I'm sending my father to hospice care tomorrow and I don't know if it's the grief or doubt that's making me question my decision. My elderly father has Parkinson's for over 20 years and dementia onset in the last year or so. He always had a very strong will to live but his quality of life went severely downhill a year ago. Pain medication stopped working for him and he was in severe pain most of the time. 10 days ago he was admitted into the ER for urosepsis and has been here ever since. While the infection has cleared, it left him severly weakened to the point where doctors say he will never physically recover or move again. He is awake for brief periods of the day but cannot do anything beyond opening his eyes and is only able to respond to noise and pain. The choices available were to have a feeding tube installed which could prolong his life for months or years, or to send him to hospice and await death. My father has a DNR order but I don't think he ever factored in being kept alive by a tube. I don't want him to be stuck in a broken body kept alive by a tube but I also hate making that choice for him. What if by some small unlikely chance he wanted to keep fighting? The doctors can't even say how much awareness he has left - if he even knows who or where he is. I chose to send him to hospice care and I'm overwhelmed by guilt at the thought that I'm letting him starve to death. Logically, I know that isn't what hospice care is but seeing him physically wasting away every day just destroys me.

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Fancy, you're not letting him starve to death. You're making perhaps the toughest decision of your life, on behalf of your father, and thus also probably the most important decision you would ever make for him.

I think the guilt would really be overwhelming if you didn't involve hospice, as he would continue to deteriorate.

Comfort yourself and know that you are doing the best thing you can by bringing hospice into the situation so that he can pass without further distress.

And take whatever time you can to relax and prepare to be available for him during his last days.
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Reply to GardenArtist

Based upon the information you have given, I'd say it is the right call.
They will manage his pain.
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Reply to XenaJada

Hospice is the right choice. I'm with you on the how emotionally hard the feeding tube issue is. I'm fortunate my mother made me her medical POA over a decade before she began having any problems. I had an opportunity to ask her whether she would want a feeding tube or not. A ventilator or not. For my mother the decision point was the remaining quality of life. She told me that if she was still living a good quality of life with the expectation of some more good days then she would want a _temporary_ vent or feeding tube. She didn't want either if it was expected to be permanent or if her future quality of life didn't include at least sitting up in bed enjoying a visit with family or friends. When she expressed these choices she had experienced a father with a DNR dying of a sudden heart attack during a congested heart failure decline; a mother who died slowly from kidney failure caused by end stage congested heart failure; and the death of a younger brother in hospice with cancer. She told me she didn't want to linger in pain, particularly if death was certain or nearly certain anyway. My mom has always been a fighter too. She takes daily walks to keep her strength up and hopes to see some of her great-grandchildren graduate from high school, but when the final decline comes she doesn't want it extended artificially. Your father signed a DNR so he likely has a similar point of view.

God bless and comfort you during this very difficult time in your life.
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Reply to TNtechie

Ah, the question of a feeding tube. (sigh). Having worked in the ICU, in Hospice, and in the Dementia-care unit, I've seen several episodes of 'to put in a feeding tube, or not.'

Let me say first that feeding tubes can be an actual life-saver for people who need them, especially when they're temporary and/or especially when the person is otherwise cognitively intact and fairly functional. The film critic Roger Ebert had one for several years following cancer surgery that took away both eating-by-mouth and speech -- and during those years he continued to work and write.

But over and over again I saw the folly of putting a feeding tube in someone who has dementia. People imagine that a feeding tube will prevent aspiration-pneumonia, for example, but a belch can still bring the liquid feeding material up the esophagus and into the airway to the lungs.

Urosepsis is pretty serious, especially in the elderly, alas. If he's truly unable to do more than open his eyes, I wonder how much he is aware of anything? Do his eyes follow you? Can you ask him Yes/No questions with 'blink once for No' or something?

