Follow
Share

My mom is 87 years old, unable to walk, has dementia and recently had a stroke. She didn't respond to commands by the hospital therapist, would not open her eyes, could not talk or move. A feeding tube was inserted in her stomach because of her condition. How long can one survive on a feeding tube?

When my mother was told last year she needed valve replacement surgery for aortic stenosis which had reached the severe stage the cardiologist asked her how long she wanted to live. She replied she still did and wanted more time to see her great grandchildren grow. She was a risk for this surgery due to all sorts of other health issues. She had it and recovered and has improved to a degree. But she still has many health issues which are manageable for now. Some of these stories don't indicate much quality of life and staying alive despite great suffering can be senseless. Some people linger on way past a word from above making the decision. If your family member can articulate the desire to continue to live then of course that is important. But if life just becomes one terrible ailment after another then what is the point of endless suffering. I know I dont want that for my end and will certainly make that point clear to my children. To a degree I have started to.
Helpful Answer (1)
Reply to Riverdale
Report

I mentioned last year that my sister was on a feeding tube for over ten years because of complications caused by ALS.
She passed away this week but not related to the feeding tube but rather her heart and everything else just started shutting down at the end of last week.
I am told she did not really suffer the last few days but her signs just grew weaker until everything just quit.
Helpful Answer (0)
Reply to OldSailor
Report

MarieAnne, I am working in the healthcare industry for over 25 years and agree with a lot of what you have said. The healthcare professionals are quick to send people to hospice. It is not a one size fits all. The second part of the problem is that as soon as they hear that the patient has a DRN/DNI order, people stop trying to save the patient. Do you all have any idea how many people in healthcare wrote my mom off to die, including my siblings who are nurses? I paid for my mom's funeral a few days after she suffered a ruptured brain aneurysm. The next morning mom woke up. Three weeks later I insisted on a feeding tube because mom's comorbities are only hypertension, Graves diease (thyroid disorder), severe osteoporosis, severe malnutrition due to poor eating habits and stubbornness. Since receiving the peg tube in September 2017, mom has gained weight. Mom was sent initially to many skilled nursing rehabs which she and I were against. On August 8, 2017 she was doing better but fell out of the bed, was not properly assessed, and it just went downhill from there. Three weeks later she suffered the ruptured brain aneurysm. I suspect it is a result of weakening blood vessels due to short fall. The idiotic physicians missed the impending hemorrhagic stroke. After the stroke everyone ramped up the chant of impending death. When my mom woke up and told me not to cry because she planned to be around for a long time, I was truly convinced that she can live a few more years. Subsequent skilled rehab centers turned out to be BS. Drugged up, no physical therapy, not turning the patient every 2 hours or less has resulted in multiple stage 4 pressure ulcers. I got mad on December 19, 2017, had my sister reverse the DNR/DNI, switched my proxy role from secondary to primary, took my mom to the best hospital in NYS, got her properly treated. She was sent back to the skilled rehab center. Within 5 days, and not finding the incompetent doctor, she nearly died of pneumonia. She was hospitalized. I battled my entire family, forced the issue of sending her to her own home with home care services. Recovery will be slow. She will never return to her normal state. Yet overall she is doing better than she did at all these nursing facilities, and having two RNs and a dietician weighing in on her prognosis. I started in clinical laboratories for the first 8 years of my professional life. Since then I have expanded in many areas of healthcare. Having extensive experience in health insurance and hospital administration, combined with my faith in God, I say that you will know when the time is right to sign a DNR or decide against a feeding tube. The healthcare professionals are not necessarily the best source for guidance. You have to keep in mind the politics and laziness of the healthcare industry. I had asked my mom if she wanted the feeding tube and she wanted to think about it. I told her that I can't watch her starve to death and that God didn't call her number. She has the tube and although the quality of life is not yet where I would like it to be. I know that she can get there but the cleanup of the complications due to healthcare incompetence is a long, painful job. I just need the blood so-called healthcare experts (yet lazy incompetent idiots) to do what they are supposed to do. So to all of you out there wondering what you should do, I say follow your instincts if you know that you have good judgment, and question what you are told by all of the so called experts, including family members. When the Maker calls us, we all have to go. When the Lord calls my mom, she too has to go. Until that time, it is not the job of the healthcare system to decide who should die and hasten their trip to the promised land. My other piece of advise to folks out there is that unless you have time to spend at nursing homes providing care for your loved ones, don't send them there. My mom is a living proof of what I predicted would happen yet my siblings and their "expert healthcare knowledge" did not listen to me. Today my mom is paying the price for everyone else's expert knowledge and blatant disregard for her desire not to go to skilled nursing rehab in the first place. With respect to health insurance, the strategic goal of those companies is to keep medical claims expense low. To that end they deny coverage. If the patient is a Medicare beneficiary, one would be surprised to know what the insurance company has to pay for if deemed medically necessary. Every month I am on their backs for my mom's care at home. I say to folks out there, research coverage properly and don't always believe what the hospital and health insurance folks tell you.
Helpful Answer (0)
Reply to NYhealthcare
Report
Liliana Sep 19, 2018
Hello;
I want to start by saying that you are an amazing, and intelligent person! Your response to MarieAnne was inspiring! My mother was recommended, and accepted to the hospice program after her last visit to the hospital! Her main medical problems are recurring UTIs. She has mid stages of dementia, but certainly not terminally ill! She recently developed dysphasia due to her dementia. Therefore, she can’t swallow solid foods. She has lost a lot of weight and is malnourished! I decided to put a PEG feeding tube! I cannot bare to see her starve to death! Much to my surprise, the hospice administrators and Doctors said that if I do that, that I must take my mother out of the program! Without hesitation, I said I’m going to do it anyway! She’s 94 but before the dysphagia, she was a strong puppy! The hospice people were brainwashing me and told me my mom had only six months to live. Well certainly if I don’t feed her, she’ll die in 2 months. The way I see a feeding tube for my mother is an umbilical cord just like the one she fed me with while in her womb. And as you say, when the creator calls, that’s when we go. Nobody knows when that will be! For now I am going to take advantages of all medical, and scientific advances to prolong my mom’s life without making her suffer in any way! Thank you for your eloquent answer! It gave me courage and confident in my difficult decision! May God bless you!!
(1)
Report
See 1 more reply
@MarieAnne Hospice isn't just about pushing morphine and basically letting people starve to death. It's there to make people as comfortably as possible, so they can die in a peaceful and dignified manner whether that means feeding them naturally or artificially through a PEG or IV.
Helpful Answer (2)
Reply to AgingCare2012
Report

