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My fell 9 days ago in the bathroom and broke her neck. She's 87 years old. She was living with me at the time. She's been in the hospital since but hasn't eaten in over 8 days now and they can't get her meds into her. They stopped her IV meds and want her to take meds by mouth. She is refusing and is completely confused, scared and just plain not there anymore. I guess they call it hospital psychosis. Today, the docs want to talk to me about alternative solutions for her meaning feeding tube I guess. She is a DNR and I am absolutely sure about her wishes. She would never want to live this way at all and has stated many times before this that she was ready to meet God. She is not paralyzed from the fall. Has a neck brace on as surgery was out of the question. They have her hand tied in mittens cause she was pulling off the neck brace. She's become a very difficult woman now and is actually not very nice. I adore my mom so please know this before I ask this next question. I'm an only child so I have no other people to really ask. Should I allow the feeding tube so she doesn't starve to death and gets her meds or should I do what she has asked me to do and allow her to eventually "go to God"? Even writing that sounds like I'm a horrible person. I'm really lost here so any help would be appreciated.

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@bhenson, my heart goes out to you. we just went through something similar to that with our mom. Only she was a medical malpractice. But after reading literature given us by hospice only a day before she died, it appeared that my mom was moving towards death for at least 3 - 4 months before she died. We did have a feeding tube inserted since the doctors kept giving us hope that she would come back. Sadly, the deal was already done when they misdiagnosed her from the beginning. She died 2 months after the feeding tube. She also did not want to have such a thing but she was so medicated and hallucinogenic that she didn't know what was going on. She too refused to eat after the surgery that led to the misdiagnosis. It was a struggle to get her food. Sounds like your mom is done. I wouldn't listen to the doctors since I had such a horrible experience with their lack of expertise and care. If your mom has said she's ready to meet God before this, then this is her way of preparing you to let go. But the call is still yours. At 87, she still may be able to recover and live longer. My mom was 2 days short of her 87th but should have had more years. You are not a horrible person for struggling with this. I will be straightforward, I still don't know if we did the right thing. Life is not something one can easily throw away and never look back. The doctors should not be withholding her meds either. They can give her nutrition called TPN and have a pic line to give her the meds without the feeding tube, at least for now. There are still many ways to get around it but hopefully you are power of attorney and what you say goes. The hospital can't just decide on their own to stop without your authority. That's unethical and also illegal.

I know I've rambled but hopefully I've given you some hope no matter what decision you make. Just think of her quality of life and would she/you be able to accept it? Will she just end up having more problems that will prolong suffering for her or will she return to what she was? As I said, it is difficult but pray about it and go with your gut feeling. That is what kept my mom going until she gave up. And maybe that's what you need to do is let her give up first. Then you don't have to make that decision. My prayers are with you. Please surround yourself with caring friends/family.
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My question would be why did they stop her I V meds? Infusion is easier this way than orally. A DNR does not mean withholding meds, or withholding food, feeding tube or otherwise. It simply means Do Not Resuscitate AFTER an event has taken place. At age 87, she will pass sooner than you think, without hurrying it along.
My suggestion is to make her completely comfortable with food, water and warmth and appropriate pain meds.
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again you are not a horrible person, you know her wishes, respect them and let her go be with god, prayers are with you, do not allow a feeding tube
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I am so sorry you are in this position. I do not know what I would do but I think I would not allow the feeding tube. Best wishes to you.
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You sound like a really nice person. Have you talked to the social worker or other counselors at the facility where your mom is? How about your other relatives besides your daughter who is pregnant? Like aunts, cousins? I pray that things get better for you. Please keep us posted.
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If your mother was in her right mind and able to express her wish to be with the Lord then there is nothing for you to feel bad about. It is obvious that she is confident in where she is going so let her take her rest. And you take comfort in knowing that she will without a doubt, be better off.
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Hopefully when that time comes god will strengthen me to do whatever is best for my mom. At least you had your sister to provide some sort of support. My siblings are so caught up in their lives and/or career that everything falls on me for the caregiving of my mom. It is extremely hard but I can't even stand to let myself think about the day she won't be here. Your sister may have handled it different but I am sure that it is hard for her also. It's different when it's in your own family. The emotions are different that she has to deal with if it was a patient (maybe still hard) but you feel as if you loose a part of yourself when a family member dies.
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My sister and I had to make this decision two weeks ago. Mom was in a lot of pain after falling and breaking her back, and she had pneumonia that was antibiotic resistant. After she got pneumonia, she became very restless and agitated and was
in constant pain. She got so she could not eat or drink or swallow. The nursing home suggested Hospice and they kept her quiet and pain free until she passed
away one week. I was with her alone in the room when she died so it has been
very hard for me. Somehow I have to keep myself together today for her funeral, I
have to play the piano for the funeral and give a talk. She would have wanted me
to play for her funeral though, she had everything planned out what she wanted,
and fortunately had most of it paid for in advance. The decision was easier for my
sister to make than me, as she is a doctor and sees death all the time with her work. I took care of mom in her apartment for 7 years and then came to visit her every day in the nursing home, so it is harder for me to see her go. I do recommend Hospice, they were very good at knowing what to do and keeping
her comfortable.
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"From a heart that has been there, may I encourage you! Don't overlook the caregiver. Love on them. Encourage them. And be the hands of Christ, helping carry their burdens, in the midst of their weariness!" I copied this, but I felt that I needed to answer your question.. and since it has been a while, I wondered what you decided. My mom had colon cancer and spent her last few days in a nursing home.. it wasn't what she would have wanted but having small kids I couldn't take care of her.. my only regrets was not having hospice to help me through.. my dad wouldn't allow that but he did allow me to make all of the other decisions. And I do also have a younger sibling... God gave me the strength... prayers are with you now!
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I feel for you too. I'm going through the exact same thing with my mom. She's a victim of medical malpractice and we never thought she would end her life this way. We tried many things to get her better and a few times she looked like she would make some progress and get better. My sister wanted to put her in hospice a month ago to convenience herself. It was very disheartening to here her say that.

