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.
When my mother was on hospice, her nurse told me that morphine only works for a couple of hours anyway and really just helps her sleep. She wasn't in any pain that needed morphine, so they just gave her a dose every couple of hours and she'd doze off until it wore off.
I think you should ask the nurse to administer her meds the way they did with my dad, or do it yourself if you have the comfort kit. I would think keeping the morphine going consistently is better for someone actually in pain than to have the roller coaster effect.
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.
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.
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.
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
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.
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.
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.
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.