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