Topic: Need support - must make end-of-life decision for family member
linky123
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Member # 19974
posted
I have an elderly aunt that I look after. She is terminally ill. She has congestive heart failure, fell back in Oct. and broke her hip and wrist. It has been all downhill since then.
She has now losing her ability to swallow, so we are anticipating a trip to the ER soon; she is getting dehydrated. She would probably require a feeding tube to receive nutrition.
She has a living will which states she does not want to be kept alive 'by life-sustaining mechanisms'. There is a catch though.
On our last ER visit, about a month ago, the ER doc asked her if anything happened would she want to be resuscitated. She said yes and I believe she was of sound mind when she said it.
Fast forward to the past week. She has declined considerably. I had not seen the feeding tube issue coming until the past few days.
We tried to ask her what her wishes are in regard to all the above, but she was not able to answer the question or understand it and kept falling asleep.
I think she is miserable and would not want to live that way, but how can you withold basic nutrition to someone and watch them starve to death?
I have been told by some that her statement in the ER trumps the living will, so we are obligated to forgo hospice care and send her to the ER.
I am at a loss, and realize this is a decision only I can make, but would just like you ideas, support and prayers
I also have c-diff; it's a mild case, but does make things more complicated than they already were.
I am at my wits end; I don't know how I can carry this burden much longer.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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kidsgotlyme
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Member # 23691
posted
So sorry Linky.
I have a good friend who is an ICU nurse and knows his stuff pretty well. When we were talking about doing a living will, he said that dying by starvation is one of the best ways to go.
He has put it in his living will NOT to be kept alive by means of any kind of a feeding tube. This is the choice that we have made also. I trust his judgement because he deals with this kind of stuff a lot.
He said that you don't feel hunger.
No way would I let them put a feeding tube in her. Just my opinion.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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linky123
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Member # 19974
posted
I wouldn't want one either, unless there was some quality of life. She has none.
We intend to have our living wills changed. If you look at the wording in many of them, the language is so ambiguous, it can be interpreted in different ways.
An RN told me there is one that lists all the possiblities and you can check a box next to each one, whether you want it or not.
Then there are no questions.
No way will I put my husband and kids through this.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
From what I was able to take in of what you wrote, the thought I had is to take the next step and don't think about the steps after that.
Sounds like the next step is to get her to the E.R. Yes?
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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In my mind the situation in the previous ER was based on circumstances at that point in time. Her quality of life has since deteriorated and the written living will would now be what a decision would be based on.
I think you have a couple of choices -- either take her to the ER or contact a hospice facility directly. They could evaluate her situation and provide painkillers if needed. Or you can just continue on at home.
If you do go to the ER or hospice be sure to take a copy of the living will with you.
Sorry you have to go thru this.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Kam,
Yes, we will take her to the ER when she gets too dehydrated or her BP drops. But the inevitably, I think the feeding tube issue is gonna come up.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Bea,
What you say makes a lot of sense. I guess we have to base our decision on the here and now.
I have a call into her md to discuss the living will and how to interpret it in light of current events.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Linky, I'm so sorry for you and your family and this tough time you're going through right now. You said :
quote: She has a living will which states she does not want to be kept alive 'by life-sustaining mechanisms'.
Life-sustaining mechanisms = feeding tube.
quote: On our last ER visit, about a month ago, the ER doc asked her if anything happened would she want to be resuscitated. She said yes and I believe she was of sound mind when she said it.
That is to cover the ER staff's conduct during her visit. They need to make sure they do what they're supposed to do during that patient's hospital visit.
and...
quote: I have been told by some that her statement in the ER trumps the living will, so we are obligated to forgo hospice care and send her to the ER.
The two have nothing to do with each other. They are two separate events. The ER wish regarding resuscitation mentioned nothing about "life-sustaining mechanisms".
Above all, you need to be comfortable that you are doing what she wants. You are so precious for trying so hard to do just that.
and... a Living Will trumps all, that's why people make living wills.
Posts: 797 | From New York | Registered: Feb 2008
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posted
my thoughts and prayers go out to u and you family.
-------------------- misdiagnosed for 19yrs until 2007 and trying to be positive for the future Posts: 21 | From mt.juliet tn | Registered: Feb 2011
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Thanks Carly for the clear-headed advice. I am so frazzled right now, I can't think straight.
I am so thankful for all of you right now.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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linky123
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posted
Thank you LIQQUIDNAIL.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Thank you pab!! I'm printing that out! I have not done a living will because it's so ambiguous to me and I've been needing to sit down with someone who can tell me more about it before signing one.
