"Mom is a fighter" Last stages of CHF. Fighting for what?

My father died from CHF after a lot of years of suffering with it. He very much wanted to go, yet there was fight. I think it’s intrinsic in most humans to fight for life even when they know it’s not what they want anymore. We all fight for breathe, it’s part of life. I wish you and you mother both peace

Thank you all for your thoughtful comments and concern. I somehow knew there would be experience and wisdom offered here in this forum.
To be clear, hospice is not the obstacle to the use of comfort meds, but rather, disputes within the family with regard to necessity, efficacy, duration of effects, and even understanding the presenting symptoms.
Mom had a surprising and disturbing reaction in the hospital to Ativan - a dose we deemed necessary at the time to complete an MRI (to rule out stroke). She was unable to form words in English for about three days, muttering unintelligible phrases, and manifesting mild hallucinations.
When she was finally released, we engaged a highly reputable hospice team. Mom was given Ativan on the second day back (in the Al facility) and slept for ten hours. This alarmed some members of the family who insisted: "Hospice drugged our mother." or "She was comatose", and even "They overdosed our mother."
Long story short, we have family members now who are adamantly opposed to re-introducing Ativan (even in halved or quartered doses). Having suffered from Asthma attacks in the past, I can tell you, fighting to breathe is a cause of great anxiety, yet this is again disputed.
The alternative to Ativan that has been suggested is Haldal, a guaranteed sedative in lower doses (also given for psychosis in much larger doses). They seem to have good reasons (possible nausea, drug interactions, etc.) for not considering Klonopin or Valium as alternatives.
Her need for comfort meds will only increase as her condition continues to deteriorate. Eventually, all will see their necessity. In the meantime, the thought of ANY needless suffering at this point is vexing to the core. We'll get there, but wow, who knew every dimension of this process would be so fraught with emotional peril?
Once again, thanks for sharing the benefits of your (very) personal experience and well-considered thoughts on the subject. Happy New Year to you all!

Yes it’s the body that finds it hard to stop working. Attitudes to it often don’t help. My MIL died aged 99 years and 9 months, and several people’s reaction was ‘what a pity she didn’t make it to 100’. Really? Pity for whom? Especially from ‘right to lifers’ who insist that life begins at conception, or cultures that say it begins at quickening (when the mother feels the movement), so that MIL had well and truly passed 100 by either reckoning.

Some people have always found it hard to believe in a New Testament afterlife, and the current wisdom about it is not all that Biblicaly consistent. Eternal hellfire is out of fashion. Bodily resurrection of 140,000 chosen people, even choirs of angels, don’t often get mentioned. Washing away of all sins doesn’t seem too appealing when you think of Hitler or Ghengis Khan – who wants to meet them anyway? Moving towards a light has some medical support, but most people’s ‘faith’ is consolingly vague.

My mother asked me what I thought 3 days before she died. I said that I’d heard Aboriginal beliefs that the spirit of the deceased was present with loved ones soon after death, could return from time to time later on, but eventually drifted off to be part of the Universe. That’s pretty much the way it has felt for me. I think we both found it consoling, perhaps you can too.

Your Mom is at peace with leaving and has expressed that to you. She is not fighting the inevitable. Her BODY is. This is a system made to last, and it will fight to do so.
I am so sorry. Please speak with hospice re your own and your mother's feelings. I am glad she shared with you. As a nurse I saw so many who felt they could not share this with family, so told ME, the nurse.
I am amazed she is receiving the morphine sparingly? If that per hospice choice, or family. To allow someone to suffer breathlessness to the extent their respirations are 40 is truly torment. Usually Hospice doesn't recommend this be allowed to occur. I would speak with them. They will tell you that administration of more may hasten her death, but I doubt more than by hours or several days.
The body is what fights to go on. Unfortunately LONG after most elders are ready for peace and rest. My father shared his feelings with me as well; I felt priviledged. I wish you good luck, and peach for your Mom. PLEASE make it clear to hospice that she should not have to be fighting for each breath now.

I'll tell you why my soon to be 94 year old mother is fighting so hard and clinging to life. Because she is petrified to die. She has no faith that life goes on, that there is more to life than what is here in the physical world, and that once she's dead, that's it. She tells me how she 'wants to die', I hear it all the time, but then says she doesn't want the Covid vaccine b/c it 'may kill her.' She has a wart on her knuckle that she's fought tooth and nail to have removed, about 20x, over the past 3-4 years, because she insists it's going to kill her.

I'm not making fun of her or the fact that she's petrified to die. I'm just telling you why I think my mother is fighting SO hard NOT to die, at nearly 94, with dementia, very painful neuropathy, insomnia, and lots of other conditions that make her life very difficult.

The human spirit is very, very strong. Especially when it's clinging to life out of fear.

The other reason a person can cling to life is because they haven't been told by their family it's okay TO leave the world and go onto the next phase of their journey.

The siblings need to STOP the disagreements about comfort care for your mother. The purpose of 'comfort care' is to provide comfort for her in the final leg of her journey. She may know there is discord among you and that can keep her here even longer. What you need to do is all band together as a family, go into your mother's room, tell her you love her and that you'll all be fine once she leaves, and that it's okay TO leave for the next leg of her journey.

