My mom has a history of stroke, CHF, PAD, diabetes....a bag a mixed medical tricks. She is suffering right now, the pain is agony and she was admitted to the ER and they gave her massive amounts of antibiotics and fentanyl. I have to choose to amputate or end of life care. I am going to speak to palliative care hopefully today. I think an amputation will be horrible since she has poor quality of life. I am scared of what her ending days will be like if I choose to let her come home with hospice. Will it be a horrible death? She’s suffered so much. I am her legal guardian so all decisions fall to me. I thought I was ready to let her go and stop the suffering, but I am just scared I will choose poorly. I don’t want my children to see her suffer, my father is useless but I believe her time here should be done and she should be at peace. I have watched 30 years of suffering. It’s no way to live.

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No, with hospice it won’t be a horrible death. As her ‘pain is agony’ she will probably have morphine for the pain, probably continuous IV with a little pump called a morphine driver. It will make her very sleepy, but she won’t be in pain. The morphine damps down the body’s functions, and this means that her death will be quicker – probably around 24 hours rather than days of pain. She will still be able to hear if you speak very loudly close into an ear, so you can still say goodbye or give her your love during the process.

It sounds as though the only choice you and your mother have is amputation followed by poor quality life and a painful death at the end of it, or a painless death that brings the end on more quickly. Don’t be afraid that ‘you will choose poorly’. Once your make this basic choice, hospice are the experts in doing it right. I went through this with my mother’s death, and I am confident that it was the best choice. I also talked my daughters through the same thing with their father, my ex. Once again, no regrets - in fact he said 'is there any way to make it quicker' on the morning before he died in the night. The end is always emotionally difficult, and some people are distressed that things can move quickly with hospice. Hospice doesn’t kill them, it just speeds up the inevitable.

Very best wishes to you and your mother, Margaret
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Reply to MargaretMcKen
Julieannmamaof3 Jun 20, 2021
Thank you for your words. I’m pretty sure, unless a miracle happens, hospice is going to become a reality. And it brings me some comfort hearing positive things about hospice care when I don’t have any experience with it
Is your mother not able to understand or participate in this decision? If she is not, then quite honestly, with all the pain and the good likelihood that she will died from the surgery and blood clotting problems in any case, I think you should opt for peace and for hospice care, with good medications to see her below the level of suffering. That would be my decision for a Mom no longer to participate in any decision making who is living in agony.
If your Mom is able to help make this choice for herself, please allow her to do so. This is now YOUR and YOUR MOM'S decision only. She put you in charge of making it for you and trusted you to do so. Honor her wishes and the wishes you heard expressed by her all her life. If she is requiring fentanyl for pain relief she is in agony. As an RN, given this age, the prognosis for surgery is not good in any case, and I hope the doctors are being honest with you about that.
I am sorry you have to make this decision along. That is always difficult and there is no way to make it pain free. Not everything at this stage has an easy or a perfect fix. Do what you believe in your heart is BEST FOR YOUR MOTHER.
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Reply to AlvaDeer
Julieannmamaof3 Jun 20, 2021
Hardest decision ever!
I am getting the feeling the doctors are trying to prepare me for her systems shutting down, so I think my answer will be clear what needs to be done. It just is horrible.
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I think the kindest thing for your mother would be to get her onto hospice comfort care now, after 30 long years of suffering and pain.

My sister in law is 64, diabetic with Lupus and now possibly Leukemia. She just had her right foot amputated up to the knee after a 2 year bone infection that would not heal due to diabetes complications. She's now suffering with the stump not wanting to heal and a delay with getting the prosthetic, just to be hit with Leukemia testing! She's ready for hospice at this juncture and the family is planning for it now. Enough is enough for the poor soul. We all believe in life after death and eternal peace once we leave the Earth to be with God, so that's what we hold onto.

