My family member's caregiver hated being a caregiver. After brain surgery, doctor recommended a shunt to relieve pressure, caregiver refused. Said there are problems with a shunt. Of course after brain surgery that wasn't a decision they could research and decide for themself. Of course, with no shunt next comes seizures. 2 months in rehab started to decline instead of getting better. Caregiver still refused the shunt. Was released to go home. Progress was not getting better. had a seizure and caregiver didn't give emergency seizure meds, just waited for ambulance. 6 days after 1st seizure, was in nursing home and nurses didn't even know why they were there. Had a 2nd seizure. Didn't have the emergency seizure medication on hand. Because caregiver never discussed it with them. After 2nd seizure, and 10 days on 8 medications at a time to prevent seizures, in the hospital. When medication wore off, they could sit up and respond by speaking. After 8 medications at a time, couldn't move, needed machine to help breath. After 10 days caregiver decided to take them home for hospice. I thought, great, now we can see how they do without being given 8 medications at once. They were breathing on their own. Responded by speaking. But... caregiver was told to take them home. Don't give them any food or water, and they would supply them with drugs to keep them totally sedated. After 2 days with no food or water, they could still respond to me speaking to them, and sobbed when they heard the voice of another relative they hadn't seen in months... On day 3, they died. Caregiver has now gotten the large life insurance pay out, no longer has to work, has a new car and new house. I know for a fact my family member didn't have anything saying do not resesitate. and the hospital never asked them directly what they wanted.When in rehab, they were supposed to get released to go home. Got very agitated. I asked if they were nervous about going home. They said to me "why would I want to go there." Now I understand why... They were yelled at by the caregiver (spouse) in a wheelchair because they got anxious when they were confused, Caregiver said they were being unsocial and called them names.... I said it was just their meds... Said no... they are just being an ___________. Caregiver hated having to ask for help. Having to be restricted to staying home and being a caregiver. Even though my help was available 24/7.How can a hospital say , with no evidence of what the patient wanted, just take them home, don't give them any food or water, and we will give you meds to "keep them comfortable." Totally sedated? I am still in shock... It was all so fast. So unbelievable. I should have done something to protect them. But when ever I spoke up , I was told not to come around if I couldn't keep my opinion to myself. So. Do they die thinking their family doesn't care. Or do we go and watch them die and keep our mouth shut... I don't know if I can live with what I didn't do to protect them...
From what you wrote, I gather that you have never been a caregiver yourself. There's a lot involved, and the person who IS the caregiver doesn't have to provide any information at all to others and may choose not to. This often results in family members and friends calling each other, "Did you know...?" And an outraged response, "How could she....? And trying to interfere because what they've learned from each other (which is possibly not true) seems so inhumane. So heartless.
I'm a family caregiver who was unkindly maligned by my Rude Aunt for forcing my dad into hospice. I didn't. He decided to sign himself into hospice care, and I knew nothing about it until his doctor called and said it was going to happen and that I was welcome to be there when dad signed the papers. Rude Aunt also told many people that if I'd just feed dad mashed potatoes it would cure his cancer. He wouldn't eat them, and mashed potatoes don't cure cancer anyway. Our family never recovered from the rift caused by Rude Aunt.
My point is that assuming things and challenging things serves nobody's best interest. You probably don't know all of the story, and that's as your LO wanted it to be. Dying is something that many prefer to do in private for the very reasons that you outlined in your post. They don't want someone trying to outshout their chosen health care advocate. They want to leave this world in peace.
I hope you can let it go and realize that your LO was very sick and now is no longer suffering. Peace.
Get some grief counseling for yourself so you can process this loss and move forward. My condolences.
How old was the person who passed? Was the surgery a last ditch effort? Maybe spouse did not want to put his wife through anymore suffering.
Hospice is not recommended unless a Doctor feels its needed. Hospice means end of life. Its not that Hospice did not give the person food and drink, it was because the body was shutting down. First sign is they can't swallow. Forcing food or drink at this point does more harm than good. All life supporting meds are discountinued.
And when one goes under hospice care a DNR must be signed and put in a prominent place in the home.
Hospice does not tell anyone not to give food or drink to the person under their care unless they are well into their actual dying process, as that can be very painful for them.
Usually it is the person themselves who will stop eating and drinking as their digestive system is the first system to shut down during the dying process, and forcing either can be quite painful.
I hope that you will seek out a good grief support group so you can move forward now. Grief Share is a free grief support group that meets all over the country, plus the hospice agency that was used for your loved one offers free grief counseling for up to 13 months.
I wish you well as you move forward after your loss.
Your loved one is at rest and at peace now and it's important for you to seek peace for yourself. There are some few groups at Facebook with private groups that may help as well. If you are faith-based and a believer, clergy may help you find peace.
Grief counselors tell us that when we lose someone important to us we often choose anger and blame as one way to prevent the deep woods of grieving we see looming. As long as we can focus on doctors, nurses, hospitals, long term care facilities, family, the patients themselves in dire cases ("He didn't take CARE of himself, and now...."), and in extreme cases we may even blame ourselves.
Seek help. I am so sorry for your loss and for your grief. I wish you peace. We are in no positions here to judge medical cases and their complications, but we do daily see the sadness of extreme grief, and again, I am so sorry.