Doctors are not God even if some truly think they are. My experience has been alike and quite different than most of you in many ways. My mother was diagnosed with Alzheimer over 10 years ago. Having a very light tremor in one arm she was referred to "supposedly" the best Parkinson specialist in our town. This man decided in less than 10 minutes that Mom had Parkinson and put her on something called Carbidopa/Levodopa, only because she was shivering in his cold office. To make a long story short, he kept increasing the dosage at each visit since I complained about the lack of progress and she had started to have these seizures which would start about 20 minutes after taking the medicine and would last at first 15 minutes and then progressed to 40 minutes of contortions and painful twisting of her limbs. By then he has increased her dose 3 times. I then decided that enough was enough and took her to another neurologist whom after seeing a video of Mom while in seizure mode immediately asked if she was on Carbidopa/Levodopa. When I answered in the positive she asked that I immediately stop it because it was obvious to her that mother did not have Parkinson but had Lewy Body Dementia, a form of Alzheimer for which Carbidopa is an absolute NO NO. Since the very second the medicine was stopped, Mom has not had a single seizure. However subsequent MRI confirmed that her brain had been basically fried by the Carbidopa which she had taken for over a year. She had become like a child, afraid of everyone and everything, becoming a danger to herself, so we decided to try a nursing home. The doctor in charge of that nursing home from which I removed Mom after only 3 months refused to allow a feeding tube for my mother when she could not swallow or eat for over 6 days. In his opinion to me via phone "Lewy body dementia patients didn't live very long, she was at the end of her life anyway and I should just let her go". This is from a man whom I have never seen face to face despite my practically living in that nursing home, so I am positive he only saw Mom once shortly after she arrived there. When she basically slipped into a coma, I had to forcefully call 911 and she was taken to ER. It took 24 hours of IV for them to finally be able to extract a sample of urine from her. She was totally dehydrated and had a vaginal EColi infection from improper cleaning. After 5 days the ER physicians advised me that if I wanted to see her alive for a while longer that I should get her out of that place which I did and Mom has been home now for nearly 4 years. We only had 2 hospital visits since because she had inhaled a little fluid and had problem breathing. She has been on a feeding tube for nearly 2 years now. We have stopped 14 different pills she had been taking before. They were all to correct problems caused by the Carbidopa. She no longer has high blood pressure, no dehydration, no cholesterol problem, no diabetes, no seizures, etc... She takes Acetaminophen for her arthritis and 1 suppository every other day because she no longer feels the need to go to the bathroom. She is bedridden but we try to get her in a wheelchair once in a while even though its difficult due to her extreme contractures. She mumbles a lot, recognizes me some days, even answers when she is awake and aware, sometimes she is in a daze or keeps her eyes closed for hours, but she is with us, like having a full grown child you might say. My questions were the following: If I had been born quadriplegic, or mentally challenged, would my mother have stopped feeding me or giving me anything to drink with the excuse that I had no real quality of life and would she have kept me on morphine so I don't feel the pain of starvation? (This is what hospice is really all about). My second question is: Is "letting someone go" consist of no resuscitation if the heart stops or HELPING the heart stop by withholding food and water? The answer to my first question is a resounding NO and to my second question: God had plenty of opportunities to take her if He had wanted to, no medicine and no doctor can save you if your time on this earth is up, that is mine and my mother's belief. Anyone in perfect health would surely die if food and water are withheld for a time, so don't kid yourself in thinking that you are letting/helping your loved one go, no, you are simply killing them. This of course does not apply to someone who is in a constant and/or deep coma or terminal cancer patients undergoing unbelievable pain. These are the people I feel hospice can truly help.
Helpful Answer (1)
Reply to Marieanne
Report

