Input requested for oxygen use on very late stage dementia

Vitruvius

My DW has been in Stage 7f for about a year. She is minimally conscious and I am told that her cognition at this point consists mainly of core brain stem functions, her only obvious action is a primitive feeding response. She makes no other movements or responses to any outside activity. She has been starting to exhibit signs of aspiration and now anything she eats or drinks must be thickened to the consistency of honey, but no more.

Last week my DW started to exhibit very purple hands and toes. Hospice has determined she needs to begin receiving oxygen continuously. They described this as something to provide her with comfort, not rehabilitation in any way.

I am interested in any insight from anyone who’s LO received oxygen solely for very, very late stage dementia. I know at my DW’s MCF a there are a few are receiving oxygen but for other comorbidities not solely for dementia related decline. Those individuals are obviously ill with whatever condition they are receiving the oxygen for, but they are not someone in Stage 7f with no other comorbidities. 

Is this needlessly extending her abject misery, or is it truly providing end stage comfort care? Any comments are welcome. 

MaryMN

When my mother was on hospice (dementia but also congestive heart failure), we were told that once her oxygen level dropped below 90% she would be unaware of what was happening. She might have been able to answer a question, but wouldn't remember it 30 seconds later.  At that point, they would discontinue the oxygen because her body wouldn't be able to make use of it. This would not cause her any pain or shorten her life.

If the lack of oxygen would not cause pain, I'm personally not sure why you would want to extend the life of somebody in her condition, but only you can decide what is right for your circumstances. There is no wrong answer. God bless.

Rick4407

Vitruvius you and I have both been here a long time. I've watched two wives die. I'm 78 now and at the point where I can review my decisions in retrospect. My fundamental decision about life has been and continues to be the important thing is quality of life not quantity of life. I've made that decision actively with my first wife and passively with my second. It was an incredibly difficult decision but the right decision. Hard times. I wish you peace with your choice. Rick

Karen711

Vitruvius- when my father was on hospice with Alzheimer’s his hands turned purple and very cold. The hospice nurse was sitting with me and explained this was a sign of the body shutting down and that it wouldn’t be long before he passed. She was right, he died a few hours later. I don’t know if your DW is in the same situation, I just know how hard it is no matter what. Could you possible get a second opinion from another hospice colleague? Sending you a heartfelt hug 💜

JulietteBee

Speaking in the capacity of a nursing instructor, former hospice RN, the oxygen will not prolong her life.

It actually makes the dying process less jarring on the eyes of the observer and less traumatic to the person experiencing it.

I am so truly sorry.💔

SDianeL

I would discuss it further with hospice. They usually use low flow oxygen for comfort but not enough to prolong life. So sorry you are at this point. May she have a peaceful passing. 🙏💜

Kat63

My experience is with my mom and at the very end of her life the nursing home nurse said she was having trouble breathing and wanted to put oxygen on her. I said I didn’t know that I wanted that, as I didn’t want to prolong her dying process. He told me it would be difficult to watch her struggle for each breath. So I let them put the oxygen on her and it did not prolong anything. She died a few hours later. Ask why they are putting oxygen on her and then make the decision you feel is best.

harshedbuzz

I am sorry you are at this point and having to consider such questions.

IME, oxygen by nasal canula is a comfort measure for her and also for you at bedside at end of life.

HB

cdgbdr

I agree with others here. And, as a nurse as well, the oxygen is a comfort measure. It will not prolong life or suffering. I am so sorry this is where you both are at this time.

midge333

@Vitruvius : I think the oxygen will do little to provide comfort. If she is in pain/distress, they should treat it with narcotics/sedatives. For both of your sakes, I hope she dies quickly and painlessly.

JeriLynn66

Retired Hospice RN here to second JulietteBee. The oxygen will not prolong life but can and may provide comfort along with medication as needed for any agitation. Peace be with you and your dear wife.

Chance Rider

@Vitruvius i have no experience on which to offer advice and can only express my hope that when her passing comes it’s peaceful for both of you. 💜

sandwichone123

When my mom was dying she would pull off the oxygen cannula so we stopped it.

GothicGremlin

I'm so sorry @Vitruvius

Like some of the others, hospice gave my sister oxygen, and it didn't prolong her life at all. It just made her more peaceful.

Beachfan

Vitruvius,

I am so sorry to hear that you are still in such a state of Limbo after so many years of caregiving for your DW. My DH was placed on oxygen by Hospice as a comfort measure as he transitioned. It was a gentle and calm passing; I slept by his MC bedside for his final 3 nights. I have a vivid recollection of how noisy the machine seemed at such an otherwise quiet time; and how thunderous was the quiet when the machine was finally turned off. Praying for you both. 🙏🏻