I have fought my mother, her doctors, her insurance companies, pharmacists, etc., trying to find help for her. She acknowledges that she would not be alive except for what I have done. But she still resists suggestions, finds reasons not to try different courses of treatment, complains about her life, says she cannot go on, etc. I have told her I will try to help her as long as she wants to live. Many times she has said she wants to die. But then she will flip and act like she wants to live, even though she has always said she would not want to live if she could not have a quality of life that I know she will never be able to have. Sometimes I think she would be better off to say, okay, I'm ready to go and seek help to just make her comfortable untl the end. But how do I help her make a decision like that without saying, "Enough already, just give up and die".
Where’s the compassion missing by so many on this site .
I understand it’s a daunting experience but try get some help for
her and for yourselves !
use the inheritance !!! You can’t have
it both ways …
you may not be the best person to look after LO .
hope you’re not thought of like that when your turn !
why would doctor suggest feeding tube ??? Unless she can’t swallow???
that would increase her misery ???
sounds like she needs better care
He asked one of the hospice nurses, in a raw moment as we were moving here there, "how do you do this? how do you watch people die?"
And the nurse said, "after a career of telling patients no, you can't have that, no you can't eat that, even if they were dying, now I get to give my patients whatever they want. I get to make them happy."
Can you take a day or two to step back and rest? Take a bit of time for yourself to process everything? You must be exhausted.
And there is so much pressure (on you) in helping her make actual life and death decisions. At some point she will not keep surviving and you should be proud of all that you’ve done to extend her life. I write this because you never should feel guilty when there is a point (that although you are doing your best) it becomes impossible under all circumstances for her to survive.
And it is not surprising that she keeps “changing her mind” about end of life wishes. Without the context of being in that crisis, none of us know what we would really pick until it happens. And we might change our mind too.
I understand you have whiplash from this terrifying rollercoaster. I’m sorry.
Thinking of you.
Make one more call -- to her doctor for a reference for hospice. Life gets much calmer for everyone when everyone stops trying to make the patient get "better." Hospice focuses on improving quality of life, not quantity.
Mom is tired, feels lousy, and is over it all. She's also scared of the other option. That's all OK, so that's when hospice helps her live (and die) as her body wants to while controlling pain. No more trips to the doctor or the hospital -- the hospice nurses come to her.
Also, getting off a lot of those meds can make a world of difference in Mom's comfort. Hospice won't take her off everything, but sometimes there are just too many meds getting in each other's way. My mother had terrible edema in her legs and was on diuretics for seven years with little effect except endless trips to the bathroom. We took her off them, and her legs returned to normal within days. I know that had she known, my mother, a former model, would have been thrilled to die with slim ankles once again. :-)
We also discontinued her BP meds with no effect. That told us that all those meds that were keeping her going really weren't doing anything anyway. She died about three weeks after we discontinued her meds, but she'd been on hospice for seven months. We didn't withdraw the meds until it was clear they weren't working at all and Mom was merely existing. She had Covid while on hospice -- and recovered -- but just having made the decision that we weren't going to the hospital anymore somehow made it easier to deal with.
Hospice is an absolute godsend, and you should look into it.
Second, my mother was like this, too, calling me "I just want to die." In and out of hospitals, this crisis or that one. I am 1K miles away. She would call, I would jump on a plane. After years of this, I realized I can't FIX this. She is now in AL, and is well cared for. But my personal revelation was when I understood that I can't FIX this. I am not the FIXER. It is my responsibility to make sure she is well cared for, safe, etc. In AL, she is now on hospice and is receiving more attention and provisions than the AL can supply, and more medical attention than her HMO is willing to give her. Hospice has their own doctors, and even supply some medicines. (Ask hospice about feeding tubes.) I once tried to cancel hospice services because I misunderstood what their mission is, but then agreed to keep them, and I'm so glad I did! They have also given me peace of mind knowing they are there. I encourage you to find a recommended hospice service in your area and at least interview them. Your mother more than qualifies for it and it's paid through Medicare.
I wish you, my fellow caregiver, peace.
Compassionate listening and loving is really hard when we are stressed, and emotionally charged with that cortisol coursing through us.
Try to take a deep breath, and just listen, touch or hold hands gently, tell them you love them, understand how hard this life is.
Pray for God's wisdom and comfort.
I am currently struggling with this very thing. Yesterday I yelled at my sweet mom. Then we cried and cried... It's all so so difficult and painful. I am praying for you ..
First, read up on the difference between palliative care and hospice:
https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care
https://www.cms.gov/Medicare-Medicaid-Coordination/Fraud-Prevention/Medicaid-Integrity-Education/Downloads/infograph-PalliativeCare-[June-2015].pdf
https://connect.mayoclinic.org/blog/take-charge-healthy-aging/newsfeed-post/paliative-care-vs-hospice-care-whats-the-difference/
Then I would talk to her PCP, telling them that with your mother's conflicting wishes you feel like it might be beneficial for you and your mom to talk with palliative care and determine what your mom feels would be a good quality of life for her in her current state of health. They will help and support you both.
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