I was suffering big time watching someone I love wither away.
There is no easy way to let go of someone. She has been gone almost six mths. now and it still feels like it was just yesterday. I think they should have courses that teach people how to let go.
When my father died I knew that it was what he wanted. To resuscitate him would have been cruel. OTOH, my mother does not seem to be ready to let go of life. The trouble with advanced directives is that they are signed before the reality of the situation is at hand. People can sign them for a future time without giving it a thought. So there is the big question, if there are advanced directives that read no one should be able to contest them, should we try to go against them if we don't think it is what they want.
I guess we could just not tell the hospital that there are advanced directives unless we are sure.
..
And no one needs to be told to read anything before signing. This is in fact one of the problems with online shrink wrap agreements; people don't read the terms and conditions of websites they use.
If you were pressured, all you had to do was tell them to take a seat and you'll sign only if and after you've read everything. You have no legal obligation to sign w/o reading, and in fact it is your legal obligation to read everything you do sign. It's called "informed consent.
I do it every time and make people wait until I've read everything, regardless of whether they like it or not. If they make a remark about the time required for me to read everything, I hand them the papers and tell them I won't sign without reading.
We each have rights but won't enforce them if we allow ourselves to be pressured into signing something without reading.
forbes.com/sites/michaelbell/2013/01/10/why-5-of-patients-create-50-of-health-care-costs/
which states, "According to one study (Banarto, McClellan, Kagy and Garber, 2004), 30% of all Medicare expenditures are attributed to the 5% of beneficiaries that die each year, with 1/3 of that cost occurring in the last month of life."
AND from this link:
cbsnews.com
"Every medical study ever conducted has concluded that 100 percent of all Americans will eventually die. This comes as no great surprise, but the amount of money being spent at the very end of people's lives probably will.
Last year, Medicare paid $55 billion just for doctor and hospital bills during the last two months of patients' lives. That's more than the budget for the Department of Homeland Security, or the Department of Education. And it has been estimated that 20 to 30 percent of these medical expenses may have had no meaningful impact. Most of the bills are paid for by the federal government with few or no questions asked."
I sympathize with you for your loss, but you must come try to come to terms with the fact that your mother could not live forever and is now in a better place.
The nurses said later they did not say anything about her being in the dying process because they did not want us or her to lose hope. We were still trying things 3 days begore.
Please do not be afraid of Hospice or morphine. If she is actively dying, it's best she be comfortablem