Hey... I'm 30. My mom is 62. She has been struggling with fistulas and infected abcesses for a very long time. We've done many Womb Vacs, she's had many surgeries. and the abcesses keep coming back. She has a abdominal fistula that wont heal. shes been in and out of Hospitals and SNF facilities 15+ times in the past 2 years. Long stays.

Shes been on antibiotics for months now, and her surgeon and me are on first name basis basically. I've talked to him and her doctors so much. He was stuck on what to do as well. He didnt want to have the colostomy surgery because she is at a heavy weight and has COPD. and she is very weak. from being on TPN for so long. and the anesthesiologist didnt clear her for surgery.

Eventually he did cleared her. But there is a risk of her being on a ventilator. High risk. and.. I don't know if she could come off of it.

(There is a lot more issues with her.. but Im trying to summarize). Ive been her caregiver at home for the past 3 years. fulltime. Im her only family member. Its ONLY me. shes not mobile and isnt all mentally there. she cant make decisions very well. so basically the decision is kind of mine.... and I freaking hate it. I allready dealt with this, with my dad (ALS disease)

If she had the surgery theres a good chance the fistula will come back again, or she would have complications. the surgery itself could fail, she could get abcess again. it could never end.

Shes been on TPN (IV nutrition) on and off for a year. to treat her fistula without surgery because the doctor was really reluctant to do it. He knows her long history. in and out of that hospital for years. She has been so tired and scared. and she has no strong will to live. so I dont know what to do with that. Somedays shes happy and fine mentally. she doesnt have Dementia. But shes very childlike in thinking and cant grasp serious things... I love her so much and shes so forgiving of life and infinitely optimistic even when things are so dark.

But, She's on hospice now, but not "actively dying", yet she qualifies for Hospice because the doctors all agree without the surgery she has less than 6 months to live. But even with surgery its a dark road of uncertainty and could just be even worse. She has a bacterial abcess. and its come back 5 times this year. after they drain it. He said even after surgery she could have another fisula again. she has had a few fistulas before. her quality of life is hell. in and out, in and out. abcess after abcess.

We decided "together" that it would be better to stop the treatments.. I did ask her...what she wanted to do?...and told her the risks and pro and cons of each decision...

I have been indecisive this whole time going back and forth and its (absolutely killing me) its tearing me apart....because the final decisionis basically me. she doesnt remember any of our conversations. I feel like Im killing someone. But I cant take care of her alone anymore either. I am her sole caregiver and only family member. her daughter. and its been hell for so long.

I feel soo guilty and I feel like a monster.
Shes not on antibiotics anymore, and she is allowed to eat now, (after 4 months of NPO no food allowed, only TPN) and shes on pain meds. she says shes not in pain, but basically, this could takes months couldnt it?.. to pass from chronic bacterial abcesses??? I mean...I dont know what to do anymore.. I DONT WANT HER TO SUFFER. I was taking the doctors recommendation... I'm just.....I cant stop crying. I just want her misery to end. She is tired of the hospital.. is it the wrong decision?
our lives have been HELL this past 2 years.

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First of all, I have known people who were put under hospice and actually ended up kicked out because they lived too long, so it's not an automatic death sentence. My mom has passed now, but one of her last hospital visits, I really debated about whether to even admit her. I guess I chickened out because I asked her. She said she wanted to go. Well that was a mistake. All they did was take blood over and over, and poke her and drug her and scare her when they turned her in the high bed. The nurse suggested hospice and, since she had alway said that if she was in a bad place physically that was where she wanted to go, that's where they took her. It was for respite care because I was totally exhausted. Good decision. She started eating better while there and we had medical equipment at home when she did come back. She lasted four more months bedridden and then hospice was coming and they knew her history and what was going on, and they could try pain meds and make her more comfortable. As hard as it is to deal with, I knew that she wouldn't be in pain and that they would know more than me when she was near the end and they did take her back to the home and she passed away there.
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Reply to LivingSouth

My heart breaks for you. You are absolutely doing the right thing with hospice!! I know how hard this is for you. But the right thing to do is have your mother have hospice. You don’t want your mother to suffer anymore. You are such a caring and loving daughter and your mother knows it.

Trust your judgment. You are doing the right decision with your mother and hospice. They will help your mother so she won’t have to suffer.

Prayers and hugs to you!!!!
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Reply to elaine1962

Her life has been hell for the past several years and she has suffered -- WITH care.

Now she isn't being operated on, won't be on a ventilator (a horrible thing to endure), eats normally again, and isn't in pain.

