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Old 01-24-2007, 04:58 PM   #1
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Question Feeding tube? Pain?

We are not at this stage but I am thinking ahead (just in case).
My questions are:

1. When Mom gets to the point that she can't swallow, does this mean the end is very near?
2. If yes, should we bother having a feeding tube inserted?
3. Is there a choice between a feeding tube with nutrients or just plain water? (someone told me that dehydration is painful)
4. Can the family tell the Dr where to put the feeding tube (nose, mouth or straight thru stomach)? (Someone told me the stomach is the way to go.)
5. Is providing a feeding tube painful?
6. or the other way around... NOT giving her the feeding tube painful?
7. Is not providing a feeding tube mean we are starving Mom?

I love my Mom. I miss her now and will miss her when she is gone. My goal is to keep her as comfortable and peaceful as possible til the very end.
Her Dr was not helpful in answering my questions. His thought seem to be "she is gone already. don't worry about it". I told him, "No, you are wrong. She is not gone already. She is still physically here. This is her body. She still feels. I don't want her to suffer any pain. Unbelievable.
Thank you all for your time.
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Old 01-24-2007, 05:23 PM   #2
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Re: Feeding tube? Pain?

Dear Min, I too need to know the answers to your questions, and I don't. I do know that my Mom, years ago when she was still in her right mind, filled in a "Health proxy" declaring that she did not want to be resuscicated if she were ever in such a condition that normal life was not possible. She did not want to be fed artificially, and wanted to be allowed to die without heroic measures to prolong her life (which is often 'prolonging death'.) Mom had that paper witnessed and notarized and had my brother declared her spokesperson, to make any such decisions that had to be made.

It is a great relief to me to know that it will be her own choice, not ours, when the time comes. She made it clear she never wanted a feeding tube, whether nasal or any other type. Hospice nurses give sips of water and wet the lips of a dying patient, but I have been told they do not feel hunger or thirst.

I don't think that even if Mom had NOT made those decisons, I would want to do anything to artificially hang onto a day or a week more of 'life' when I consider the quality of life she now has.

I am praying for you and your Mom, and hope you will do the same for me.

Love,

Martha

 
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Old 01-24-2007, 10:10 PM   #3
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Re: Feeding tube? Pain?

I faced this same decision some years ago, and came to the conclusion not to go with the feeding tube. I really believe that grandma just forgot about being hungry or thirsty, the same way she forgot so many other things in her life. When she stopped eating, it was either her decision to do so, or she was no longer able to swallow, or she was no longer hungry. Whatever the reason, she did not appear uncomfortable in any way. I think it is far more uncomfortable for the family members to think about not eating or drinking, because it would be painful for us not to have nutrition. But we don't know what the Alzheimer patient is experiencing, and I think as much as grandma hated IV tubes or bladder catheters when she was hospitalized, she would have hated a feeding tube just as much. She would not have understood its purpose, would have tried to pull it out, and would have experienced the discomfort when it was manipulated. The surgical process for inserting a long-term feeding tube involves putting a scope down the throat into the stomach, and then making a connection between the stomach and the skin for the tube to be placed - it would be done under anesthesia in an operating room, and we did not want to put our 88 year old grandma through that trauma. Feeding tubes in the nose are very uncomfortable to insert, and those in the mouth interfere with speaking and any chewing/drinking the person might be capable of - they are at best a short term answer.

I would suggest speaking to a hospice or palliative care nurse about feeding tubes - they have a lot of experience with patients and the dying process. The usual thought is that dehydration is not uncomfortable for a terminal patient. I would also recommend the book Crossing the Creek by Michael Holmes, a hospice nurse who explains many aspects of the dying process, such as pain, nutrition, fatigue, confusion, etc. One quote I like from the chapter on nutrition is "Pay attention to what the body is saying it wants… or does not want."

Last edited by buckeye1; 01-24-2007 at 10:12 PM. Reason: add author name

 
Old 01-25-2007, 05:05 AM   #4
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Re: Feeding tube? Pain?

