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I know no one has a crystal ball but my grandma’s vitals were good on Friday when her nurse came but she’d been describing excruciating pain all week. I told the nurse I was gravely concerned about this pain and she dismissed the idea my grandma was close to the end because of her vitals.



It’s Sunday night and my grandma hasn’t eaten since Wednesday. She had a tiny bit of apple juice dropped into her mouth by the nurse on Friday night and that’s it. We’ve been giving her morphine, gabapentin, and quetiapine as directed. We started her on a laxative, as well, but she hasn’t had a bowel movement since Wednesday morning. Since Wednesday night, she only wakes up to scream in fear or pain. Again, the nurse said it wasn’t a big deal since her body was likely dealing with the pain by sleeping. She couldn’t find any cause for the pain my grandma describes and suspects it’s neuropathy. This symptom only began last Monday and it’s frustrating to me that this nurse doesn’t take my concern seriously. We’ve offered my grandma food and drinks when she opens her eyes, but she doesn’t respond to these offers because she is screaming in pain. After about 3 minutes of being awake, she goes back to sleep. I genuinely don’t see how this can go on for long. Thanks for reading my essay.

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When a person is actively dying they do experience great pain all over their body as their organs are all staring to shut down. I'm surprised the hospice nurse didn't share that with you.
When my late husband was in his dying process he couldn't be touched or moved without hollering in great pain and no amount of pain medication helped with that.
He also didn't eat for 41 days and had no drink for over 25 days. The hospice nurse said he broke their record for going the longest with no food or drink.
The hospice nurse can also give your grandma a shot of Relistor for her constipation. That is given for opioid induced constipation, and it works in about 15-20 minutes.
My late husband had to get that shot twice during his dying process so he could poop.
I'm sorry that you're losing your grandma. I hope that she will go peacefully.
Sending blessings to you and her.
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vanessa92 May 2023
Thank you for your reply. I had no idea she would experience pain has her organs shut down. Your husband’s experience sounds terrible and I’m so sorry you and your family went through that. My grandma has been given Senna regularly since Saturday (it’s now Monday) and still hasn’t had a bowel movement. My mom thinks she probably doesn’t have anything left inside her stomach.
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I’m so sorry you’re experiencing this with your grandmother, it’s excruciating to watch. My dad very much did not want to be touched in his final days. The hospice meds included morphine, haldol, and Ativan. The Ativan was likely the best one at calming the agitation he felt and helped him rest with ease. He passed five days after he last ate. We used ice chips made from his favorite soda until the last few hours on advice of hospice nurse to prevent dehydration as that is known to be painful to the body. My mom went 3 complete weeks totally asleep without food and only minimal water before she passed. We found with them both that dying is very much a solo journey, it’s like a person goes to an in between place where they cannot be reached anymore. I wish you all peace in this very difficult time
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vanessa92 May 2023
Hello,

Thank you for your reply. My grandma gets lorazepam and quetiapine, but I’m not sure how frequently she can ACTUALLY get them. It seems like the suggested doses are too infrequent. I would like to hydrate my grandma’s mouth but I’m scared we’ll cause her to choke with ice chips. With my dad we used sponges on sticks to moisten his mouth, but we don’t have any. I’ve thought of dropping a bit of water into her mouth with the droppers we use for her medicine… I’m sorry you’ve lost both your parents. I hope they are now at peace
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vanessa - watching someone in pain is so distressing. However, since your grandma is getting morphin, she's probably not in pain, instead she may be frightened for some reason. Maybe she needs a higher dose of morphine.

If she doesn't eat or drink, she will eventually die. Some people lasted a few days, some a few weeks. That was it. My uncle lasted 11 days with no food or water.

I am sorry for your stressful situation.
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vanessa92 May 2023
She’s screamed “mama,” “hold me,” and “I’m falling.” When we changed her diaper yesterday it was extremely painful for her and there was no way we could touch her that didn’t hurt. I’m hoping a nurse comes out today to check on her. Someone was supposed to come out yesterday but no one did. I don’t want her to be in pain.
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At her age and with dementia, it is possible she is not interpreting her body's signals properly/accurately. I agree with others that if she's already on morphine, not sure what a diagnosis and more pain meds will do. I'm not saying this flippantly -- I get that this is very disturbing and you feel helpless.

Maybe consider having her assessed for hospice, since she sleeps so much already and the meds she's on don't seem to help anyway. Or, palliative care. But again... she's already on morphine (the "big gun" when it comes to pain relief). What more can they do except up her morphine dose? Then she'd be sleeping even more, if that's possible.

She may have vertigo, hence her feeling like she's falling, or being scared when she's moved. Been there, done that. There's no easy way to diagnose it in her, and no real therapy for someone in her situation. But it ususally causes nausea, so maybe that's why she's not eating and doesn't want to move or open her eyes (because she's spinning). For nausea I take Zofran. In her case, nothing would end the spinning if it is benign paroxysmal positional vertigo (BPPV). Just a thought.