But I SO NEED ONE!
Thanks!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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linky123
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posted
Thanks Pab; I'm printing it out too!
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Hospice is the place to go, most likely. They will help you with these issues. Will probably suggest painkillers if necessary, and water. No feeding tube when she is no longer able to eat on her own.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
The quandaries that technology gets us into...
I'm sorry that you are having to make these kinds of decisions, it isn't easy either way.
Praying that it God would give you wisdom to know what to do! {{hugs}}
Posts: 265 | From Oregon | Registered: Aug 2009
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
sickandtired,
You are right about the technology. Thank you for your prayers. I am truly grateful.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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Camp Other
Unregistered
posted
linky123,
Just writing to say that I am sorry you are in the position to make this decision, and I'm glad you are asking for support and help.
My grandmother was dying of cancer, and with her, we decided on hospice. Everyone agreed it was the best thing we did at the point we did - they were wonderful to her and comforting for us.
Each situation like this is an individual decision, and never an easy one to make. I wish you strength and support in getting through this time.
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RDaywillcome
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Member # 21454
posted
My daughter is a director of nursing and has told me that you don't feel anything during starvation.
Hope this helps some. God Bless you and whatever your decision will be.
Posts: 1738 | From over the rainbow | Registered: Jul 2009
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Thank you camp and rday.
Yes, it is hard. We've been here before with parents and an uncle, but the situation wasn't as complicated.
No matter what the circumstances, it's not easy.
Please keep Alice in your prayers. Thanks.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Saying prayers for you and for your Aunt Alice.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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linky123
Frequent Contributor (1K+ posts)
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posted
Thank you AlanaSuzanne.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Hi Linky 123, I am sorry to hear about your Aunt.
I am not new to the board, forget my password and old e-mail address so I had to re-register! Was Gace 24.
Just some thoughts. Your Aunt might of been scared when she went to ER last month and when the MD asked her she about wanting to be rescitated and she said yes.
And also now her situation is clearly different. She has pain, she is miserable, and her quality of life is not good.
I agree with Carly Bea and Lou, a living will is a legal document and your Aunt executed it when she awake and oriented, so a doctor/nurse should honor this. Something said in the ER one month ago does not trump this.
I am a nurse. Not sure by your post if your Aunt lives with you. One thing you can try to do is call the doctor who is following her and request a hospice consultation. You do not need to go to the ER for this.And if you can hospice on board quickly, if might never come to her going to the ER.
Hospice is wonderful. They can give her pain meds, make her comfortable. Oxygen can also be given as a comfort measure, not life sustaining. They can also help you and your family by providing support, someone to call 24/7 to talk to in end of life decisions and guide you. It is too hard to do this by yourself, especially when you are sick yourself!
Also please dont' think of your Aunt as starving to death without a feeding tube. With pain meds and comfort care(simple like combing her hair, or holding her hand) you are helping her pass the way she wants to into the next life and honoring her living will. She is not starving, she is getting ready to move on.
Will say a prayer for your Aunt Alice.
Grace
Posts: 27 | From central nj | Registered: Mar 2011
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Hi Grace,
I did talk to her physician about the question at the ER and he said the same thing. Something said in the ER would not trump her living will.
He talked to me at length and helped me understand her condition, as well as how to interpret the living will.
I now feel as comfortable as I ever will about letting the hospice come in and take care of her.
I have to honor her wishes. She is now on medication to make her more comfortable, which is a relief. She was in so much pain.
I have c-diff and can't go to see her, so probably won't be there to hold her hand at a time like this.
This is so frustrating. I can't believe I came up with this disease at a time like this.
Thank you for your prayers; we need them.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
So glad to know her name, linky! That helps when praying!
It's so sad that you cannot be there to hold her hand. That makes it even tougher on you.
I'm glad to know that hospice is there now.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
The RN in charge of the assisted living let me come sit with my aunt tonight. I think she knew I was there. I hope she did.
She is comfortable, and in no pain that I am aware of.
I am glad we had some time together.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Hi Linky, I am truly sorry and sympathetic to your situation. It is a terrible thing to go through and I am glad to see so many offering you support.
I nursed my husband through pancreatic cancer at home for a year, while also caring for our new 3 month old baby daughter and two young sons.
I never would have survived without hospice care. We were the first family in the county to receive it....at home. A doctor came to see us often, a nurse came daily to bathe him and support me, a therapist taught us on our living room floor new relaxation techniques, our church members were there daily, our neighbors pitched in. Even my ex husband came out from Texas to help the boys and all of us get through it. The newspaper did a whole page spread of photos and our story and that of our caretakers.
