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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".

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I finally told my mom “if you really want to die lets stop all meds!! That is why you are alive..nonstop doctor visits and the pills they gave you”. “You decide”. I learned from my counselor my job is NOT to try to make her happy. That is impossible. I chose a lovely assisted living situation for her. Attention all day long. When I hear complaints I repeat..”we can call your doctor and stop the meds…your choice”. They just want us to feel sorry for their old age..I remind my mom I am 70 and getting old myself! She is 88yr old. Good Luck! Tough job we have..
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Helenn Oct 2021
So that’s abit harsh !!!
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
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I took my mother at her word, and found her a hospice, and as difficult as that week was, it was the best decision I ever made. She died in peace, and without pain, and it was a place where her young grandchildren felt comfortable being and spending time with her in her last days. While I am struggling with caring for my Dad now I know exactly what he wants when this time comes because he told me afterwards it was exactly what we did for Mom.
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."
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I understand completely how your mother feels - sounds like me. I have the mind and motivations of someone 30 and at nearly 88, I do the impossible (even though I can't walk). I still work two jobs (51 years and 15 as a Power of Attorney), have tons of hobbies, handle 100% of my affairs. I do the impossible ignoring pain, time, frustration to keep my self-respect which is based on me being able to do what normal people do. The word can't is not allowed in my dictionary if I want a life of even the simplest level. But I get so angry and frustrated when I am constantly impacted by all kinds of problems, some quite major, that should not happen but do and I just want to give up - but I have my kitty so I can't. There is nothing you can do except listen - understand and be kind. Don't try to convince her this way or that way - won't help her. Try to understand - she is not normal, she has severe problems and it is impacting her life and making her miserable and yet she has what most humans want - the will to live. Just be quiet and listen and love her. It will end soon enough
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I understand that you have been through a lot.

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.
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Learn2Cope Oct 2021
Yes, I can understand where she is coming from, especially when I am able to "step back" a bit. Just harder when right in the middle of it and she will want to give up and refuses options (like trying medicine already prescribed), getting second opinion, etc., and then a minute later talking about things that need to be done next week or next year.
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Stop trying to fix everything. If you're fighting with doctors, pharmacists, and insurance companies to fix what cannot be fixed.

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.
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Learn2Cope Oct 2021
My mom does not have dementia, so decisions have to be hers. Her doctor wants her to have a feeding tube (a J-tube). Thinks that will solve everything and she can happily have a normal life not eating. She's 90 years old, blind, and now the doctor thinks giving up normal food is a viable option. If she gets the J-tube she really could live for years, because she does not have the problems that normally cause a person to die. Just other problems that keep her from doing anything she wants to do or enjoying life in any way.
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Sounds exactly like my situation. I’m wondering if all of this is just to be expected and there really isn’t a perfect solution. After dealing with both my parents ages 88 and 89, I’ve concluded “going out”, dying is very complicated, sad and painful for everyone involved. Sorry, no good answer here, just compassion and understanding from me about your situation. I constantly turn to God for support and guidance.
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Learn2Cope Oct 2021
Thank you. I constantly pray for wisdom and patience.
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I found with my father that he really didn't want me to totally fix his problem because he would have no excuse to call. What he wanted was for me to be perpetually fussing over things in his life so he would have my attention. They forget that you have an entire other life (your own) that needs attention too. I learned that after I fixed something once or twice and he was still unhappy...I'd drop it back in his lap. Not satisfied with how I handled things? Well now you are free to handle it your own way...but understand, you have to handle it, not me.
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First, I want to caution you about a feeding tube. There might be legal ramifications in your state; for example, you might not be able to stop or remove the feeding tube, artificially prolonging her life/death.
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.
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You're having a common experience. The emotions, struggle, and angst is just overwhelming for those people with cognitive decline. It's a mix of misery and memory loss until later stages. Their brain cells are dying and they can't make decisions, cope with change, or understand things as they once did.
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 ..
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Hi--You asked '' I would like to talk to some experts in this field. Where to start? With her primary care physician? Local hospice? Any online resources?''
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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