Anyone have the horrible fate of deciding if mom lives or dies?

Like others have said, you are lucky to know her wishes. My mother is DNR, no feeding tube, and no hospital period. I took care my brother who died of kidney disease just over a year ago. While he and I had many discussions about his wishes, you also never know what variables lie ahead, exactly how things will play out. In the end, I had to call an ambulance even though he didn't really want that. He was throwing up a lot of blood, and I had to tell him that I couldn't handle what was happening by myself. We lost him the next day. I had some guilt about not following our plans to a T, but in counseling, I learned that the dying process does involve the caregiver also. Not what they want, but what they are able to handle. You'll make good decisions. I wish you peace with them.

I went through this last year. My mother was put on a respirator. After 1 week, I was told they had to take it off. She was off one day, and was not doing well. They had to put her back on. Then they started asking me if I wanted it removed for good. This was heartwrenching...how do you watch your mom gasp for breath (or in your case starve to death). Then her heart stopped and they revived her...this happened 3 times.
Finally, a very caring nurse sat down with me and asked me if I would want to go through all of this, knowing that the prognosis was not good. She explained that even though my mom probably wasn't totally aware of what was going on, she still was being put through hell. She asked me to look at what quality of life I expected my mother to have if she were to get through this. I had my answer at that point. The last couple days, they had to insert a feeding tube...so many tubes and cords sticking out of her neck. After almost 2 weeks of constant pain and agony, I signed the DNR for her...she passed the next day.
I understand what you are saying being an only child...I have a brother, but he lives far away, and I had to make all the decisions on my own.
I feel so much empathy for you...I grew up a lot during all this.

I sincerely hope that you are at peace with whatever you decide. Your mother has made peace with going to be with our Lord. there is no more pain or sorrow for her after she goes but you will be left with questions of what could I have done different? especially in your alone time but all u can do is work your conscience. Pray and pray some more for your peace.

I agree with others here. Honor your Moms wishes. She told you of them so it could be done for her.Our family had to decide for my brother. After this happened we all got together and let each other know of each of our decisions in case this happens to one of us. Good Luck..Remember your Mom is counting on you.

2 yrs ago tomorrow, my then 95 yr old Dad had a debilitating stroke and in a pantic, I asked that my Dad be placed on a feeding tube because he too was refusing foods and meds. He has a DNR but I was trying to help save my Daddy, I was so scared and had to make decisions pretty much on my own. Dad got the feeding tube , returned to NH care and pulled the tube out the same night.

Subsequently, dad was place in hospice. 2 yrs later, Dad is still in NH care with mom, he is eating and drinking…what and when he wants to! In other words, I have no regrets for going the xtra mile, but in reality was I right to go against the DNR? I don’t know and I don’t judge anyone in this position.

I can only tell you that thru many nights of crying and praying and listening to my inner voice, I made a decision that I could live with.
This community has been a support group for me when family and friends just didn’t get it…the loving and caring people out here GOT it and held my mouse as I typed out my fears and tears.

Seek and you will find the answers, love, support and guidance that you need. May your way be made clear, you are a loving and caring person making tough decisions.
Love and blessings!

Bhenson: Let your mom go. She has told you her wishes and in the lucid moment he had in the last day or so, she once again asked you to let her go. Please honor her wishes. She is trusting you to do so.

Bhenson, I am so sorry to hear about you mom in this condition and I hope you find the strength within yourself while making a decision on your mom's behalf.

You pretty much have already answered your question by stating this to us that, "She would never want to live this way at all and has stated many times before this that she was ready to meet God."
I know this has to be very hard on you but you already know what her wishes are for situation like this one. You are in our prayers and we all support you on your final decision.