It seems to me the suffering was the past few years, not now. If you continued all the treatment, the suffering would also continue. That's quantity of life, but not quality of life. You always want to strive for quality, and that's what hospice offers.

You've done the right thing, and you are not killing her. You're allowing nature to take its course.
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Reply to MJ1929

I know a family that had this "desease". The mother died from it and both her children had a form of it. I think its an auto-immune thing. Not sure if its curable. One daughter had a milder case but the other it was a life long thing, and she passed at 21.

Antibiotics can only do so much. The body becomes immune to them. You are really between a rock and a hard place. There is no guarantee that surgery will work. You really need to weigh the Pros and Cons. From how this desease was discribed to me, the infection continues just to tunnel itself. Its an ever going fight.

So sorry you are going thru this and needing to make this decision.
Helpful Answer (3)
Reply to JoAnn29

I am so sorry for this awful grief. As you have seen over the last years, there is no answer for your mother. Without artificial means (TPN is one) she would have been gone now for some time.
You have spoken with your Mother. You understand her wishes, and to be frank, those are the wishes, all said and done, that matter here. It is for you now to HONOR her, her own wishes, and to see to her having a comfortable exit.
You are not a felon. Therefore guilt is the wrong word. You are a loving daughter living in the fear that when your Mom finally has the peace she deserves you will feel as though you are responsible. I am so happy she was well enough to make her own decision. Because the word you are looking for is grief. That is an entirely other "G word". Grief for all the hopeless endless suffering that your physicians have already told you there is no answer for.
I am a retired RN. I want you to know that in my humble opinion death comes to us as a gift in some cases, and as an end to our suffering. My own brother died of Sepsis. It took him within days. And it took him quickly and certainly with hospice. In many ways it was a gift. The end to his fear and his suffering after a diagnosis of probably early Lewy's Dementia, following losing his home and entering care after a traffic accident. He was so afraid of suffering in the future, of losses of dignity and control. I was only relieved when he was able to pass with care of Hospice. By the end I was praying for it.
There is no shame in wishing the end to hopeless suffering. None at all. In California we now have death with dignity. I would be the first to lift that cup to my own lips when my time comes.
If you need professional counseling to reassure you that you are not a felon who is holding a gun to your mother's head rather than a grieving caregiver who is in agony over all you see daily, all you suffer, all your mother suffers and all she WILL suffer ongoing, then get that professional care to help you comb through the facts.
You have your Mother's wishes. Follow them. Honor them. Help her follow them. Support her. Reassure her that as long as you live she will be with you and you will love her forever. You have the professional opinions of your Mother's doctors. You ARE DOING THE RIGHT THING. Please help your poor Mom find the peace that WILL COME TO US ALL IN OUR TIME. There is no one here you have to convince. There is no one who needs or deserves an explanation. Please find the inner peace to see this through with and for your Mom. Were I your Mom it is what I would tell you, and given I am a nurse I have OFTEN talked with my own daughter about my wishes. I am ready to go. I am 79. I have had a wonderful life. And I expect my daughter to help me carry out my wishes.
I am so sorry for your grief. But please remember that GRIEF is the only appropriate G word here.
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Reply to AlvaDeer

I am so sorry you are dealing with this at such a young age. Someone below said that you are entitled to have the medical team come together for a conference to discuss the decision, and I agree with that approach - getting doctors to show up for a meeting can be like herding really arrogant cats, but if they do show up, hearing their take can be invaluable.

And, since you are close to the surgeon at this point, sometimes the MOST invaluable take from doctors, who have seen so much, is to try to have them answer the question of what they would do if this was their parent or they were dealing with it personally. Doctors often feel obliged to tell us the most aggressive medical route, but whenever they do studies on doctors end-of-life decisions for themselves and their families, it is very clear that they would take a very different path and not accept the scorched earth practices that they often feel they have to offer to others because they know those practices only gain a longer dying process. Hearing a doctor say that they may very well choose hospice of the shoe were on their foot is good information to have.
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Reply to kels31

I often think mans medicine gets in the way of God’s plan... use all the avenues and tools hospice gives you, not just your mother.....for myself, when I do not have quality of life, and hospice is a choice , I would choose hospice...
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Reply to babsjvd

Bra, have you sought a second opinion, either from a different surgeon or a different hospital?
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Reply to BarbBrooklyn

bra21 - you are not killing your mother. Her body has already given up long time ago. From my perspective, all the treatments have done so far were to prolong her life as well as her suffering. Time to stop and let nature take its course.