Many, many, many people are unable to leave the physical world until they feel it's okay with their families to do so, and that their loved ones will be okay once they're gone. So if your mother feels that you're all arguing and disagreeing, she's not comfortable leaving yet. Your father, especially, needs to tell his wife he'll be okay once she's gone and that it's okay FOR her to go. That can be tough, but he's doing it for HER sake, not HIS sake.

Some think that way of thinking is hogwash. Hospice told me my father was hanging on for dear life because we were all in the room with him and he would NOT let go until we left the room. I gathered everyone up and took them to dinner. I told them all to go downstairs & get in the car while I hung around in the hall; poked my head into his room and not 5 minutes later, I heard his labored breathing begin. I was floored. He passed away about 8 hours later. Hospice was right.

Sending you a hug and a prayer for peace during a difficult time.

I have often wondered, myself, why the 'fight' so hard to stay alive--and one time had a conversation with a man who was very religious and actually at one time, our 'pastor' for lack of a better description.

We had a member of our 'flock' who was terminally ill, yet was doing everything in his power to stay alive. Our religious beliefs are that death is but a 'step into the next life'. We don't cease to exist, just our spirits separate from our bodies and move to the next world. Very peaceful and actually, very beautiful. No more pain, no more the trials of this very challenging and difficult life. I asked this 'pastor' why he thought this man was fighting so hard to stay alive--when there was no way he was going to live much longer--and the answer was "Even with our fast held beliefs in an afterlife, there is in all of us a spark of 'what if THIS is all there is?' What IF there isn't anything beyond this. That's the humanness in all of us."

I've often thought of that discussion over the years. Since then I have been close to quite a few people who were actively dying and their EOL runs the gamut.

Some people are so grateful to 'go'. I know daddy was. Since today is the 17th anniversary of his death, I am thinking of him. His last day on earth was beautiful and peaceful. When his loved ones on the other side came to get him--what a tender moment.

A sweet young friend died, leaving behind 3 young sons and her husband. Her last words to her family were "Oh, it's so BEAUTIFUL!! It's so amazing! The LIGHT is incredible". Her family encouraged her to go to the light and she went...again a sweet and emotional moment. (And this woman had fought SO HARD for SO LONG to stay with her kids--but when she was done, she was done)

Death is a very, very personal experience. Some embrace it with joy, others fight it back as the final enemy.

I've seen this happen before with family members. A lot of the fighting and hanging on isn't for themselves, it's for the one they're leaving.

Sometimes telling the person that it's okay to go, that everyone will be fine, helps with their leaving. Whether you think they can hear you or not. They need that reassurance that their loved ones will be okay.

Dear theo, your three questions are quite profund. I don't know what people fight for in there final moments, or what their caregivers think they're fighting for. Maybe it's just for a dignified death.

My husband too was a "fighter". He left his dysfunctional home at the age of 16, put himself through college, had a massive stroke at the age of 48(where he flat lined 3 times during his stay in the hospital), fought his hardest to come back from that, developed more health issues than you can imagine, always trying to overcome them, ended up with aspiration pneumonia in Nov. 2018, where I was told he wouldn't make it through the night(and he did), developed sepsis and septic shock while in the hospital and again I was told he only had 2 days left to live, so took him to the hospice home for him to die(Dec. 2018), and after 5 days they sent him home, because he wasn't dying. He remained completely bedridden and under hospice care in our home, where he continued to fight for the last 22 months of his life. Even during his 6 week dying process, where he didn't eat for 41 days or drink for over 25 days, his body seemed to still be in that "fight" mode, until finally on Sept. 14th of this year his fight was over. Even his hospice nurses, who knew what a fighter he was, were amazed at how long he actually did fight at the end. They told me he had broke their record for someone surviving without food.

So while I believe some people are more of a fighter than others, your mom definitely sounds like she's in the "fighter" category. I know that with my husband I came to admire that quality in him, and wouldn't of wanted him any other way. I think we can learn a lot from "fighters" and when this journey is over with your mom, you can look back at her life and truly appreciate the "fighter" she was. Wishing you peace as you continue in your care with your "fighter" mom.

My mom was a fighter too, she fought right to her very last breath. You know that poem "do not go gentle into that good night"? I hated it, a gentle exit is what all of us who watch our terminally ill loved one long for.
I used to come home to help my mother every weekend after she lost her vision due to macular degeneration and became housebound and since she had been in fragile health years before that I always wondered if this was the last weekend we'd have together. When her health took a turn for the worse she willingly signed a DNR, there was no question that she didn't want any heroic measures. As I watched the slow decline into physical and mental dependence I often wondered what kept her going, especially after she entered palliative care and all of those life extending medications that I thought had been keeping her alive were discontinued. Her last days were spent in a nursing home, she could barely see, could barely hear, literally could barely move, was mostly confused - and yet her pastor cheerfully offered prayers that she reach her 100th birthday. When the end finally came she had a rally and staff at the NH gave absolutely no indication that they also suspected what I suspected.... if I hadn't educated myself on end of life signs I would have been blindsided. When she crashed and was moved to the "serenity room" (a private room for the actively dying) the next morning I had an RN express her surprise to me, this despite the fact mom had been diagnosed with pneumonia the day before. I don't know if people think they are shielding us when they speak that way or they are being deliberately obtuse or what.