Your description sounds like Hospice would be good. He's already said he doesn't want chest compressions, which tells me that 'life at any cost' would not be his choice. The goal of Hospice is to give each patient the best day they can have at that time, which would include pain relief as good as possible, prevention of such symptoms as nausea, constipation, bedsores and so on. Hospice would also provide some support to you, which sounds like it would be needed. Hospice chaplains are generally trained to help you talk about your feelings and consider your options, helping you integrate any religious teachings or opinions you already have with whatever is going on now, but not imposing their own religious views. Hospice social workers have similar expertise in a more secular realm.

By all means have a serious talk with one or both of those people.

And please do bear in mind an important fact, obvious but surprisingly often overlooked: Nobody can prevent him from dying; the best we can do is postpone it. All we can do, as the families of the patient, is try to choose the best circumstances and to support life as long as it is meaningful. And let life go when its meaning and usefulness to the patient has gone.

My heart goes out to you in this tough time.
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Reply to maggiebea

My husband passed in hospice care. They manage the pain really well, I doubt your dad is feeling anything. Usually what happens is the body slowly shuts down, it's hard I think to wrap our minds around passing like this, but our bodies do have a way of methodically shutting down naturally, pain medication helps along the way just in case. Passing slowly isn't like being injured in an accident. My husband started to shut down before the sleeping phase, for a couple of weeks, and he felt nothing. He quit eating, and went into the sleeping phase after that. As caregivers we also have additional grieving, and it starts before a loved one passes, that grieving starts when we see the decline in our loved ones health and we know it's coming. You're grieving now. You've done the right thing.
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Reply to W61ha13D

passingfancy, I know we rarely want to be the one to make any choices for our love ones when they are no longer able to make their own choices. There are so many "what ifs". We have to do what our parents had requested for situations like this. I realize not everyone is able to have "that talk" with a parent.

For both of my parents, the doctors recommended Hospice to which I learned as much as I could about this time in a person's life, what happens to the body and the organs, etc. I didn't want my parents to be in terrible pain, so I was thankful Hospice was there.

Hope you can make a decision that you are comfortable with. And even then you will be second guessing yourself, which is quite normal for us to do.
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Reply to freqflyer

ShakingDustOff—Many of us are NOT CATHOLIC. I’m the furthest thing from Catholicism as a person can possibly get. So please stop telling people to talk to their priest.
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Reply to HolidayEnd

Can you do hospice from home. Sounds like your getting close to the end. Take two weeks FMLA. No feeding tube.. Be there with him. You’l feel better in the end that you did what you could. I know it seems like a long time caring for them, but once they're gone, they're gone. 4.5 years here, and I can’t believe how much I miss them.
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Reply to Ihave1now

We used hospice for my dad and am I'm so glad we did. He had been hospitalized for pneumonia and flu but was already in probably last stages of dementia. The doctors at the hospital suggested it. I think they knew more of what he was facing than we did at the time. We called in hospice and they helped him and us transition. He already really didn't want to eat and his organs were shutting down. I don't really think he was in a lot of pain, but the medications helped with his agitation and restlessness. I think the hospice chaplain really helped my mom understand the transition and to give him permission to leave. Everyone from hospice was compassionate and caring. The hospice chaplain has called my mom and sent articles every month since his passing and honestly, that's a been a big factor for our healing. Hospice is more than end of life transition for the patient, for us it was transition and support for the family too. The relationship my dad had with hospice was 10 days and he really wasn't awake for it. The relationship we've had with hospice has been 14 months. Don't feel guilty at all. They will be a gift to your family.
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Reply to blessedtep

My husband was 75 when he died unexpectedly two days ago. For the past 8 months I watched him go from being a vibrant person. To bring wheelchair bound and unble to transfer from his wheelchair in and out of bed.
The stress of seeing him like that was terrible.
He also had a DNR and before I called 911 I had it in my hand.
Your dad would not want to live this way, would you?
Hospice will keep him comfortable and provide you with support. Don't keep your dad alive when his quality of life is so poor.
You have to ask yourself how will I feel in a year.
I know in my heart that my husband did not the quality of life he endured these past months.
I would never wish him back.
It sounds like your father can not get better you need to honor his DNR wishes. God unless you whatever decision you make is the right one for you.
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Reply to Baileyparker

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