Deprived of water and food after my mom was sent home during the pandemic. Painful ending. I was there to see it till the end. Giving my mom morphine and anti-anxiety medications as I was constantly advised to do only knocked her out unconscious until she woke up again to the fear of dying. More people should know about what I saw my mother go through. Why can't we be provided water and food at the end? Where is the compassion? Where is the comfort? Even a person on death row is afforded his/her last meal. What butchery. This profession has turned cold and lacks real compassion for people who are at the end of life so they can sleep well at night. Don't assume people don't still want a fighting chance till the end. This industry (hospice) needs more review of their procedures. And I (son) was there to poison her with industrial strength medications till her body got exhausted and died. If hospice is providing compassion I certainly didn't see it.
If your mom was no longer drinking by HER choice then giving her water would most likely result in aspiration leading to pneumonia and again fluid would remain in her system since the kidneys cease to function the excess fluid would result in edema and possibly the fluid leaking from her pores or a breakdown of skin.
In general the amount of morphine that Hospice provides to a family is a measured, prescribed amount and the amount delivered is not enough to kill a person even if the entire amount was given at 1 time. (I had the same thoughts when I gave my Husband morphine and I was reassured by the Hospice nurse)
I am so very sorry that you had a bad experience with the Hospice that you chose or was chosen for you.
(there are 2 types of Hospice FOR profit and NOT for profit I do not know if that made a difference in your case)
Hospice Workers the Nurses, CNA's, Social Workers and all the rest of the team are generally Dedicated and want nothing but the best for their patients. It is not easy to accept a new patient knowing that that patient is going to die. Most medical professionals expect that the patient that they help is going to get better, not so with Hospice workers. It takes a special group of people to help patients, family and friends through this.
If you think that you or your mom was not treated properly you can file a complaint.
You will get a survey and I urge you to fill that out it does get looked at and the information is discussed. If there was a particular person that you felt treated you or your mom with disrespect or an uncaring attitude call and talk to a Supervisor.
I am so sorry for your loss but it was the cancer/pneumonia that Mom passed from. My Mom slept the last 2 weeks of her life, she was in a nursing home. I would rather her be sleeping pain free then awake in pain and fearing the inevitable.
Hospice has grief counseling for families. You may find comfort in attending a session. Or maybe there is a Church that offers it or the Hospital Mom was in.
I pray you find comfort.
I very much agree with CWillie. Communication is key. When my mom was admitted into her hospice program, the intaking nurse sat with us for 3 hours going over the program, our questions, expectations, etc.; she explained in great detail the mission and purpose of hospice. She also *stressed* that mom was free to leave hospice at any point if she chose to do so, to pursue continuing treatment; and if she left hospice, there was no problem if and when she chose to come back into the program.
It also helped, in our case, that mom wasn't right at death's door; that we weren't in such a terrible emotional state that we couldn't comprehend what we were being told. I think that too many doctors don't bring up hospice as a viable option until too close to the end of life, when emotions are already running high, and people - both the person needing hospice and the people who love that person - are physically, mentally and emotionally exhausted. So the opportunity for hospice to help give a terminally ill person the best quality of life they can have becomes so very limited, and family doesn't get to see that aspect of hospice care; they only see the very last hours and days when our LO's need to be heavily medicated to make the end pain free.
I watched mom's hospice give the power to make her own medical decisions back to her, which was so very important to her. They spoke to her as a whole person, not just a patient with end stage CHF. They never pushed medications on her; they never discouraged her from eating or drinking; in essence, she could do whatever made her the most comfortable and happy. After years and years of fighting - because my mom was a consummate fighter as well - it was a relief that she could sit back and relax and let nature takes its course, without the fear of dying in pain.
I am sorry your experience with hospice was so dreadful; certainly, like anything else, hospice organizations are not all created equal. If you find yourself struggling with your grief and guilt, please consider talking to someone to help you navigate your feelings and get you through to the other side.
I think that most of us have an unrealistic expectations of what death and dying looks like. I also think that doctors, nurses and others who are in the position to help people during this terribly difficult time are mostly MIA instead of taking the time to explain what is happening, answer questions and tweak the care received.
I recently lost an uncle to metastasized prostate cancer and his closest family was traumatized in the opposite way than you OP, he was in desperate misery until the family stepped in and asked that treatment end, he was not at peace until he was moved to a hospice facility the day before he died. My own mother's death was three long days of struggle during which she was kept drugged out of her mind, for which I am grateful. To me Dylan Thomas' poem is the antithesis of what most of us hope for at the end of life, to "rage, rage against the dying of the light" sounds heroic but pretty much guarantees an ending that is not a peaceful one.
You're exactly right. When mom passed, the head of the ICU was so "giddy" that the Pallative Doctor told him to leave. I know they wanted the room for someone else. The nurse was really nice, though. She was the one that called to let me know, mom had passed (the PCP? nope which was fine. I was glad to not have to deal with him and some of his staff anymore anyway)
I'm sure hospice must have explained that to you, or you could have asked them to explain.
When my husband started his 6 week dying process, he went without eating for 41 days(and never once asked for any food)and drink for over 25 days, before he finally went home to be with Jesus. He too was under hospice care in our home and while it was painful for me to watch him go through it, I knew that it was all part of the dying process, and the fact that my husband too was a fighter till the end, I believe only prolonged the inevitable.
I hope and pray that you are getting some grief counseling, so you can better process what you have been through, and so you can move forward in your life and rest in the knowledge that your mother is now at peace. God bless you.
Thank you for the kind words and response. My mom was a fighter her whole life (her personality) and all I could do for her was give her a cup of water while she was in bed where she would aspirate and cough with sips of water. I wasn't given alternatives in hospice. I was never offered a water drip for my mom. I know hospice says 6 months of care. I remember her begging for more water. I was told to give her a dab of it on her lips as advised by hospice. The body obviously needs more than that and mix in the hard narcotic pain killers with it and you have a recipe for death. The cancer didn't kill her and the medical records show pneumonia as reason for death not cancer. My mom was not in pain but I was told her body was shutting down and to give her the meds routinely. Very vague. The hospital was happy to release my mom with a DNR and to be free of her. Open bed needed for others. I guess life comes down to a game of numbers. Like when all the taxis cabs are taken and you have to wait forever.
Are you saying that they would not allow you to give her food or water? Was she able eat or drink if it was offered to her? Many people start shutting down and refuse to ingest anything. With that advanced cancer, I would expect that the morphine would be necessary to manage her pain. It does depress your systems but keeps a person from needlessly suffering. I guess it's a fine line. Personally, I would prefer to be out of it than suffering the pain of end stage cancer.
It's hard to watch someone die. And to lose someone. Again, sorry for your loss.