Aunt couldn't chew or swallow in the end stages. Did we starve her to death?

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My 88 year old aunt just passed and I am so torn up about it. She was in a nursing home for just over two years with partial left side paralysis. She was assessed for stroke but the CT showed nothing. She improved with physio for a while but then declined again. About 3 weeks ago she started having trouble swallowing. She told us her throat hurt but the Dr said everything was clear. She was already on pureed foods as she'd had trouble chewing and swallowing for a while but now she couldn't even keep liquid in her mouth. This went on for a week with me pushing for another opinion and maybe some IV fluids but the Dr convinced my mother that this was just 'old age' and that my aunt was in the process of dying. We still tried to give her sustagen using a straw but she could barely swallow anything. My other aunt saw her on Sunday and said she refused to eat but 100% my elderly aunt would NEVER have starved herself intentionally and she was still accepting liquids but couldn't swallow. On the Tuesday my mum rang and they said she was doing ok. Drinking a little but confined to bed. On Wednesday my mum and I brainstormed getting a swallow assessment, maybe OT and my mum arranged a geriatric specialist to attend. But it was too little too late. We arrived on Thursday to my elderly aunt unable to speak, unable to swallow, in lots of pain mostly due to severe mouth ulcers that had formed in her mouth. She was skin and bone. I wanted her to go to hospital but the nursing home said we would only prolong the inevitable. We didn't want that. We didn't want her to suffer and they assured us she wouldn't be in any pain as she 'died naturally'. However by that afternoon it was clear she was in pain with both her ulcerated mouth and severe cramping. We arranged morphine patches but by the next day (Friday) she was obviously still in pain so we requested morphine injections as we really didn't want her to suffer at all. She was the kindest, gentlest, most lovely woman I'd ever met and we keep an almost constant vigil by her bed until Saturday night when she passed. It was the most horrendous 3 days of my life and she never seemed at peace but rather agitated at times (even with the morphine). It was very traumatic for everyone and we have all questioned the decision to let her go as it was not painless as suggested and I honestly feel that we starved her to death and if we'd acted quicker she would have improved and maybe survived but she would have needed a feeding tube perhaps... I'm just full of rage and questions. Does anyone have any advice or can share their experience? Did she starve to death wondering why we weren't helping her? Her eyes would water at times and they said that was normal but they looked like tears. I'm haunted...

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Userwj123,
I know exactly how you feel. I have had patients in the hospital in the dying process hang on for days with no food or water. It was hard not to give them anything.

I had the same situation with my dad. He didn't have dementia. He had a stroke, that made it difficult for him to swallow. He had a feeding tube put in. A few days later he had a devastating two part stroke that turned him into a vegetable. The nurses tried to feed him through the G-tube but the liquid food just sat in his stomach. It wasn't being digested. He was dying.

Hospice explained that, when the body shuts down, preparing to die, it stops the digestion process.
This is a helpless situation but we have to let Mother Nature take its course, however brutal it may seem. There was no stopping my dads death and you couldn't stop your aunt from passing away either.

Hospice explained that the dying person is in a different realm. They do not feel hunger and thirst like we do. They may have other pain but none from hunger and thirst.

I'm taking care of my 94 year old mother in stage 6-7 Alzheimer's. She is starting to have trouble swallowing thin liquids. That is the start of the course of dementia-caused dysphagia (difficulty swallowing). I hope she will pass away from old age, in her sleep, before she reaches the end stage.

It is almost too much to bear, even if we understand it.
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THe hospice nurses gave me several books on the final days of someone approaching death. Learned that In those final days the brain release endorphins... they do not feel thirst or hunger.

I too was worried about that aspect. Be assured, you did not starve her. Had she eaten anything she would have been in terrible pain because her body was no longer able to digest food. Had you given her anything to drink it would have immediately cause aspiration.. with liquid in her lungs.

This is the normal course of events. Just very hard for the caregivers to stand by and do nothing!
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Dear userwj123,

My deepest condolences and sympathies on the passing of your beloved aunt. I'm very sorry for your loss. I know the pain and sorrow is deep.

From everything you wrote, you did everything you could for her. I know it's not easy to see our loved ones decline and to witness their passing. I know you would have done anything to make her comfortable and prolong her life a little longer.

Everything you are asking and feeling is normal part of grief. I, too, am still going through this since my dad's passing and that was 11 months ago. But I am trying to adopt MidKid's suggestions still.

Take care of yourself. Allow yourself to mourn this beautiful woman, your cherished and beloved aunt. Sending you all my thoughts and prayers.
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You did everything you could for your aunt and certainly did not cause her to die from starvation. The advise from Drs and nurses was appropriate under the circumstances. I do take issue with the fact that her ulcers were not addressed and her pain and anxiety better controlled.

However none of the family is professionally trained so you could not know what to ask for. You can't be guilty for something you did not know how to prevent.

Tube feeding or IVs can not prevent the inevitable and your aunt had begun her final journey sometime before she could no longer swallow.

It is always very difficult to keep vigil with a loved one who is dying but it was important that family members were there to comfort her.

You don't need anyone to forgive you. You did nothing wrong.The first part of th grief journey is anger and that includes feelings of guilt that you were unableto stop the inevitable.

If you continue to feel so disturbed talk it out with friends and family or get some professional help.
If you can't afford councilling Hospice provides 13 months of grief support and welcomes relatives of non hospice patients into their groups.
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Dear User---

I am so sorry for your loss. This must have been so painful to witness.

The EOL for many people is a quiet, painless process. For some, it's not so. You say she seemed at peace--but agitated at the same time. This is normal and doesn't signify that she was in pain. If she was in the hospital or an NH, I am sure they kept her as pain free as possible.

You DID NOT starve her to death. Her body shut down naturally and normally. Not being able to swallow is one of the signs of impending death.

Would you rather have tube fed her for a few weeks and kept her here in pain just so you could feel "better" about how she died? I bet not.

Everyone will die. You allowed her as peaceful a death as you could. I wouldn't keep those images of the last few days of her life fresh in my mind by re-playing them over and over. You're freshly grieving, now, and that will pass. You dearly loved your aunt and in the end, that is what matters.

Do you believe in an afterlife? DO you have a spiritual counselor to whom you can speak about this? The "rage" you feel is not necessary.

When my sweet dad died (he also stopped eating and drinking and was living on morphine, Ativan and popsicles) he also seemed agitated at times. More Ativan, or morphine. It took a week for him to pass--and when he did, we were all grateful for his "new life" which was now free of pain. Yes, we could have placed a feeding tube, but his DNR specifically asked for none. Also, what would that have accomplished? A longer life of sheer misery. And yes, his eyes watered profusely. (Did you not have Hospice on board to explain all this to you? That would have helped--maybe you can talk to someone about it now, and find that your aunt's death was "normal".)

Your aunt was 88. That's a good, long life. Please focus on the good things and don't wallow in the "what ifs".

I'm sorry for your loss and hope you can find solace in time.
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