Death is not the end. Only our physical bodies die, but our souls survive. Your mother will be free from the pain and the dementia.

Your decision to put her on hospice is the RIGHT decision. Please do not beat yourself up. You would not want her to suffer more than she already has. And your mother, if still in her right mind, would not want to live like this either.

My mother has Alzheimer's in her 5th year. When she was still with it and aware that she was losing her mind, she cried and said she would rather die now than die slowly piece by piece. What could I do? Nothing, but to continue to take care of her. When her time comes, I will not hesitate to put her on hospice.

Don't second guess yourself. You are doing right by your mother.
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Reply to polarbear
NeedHelpWithMom Apr 17, 2021
What an accurate description, “piece by piece.”
That says it all.

The transitional times are excruciating, Polar.

Wishing peace for you and your mom as you walk slowly down this unpredictable path.
Hospice usually provides a volunteer...who can give you a break. Truly , you need a bereavement counselor now. Don't wait. Don't hold all of this inside. It's good to be on this forum and there is more help for you available. Life takes its course. And death takes its course. And there is no blame, no shame. Your beautiful loving soul cares for your mom beyond all measure. You are a Beautiful Loving Daughter. I hope you have a strong faith in God. He walks me through Everything.
When I am lost in overwhelming sorrow I cling to the word of God and soak it in.
I write down scripture and memorize it to repeat it over and over instead of getting drawn into the sorrow. Your mom needs your smiling face. And the Holy Spirit was given to us to Comfort and Counsel us throughout our lives. Rely on Him and keep your focus on Love. See each day as a gift because when your mom passes will miss her so much! Every moment is a memory right now...make each moment magnificent ! You Will Never Regret Loving her and you will remember these deep caring moments and she does Know you are there...even if she doesn't heal. The body is giving up...and one day she will be gone...and you will miss her so much! Do your very best and Focus on Love <3

+God Be With You+
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Reply to Healthyself

I don't think it's reasonable for your mother's medical and surgical team to expect you to make this decision unaided.

Your mother is 62, and it isn't surprising that after three + years of serious illness she isn't well enough to manage the decision herself. You are 30, you've been under strain as her primary caregiver for those three years and more, and whatever is going on with her it is, to understate things quite dramatically, very complex and very technical.

How was your mother's quality of life before she developed these terrible infections?

There should be some sort of ethics committee or board or team your mother could be referred to for a case review. In your place I think I'd ask for help from people who have the training and expertise to understand the situation but aren't involved in her treatment.

You can tell her lead physician that you want a review without committing yourself to a change of plan. It may well be that hospice *is* the best decision, but I think you deserve the reassurance of knowing that you have acted on the very best impartial advice you can get.
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Reply to Countrymouse
NeedHelpWithMom Apr 17, 2021
This is true, CM. She has carried this burden alone, which is definitely a heavy load all by herself.

Thanks for your response to my post.

From what you say, and most importantly, from what her medical team says, I truly feel that you made the best choice.

I certainly understand how you feel. I adored my father.

He developed heart disease. I asked his cardiologist, “If this was your dad, would you still allow him to have this surgery?”

His answer was yes, if your dad doesn’t do the surgery he will surely die and I spoke to him about the risk and he wants to have the surgery.”

So, I trusted his professional opinion. I said, “Thanks, for your honesty.”

My dad had the surgery, came through it fine but in ICU, he had a stroke.

Was I angry? No. Why? Because there are no guarantees in life.

Did I blame the doctor? No! He was an excellent cardiologist.

Did I get mad at myself? Nope. None of us have a crystal ball.

Mom, on the other hand was really upset and blamed herself. She cried and said it was her fault that he had the stroke.

It broke my heart to hear her say that it was her fault that daddy had his stroke because she didn’t stop him from having the surgery.

I held mom in my arms and told her, “Mom, I know how much you love dad.

We all love him so much but daddy would have died without the surgery. You could not have known that he was going to have a stroke.

Needless to say, dad had to do rehab in a nursing home after his stroke plus outpatient speech therapy. He died in 2002.

He had a long road ahead of him and honesty, he wasn’t the same man after his stroke.

Nevertheless, it was his choice and I respected that.

Mom continued to question if it was her fault for not telling him not to do the surgery.

I continued to tell her that it absolutely was not her fault.

It really hurt me to see her second guess.

My mother was the rock in our family. Daddy was the anxious one and mom was his calming force.

It shook me up to see mom as the anxious one.

