My mother in law was no longer able to be cared for by her 99 yr old husband, was a huge fall risk and was exhibiting signs of dementia so we placed her in a nursing facility where her sister resided. Her sister passed about 8 months later whereas my MIL’s agitation seem to raise with her calling out her sister’s name constantly. Deemed ‘a disturbance to her roommate and anxiety ridden’, the nursing home began prescribing a sedative which made her zombie like. We demanded they take her off as we did not ok it (nor were we consulted prior to). They took her off and her alertness returned, no calling out. They suggested hospice come in to evaluate her as they may find some other suggestions to help, stating they were not just about dying. This being our first time dealing with this, we ok’d the consult. They made the hospice sound like they were a visiting org pre any end of life process. We felt since we lived in another state that it would be great to have someone go in regularly to visit and keep a check on her. BIG MISTAKE. Mother’s Day we visit and she is slightly medicated due to agitation and calling out again, but she was sitting in wheelchair and conversing (not completely lucidly however). 4 days later we learn she is being administered morphine, Ativan, and is officially in End of Life process.
What?? She hadn’t eaten or drank since the day after mother’s day according to them (no call to us at all), and she was being kept ‘comfortable’. We were so blind sided. The finger pointing began between hospice and the nursing home as to who should have called us earlier in the week. We got an elder advocate involved from the state. Definite problems with what transpired. She is now Day 14 without food or water, morphine scheduled with Ativan to keep her comfortable and I’m horrified, disturbed to my core and in shock with the entire experience. THIS is barbaric. If a 96 yr old can last 14 days without food/water, clearly she wasn’t in the ‘active dying’ process as they insist. It would be different if she had terminal cancer or some other terminal disease. This, I believe, is 3rd party euthanasia and I can’t believe it’s the ‘norm’ and rampant in our society. Complaints have been submitted to the state by us on both hospice and the nursing home. Little comfort as we watch our mother die a slow and disgusting death (aka murder). I wouldn’t treat my dog this way. Things have to change. As we get older....are we next?
Both my parents, who were in their 90's, had Hospice care. The process was explained to me step by step, therefore there weren't any sudden surprises. My Mom went from stage 1 dementia to final stage in just a couple of months, it was accelerated due to a head trauma fall she had at home. All it took was one fall to start the beginning of the end.
Hospice Care is another set of eyes and ears. Mom's care team would visit couple times a week. I believe some family think Hospice is there around the clock every day of the week, they are not, and that is clearly defined.
What needs to be changed is having more education about Hospice and how it works. Love ones caring for a parent/spouse are in a position to be like deer-in-headlights and not listening to what is being done and why. It's not their fault, emotion does take over at a time like this.
We all want our love ones to pass on peacefully. Before Hospice was created for use in the United States in the 1970's [it started in the UK], deaths were horrible with the love one screaming in pain.
I completely agree with freqflyer. This isn’t euthanasia, her body is shutting down and cannot digest food. This situation is what happens when the family hasn’t been properly educated by the hospice staff. And when family who isn't around every day suddenly waltzes in and thinks they know better.
How is your FIL?
I'm sorry you are having to deal with this. But at a certain point when nothing more can be done for a person keeping them sedated is the only course of action. Otherwise there will be needless suffering for the patient.
If you weren't always there to be told and to witness what was being done and what was being administered what would you have them do. Nothing?
At a certain point you have to trust they know what they are doing even if you are not okay with it or remove your loved one from their care. Simple as that.
We chatted for a while, then left.
6 hours later we are called again, so up we go, again. He was in a coma, stuggling to breathe and unable to recognize any of us. Dr. administered a large dose of morphine and dad passed within 15 minutes.
There is NO set timeline for death. Some people will last endless (seemingly) periods of time in hospice care, some pass within literally just hours of being put 'in hospice care'.
At 96, and not eating, not drinking, yes, it's hard to handle someone can go that long--but this is NOT euthanasia--it's a dignified and calm passing.
And why in the world would you want someone you loved to suffer, which she was doing prior to hospice? To be able to say that she lived X many years?
You don't get a medal for living to the point of absolute misery. Misery for you and your loved one.
Also, if you are not there 24.7, which I imagine you are not....you don't know that she isn't drinking at night. Or receiving IV's. Hospice is individual to each person.
I'm sorry you feel such anger, she must have chosen this path at some time along the way.
Op you are terribly mis informed about hospice, terribly so.
When they stop eating and drinking there are some things that happen. I want you to look up a Kennedy Terminal Ulcer. Do look at the images. That is not a failure of care, but of skin, as an organ. No protein. No hydration does have consequences.
End of life has many disturbingly graphic images. The body is shutting down. And to help the brain and the heart all efforts to towards that.
At the end of life, they stop eating and drinking. The body cannot process and it is harder on to try to process.
Our mom had a kennedy wound. It was pretty awful.
Before you come in and start making blanket accusations against hospice, you need to do some homework. You are very wrong and misguided.
They were a godsend for our family.
wouldn’t treat my dog this way. Things have to change. As we get older....are we next?
You would not put a farm animal nor a dog or cat, what my mom and many others' loved ones have had to endure.
What is the matter here? Really what is it. This is pretty fresh for me, less than 24 hours.
Do you understand that morphine helps them breathe easier.. My God, we saw it. My mom's respiration went from 10 to 12 at one point 8 to 16, WITH MORPHINE. The higher the number the better.
Maybe as someone else mentioned. You are trying to blame someone.
Would I do it again? In a flash.
When older people cannot articulate they are in pain, what do you want them do, suffer? Same with inability to reposition themselves. THEY CANT DO iT.
Your comment shows your ignorance, but you are in good company. Hospice is a dirty word to many.
It is actually a beautiful gift. It really is.
(((Hugs)))
You know your suggestion is excellent advice. I will follow it. It is much too fresh for me.
I can't stand when someone is so uninformed about this kind of thing, and by their uninformed comments, might frighten off someone who really needs hospice.
Thank you for reminder, Gershun. I am out.
The last thing you need, is to be told you are misinformed, or being blamed somehow for her passing, because you didn't intervene. Nor should you be shamed for not being with her more than you were able. Your experience is unique and no one else went through what you did, so you shouldn't be judged, but allowed to share your feelings and experiences freely. This is especially hurtful and shocking, when it is coming from other family members of, or caregivers for, terminally ill people.
Hugs to you and other hurting individuals out there with an opinion.