I agree. My parents do not want any tubes. So if that time comes, we will let nature take it's course.
Helpful Answer (1)
Reply to needtowashhair
Report

Just wonder why at her age in her condition a feeding tube was even considered. My daughter told me not to OK it. Once its inserted it cannot be removed in our state.
Helpful Answer (2)
Reply to JoAnn29
Report

I was told by the hospice doctor that, as the body starts shutting down, the body can't accept food.

In my dad's case he had a stroke, then a feeding tube because he couldn't swallow. It worked until he had 2 more strokes and was actively dying.

The liquid food wouldn't absorb. They could no longer feed him. The decision was made to let him "go". I could see for myself that he wasn't able to process the liquid. He passed within 2 days.

The hospice doctor explained that the death process is not like the living. The organs are shutting down and the patient is in another realm, that there is no hunger or thirst.

It was such a hard time but, because his stomach wouldn't process the food, the decision was already made for me.
Helpful Answer (2)
Reply to SueC1957
Report

I have heard that at the end of life you are no longer hungry
Or thirsty. Do you think prolonging his life in his current condition would be what he wants? I wouldn’t want that but everyone is different. Make sure your decisions are in his best interest and not
determined out of your grief. I’m so sorry you are going through
this.
Helpful Answer (3)
Reply to Vickie5297
Report

My father is 67 & had a bone marrow transplant for an aggressive non Hodgkins lymphoma.
Things didn't go as we hoped for. He has been in a hospital for 6 weeks now & last 3 weeks asleep. Wakes up very rarely. He cant talk or eat on his own. They put a feeding tube few weeks ago. His MRI result keeps getting worse & the doctor says he ither has a fludarabin neurotoxicity or his lymphoma spread to his brain. She says brain biopsy would tell for sure but she doesn't want to cause him any more discomfort.
She recommends we take his feeding tube out.
I am heartbroken & don't know what to do...
I just cant find peace in knowing that he will starve & dehydrate to death but she says patients like him won't feel it.
I don't know what to do.... help...
Helpful Answer (2)
Reply to irinak
Report

My sister has ALS and has been on a feeding tube for about ten years. Food was causing infections with her breathing device. She is in her mid 60's.
Helpful Answer (2)
Reply to OldSailor
Report

I am so sorry for all of you, you are in my heart and my prayers. I lost my wife to ALS. She was on a feeding tube. When I asked the doctor how long she could suffice off that type of sustinance, he told me "maybe two years." She passed away peacefully 19 months later. Without it, she was withering in my arms. God love you all. Take care of your loved ones, they took care of you.
Helpful Answer (4)
Reply to Jerry1141957
Report