Quote:
1. When Mom gets to the point that she can't swallow, does this mean the end is very near?
Not necessarily .. I know of many patients on peg feeds (tube into stomach) and they've been going for 2 years+
Quote:
2. If yes, should we bother having a feeding tube inserted?
Well, its a family choice really. If you believe your loved one should be left alone to slip away, then that's OK. If you want them to stay around that's fine too.
Quote:
3. Is there a choice between a feeding tube with nutrients or just plain water? (someone told me that dehydration is painful)
Everything required in a peg feed is 'in the bag'. They don't need anything else. I really can't see how hydrating somebody is painful .. but then, I don't know everthing (I just think I do LOL LOL LOL).
Quote:
4. Can the family tell the Dr where to put the feeding tube (nose, mouth or straight thru stomach)? (Someone told me the stomach is the way to go.)
The doctor is a doctor for a reason, he knows anatomy way better than any lay person. Somach is preferable, but a nasal gastric tube does the same thing .. do your homework, it's a personal preference. (Peg Feeding Is higher on my list than a NG tube)
Quote:
5. Is providing a feeding tube painful?
Nope, not at all.
Quote:
6. or the other way around... NOT giving her the feeding tube painful?
well, you think about hunger pains .. I mean REAL hunger pains ..try living with it. Of course, in last stages, when they sleep the most,the don't feel that kind of pain anymore ... talk to the nursing staff, talk to the doctors.
Quote:
7. Is not providing a feeding tube mean we are starving Mom?
No. It means it's her time to go and your not going to prolong her misery. You will be told if her 'end of life' is about to happen.

Hope I've helped.

 
Old 01-25-2007, 07:09 AM   #5
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Re: Feeding tube? Pain?

My Grandmother (83) just stopped eating and drinking. The Doctor suggested a feeding tube. My Brother (her best buddy) said no, it would just prolong the inevitbale to no good end except to torture her. My Borther and Sister-in-Law are both experienced RNs. They both went through this with my SIL's mother (she was only 59) and they did not give her a feeding tube either. I was with my Grandmother at her bedside for her last two days. We gave her ice cream and a little water when we could to keep her mouth moist. As the end came closer she responded less and less. She never seemed to be in any discomfort. She just faded away. I believe my brother's decision was correct and she didn't suffer.

This was the oddest thing, however, through the entire dementia period, regardless of her delusions of seeing people and things not there, agressiveness, refusal to bathe, etc. she never forgot us. The night she died my B and SIL showed up at 9:00, I left at that time (was there all day and was going to come back the next morning). She was unresponsive and had been for about 3 hours. I thought this was it. Around 10:00 my B said she woke up, started talking and even asked about the baby they were expecting. B and SIL were shocked she was so lucid. She then told them to go home, it was late, so they did. She passed shortly thereafter. Interesting how she pulled it together for a short while for her favorite grandchild.

 
Old 01-27-2007, 01:21 PM   #6
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Re: Feeding tube? Pain?

Was no more....what happen to your grandmother was very normal when they have a dementia disease...they will often do that just before death....and it is cool. She knew internally what happened.

I've had experience with feeding tubes and no feeding tubes. If there is no or little mental function, if the body is all there is...that person does not want to have life prolonged. Three stories:

My best friends mother had a stroke and was given a feeding tube against the wishes of her daughter, at first she knew us and tried to talk to us. I asked her one time when I was by myself if she wanted to be "let go" she nodded and tears came....but then she zoned out and I couldn't get a dr and a lawyer to get there in time. She stayed on the damn thing for seven long years with no life other than shatting the bed because her daughter couldn't deal with it. I'm the one who had her cremated.....I curse her family for making her suffer. Her breathing was horrible the last two years and I could do nothing but look at her. she didn't know me those last years...her eyes were glazed. She had not signed any papers.

My father died last year and for three months he writhed in the bed begging to die. His pain was extreme. He had signed papers and had the living will. He filled in a "Health proxy" declaring that he did not want to be resuscicated if he were ever in such a condition that normal life was not possible.....no help to us. He wasn't a vegatable and pain cannot normally kill you. He wanted no extra food. No Ensure, no vitemins....they asked me that 500 times a day....can we give him some ensure? Geeezz...why in the hell would I want to fed a man in pain...why would I want to keep him alive? Freakin torture us kids why don't you? But....They had to ask. Finally we got his pain subdued enough that when he was lying still he didn't feel it as badly. Now....was I supposed to start giving him all stuff to keep him alive? I let him go. I starved him by offering him three meals a day and when he did not eat...I offered him no vits, no ensure, no koolaid, no nothing. He would drink some water. He developed C-Diff from taking anti-biotics. C-diff is a bacteria that lives in your guts....if too populous it kills you. You get diahorrea...constantly and he had to be turned to be cleaned. Geezz...that really hurt. It sucked. He was lucid and talking to me the moment he died. He was telling me he loved me the moment he died. I only wish he had died weeks sooner.


