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I had my mom on hospice for 2 years; although she had extremely advanced Alzheimer's, I used them as a walk-in clinic to renew her routine meds and lab work. When it came time to get a feeding tube (so she would not have to die of dehydration which can take 2 weeks) I revoked her hospice by signing a piece of paper, got her hospitalized, feeding tube put in and she was fed in 6 hours. She did great with it ***BUT*** a feeding tube requires a ***LOT*** of work to avoid complications.
Mom was discharged, I simply reinstated her hospice by signing a piece of paper and hospice provided a pump, tubing, and tube feeds...and diapers and dressings and most other supplies.

Mom died of other natural causes, age 90, due to kidney disease -- she was an insulin-dependent diabetic for years and years and years. Her Alzheimer's did not kill her at all. I battled Alzheimer's for 15 years. I never thought other causes would kill her. I always thought her Alzheimer's would have done it.

Now with liver failure, a feeding tube may not a great idea because he probably won't be able to digest it DEPENDING on the degree of liver damage. Once he turns yellow, his stools will become chalky because the bilirubin will no longer be excreted in feces (which makes it brown), but through the kidneys. Bilirubin will clog the kidney tubules and cause kidney failure and death. You will know this is happening when his urine turns more orange color AND urine output decreases considerably. Death will be imminent afterward--within a week.

You are NOT sealing his fate. Natural causes--nobody is going to live forever.

My mom never went in a nursing home, but caring for her was very hard work -- the last nearly 6 years was 100% supervision and in the end I had to diaper her and even make certain she has a bowel movement scheduled every Tues, Thursdays and Sundays because if she did not go, the 4th day she had impaction. that is a living nightmare to go through. But mom was very comfortable and she was surrounded with love and her own surroundings. I do NOT advise people to do home care UNLESS you absolutely know what you are doing. Mom's care and medical management was very challenging to put it mildly.
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Prayers sent for this most difficult of choices.
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what organ failure does your dad have? Have you tried holistic measures to try and cure your dad? I don't think you should give up on your dad, we all have been conditioned for years to think there is no cure for what ills us but it is. Herbs and plant-based foods are always a natural cure. Put your dad in a nursing home, read up on how to cure the body of any ailment naturally. Make instruct the nursing home that you will prepare your dad's meals. Fight to save his life.
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disgustedtoo Jan 2021
Read much?
"...the doctor said yes because liver failure is terminal unless you get a transplant."
No "holistic" anything is going to benefit this man. Based on the profile and lookup of his other "condition", the liver failure is due to alcohol abuse. Again, not a judgment of the dad or his decisions, just pointing out that this is NOT a DIY situation. He is not likely going to qualify for a transplant, even if one was available and compatible.
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Honey, don't ask that question. Be firm in your convictions. What you are going thru, ie, including the personal emotional turmoil, when there is nothing that can be done....at this point, let him do what he can, when he can. If he wants donuts for dinner.....let him have a donut for dinner. If he wants to try to jog a mile.....jog with him. Hospice is a tough decision. You don't have to tell him that hea dying, just be with him. You can't have regrets for being with him no matter which way you go. Don't torture yourself with the decision. Because technically, that decision is already made. Just enjoy him now.
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"I asked my dad if he wanted to go to a nursing home where he would continue treatment or if he wanted to go to a hospice home where he would get pain management and end of life care even if it may be several months. He agreed on the hospice."

So long as your dad is considered cognitively capable of making this decision, it IS his decision to make and he made it. The right decision is to abide by his decision.

"I feel like either way I am sealing his fate." YOU are not sealing his fate. Either way the most likely outcome will be the same. The difference is quality of life, not quantity. As you note, you are torn between allowing nature to take it's course with comfort care or sending him off to a NH, where he might be miserable and where you might not be able to visit with him.