I'm just entering into this dilemma. My husband, almost 86, has dementia and Parkinson's, got a feeding tube when he couldn't swallow in the hospital. He's now in a facility for 20 days, limbs locked, and not cooperating with staff commands. I have mixed feeling about the tube. He's enjoyed ridiculously good health all his life, said he didn't want measures to extend his life, but I feel, when actually faced with the end, he would want everything that can be done, to be done. My father was the same way, his last words to me were that he wished for more time. Sad, sad stories.
Helpful Answer (1)
Reply to SElise
Report

HOlly1257

I'm sorry for the loss of your mom. Your mom was cognizant enough not to have the tube. You followed her wishes so no need for you to feel guilty. Feeding tubes are just a nice way for the hospital to make more money. Reason, most people receive the bulkier PEG tube instead of the simpler J tube.
Helpful Answer (0)
Reply to zythrr
Report

I realize these comments are years old...but, you don't know how much better they are making me feel. My mother had Alzheimer's and stopped eating and only drank very little. She told me didn't want a feeding tube and now that she is gone (died 9/28/16) I am having such guilt that I didn't do a feeding tube. However, after reading what others have wrote I know I did what my mother wanted...no matter how much it is hurting now not to have her.
Helpful Answer (1)
Reply to HOlly1257
Report

That's a tough decision but as for myself, if the doctor sees no hope in recovery and putting a feeding tube only sustains my life in order for my family to feel better then I would rather pass on than be in that condition of lying there with no hope of living again. People keep holding on in case the person somehow has a miracle and comes back to life and they're holding on "just in case", but there are patients that can live for years as long as there is food put into their bodies for nourishment but the muscles waste away, other parts waste away, and you're only lying there waiting for the organs to fail or for some other bacteria to finally end the life that was really gone years before. I would rather go on and pass away than to hold on to nothing. Discuss this with loved ones while they can make their decisions known and it's always best to get it in writing by a POA or a DNR or some kind of will.
Helpful Answer (3)
Reply to Terry512
Report

My husband has been on a feeding tube since 2007.
Helpful Answer (1)
Reply to dmkclk92
Report

RoseAnn, You are rightfully concerned for your mother because she is ill. However, you are most likely not in denial nor fooling yourself, or you probably would not have asked your question. If you don't have the medical answers, that too is okay. If you don't have answers about life or death, none of us do!

Since you are praying for a good result, keep hoping. Now, I too am going to be praying!
Helpful Answer (0)
Reply to anonymous281963
Report

Each patient is so individual. My mom is turning 91 and has a feeding tube. 3 years ago she had a stroke -right after the stroke she was still eating but it slowed down and her food intake was changed to puree in the hospital. There was some concern that there was some impact on her swallowing from the stroke. We were advise to let her stop eating as she wished and let her go. We asked her if she wanted to go and she said no. We then chose the tube for her. She has been going strong since and about a year after was back to eating food on her own. It came with a lot of work on our part and testing to make sure that it was safe for her to eat. Swallowing ability was check. She became ill from severe UTI's several time once they took away her meals because she was vomiting-it was not the food but from the UTI -once she recovered we were forced to have her swallowing tested again. Now she only gets her fluid and medicine through the tube. Fluid only at night. She eats but does not drink so this night water feed is hugely important. I am very very glad that we made the decision to give her the tube. Those three years with us and the grand kids have been wonderful. Sometimes the elderly stop eating because there are problems not because they are ready to die.
Helpful Answer (0)
Reply to ems1471
Report

Roseann, im sorry that your mother has been so ill. Will you be able to care for her adequately at home? Is hospice an option? Either in a hospice facility or in a nearby nursing facility? I try to look at each hospitalization as an opportunity to reassess my mom's condition and prognosis.
Helpful Answer (3)
Reply to BarbBrooklyn
Report

My mother just had problems after her last meal, she was gasping for air, sweating to soaking her clothes and looking so scared at me, while on her commode, I was pulling alot of mucus from mouth while the ambulance arrived to take to the ER. After many tests found her esophagus had closed making her these new changes happen. After a few days a feeding tube and botox shot in her muscle there was in place. She is still at the hospital going on day 14 on day 15 she will turn 88 years old. She has severe alzheimer, dementia, past stroke, HBP,COPD,CHF, alot of swelling everywhere as she gained 16 pounds of water now, Low Thyroid, High Cholesterol, talks Polish and gibberish now, every now and then an English word comes out. I see she is very scared on what is going on with her as she doesn't know any more. She is about to be released as the hospital is talking about her coming home this week. This is a new change now. Unsure what to expect next, as she is frailing fast every 2 months now. Praying she pulls through this and gets better. Who am I fooling, myself in denial I guess.
Helpful Answer (2)
Reply to RoseAnn1963
Report