I wish I could give you advice but we're still trying to decide on a hospice for mom even though I feel that she is still wanting to live. She can't talk, just lays in bed and moans occasionally and is so contracted that any touch, movement is painful. So it is difficult.

Please know that you are not alone. It hurts and it's a matter of like you said, you know she wouldn't want to live like that. My mom is a DNR too and I know she would want to go out peacefully not in agony. I wish you nothing but peace of mind and comfort for your mom. Sometimes people end up recovering in Hospice. It's a long shot but who knows, there's always room for a miracle.
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Since your brother is not doing what your Mom wants whenever the facility decides that payment is due and it will come about at some point NH are a business and you never see them closing so it pays for itself your brother can pay the bills but more important some day he will have to answer for his actions. I hope you keep in touch and keep us updated and I hope all who read this will do the paperwork so this never happens to another family NY state is very proactive on this and every person who is in a hospital gets the paperwork-everyone has a chance to make their wishes known and it takes the burden away from family members in a time of crisis-I was so glad I knew what my husband wanted when the time came to make those decisions.
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(((((bhenson))))) that must be so frustrating, Look after you, in any case, and let us know how you are and mum is doing. I suppose because your bro is a doctor, thay will bow to him regardless. Howe can he know what is best when he has not even seen your mum in over 6 years? More (((((((hugs)))))
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Thank you 195 Austin. My brother decided to put in the feeding tube. He lives in AZ and has not come out to see mom and I live in NJ with mommy. Unfortunately, he was the first person on the Living Will and they will not take my advice or thoughts. He's a doctor and for some reason thought putting it in was a good idea. Mom is now in a nursing home with a feeding tube and is completely unaware of surroundings or anything else. I'm livid with my brother as he made the decision and I have to see the consequences and live with them. He hasn't seen my mom in over 6 years. Thank you so much for your input. I'm sorry about your husband but glad that he passed peacefully.
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I have not read all the post but since you have the DNR and know what her wishes are I would not go the route of a feeding tube the hospital may insist that you take her home and do the feeding tube-hospitals do not want patients that they can not make better so they may not have a choice of doscharging her-would you want to be doing this for the next few years-since you know what she wants you mind will be free when you do as she wants -I had to do that with my husband when there was no hope for recovery of any kind we stopped life support meds and he died 12 hrs. later we only used pain meds and a breathing tube and he passed calmly.
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BHenson,
I'm so sorry about your brother's attitude. It's hard to understand. Hugs to you and blessings.
Carol
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I'm so sorry about your mother. It all sounds horrible, but you are NOT a bad person to want to follow her wishes see an end to the suffering. Death is a part of the life cycle and is unavoidable, no matter how much medical attention we get.
You are fortunate in that you know what she would have wanted. Palliative care - comfort care - is certainly what I would choose for myself under those circumstances and it sound like that is what your mother has wanted. Who would want to live this way with no chance of recovery? I know that it's a very hard decision for you, but please remember you want to see an end to her suffering and let nature take its course. You are a loving daughter with a good heart. We are with you. As you can see, many of us have had to make similar decisions. Please check back with us and let us know how your are doing.
Carol
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God bless you for doing the right thing and so sorry your family is treating you bad, take comfort in knowing you did what your dad wanted and he is no longer in pain but in the arms of God. many hugs and prayers
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If this is any comfort, my brother tried to run the show for my father whose Living Will was ignored. What made it worse was that my brother is a doctor who knew better. I was finally approached ,after my father suffered for 8 months and was in 8 different facilities, by the individuals at the hospital who were Dad's advocates. This actually occurred at each hospital or hospice but we had not stayed as long as we had at the hospital where my brother had practiced medication for 35 years. While at my brother's hospital, my mother and I were approached about Dad's living will not being followed. My mother refused to be involved. I was finally pulled aside by one of my brother's friends who told me he was about to be pulled in front of an ethics committee and I needed to help. Since I was just a special education teacher, I was not impressive to my siblings. However, my other siblings were hours and hours away from the situation. In the end, I made the decisions at Dad's request and Living Will and the hospital's request. I am not appreciated by my family these days. My mother was functioning physically but was not realistic about my father's strokes and future. He was 84, mentally functioning well, but would be on a vent with a stomach tube for the rest of his life.He asked me to make certain his next code blue did not result in any actions to keep him alive. He died two weeks later with my husband and me as the only family members present.. My family does not know that my brother's license he has held for almost 40 years has been required to lapse until he has been judged stable by an ethics board. I am the black sheep of the family,but I am not too sure that is a punishment. Anyway, the point to this is that eventually the doctors deal with the person who is actively involved in a parent's care when a crisis starts to occur or the money runs out from medicare. Just go love your mom and start contacting the legal contacts mentioned in the other emails. Comb your mom's hair, keep her hands and nails clean, read and sing to her. It makes the days after the funeral much easier. You are the one that is the blessing to your mom; that is what counts. Rebecca
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What a jerk!! But you already knew that.
Hugs and kind thoughts to you.