There are various types of hospice care. My mother received it in an assisted living place where she lived and where she endured ALS. She had a feeding tube, and that was not really a big problem for her. Losing her speech was a terrible loss, particularly since she was so gregarious and remained sharp.
She had a bad fall and was being treated with morphine for the pain. I tried to talk with her on the phone via her synthesizer but all she could do was cry. My dad had died a year or so before and she was broken hearted.
My son went to see her because I was too ill to travel 3000 miles. When he showed her a video of me "swimming" in the pool she smiled a huge smile. He told her of my great progress.
Shortly after that she died. He did not think she looked that far gone and was mystified. We concluded that she was content to see my progress and ,more significantly, we feel that a sympathetic nurse may have given her just a little too much morphine.
We were relieved that her suffering was over. Her niece suffered from ALS for years, totally paralyzed in a wheelchair unable to speak, swallow or move. I did not want that for Mom and I would thank the loving nurse if I knew her.
I don't know if I would have had the courage to remove her feeding tube had she gotten much sicker. We were told that she was dying, but her care was excellent and her pain was mostly from loss of dad and loss of her ability to communicate. She was quite aware of her situation but unable to speak or write her wishes.
My suggestion is to research hospice care options....maybe through your hospital or, better yet, a cancer center. A hospice is often a very peaceful place with loving caretakers and with other people and their families going through a similar process.
I had to stay home to care for my kids and because I promised my husband to keep him at home in our bed. He knew I would give him a morphine shot whenever he needed it....any time night or day. The surprise was that he needed far less of it once we got him home!
Had I not been able to do it and we had to put him in a hospice care facility I don't think it would have been terrible, although my constant presence soothed him. The kids did their homework on his bed (we put one up in the kitchen for him) and their friends, pets, neighbors were all there with him.
People go through this every day. Get the best advice you can from hospices, go visit one or two. Then perhaps your mind will be at ease and you will have help and support with those big decisions from people who have the kind of experience you need.
PM me if I can be of help. I promise to reply asap.
Love and prayers, Farraday
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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chiquita incognita
Unregistered
posted
Oohhhhh my friend! I feel for you, big-time! I will never forget when we went through this with my father. He had no living will. Something happened and he was in a semi-coma, unable to make decisions for himself.
That left us siblings in the absolutely cringingly *agonizing!* position of having to make a life or death decision for our own father!
There is no agony so severe or intense. Again I really feel for you, deeply!
We all disagreed, vehemently. One sibling had already buried an x husband and was never going to go through life support again.
The other sibling said he would need 30 years of therapy if we let our own father go.
What could we do? Good god!
NEVER LIVE WITHOUT A LIVING WILL! THat's all I can say.
Something miraculous happened, and we were all spared the choice.
My sister prayed for a sign that we would know what to do.
My father woke up from his semi-coma. He had been having moments of wakefulness, but truly they were moments. Suddenly, he was awake for 45 minutes!
And flirting like MAD with the ICU nurses! We all giggled.
He made his own choice at that point. Yes, he wanted care and he wanted to live, even in the miserable quality-of-life condition that he would be in if he had survived.
But he passed on of natural causes, only one week later.
Thank god!!!! We were spared a permanently emotionally scarring decision that we may or may not have recovered from. God it was tough!!
I will indeed pray for you and think of you. I may not know you , but I send you my absolute support and my deepest hugs.
May all be well and happy for you---singular, plural---in the end. May all go smoothly and well. Remember that things happen as they are meant to. The divine will has much greater power than we do. Ask for divine intervention and a sign that you will know what to do. Maybe it will come.
Blessings and best wishes to you. In death we know to cherish the value of life. And love. What is life about after all but love itself? Love all people in your life, be on best of terms as much as possible, avoid the toxic ones and be good to your own self. Do all that is most important to you ,stay close to those you love. And know that your loved one will be watching over you from the other side. May all be well. My prayers are with you, and my support. CI
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chiquita incognita
Unregistered
posted
PS the doctors talked to us about "comfort care".
Keeping his mouth moist even as there would be no feeding, so he wouldn't feel thirst.
Pain meds.
Things like that.
You can ask the doctors about this and what they can do to keep her comfortable, if that is the choice you make.
God bless you! And be well. Know that you are doing whatever you feel is right, no matter what. Therefore absolve yourself of any guilt. Your aunt will understand!
Love to all. Hugs. Best wishes, and visions of a smooth journey for all of you. CI
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