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?
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.
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.
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.
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.
https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/For+Professionals/For+Professionals/Quick+Consults/Symptoms/Can+you+provide+some+guidance+about+oral+nutrition+at+the+end+of+life_.aspx
I agree with the others, it is time for hospice care.
So Hospice does not mean "EOL" for us. It's palliative care, really, and MIL eats >400 calories a day and drinks about 20 oz of fluid and is still around. Not well and looks like a cadaver, but it very much alive.
It is amazing what the human spirit can overcome to stay alive. we have all been truly amazed and befuddled at the same time.
At least MIL is pretty comfortable with the meds which keep her calm. But, death is NOT imminent and the Hospice RN says MIL will probably live another year.
I'm glad she has chosen Hospice. This is much easier on her kids, whom she has appointed her primary CG's.
IMO, hospice/palliative care is easier on EVERYONE involved, definitely including the patient! As I've noted before, I have set forth clearly in writing that this will be my choice at EOL, but at the same time I recognize that it may not work out that way. If my husband predeceases me, Switzerland will be on the table if I am not eligible for MAiD or cannot obtain medical support for VSED and can still travel.
Best wishes to you.
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.
"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.
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.
Wishing you strength during this time.
Look "Letting Go" up on the Internet, there are many offerings of wisdom.
I'd recommend: Get / give her massages. Gentle - wherever or however she enjoys. Head / scalp massages are good as most people never get these and they are relaxing. Feet are good.
The feet, hands, ears reflex to the entire body. I am a massage therapist.
In essence, shift the attention to 'trying' to keep her alive to giving her comfort.
Play her favorite music. Try scents if she still enjoy aromas. My sister loves ROSE. I love lavender.
As you can, consider smoothies, if full of bananas and cream / ice cream.
You can add (as I do in mine): collogen, green powder, protein powder, fruit / jam or even CHOCOLATE / syrup or caramel syrup, wheat grass. There are almost endless supplements in health food / Whole Food stores.
The key is her enjoyment. Sipping through a straw may be more ... inviting for her.
Personally, I would try to keep her alive; I would focus on the quality of the moment - being present with her.
Reading below, if she isn't in Hospice, get it set up.
While they may require her consent, do what you can (with MD authorizations - I recall / believe they can set up w/o client's permission (I went through this). It will help you to help her due to the extra care. She doesn't have to be diagnosed terminal to qualify for Hospice. Blessings to you,
Gena / Touch Matters
People in the condition the OP's mother is should never be getting messages. It's dangerous.
Of course she should be receiving excellent skin care daily though to prevent breakdown and pressure sores.
Let me ask you a question though. Why would you want to keep a 92 year old alive who is in pain and suffering? What quality of life does a person like that have?
You know I worked for hospice at home for a long time. I saw a lot of families who wanted to keep their loved one alive at any cost. They couldn't accept that everyone is mortal and we all will die at some point. Keeping a sick, elderly person alive is for the family, not them. What kind of life does a sick 92 year old have really?
He always said he wasn't giving up, but that was for his parents and everyone else. It was his time and he knew it.
Your mother probably does too. She's 92 years old and has serious health issues. If she's in hospice care they should be managing her pain and anxiety if she's suffering from it.
Spend time with her. If she asks for a drink or something, bring it in. Maybe she'll take a couple bites of it or will drink a little.
Take things one day at a time with your mother and don't have expectations. If she's having a "good" day take it as a win and enjoy it with her. I think this is about as best as you can hope for now.
However, after almost a YEAR of my MIL's decision to enter Hospice, she stopped eating. She has subsisted on >400 calories a day and she is still here, kicking up a fuss and causing incredible anxiety for the whole family.
She's not healthy, by any means, but evidently, you can subsist on a 'starvation diet' for a very long time. She also only drinks about 24 oz of water (in coffee & diet coke) throughout the day.
While there will be a pretty rapid weight loss in the beginning of this, in her case it seems she's plateaued off to a weight that she maintains somehow on barely any food.
Nobody pushes her to eat or drink. I imagine somedays she only has a Boost and that's it.