Now, back to work.

Have you recorded all of this? I know it's painful. It's also useful. It will help explain why he is NOT part of your own "final plans."

Now, while you have the engergy, is the time to put your own plans in order.
Do you have:
1. A durable power of attorney?
2. A durable power of attorney for health care?
3. An intensity of treatment statement?
4. A crisis information sheet with all of YOUR vital statistics along with your SS number, current drivers' license number and name of primary care physician, the name of your health insurance company, and YOUR patient number with that insurance company?
5.A will? I know, you're not going to die for a long time. But you need to put something in writing so it can include the phrase, "I am not leaving my brother (fill in the blank) anything because of the way he treated our mother." If you don't and you do die before he does, he will get his sibling portion of your estate wether you want him to or not!!

In the mean time, I reccomend one of these sites.
beliefnet.com or freemeditations.com
The chief thing is not to let this horrible event become the focus point of your life. Yes, it's horendous. And may someone treat him in his hour of need as he has treated you and your mom. But living well is the best revenge - I know it sounds trite, but it's true.

If you want me, look for me at thesurvivingcaregiver.com.
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Bhenson, Huggs, prayers and thoughts to you. You've done the best that you can, may that bring you peace. You are cared for!
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Your brother is an ass, but I'm sure you already know this. I'm shocked at his lack of compassion and the disrespect he shows towards your understanding of your mom and the wishes she has made clear to you. Since you have said that your mom in now unresponsive, maybe she will just pass away in spite of the feeding tube. I am keeping you both in my prayers. God Bless you Barb. Love, Cattails
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Unfortunately, today, I was told that my opinion is not to be considered. Because my brother was first on the living will, he has the right to make any and all decisions. He has decided to allow her to live with no memory, no quality of life and just survive. NOT because of any feelings of family but because, as a doctor, that's what he thinks. Not once during our meeting today did he mention my mom as HIS mom. Just "her".
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Barb,

I'm glad I could be helpful.

Did you try the omnibusman? Try your state's office on aging. People get stuck like this all the time. That's no comfort, but it does mean there are people designated to help you and your mom.

If your mom's doctor won't listen to you, go to the facility's omnibudsman (they all have to have one). Get this person to translate what the doctor's orders mean for your mom.

One thing for which you can be thankful is that your mom knows nothing about all of this. She is so out of it you can give her comforting answers and she will simply accept them rather than pushing you for details.

