I take care of my 84 year old grandmother. 2 years since it got bad, but she has lived with me for 5+. She has dementia, a type of blood cancer and requires blood transfusions (2+ units) every 2-3 weeks. We have good days, but quality of life is poor. She feels bad alot. She cries when I tell her she has to go to the hospital and says it's time for her to die on a regular basis. More days than not. She cries alot just worried she is a burden. With the dementia she is not the same person I grew up with and is totally dependent. In lucid moments she still tells me she doesn't want that (of her own accord), but won't accept that that's what she is - dependent.

This week I didn't take her to chemo. I just took her to the hospital for more blood (hgb 5!). I think if she was herself, she would want to end this. She has said it many times over the last 6 months, but of course forgets within minutes. When she is super low I give her anxiety meds. But have to lie to her bc she doesnt want to take them.

I am tired. She is tired. If I decide for her, NO MORE treatment, is that murder? Will the guilt destroy me?

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My mother died a month ago at age 93. She was a nurse and had told me repeatedly that she did not want to be put on life support. She had a DNR, Living Will, and I had her MPOA. She had been declining into dementia for several years and after being hospitalized with pneumonia (and put on a respirator for a week) in March had taken a steep dive mentally.

Mom lived 9 months being safe in MC she finally contracted Covid, 2 days later she was in the hospital. I spoke to her doctor and asked him bluntly what her survival prospects were. He told me he doubted she could survive.

So I discussed it with my siblings and I made the decision to stop treatment except for palliative care. The doctor agreed. I told him I would rather they use the ICU bed for a Covid patient who had a better chance of surviving. Mom lived another week before loosing the battle.

Yes, they could have put her on a respirator and kept her alive but at what physical cost? And if she did survive what would her mental state have been? That much sedation if very bad for the elderly and she would probably have been confined to a bed in SNC. That's not much of a life.

Yes, I still have moments of doubt about the decisions. But then I think about what I would want if it was me in that situation. I hope and pray that my family will do the same for me.
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babziellia Jan 2021
I'm sorry for your loss of your mom. Even with preplanning, it's never easy. I just want to say to you that in your moments of doubt remember that you knew what your mom said to you - no LS - and you honored her final wishes. You are a good daughter.
God's peace to you.
Have her evaluated for Hospice, they can explain a lot about end of life decisions.
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No, it's not murder. You don't decide for her, you only carry out her wishes as she told you when she was lucid. She is very tired and she wants done. What modern medical interventions are doing now is not extending her life, but prolonging her death.

Yes, you should contact hospice. They will keep her as comfortable as possible to the end.
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I don't mean to be harsh, but I wonder why the doctors would give an 84-year-old with dementia harsh chemo treatments.

Why make someone suffer by prolonging the inevitable?
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NYDaughterInLaw Jan 2021
Because it generates money. Some doctors have heads for medicine and hearts for money. And many doctors treat Medicare as a cash cow. Doctors at hospitals often are not as comfortable with ending life-saving treatments - regardless of how aggressive - and transitioning the patient and family to comfort care. My friend's mother's ICU doctor told her he "doesn't believe in hospice"!
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If your haemoglobin was at 5, you'd wish you were dead too. Poor lady. Imagine the tiredest you have ever been in your entire life and quadruple it, or more - that's an approximation of how she may be feeling.

What type of physician is currently leading her medical care? - an oncologist or haematologist? In any case, if I were you I would sit down with them (virtually if need be, in these straitened times) and ask them to go with you through the quality of life vs length of life discussion.

There will come a point where treatment is nothing more than pointless torment for your grandmother, and withdrawing it is not murder but ethical, humane common sense. We can't possibly guess whether she is there yet - of course we can't - but her lead physician ought to be able and willing to guide you. If not, if you can't get any help or any sensible answers from that quarter, then try to get hold of a geriatrician or elder care physician and ask for a review of your grandmother's medical history and treatment plan.

This decision will eventually have to be yours to take, if your grandmother is no longer able to make it for herself; but that doesn't mean you have to reach it alone.