A person can survive a life time on a feeding tube, death won't come from a feeding tube but from illness or comorbidities that required a feeding tube in the first place.
Helpful Answer (1)
Reply to TammieLee
Report

My mil gave my husband poa several years ago and in that was also a section about her wishes as far life sustaining measures. She made it clear that she is Dnr and absolutely no feeding tube. I don't know how I feel about it. But that is what she wants so we have to follow her wishes if the time comes
Helpful Answer (2)
Reply to Turnofthepage
Report

My mom had the feeding tube for about 10 years. She was about 70 years old. Depending how far your father is willing to go, my mom should have died several times in those years. But father refused to let her die. When her hands turned black, and she was struggling to breath, and breaking in cold sweats that soaked the clothes and bedding completely, he would take her to the ER and have them aggressively treat her. Her heart stopped, and he had the DNR with him but he did not give it the ER. They resuscitated her. I can honestly say that mom should have died about 4 or 5 times in that 10 year span. Then father got a mini-stroke and became bedridden. I became their main caregiver. I recognized the signs of mom being close to the end. I made the decision along with my siblings to Not take mom to the ER. Mom passed away in her sleep last year.
Helpful Answer (5)
Reply to bookluvr
Report

I am currently refusing the feeding tube for my mother and allowing hospice to assist in her comfort. Your mother sounds like she is on her way out. Sometimes we have to let God be in control. I'm so sorry!
Helpful Answer (5)
Reply to 2muchpain
Report

tigellas, your father has all the rights to agree to the feeding tube. Most of the time it does not matter much if the body is shutting down. Support your father as much as you can, as he sees his own death coming too.
Helpful Answer (3)
Reply to pamstegma
Report

MY mom who is 86 is getting a feeding tube tomorrow. She too has dementia and has been without speech or any bodily functions, walking, nothing now 3 years. She stopped eating last week, she just wouldn't take anything by mouth for 4 days and so she was slipping into a deep sleep. My sister and father had her taken to the hospital and an IV was put in. The made her open her eyes after 24 hours, but she still would still not eat. I believe my mom would not want this tube inserted into her to give her more days of living in nothingness. My brother and I are alone in believing this, and since my father who is 88, still has power over her, there is nothing we can do to stop it. This is dreadful if this tube can keep her alive for years! I just look into her eyes and tell her, "I'm sorry" because this is not right. I needed to know the answer to my question, and seeing these replies makes me cry with sadness all over again.
Helpful Answer (4)
Reply to tiqellasmom1952
Report

I am curious as well. My dad had a stroke on Christmas Eve 2010 and is quickly approaching one year of feeding tube and trach. Not sure what might be in store for us. Pretty healthy otherwise.
Helpful Answer (1)
Reply to mkglamrgal
Report

Was the feeding tube your decision? My mom is in end stage Dementia and I opted for Hospice and comfort than a feeding tube. I feed mom thru a medicine syringe. She does well but has a small daily intake. My mom is only 66 and I couldn't see her living on a tube for years. She wouldn't want that. But that is my choice and obeying her wishes. I don't know about the legal aspect but my concern is that if I chose feeding tube and then decided to have it removed would that present a problem legally,since mom is unable to speak for herself.

The longest I have ever heard of was 5 years for an adult and 10 years for a child. But that all depends on health.

This is hard to see your mom unable to walk or talk. I struggle each day. I cherish each time she says a word or so that I understand. Its like hearing your child say their first words. Hospice is wonderful in helping mom be at peace in her last stage of life. If I am not mistaken your mom can qualify for hospice even with feed tube cause it is preexisting before Hospice approval. The hospice nurse told me that if I chose a feed tube for mom, I would have to take her off Hospice, get the tube, and have her reinstated.
So that is something you could check into if interested.
Helpful Answer (1)
Reply to yellowfeever
Report

Years is what i have heard. And my dad has been on one for 18 months so far.
Helpful Answer (1)
Reply to stormy
Report