My stepmom had Lewys Body's disease, it's like Alzheimers but a little different. The patients have stiffness and hallucinations along with the gone memory. She just died before Xmas...her body broke down, she also had a living will and I was health care POA for her too. I had to tell them NOT to treat any of her skin disorders so she died from Septis, blood infection from bedsores. Skin is an organ....you don't feed it, it dies...just like the other organs. She was out of it for months. The last three weeks she ate very little. It took two hours to feed her. So i figure for 8 months she lived no life at all while we shoved food in her mouth. I hated it but as long as she opened her mouth we fed her. Nothing extra but they asked and asked and asked. She quit eating; we gave her pain meds; she got feverish and died. Her friends told me that if I'd done it any different she's come back to haunt my butt.

Needless to say....I'm a little messed up right now but I do know one thing....death by starvation and dehydration isn't that bad....lying in a bed in with shat, pain, and having no hope is much worse.

Call hospice...they know how to explain it. I only wish I had demanded my dad be put in the facility sooner but the really bad part happened over the holidays last year. THAT IS WHAT SUCKED. cheeps

Last edited by cheeps; 01-27-2007 at 01:23 PM.

 
Old 01-27-2007, 02:50 PM   #7
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Re: Feeding tube? Pain?

Thank you Cheeps for telling it like it is. I hope and pray the NH will repsect my Mom's wishes and the combined efforts of her 3 children (all grandparents ourselves) to let her go when the time comes. It is appalling. You wouldn't do it to a dog.

We hear such a hue and cry about right to life. Is THAT life? What about right to die?

Sent in the middle of a blizzard out here in Rural Indiana..

Martha

 
Old 01-27-2007, 07:36 PM   #8
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Re: Feeding tube? Pain?

Our Dad was sick with lung cancer and had filled out all his papers long before death and so when the time came he refused any life prolonging aides. It was difficult to watch and their were times some of us felt bad but he had suffered so much for so long that the end seemed more a blessing. Hospice provided such good care and kept him out of pain and we will forever be grateful. The last 48 hours we kept his mouth wet with a cool rag and also the swabs that were lubricated with a solution that hospice provided for us. We spent that time whispering our love for him and it actually made us feel we were helping in some ways and so all the family including the grown grandsons would take turns . Mom also has those issues taken care of however in our state if you are in a NH facility by law they have to place in a feeding tube. The lady up the corridor from mom has now got a feeding tube and her daughters are suffering for god knows how much longer. In our case we will be bringing mom home as a friend of mine did with her mom but in some case families would be unable to do that and so they may not have a choice. It's up to the patient and the families also. It's a tough thing regardless but Dad told us he was not in pain.

 
Old 01-27-2007, 11:15 PM   #9
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Re: Feeding tube? Pain?

I've never written or spoken about this because it remains the most awful thing I've been through, but I will do so here in case it helps out others.

My MIL, 97 years old, no dementia, had a stroke. It took the hospital a couple of days to work out that it was a severe stroke (ie the kind that she would not recover from, which sort of puts her in the ballpark of a disease like dementia). They inserted a feeding tube without consultation, before they worked out how severe it was - had they asked at that stage I can't imagine us saying no.

Despite the stroke, she was compos mentis, knew where she was, wanted to go home, could ask and respond to questions. She had a very heightened response to pain (eg if you kissed her gently on the cheek she screamed). Part of all that I am sure was that they inserted a catheter in a very brutal fashion and she felt as though she was being attacked/violated anytime anyone came near.

Although she was eating before the catheter incident, she completely refused to after - hence the feeding tube. It looked to me as though she had made a decision for herself. As general background, before the stroke, she had limited hearing, movement, and sight, and was in I think a fairly unique situation in that she was being 'cared for' by her 70 year-old daughter with dementia - naturally we were helping a lot but it was a situation that I understand she did not care for. On the other hand she refused any alternative arrangements........ I (and she I'm sure) thought the only reason she was staying around was her sense of duty in looking after her daughter. She often said "I'm 97 ............. I don't know why!!!!!!!!!!.