When you have all the information you need, so that you can answer your grandmother's questions, that will then be a good time to have the conversation with her. It will begin something like "if we were to stop all treatment except for making you comfortable, how do you think you would feel about that idea?" There is a big difference between a person expressing how dreadfully ill she feels and how guilty about your workload, and helping that person to think through her later life and end of life wishes.
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babziellia Jan 2021
Spot on!
My dad passed earlier this week. He was 91 and his quality of life wasn't great. He could barely walk (arthritis) and was very hard of hearing. He didn't have much interest in doing anything anymore except going out of his apartment once or twice a day to smoke. He ended up in the hospital with sepsis from a UTI , then rehab, and I think he just gave up. He wouldn't work with PT to regain strength and just wanted to sleep. He refused most meals and I think he was just ready to go. He knew what he wanted and it sounds like your grandmother does too. I am now going over and over in my head, what could I have done differently? Could I have found a way to keep him in his home of 51 years (no-it wasn't safe). Should I have pushed him harder to do PT? So I understand your question about the guilt. If her quality of life is poor, she may be ready. Listen to her. Let her lead the way.
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NobodyGetsIt Jan 2021
Dear "Sharon40az,"

I'm so sorry to read that your 91 year old dad passed away earlier this week as well as you wondering if you could have done anything differently.

Although my mom is almost 96, I too have wondered if I should have pushed her harder to do PT. They are trying it again for the third time.

It's always difficult to see our loved ones not only decline, but realizing their quality of life has gone down to "zero." Countless times, I just keep hearing people say they are "tired" and they are.

May God give you peace in your grief.
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PoPolarBear said it so aptly:  Treatment at this stage means postponing death and not necessarily prolonging life; Worse, what the situation is prolonging is suffering - whether it be physical, familial or spiritual.

Treatment is not going to give her (or you) the life she once had/or allow her to be the person she once was.

As a social worker, I want to say this:  You might be feeling both guilt AND grief. Easy to confuse/interchange the two because they are both such intense feelings. Don't confuse the two.  When you feel guilty, allow your thoughts to also revisit the times she said she didn't want to be a burden. When you follow her true wishes, you are not murdering her, you are honoring her.

As a daughter who had my own mom with Parkinsons and Dementia at my home for 5 years and had to transfer her to a hospice facility for 24 hr care, I understand the guilt, regret and confusion. I suffered every day until I realized my torment wasn't about if I was doing the right thing for her, but that I was already missing her and she wasn't even "gone" yet physically. It is normal to feel grief as we prepare unwillingly to say goodbye while we are trying to respect their wishes.

Lastly, In the end, your faith night comfort you that you really aren't omnipotent and only God can comfort her and love her unconditionally. You are not held accountable to a standard higher than God. Your intentions are what count. Focus on loving her whatever the day brings.

If any of this strikes a chord, think about talking further with hospice staff, a social worker/nurse where she goes for treatment, or  a clergy person.  YOU ARE OK - you are not crazy and you are not a murderer. You are a loving grand daughter who stepped up to help. So many of us support you!
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Nobody can answer if YOU would feel guilty. Only you can know that.

Me *personally*, I would feel guilty FOR continuing treatment for a 84 year old with dementia. I'm 50 and already have orders written against medical help/intervention to prolong life when I am no longer of sound mind.
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My Granny had Chronic Leukemia. She was told when diagnosed that without treatment she had about 10 years. In the last year or so she agreed to a few blood transfusions when her wbc was out of control.

Granny did not have dementia and was lucid until 3 days prior to her death at age 82, actually her 83rd birthday. I was with her every day the last 5 days when she was in in ICU.

Our family fully respected Granny's wishes to not have invasive treatment. 3 days before she died she lost consciousness. She was given oxygen and IV fluids to keep her comfortable. Sadly she bruised incredibly easily and her face was terribly bruised by the O2 mask. I was worried that would be my last memory of her, but it was not, I can barely recollect how she looked, my memories are of happier times.

Have you talked to Hospice? They can help you negotiate the process of dying.

And no, it is not murder to stop treatment. Your Grandmother will not be cured, any treatment is prolonging her dying process.

She has told you she is ready to go. There is no need to feel guilt.
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I remember playing a board game with my FIL & the kids. After a while he asked did I mind if he stopped now? He said the game was lovely & he enjoyed it but he was now very tired. I said of course he could stop now. The kids would always remember playing.

It was a lovely moment.
He stopped his chemo treatment soon after. The pall team were a wonderful support.

I agree to contact Hospice for a chat. To discuss Gma's values as you know them.
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