My 92 year old mother had a GI bleed on 11/20/2023. Doctors could not locate the source in the colon and after 12 units of blood gave mom an option of hospice or subtotal colectomy. She initially said “No surgery” but later changed her mind. She went in to shock post surgery but survived and now has an ileostomy. Mother has not been eating or drinking adequately and is depressed. She is emaciated, has a UTI and shows no interest in living. I was encouraged to talk to her and let her know that it was ok if her body was giving up. She said she wasn’t giving up and would do better. In the meantime, Mother is in subacute rehab facility to increase “strength and function”. Neither is occurring; I’m watching her starve, observing for skin breakdown and listening to her moan. I’m sad and angry. Has anyone experienced this?

It definitely sounds like it's time to bring hospice on board. In her mind she may not be giving up, but her body is telling her otherwise.
Not eating and drinking is all part of the dying process, as the digestive system is the first to shut down.
Hospice will keep her comfortable as she transitions from this life to the next. Please don't keep allowing these needless procedures or rehab to be done to a women who is dying. Just let her die in peace and comfort. Hospice will allow her to do just that.
Please call them today.(yes you can call them on a Sunday)
God bless you.
Helpful Answer (25)
Reply to funkygrandma59
ElizabethAR37 Jan 14, 2024
Totally agree!
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My uncle had a similar situation occur and did not thrive after surgery. Hospice was called in and he passed a few months later. I think offering such a huge surgery to such an old person is ludicrous, personally. They wind up even sicker afterward with more issues than they had beforehand. How very sad for both of you to be going through such a thing, my condolences.

I hope mother is on board to bring in hospice now. They will keep her comfortable and totally out of pain, with God's help.

Best of luck with a difficult situation.
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Reply to lealonnie1

I wish your mom had stuck with her decision to go on hospice. It must be hell for you and for her to go through this now. I hope your mother is at peace soon and has now decided to allow hospice to keep her comfortable.
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Reply to sp196902
AlvaDeer Jan 17, 2024
I so agree.
May I ask who you are angry at?
Grief counselors recognize that we often choose anger so as to avoid fear and grief. Fear and anger allows us not to go into grief, which has a hard finality.

I am sorry for your mother that she made this decision. I am an old retired RN. It is one I would not make. I in fact am looking now at a probable second bout with the big C. I beat 35 years ago. I am very clear in my own mind what I will and will not do in the next battle. A second mastectomy is fine. But no chemo and no radiation (the latter I refused the first time, too). To me, having seen much suffering at the end of life, death scares me very little. But suffering scares me very much and I think your Mom is looking as that in quantity of time left without quality.

Were I your mother I would now ask for hospice and I would do VSED which is "voluntary stopping eating and drinking" which is legal in almost every state of our union. I would go to my peace. We all die. To me it is unconscionable to ask our loved ones to stay suffering we we cannot recognize the inevitable. I hope you will honor your mother's wishes now to ease herself out.

It may (or may NOT ) be of interest to you that at exactly her age my father told me he wanted the "last long nap", that he (a WELL MAN) was happy with the life he had had, but exhausted with his current life, and ready to go. That he longed only for the peace of sleep. That it was very hard for him to "try" for my mom. My mom said later she wished she hasn't asked him to stay, that it was selfish to get him up on the scale, as him to eat when he had no appetite.

I have given you my own personal opinion.
Please speak honestly with your Mom and honor her wishes.
Do know that I heard many patients tell me at end of life they wanted to go/were ready to go, and could sadly not discuss this with their families because their families would not hear their truth. They were left discussing with their nurse, a stranger.

By the way, needing blood, and refusing it? One of the most peaceful deathes there is. A bit of shortness of breath only, and that fixed with morphine.
I am so sorry for your pain and the coming loss, for your mom's pain and travail, and I wish your entire family great peace and comfort and relief from pain.
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Reply to AlvaDeer
ElizabethAR37 Jan 14, 2024
As usual, I totally concur. I don't have your medical background, but I know for sure that I do NOT want to suffer at EOL. Religion is not an issue for me. VSED is on my future radar, as well (among other considerations, it's not as pricey or complicated as a trip to Switzerland). Ensuring the essential medical support in the absence of a diagnosed terminal illness can be problematic. (I'm WAY too old to be meeting my fentanyl dealer on a street corner at midnight! LOL.)
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My FIL just died on hospice. He was also wasting away , no appetite due to cachexia , triggered by worsening CHF and COPD. He thought he would get better too . He was not going to get better . He also had bad back and neck pain from spontaneous compression fractures of vertebra from osteoporosis . He was slowly dying for months. He got Covid and a few days later finally agreed to hospice to control pain . Covid killed him a few days later . Many older people avoid hospice . Find out what is making her moan and tell her that hospice will come and treat ( pain , anxiety, depression ) whatever it is . Get hospice to evaluate her . Sounds like life is too hard for her since this big surgery at her age .
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Reply to waytomisery