My dad graciously accepted his fate. He mellowed.

He had bought himself a little bit of time doing the surgery but took a risk and unfortunately it didn’t work out as he hoped for.

Sadly, mom took on his previous anxiety. I had to step in as the rock. I did it but not without paying a price.

I am married. I was raising two daughters. It wasn’t easy. I ended up quitting my job, to care for both of my parents.

You know what I am talking about. You took care of your parents.

You are like my mom. You’re very connected to your mom so you are questioning your decision.

Your mom has complicated health issues. They even stumped her doctor. You are not a horrible daughter. You are kind and loving. I don’t think that your mom would want to linger and prolong her suffering.

Maybe it’s a blessing that her mental state is the way it is because she is accepting her reality.

My heart goes out to you. I have two daughters, one 25 and the other 32. I would never want them to be in agony over me.

Take care, dear lady. You’re going to get through this. I promise you.
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Reply to NeedHelpWithMom

Bra, the disease is killing your mom, not you. It sounds like she has been dealt a really sucky hand of cards by life; you've done a spectacular job of getting her care.

Please be at peace with going along with HER decision to stop treatment. And talk to the hospice social worker and chaplain for support, as well as venting here.

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Reply to BarbBrooklyn

Oh my gosh, cry sweetheart. Cry all you want. You have been through the mill. So has your dear mom. I feel for both of you.

You have done more than many have done. Do not allow yourself to feel guilt. You haven’t done anything wrong.

Of course, you feel horrible about what is happening and that is completely understandable.

I am so sorry that you are suffering with this extremely difficult situation.

You are so young to be dealing with this. Your mom is very young as well. It’s terribly sad.

Please do not second guess your decision. If your mom has qualified for hospice then her doctors believe that it is the best place for her.

It would be very challenging for you to care for your mom with her health issues.

You are showing a great deal of love, kindness and mercy not to want to prolong her misery.

You did explain exactly what her options were and she selected this option. She essentially agreed to it.

Let me ask you a few things and I know that these are tough questions, so if you don’t want to answer them, please don’t feel like you have to.

If you were in her shoes what would you want? How much extra time would she have if she went the other route? Would her quality of life be better or worse?

My mom is in hospice too. I don’t know how much time she has left but she has suffered greatly with Parkinson’s disease. She’s ready to go. She has accepted it. I bet that your mom has also.

We are struggling as the daughter because we love them.

It’s really hard to watch a person fading away.

Hospice offers so much.

Please take advantage of all of their services such as the social worker and clergy.

Speak to a therapist if needed.

Wishing you peace during this transitional time in your lives.

Stay in touch on this forum. There are wonderful caring souls that help me tremendously. They will help you too.

Sending you a bazillion hugs.

You and I will miss our moms when they are gone. They will be at peace. They want us to have peace. They know that we love them with all of our hearts.

Do you know what the hospice nurse said to me yesterday?

She said that mom told her that she no longer wanted to be a burden on her family. She said that she was relieved to be in hospice and felt grateful that she was there and being well cared for. I bet that your mom feels the same way.
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Reply to NeedHelpWithMom
bra2194815 Apr 17, 2021
I just want to say, your response made me cry, I feel less like an awful person... :( it means a lot to me....I appreciate so much...
To your questions..

If she went the surgery route.. I don't know if it would be successful.. It could always be just fine. I won't ever know... ( What if I overreacted and it would've been fine)That's what makes it hard. Though I feel that she would have complications and more surgeries. Based on our experiences with her health. .. Even without this issue, I didn't see her living much longer than 5 years...but.. I mean I don't know..

If I were in her hard to say because She's not mentally really an adult anymore... She seems fine with either option. She always thinks everything is fine. It came down to me basically.. .. If its the wrong decision..I will forever feel deserving of bad karma.. :(
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For what it's worth, I think you made the right decision. I can hear your pain in that last paragraph. I don't know what else you could have done.

No matter what it feels like, you're not killing your mother. You're doing what you're doing to keep her from suffering.

You are a wonderful daughter. You obviously love your mom. Make sure she knows that. It sounds like she loves you, too. That's special, no matter what happens.
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Reply to AudioMan
bra2194815 Apr 17, 2021
Even if it means, she has a growing abscess that eventually gives her sepsis... But could take months? I feel guilty because her inpatient facility is saying she's not "actively dying" or critical enough to stay inpatient. Yet still forgoing antibiotics and and substantiable nutrition... It feels like forcing someone to die..
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