mrjess5, I'm going through the same thing with my mom, I had to have mager surgery on Feb. 3rd,2012 to have a total knee replacement so I had no one to stay @ home with my mom she too is 87 years of age so I placed her in a nursing home for a month and a half so I could have the surgery rehab @ home for a couple of weeks then bring her home. When my girlfriend came to pick me up so I could go and see mom @ the home II found her not eating and they didn't even encourage her to eat or drink she went from 125 to 102 in just a month and a half, so I put my recovery on hold so I could bring her home and I began trying my best to get some vitamans and nutritioal food into her if she doesn't eat I make her a choiclate Boost and choclate ice cream shack and I know I'm not suppose to but I crush all but 1 pill and I put it into her shack and she doesn't know that i've done it and she drinks her meds along with her shack. She began to gain some weight back and she is about 11 pounds back so she is about 120 again. I enrolled her into a daycare program called the PACE program and the med tecs. pick her up @ 8:45 am 5 days a week and they bring her back around 3:00 5 days a week and they do activies with her feed her lunch snacks every day andthere is a Doctors and nurses on staff all day. I'm glad I found this progrm is gives me a little time for myself to go to my physical Theropy appointments , food shopping, banking and the Doctors are releasing me to go back to my 3 hour a day little job @ the High School in town to work in the school lunch program. I get home @ 1:45 pm and vac the house do the few dishes and sit and relax for a bit until they bring her home again and then I make her supper give her a Sponge bath get her ready for bed and she tetires @ 7:30 pm until the next morning then everything begins all over again. Good Luck and see if they have any programs in your area to help you with your mom...

My heart goes out to you. My father in law was in a Nursing Home which he hated so our daughter took him to live with her. She was a Nurse and it seemed like a good solution. He tried to get up by himself and slipped and fell and had to be taken to the hospital. He began to choke on food and they advised putting in a feeding tube. He always loved to eat and the tube made him miserable. If we had to do over again.,we would not have had the tube put in but you always think the doctor's know best. Just remember, you are much closer to your loved one than any doctor and you need to do what you think is best for them.

Follow your mom's wishes. I've been in your place (5 years ago) and never had any regrets in letting my dear 90 year old dad go. Your mom has also lived a long life - she wouldn't want to live like this now - and she believes she'll go to a better place. All of that should bring you peace, in time. To me, honouring someone's wishes at a time like this is the most self-less gift one can give.

i pray that God will take my dad.
this in not in malice, but i wish for him a peaceful exit.
he is not the man he once was. who is. he knows his time is near.

It's only been 9 days! Give yourself a break!!

Yes, she's in pain and confused. And yes, she has a DNR. And double yes, you are a good person. The fact that you are agonizing about this is proof.

I'm glad you are alert to the long-term consequences of feeding-tubes and other invasive treatments. One of the things I found helpful was getting the doctors to write a "condition of use" addition to the order for the procedure.
My husband was on a feeding-tube for two weeks. At the end of that time, the tube was removed and he recovered well enough to eat on his own. If that doesn't seem to be happening for your mom, its time for another conversation with her doctor about quality of life. You need to ask:

1. Who is benefiting from the tube (the institution's death statistics, the
doctor's death statistics, the person on the tube, or your own guilty conscience?

2. Does the end justify the means? Is someone learning from this experience? Is there something about her condition that makes this situation unique?

3. What is your own highest principle? Life at all costs? Everyone getting along? The greatest good for the greatest number? Only when you know that can you make a sound reasoned decision.

Whatever you decide, someone is going to be unhappy -- doctors, aunts and uncles, her friends, your friends, the list goes on. Get the hospital's ethics chairman to walk you through the choices. Then take a deep breath and do whatever the two of you descide and know that you did your best. Hold your head up high and stick out your tongue at anyone who criticizes you.

I understand the context of this question, and the wrenching soul-searching it inspires.

It may help to think of the question as being about deciding if my loved should live or die AT THIS TIME. Ultimately (short of homicide) we do not have the power over life and death. Someone with a fatal condition is going to die of it, pretty much regardless of what we do. Giving certain drugs or treatments, putting in a feeding tube, etc. is not going to prevent someone from dying ... but it might postpone the event. For how long? At what quality of life? Those are the questions to ponder and get professional input about.

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.

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.

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

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.

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.

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.

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.

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.

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".

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

Bhenson, Huggs, prayers and thoughts to you. You've done the best that you can, may that bring you peace. You are cared for!

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.

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

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

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

BHenson,
I'm so sorry about your brother's attitude. It's hard to understand. Hugs to you and blessings.
Carol

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.