Two days after the feeding tube was inserted, we were called in for a meeting with a spotty seemingly 17-year-old 'doctor' and a social worker. The gist of the meeting was that we were heartless and cruel to have her on a feeding tube and we needed to make the decision to remove it (and starve her to death). The reasoning behind this was that she was 'unresponsive to pain'. To this day I wonder if they weren't in there jabbing her with needles.

Of course, none of this was my decision, but my DH was in such a state at being presented with this directive to make a decision to remove the feeding tube he was pretty much non-functional. Likewise his other siblings.

I managed to buy some time for her children by establishing that she was completely responsive - if you asked her very gently to roll over, open her eyes or mouth, she responded immediately (I did NOT try poking her to see if she felt pain). I told them that meant they did not need to make the decision right then and there, which hugely relieved them.

In the meantime I did a lot of reading about the situation - you can go out there and find terrible descriptions of evil children denying their parents food, and the patient clutching at the sleeve of passing nurses begging for sustenence........... it is just ghastly.

To boot, MIL was a devout Catholic and I found out that it was totally against that religion to deny food and water in those circumstances........

So, I'm sure she wanted to die, I'm sure she would not have wanted to violate her faith, I'm sure her children would never have gotten over making the decision to remove the feeding tube. It was a truly awful and traumatic and impossible situation.

A few days after that the hospital called to say MIL was dying, and we were all able to be there with her. The nurse that had been so gentle with her, and therefore the only one she had responded to, made a special point of telling me they had given her a dose of morphine (which I know under the circumstances is likely to cause death).

I am rambling here, and no matter how much I ramble I can't begin to describe the awfulness of this situation. I think one lesson out of this is, if there is any chance of ascertaining a person's wishes beforehand, or failing that an agreement between siblings, it will make things much less traumatic when the time comes.

Last edited by georgie04; 01-27-2007 at 11:57 PM.

 
Old 01-27-2007, 11:39 PM   #10
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Re: Feeding tube? Pain?

Georgie...it was absolutely awful that she was treated this way. I can see the Dr or nurse not explaining to her the need for a catheter. They should never have tried to persuede family to give up on her as she was responsive...how callous and rude to ignore her lucidness!! This reminds me of how my best friends mother was right after her stroke. She could talk and do things...some of it was just backwards because of the brain tissue that had died during the stroke. cheeps

 
Old 01-28-2007, 02:44 AM   #11
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Re: Feeding tube? Pain?

Georgie, thanks for telling this. I know how painful it must be. It scares me half to death because Mom is only a step from this stage. And I don't know how much she and her kids wll have to suffer before it is finally over. I am terrified. Not about death, because I believe in eternal life. But about pain, suffering, fear, horrible decisions. Mom had a catheter also when her heart failure episode occured in December and just like your loved one, she screamed and protested and told us it was like having a baby. Very old women dry up and it is well known by medical professionals that such procedures need to be done with extra care and lubrication for anyone at an advanced age - but they don't bother. (this was at a hospital, in the NH they are wonderful in their caring attitude, thank God.) I am sickened by all this. Lord, how much longer? I pray every day that Mom dies peacefully in her sleep -she is 98.

Martha

 
Old 01-28-2007, 02:58 PM   #12
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Re: Feeding tube? Pain?

Martha, I hope that for your mother too. While everybody has a right to a dignified death, it seems especially awful to offer all these indignities to a woman who has lived almost a hundred years and transcended all sorts of hardships over that time to live a proud and successful life.

Thanks to those who shared their experiences of a peaceful death without feeding tubes, it is good to know that all the horror stories I read are not necessarily true. If I am ever in this situation again at least I'll be a bit better informed..

love Georgie

 
Old 01-29-2007, 04:35 PM   #13
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Re: Feeding tube? Pain?

About 15 years ago a very good friend called from Florida to say his Greatgrandmother had died at 99. She had a a major stroke and couldn't speak or eat or move much at all. When he told me that he had decided against a feeding tube I was appalled! He said he talked it over with her and she agreed by squeezing his hand. At 99 what were the chances of her pulling out of a major stroke? I was shocked because every winter for years she would get the flu and the Doctors would tell my friend let her go. He would say NO, treat her, she will pull through, and she always did and went back to her old self, living on her own. I was shocked because this was the only time he said not to do anything and let her pass. I had no experience with this sort of thing at the time. I thought it an awful way to die.