Nerve pain (like neuropathy) is very tricky to treat. Sounds like she is already taking what would address it. Maybe people's hands are cold when they touch her and she is screaming as a reactioon. One cannot know. Being guided by her vitals is medically reasonable since she isn't a candidate for more extensive testing. May you receive peace in your heart on this journey. Sometimes there is no good solution, only a "least bad" option.
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vanessa92 May 2023
Hello, my grandma has been in hospice since October 2022. She has a hospice nurse who visits her once a week however I don’t have a lot of trust in her. My mom and grandfather (also 90 years old) are much better caregivers. Unfortunately the nurse who visits is the only nurse we have. She’s sent by the hospice agency through the hospital network. My grandma hit a CNA about two weeks into hospice and a CNA never came out again.

I hadn’t considered that my grandma might have vertigo. That’s a really good point. She won’t wake up to eat or drink anything at this point even though a week ago she was eating twice a day. Her condition declined so quickly it’s given me whiplash. She broke two bones last summer and was doing so poorly in the hospital that she was transferred to hospice at home. We thought she had weeks but but she improved greatly being at home. If anything hospice gave us more time with her and she has had the comfort of being at home. She had wild downturns at times but I’m grateful we got to be there for her.
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Do you have a Hospice Nurse to talk to ? Does she like soothing Music ? I Know my son Played Music for My Mom when she was on Life support . You Can Hold her Hand or Place a hand on her forehead . I dealt with my brother and it was 3 days But he was near the end and ready to go . Can a Chaplain come in - That is soothing . take care of yourself .
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This sounds very similar to my MIL who is in Hospice and being cared for 24/7 by my DH and his sister.

She's only one week into the 'barely eating/drinking' dynamic and amazingly, is still putting out a lot of urine, considering.

I don't think 12 oz of coffee and 2 T of Boost and 1/2 a hard boiled egg to be enough nourishment to sustain her for as long as she's been hanging on. (She's going on a month now, with that 'menu'.) I read that some people go MONTHS like this.

She's on Tramadol for pain, which I personally don't think is strong enough. Xanax and Lorazepam and her cholesterol meds (!) and that's it. She screams out in anger, which really may be displaced pain. IDK, I do not see her. She also sleeps about 22 hrs per day, but she can't get up or walk w/o help, so she's needing the 24/7 care.

She's home, but the sibs are having a mtg to (I hope) have her placed in a SNF or NH. I think she'll get better care and it will be less stressful for the kids, who are totally burned out. My DH has little compassion and is not cu out for CG. If this goes on for much longer, I worry about HIM having a stroke.

Sorry--I didn't really answer your question, but it seems like we hear a LOT of times that people are barely eating or drinking and still hanging on (miserably) for amazingly long times.
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Way2tired May 2023
Geez , mid. I think they can quit the cholesterol meds.
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Hospice care is about comfort and compassion at the end of a person’s life.

I would be quite disappointed in the hospice provider that your grandmother has.

My mother was on hospice and when she was nearing the end, their main concern was that she was comfortable.

I wouldn’t be concerned about her not eating. My mom didn’t eat or drink anything towards the end. Her mouth was kept moistened with a sponge.

I am so sorry that you aren’t receiving the best care from your hospice provider. Please reiterate your concerns with the hospice nurse. Or even switch to a different provider if you feel that is necessary.

Wishing you peace as you continue on with your caregiving journey.
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If she’s drunk nothing but a few drops of juice I’m shocked she’s still alive as it is. Usually around three days is the max without water.
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vanessa92 May 2023
My mom is shocked, too. She has wet her diaper even though she hasn’t drank anything and we can’t understand it.
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Hi Vanessa92,
I am so sorry that you have to go through this. It is such a hard thing to watch happen to someone that we love. Gosh you are very brave to be by her side during this difficult time. My mother was in the hospital and was refusing food and all fluids. I asked the doctor how long can a person in their eighties survive without food or water and he replied that because she is not using much energy at all to move around and luckily (?) did not have cancer or anything like that she could survive for many weeks even up to a few months on only a bite of food here and there ( like once a day or every other day) and a sip of water. He has seen elderly patients survive two months like that.

i am not sure if this is what is happening to your grandmother but people on morphine can hallucinate perhaps she is not in pain but is having some hallucinations that are making her cry out? Again my mother when she was in her sixties had abdominal surgery and for a few days the doctors had her on morphine. She used to be a nurse so knew that morphine can cause hallucinations so when she had a few she knew logically that what her brain thought it was seeing was not really there but she really felt the images were real. She was on the fourth floor and saw men walking around the window outside.

I am not sure if this helps at all but I hope you know you are doing what is best for your grandmother. You are blessing to her to be with her and therefor her during this time.

I hope you get the answers you need from the nurses the next time you see them.
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Our hospice person told us that without food or drink most people died within 14 days.
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