Allow him to make that decision, as he has already. He CAN change his mind, but again, it needs to be his decision unless he isn't cognitively capable. It sounds like he understands the difference. None of us want to lose any of our loved ones, but there really isn't anything we can do to change that. We can only try to make their time left comfortable and to be there for them.
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Aj,
As hard and emotional this choice was, know you made the right one. MIL lived in my home with hospice care and did so for almost 2 years. They are there to help our loved ones live the best quality of life they can. They do not look for a cure, but do maintain needed medication ie heart meds,etc. They also assist with pain management, bathing, weekly nurse visits, which can turn into daily visits when the situation calls for it. I am sorry to hear about your dad and what all of you are going through. He made the choice to enter hospice care, support this, it'll make it easier on him. Unfortunately you said that the only cure for him is a transplant, a couple questions for you to think about, would he survive anesthesia and complex surgery, would he be able to deal with the pain afterwards, would he be able to follow dietary and medicine requirements after the transplant. It's easy to second guess what the right decision is for his best interest. Love him, talk with him, spend precious time laughing and celebrating his life. Prayers for your dad and your family.
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My father diagnosed with cancer in dec 2019, everyone kept saying it's suspicious. I steered him off surgery which I feel guilt for now. While looking at second opinions during shutdown he got a spinal infection, three hospitalizations(spinal infection, sepsis, kidney infection) later last June I was told he was a hospice patient, I made the decision he really was not fully there. They told me he had a few weeks, two months later he was kicked out and I put him in rehab, six weeks after that he was home. He is fairly stable now - I have help 4 hours a day and my mom is with him. I am constantly tortured even though I know the best I could do I did with the info that I had. He still has cancer and I have been told that there is not much they could do now that wouldn't further weaken him, he is 87 and it has been a rollercoaster of emotions the whole year. I am doing my best but of course always question my decisions. He wanted the surgery yet I pushed of the second opinion and then suddenly the" s**t hit the fan as they say" during shutdown. My biggest regret at this points I feel like I took hope away from him although intellectually I think I made the decisions that were smart based on the info that I had, emotionally it's another thing altogether. It's been such. sad thing to watch, I can deal with the physical pain but watching him be in mental anguish about his situation is so difficult for me, knowing that I can't help him. It has been great to have him at home even though it's a lot for my mom who is 85, I have trouble with the anticipatory grief and try me best to keep it at bay. So many emotions so hard to deal with everything.
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katepaints Jan 2021
I’m so sorry this is all happening to you and your family. In long distance caregiving my brother (probably dementia, waiting on doctor) I’ve had situations that brought me to two conclusions that have helped me emotionally and eased the stress so I can think better. Most of the time I remember them. One, I made the best decision I knew based on the information I had, and I had my brother’s best interests at heart. Two, I can’t control everything, no matter how hard I try. It makes me furious. It makes me cry. How does your mom handle his sadness and anguish? She may have some thoughts. It’s okay to let the anticipatory grief out. I find it pops up at weird times when I least expect it. I’ve learned to give myself time for it, usually talking to a friend or first thing in the morning. Even a bathroom break. I have more energy when I allow myself to do this since I’m not holding up a dam. You might want to contact the hospice because they offer grief counseling. Your dad has not passed but he is passing and it can be unspeakably sad. Take care.
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My sister with the help of hospice killed my mother. I don't THINK this .. I KNOW this . There are many others who know this as well. And as for their '5 free days' with respite care .. you know so the caregivers can have a break .. thats where my mothers beginning to her end actually started. They took my mother off ALL HER MEDS on the friday she arrived at the nursing home. Of course it was downhill from there, as she told me "Somethings not right". I asked what does she mean, she replied "I don't know. Somethings just not right" After her '5 free days' at the FOUR SEASONS in Columbus Indiana, my mother came home .. where she died 5 days later. After stopping all her medication, they stopped her food intake. Then they stopped her liquid intake. Claiming of course she could no longer swallow. (Although it took her alittle longer than normal, she was swallowing) Not to mention they're pumping in the morphine during all of this. So yes, my sister along with the help of hospice purposely, intentionally and legally killed my mother.
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ZippyZee Jan 2021
No, they didn't.

Your only posts on the forum are complaining and misinforming people about hospice. Troll elsewhere please.
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We question so many things as we walk through our lives. I think it is good that you are evaluating your decisions that you make, essentially when they concern those you love who are vulnerable.

Please rest assured that if you select a hospice plan that is best suited for your needs they will be a blessing in your father’s end of life transitioning.

He will be kept comfortable and have access to a social worker and clergy. You will also have access to the social worker and clergy.

Your father has been approved for hospice. He will not be healed from his medical condition.

Allow him to die with dignity. At this point in time, quality is more important than quantity.

I believe that most people know when the end is near and come to accept it gracefully. No one wishes to suffer more than they have to.

We used hospice services for my brother near the end of his life. All of his needs were met beautifully and he died peacefully without pain.

Wishing you and your father peace during his transition.
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I hope they don't *cut out his food intake *cut out liquid intake (claiming he can no longer swallow) *pump him full of morphine (asking you 'do you really want him to lie here and suffer in pain?')
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ZippyZee (?) Yes, they did. I was there the entire time. I saw what they did. I would have no reason to say this if it wasent true. I have nothing to gain either way. I am not misinforming the people. I am stating the facts. I am stating the truth.
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