My point is that when you have no personal experience with death it does seem terrible. But once you are up close and personal you see not feeding a hopelessly ill and dying person in a whole different light. I have a feeling a very ill person may not have the same physical reactions to lack of food and water that a younger, cogent or healthier person (regardless of age) might. In the modern world we are so protected from end of life issues by doctors and nurses that it seems scarier than perhaps it would have 100 years ago when people died at home. For this reason I feel we have to give some leeway to people who make, what in hindsight, what seem to be "bad" decisions, we lack hands-on experience.

 
Old 01-30-2007, 02:36 AM   #14
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Re: Feeding tube? Pain?

I am trying to make sense of this strange world. Yesterday the vets who have been treating Barbaro, the champion horse hurt in an accident last year, agreed he was in too much pain and they euthanized him. Although people are saddened by this loss, they are not massively protesting the decision.

My unorthodox question is - why are humans not given the 'humane' treatment allowed to animals.

Martha

 
Old 01-30-2007, 03:58 AM   #15
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Re: Feeding tube? Pain?

Iím sorry I didnít reply to this thread earlier, I was out of town and when I got back I needed to think about what I would say - I donít want to offend anyone, but wanted to offer my honest opinion. Right when my Dadís health took a turn for the worse I read an article in the Wall Street Journal about feeding tubes. Feeding tubes work for people with a specific medical condition that makes them necessary or should be used as a temporary measure but arenít considered helpful to the overall condition of end stage ALZ patients.

My family had some experience with this issue - my Aunt had ALZ and was pretty far along, she wasnít swallowing as well as she used to, had an unrelated medical problem and my Uncle was horrified at the thought she would starve to death if she didnít have a feeding tube. He figured she would regain the ability to eat a little if fed with a spoon, but she didnít. Very soon he regretted having the tube put in, and was told there were legal issues involved in removing it. At first she would pull at the tube so her hands had to be restrained, eventually she stopped and later on she had no movement, speech or recognition left. He visited every day, and apologized every day for having the tube put in --- for 10 years ---until she died. My parents told me they never wanted to live like this so I had a very clear idea of my Dadís viewpoint.

My Dad had been doing pretty well, but had a heart attack and couldnít realistically bounce back from it. After that he lost interest in pretty much everything, especially food. Heíd let people know when he was tired, cold or thirsty -- but had no desire to eat more than a few bites each meal. I was worried the NH would push for a feeding tube, after all - they would get the same money and have a patient much easier to manage. I was very relieved when everyone working with my Dad told me they couldnít imagine him with a tube.

He didnít have the classic ALZ where his memory faded away, he had more problems with logic and reason. So I can take comfort in thinking my Dad was able to make his own decision, one last one -- he wasnít enjoying this anymore and thought heíd move on to something else.

So - hereís my answers to your questions.

When Mom gets to the point that she can't swallow, does this mean the end is very near?
-- Not always, most likely sheíll swallow less and less over a period of months, it will be very gradual, unless she has a stroke or some other health issue. The hospice staff told me people can go months on very little food and water, they take in only the bare minimum their bodies need, and more important just what their bodies can handle. Understand that ALZ patients wonít usually get to the point of ďstarving to death,Ē most likely they will die of something else first - infection, pneumonia, heart failure.

2. If yes, should we bother having a feeding tube inserted?
-- Iíd say no, your Dr. might not have worded it very well - but Iím sure heís seen this situation lots of times. The hospice people told me the vast majority of families that had a feeding tube put in an ALZ patient regret it. Suppose you have the feeding tube put in, the whole family has time to say goodbye and then she lives another 10 years just lying in bed.

3. Is there a choice between a feeding tube with nutrients or just plain water? (someone told me that dehydration is painful)
-- It might not make all that much difference - and there could be legal issues with this.

4. Can the family tell the Dr where to put the feeding tube (nose, mouth or straight thru stomach)? (Someone told me the stomach is the way to go.)
-- Stomach is best for long term - but is your goal to keep your Momís body going as long as possible?
5. Is providing a feeding tube painful?
-- Yes - it means surgery for the kind that is inserted in the stomach. Often surgery makes ALZ patients worse.
6. or the other way around... NOT giving her the feeding tube painful?
-- My Dad didnít seem to be in pain - he just faded away and died during an afternoon nap.
7. Is not providing a feeding tube mean we are starving Mom?
-- No, just because medical science gives us more options doesnít mean we have to use them.

I'm sorry you are in this situation -- good luck

 
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