It sounds like her body's shutting down. Do you feel like there's a good quality of life and that it will improve over the next few months? If you don't see a reasonable chance of recovery it wouldn't hurt to talk with the hospice team and get their opinion, at least.
I think there's a big difference between allowing a person's body to progress naturally through shutting down and asking them if they want to give up. Not a criticism at all--I'm in a similar boat, and my mom is much the same with the eating and apathy, but if I ask her if she's 'done' she'll say 'no'. And that's fine. We can support whatever level of eating and functioning she's up for, but we're not going to artificially prolong things.
Helpful Answer (11)
Reply to ElizabethY
rsparksva Jan 17, 2024
Very similar situation with my 88-yr-old dad. Eating just a few bites of food every couple of days and sipping minimal amounts of liquids. Stopped taking meds a week ago but won't say concretely that he's done with them and with efforts to at least maintain at his current and prevent further decline. He finally agreed to let me call hospice and seek a referral from his PCP, if nothing else, so I will have support when the time comes. Certainly not trying to rush him. I believe he could benefit from their support and I know for sure I will.
My dad is 80. He was diagnosed with frontotemporal dementia 3 years ago. He was losing weight and getting extremely picky. Then about 3 months ago he was down to about 300 calories per day, and very little liquid. He was having all kinds of physical problems as well, and I was taking him to lots of Dr appointments. Then about 10 days ago he fell and hit his head and just wanted to lay in his bed with his arms folded across his shoulders, no pillow, just waiting for death. He would crawl to the bathroom about 2-3 times per day. I kept asking the drs for a hospice referral. Finally had to take him to the hospital where he stayed for 24 hours and was then discharged with adult failure to thrive. He has lost about 1/3 of his previous body weight (and was thin to begin with) He almost certainly has stage 4 cancer of some kind, poor kidney values, anemia, low blood pressure, etc. he is at home again and barely eating or drinking and very grumpy and uncooperative with the home health aides. I want to honor his wishes insofar as I can. Even though he has dementia, I feel like it’s his life and his wishes are of primary importance. He says he has no pain, had a good life, and just wants it to end. The grumpiness and demands are hard on the family though, and of course the waiting and wondering.

Best wishes to you.
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Reply to Suzy23
ChoppedLiver Jan 15, 2024
I feel for you and your Dad and all who have to watch this. The last few months of my Mom's life was pure torture for both her and I.
My mother didn’t want to eat when she got older and had challenging health issues. She didn’t even weigh 100 pounds. She completely lost her appetite.

I am grateful that my mom was agreeable to going on Hospice. It is the only sensible approach for people who are not going to get better.

People who live in these circumstances are tired of living. I would be too if I were in their shoes. What is the point of living longer if a person has no quality of life left?

I am sorry that your family is going through this situation. Wishing you and your mother peace.
Helpful Answer (11)
Reply to NeedHelpWithMom

I feel for you. I have experienced something similar.

The last 3 months were pure torture to both my Mom and I. For the last 3 years, she had been formally diagnosed with dementia and really bad arthritic pain in her lower back. The pain was controlled by Aleve (naproxen), Tylenol and CBD.

It started when she had sepsis. In the diagnosis for sepsis, they found a spot on her kidney. They couldn't diagnose the spot, because the chemicals for the dye in the contrast xray were too toxic for someone her age. It was recommended that we remove naproxen from her pain pill cocktail.

2 weeks out of the hospital, my Mom complained anytime someone touched her. When I touched her arm, that hurt. When I held her hand or transferred from wheelchair to car, that hurt. I reasoned that maybe she really did have cancer so we should try to remove the naproxen. We couldn't get a diagnosis of that "spot" as her dementia prevented her from getting an MRI (she would not lay on the MRI bed, nor stay still.)

Once we removed naproxen, we were never able to manage the pain again. We even tried oxycontin. She no longer cried out in pain when someone touched her. However, the pain in her back (what the pain pill cocktail was controlling) was so bad that she began to not want to eat (everything taste terrible), drink (taste of water was terrible). Cookies and fruit and juice all tasted bad. It accelerated the dementia as she couldn't remember how to take pills. She could no longer stand up because it hurt too much to move, much the less to balance. She no longer knew how to use a fork; she ate with her hands, however, chewing was very hard so she spit out most of the food she took into her mouth. She started to become combative and call out at night (she didn't remember calling out). The only good thing about the removal of naproxen was that the edema in her legs went away in about 2 days.

We had previously changed her POLST and Medical Directive to "do not resuscitate" and "no artificial nutrition". We had heard horror stories of CPR breaking bones and we knew that she didn't want to live. She really hadn't wanted to live for the last year.

She finally got bad enough that I ordered hospice/palliative care. They took her off everything (with my approval), vitamins and pain pills and gave her morphine. The morphine killed whatever appetite or thirst she had (but not the arthritic pain) and she passed a little over 2 weeks later.

I was relieved that she was no longer suffering. It was a horrible last few months. The worst part about it is that I would not have been able to get diagnosis that would have allowed assisted suicide since I could not say she would die within 6 months.

Horrible, horrible last few months. Someday, I hope we can figure out a way to not go through this horrible torture, especially if it involves the later stages of dementia.
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Reply to ChoppedLiver
sp196902 Jan 17, 2024
Why would they tell you to remove the naproxen because she had a spot on her kidney? Did they think the naproxen caused the spot or was it so they could do further testing? I also wonder why reintroducing the naproxen did not get her pain back under control.

"Someday, I hope we can figure out a way to not go through this horrible torture, especially if it involves the later stages of dementia." I think the only way is to ask a lot of questions and to sometimes ignore the advice of medical professionals. It seems that might be the only solution to prevent people from suffering more.
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I’m also so sorry everyone is going through this. I’m there too, with my 85 your old. Dementia Bedridden. I believe it’s cruel and wish I could give her something for her to go to sleep and rest in peace.
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Reply to Di1961

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