Wishing you the best of luck with a difficult situation.
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Reply to lealonnie1
JoAnn29 Jun 23, 2021
Because my GFs stump would not heal she was never able to use prosthetic other than putting it on for show. She was never able to put weight on it.
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If your mom is cognizant this should be HER decision not yours.
The doctors should be talking to her and giving her the options as well as the supposed outcome of each decision.
Now if your mom is not cognizant or if she is unable to respond for any reason then this becomes your decision, or whoever she has chosen to be her POA for health. Technically her husband, if she is married, should be the one also making this decision if she is not able to. If mom is married and you elect no surgery is there a possibility that your father would override that decision?
If you choose Hospice they will do everything in their power to control her pain and keep her comfortable.
there is also the choice of both amputation and then Hospice. The amputation will control the infection and given the other things going on with your mom the choice to operate might be an end of life decision as well.
The best way to help you decide is what your mom would want given the current conditions, if she can not make this decision for herself.
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Reply to Grandma1954
Julieannmamaof3 Jun 20, 2021
It’s hard because she was left with deficits from her stroke, and gradual decline in the past few years. I am her legal guardian and according to the legal system she is declared an incapacitated person. I try to think what she would want vs what we we would, but I want her to live which is selfish when she is suffering. Right now she is not very coherent, the infection is in her blood stream and she is on high doses of pain meds. The next few days I will know more, but as of right now I doubt she is a candidate for any type of surgery.
I am surprised amputation is even being considered with CHF and diabetes. I think you need to ask the surgeon what an amputation entails. Its not just removing the limb and everything is hunky dory.
My girlfriend was a juvenile diabetic. She had her leg removed to the knee. She refused rehab and was in excruciating pain. Because she was diabetic the stump was hard to heal. She never was able to wear an artificial leg. There will be therapy. Will your Mom be able to do it with CHF. My GF also suffered from phantom pain.

Personally, I think this will be a shock to an already weakened body. I bet if you asked the doctor "would you recommend this for your Mom if she had the health problems my Mom has" he would say no. Drs are obligated to offer all options. They are also obligated to tell you everything that can go wrong. You say Mom has had health problems the last 30 years. Maybe it is time for her to leave this world peacefully and pain free.
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Reply to JoAnn29
Julieannmamaof3 Jun 20, 2021
I agree, leaving peacefully. It’s just unfamiliar territory for me😢
Research all hospice organizations. They aren’t all the same. If possible, please select one that has an ‘end of life’ hospice facility or house. It will take the weight of the world off of your shoulders to know that she will be well cared for 24/7. You can visit as often as you like.

I agree with you about not exposing your children to this if you aren’t comfortable with it. It can be frightening and disturbing for them. How old are your children?

My mom recently died in a hospice house. She died with dignity and free from pain. Her care was excellent.

Wishing you peace as you navigate your way through this difficult time in your lives. I will keep you in my thoughts and prayers.
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Reply to NeedHelpWithMom

Only chiming in to say I’m sorry you’re going through this. Your mother is blessed to have you and I’m sure she knows your love. Wishing you both peace
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Reply to Daughterof1930

JoAnn raises a good point about your mother's diabetes.  I would be concerned about complications, and even whether or not there's the possibility of healing b/c of the diabetes.  

Your post reminded me of a gentleman in rehab at the same facility as my mother.   He was a noncompliant diabetic, refused to give up foods that aggravated it.   I don't recall if his first below knee amputation had been done when Mom was first there, but I do know that the second took place while we were still visiting.     Once he was out of rehab, he went into dialysis 3x weekly. 

We didn't even know him beyond a casual acquaintance at rehab, but it was very, very difficult to see him (or anyone else) in that compromising position.

I can't imagine anyone finding any hope or reason for living in those kinds of circumstances, and that would be my primary concern for your mother...the agony of the amputation and the following agony of living with it.

 I would go with hospice; in the long run, you'll save her a lot of pain, grief, perhaps confusion, and she can end her life w/o that kind of emotional and physical trial.  And remember that you're doing the best you can for her, saving her from the ordeal of surgery and attempting to adjust to a more compromised lifestyle with no hope of improvement.

I hope you can be comforted knowing that she will be getting pain meds (perhaps morphine) and a GOOD hospice will be attentive to her needs to minimize that pain.

I also hope you can remind yourself that you're thinking of her best interests, in a situation in which she's probably not able to make that decision herself.
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Reply to GardenArtist

Julieannmomof3, the added info of the infection in her blood stream I think I would opt for Hospice and keep her as comfortable as possible.
((hugs)) If you have all the information and possibilities the decision you make is the right one at the time. You make decisions out of love and wanting what is best. Don’t doubt.
Helpful Answer (4)
Reply to Grandma1954

This is a very difficult situation, and no matter what choice you make, you will likely be second guessing yourself later. Please try not to be hard on yourself for having to make this choice. Given her various existing conditions along with the infection now spreading, and you say she's not coherent, hospice is likely the lesser of the two evil choices you have to make.

Several commenters are/were in nursing or had a friend/relative in similar circumstances (infection/amputation) and they've had a difficult time with it. Given your mother's other medical issues and age, amputation will likely be even more difficult for her.

Be kind to yourself, no matter what you choose to do.
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Reply to disgustedtoo

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