If you were Christian, I would know what meditation advice to give. However, Buddists have their own meditation guides. It's time to look into them. If they don't fit, look for secular guides (yes, they do exist).

Also, give yourself a vacation. Mom isn't going to get any worse over the weekend. If she were, the doctors would be treating her differently. Vacations don't "solve" anything, they just give you renewed energy to deal with it.

Again, push your mom's doctors for a realistic time-line (even if they insist on giving you all the if, ands, and buts. I found the line that worked best was: "how can I make good decisions if I don't have accurate information?"

This means good decisions about your own life as well as your mom's.

Hang in there. Hugs from here as well.
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Not so good right now. Mom is basically non-responsive and I have been told by the doctor that because mom never changed her living will from my brother (who hasn't seen her in 7 years) to me first, I have no say in what happens to her. Hugs to you. You're an angel.
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Hey Barb, How are things going for you and your mom? Just wanted you to know that I was thinking about you. Hang in there.
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In answer to some questions, my brother doesn't believe in religion. It is true that we don't talk much at all but that is his choice. I call, he texts back. Doc just told me that because my mom is not in a terminal condition per se, she will not do anything for mom. Mom is not expected to come back mentally or physically but she is not, according to the doctor, dying right now. She is existing. This is the worst thing I have ever gone through. Ambsmith thank you for your advice. Unfortunately, I do not have a spiritual advisor really. I live and love through doing good for others. Buddism is most close to my beliefs. If I have to elevate this I will but I am so trying to just do what mom would want. So far, my brother hasn't responded to me after having given him the docs cell phone 2 days ago. He does things in HIS time when he HAS time. Hugs to you all for being here for me.
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Bhenson...I understand your frustration of wanting to do what you feel is right for your mother and her wishes. Your brother could be looked upon as an obstacle. But, I would use caution in throwing him under the bus because you think he doesn't care or is looking at his mother as a patient. It could be other reasons why he ordered the feeding tube, such as his beliefs and perhaps his religion. Are you aware of "natural law"? It states that a person deserves or is entitled to receive food, water, nourishment, either natural or artificially, as long as they are breathing. This doctrine is especially followed by Catholics. He may have ordered the feeding tube not because it was easy or didn't care but because he was following his beliefs and exercising compassion in not wanting her to starve to death.

How often do you and he talk...if at all, about your mother's care? It is your right to express your opinion and ask him questions. Perhaps you could get a better understanding of his thoughts and what the future holds for your mother if the two of you talk. But, I wouldn't approach a conversation with him in a combative state, but in wanting to be informed.
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It's time to talk to:
1. The hospital's omnibudsman.
2. Your own spiritual advisor (Pastor, iman, etc.)
2. Your state's representative from the Office of Aging.
3. A laywer.
You may have "no recourse." But it's still worth the fight to make people explain their actions. Harass your mother's primary care doctor until he makes your brother explain his choice of treatment. With luck, they'll make him so upset about explaining himself, he will agree to do what is right for your mother rather than what's easiest for himself.

Good luck
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So here is an update. I said I was an only child because my older brother has not seen or talked to my mom in over 6 years. He doesn't care. I am here alone with mom. But....when I handed over the Living Will to the hospital, it stated that he was first and I was second (it's the only thing I forgot to have mom change). The hospital and now the nursing home would do nothing until they talked to HIM. So...he put in the feeding tube (did I mention he's a doctor so quite a know it all). He's not looking at mom as a mom..he's looking at her as a patient with no feelings. So here I am, watching mom suffer while he's still on the other side of the country making the decisions. I couldn't believe that they wouldn't allow me to do what mom wanted. So....please please make sure that the person your parent wants making the decisions for life or death is the FIRST person on the living will.
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I'm going to address the "Only child syndrome", one only to another. It's hard to let go of a parent when you have no other immediate family (siblings) to go through the decision and the loss with you. My dad has Alzheimer's and mom is very ill and has the first stages of Dementia. I know that for them artificial life is no life so, as hard as it is, you have to seperate your loss and sorrow and follow your mother's wishes - if she can no longer interact with you here, let her go in peace and in time, hopefully, knowing that you unselfishly did what was best for her, will bring you peace, and most of all take comfort in how well you cared for her -- many, many children are not there for their parents during the final steps that our parents take. Perhaps you can find comfort in knowing that you will meet again -- when she is the old mom you remember. My heart goes out to you.
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