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Totally not about elderly as my mother was only 60 but she had cancer, We were told she had a short time to live and like dementia there is no cure. She was aspirating on everything including water, pills, food, etc. She was offered a feeding tube but we knew it was only prolonging the inevitable death. She only lived a few short days due to being unable to eat or drink. She tried to drink for a few days. We used those sponges on her but within 3 days she passed away peacefully in her sleep.
Feeding tubes can be helpful if the person can eventually get better. If the person is having a good life just unable to eat or drink, then a feeding tube might be helpful. If the person is bedbound, in pain, generally unable to enjoy life or even live life then a feeding tube is more for the living than the person that is dying to prolong the evitable and make the living feel productive and prolong saying goodbye.
My grandma has dementia and has a living will in place with a DNR order. She signed this back before I was born (Over 37 years old) after her husband who had Parkinson's disease passed away. Since he was a veteran he had no rights and had a feeding tube and breathing machine placed on him. They had to restrained him because he would pull out all his IVS and his tubes on a regular basis causing more harm than good. She said it was a painfully long drawn out death and she never wanted to go through that. So sometimes people although the living want to prolong, do not wish to be put through that. Think about what your loved ones would want and if the tubes or IVS serve any purpose other than making the living prolong them being around. Think about their quality of life and their happiness. I wish you luck and will keep you in my prayers. End times are very difficult and often times require hard decisions to be made.
PLEASE say no to a feeding tube. As the body shuts down it has no need for food. The food will do more harm than good. Either he will vomit or the food may just sit in the stomach not being digested. The body is busy keeping vital organs alive brain, heart, lungs it is not going to "waste" energy digesting food. I know this is something that I am going to have to deal with probably very soon with my husband. I have told Hospice that I know I am going to be ruled by tow major organs in my body..my head and my heart. the heart wanting me to go one way with decisions and the head knowing I need to do the opposite. That is why I have hospice they will help me. If you do not have Hospice helping you through this I strongly recommend it. Hospice is a great comfort, providing knowledge, equipment, supplies and a shoulder to cry on. I think my journey would be almost impossible without them. A big hug to you and your brother.
Luckily my dad has a pretty clear Adv Medical directive, and both mom & I are in agreement that once he gets to the stage that "life extending measures" are needed, we will not be authorizing those. He'll get perhaps 1 visit for pneumonia, but that's it, given he's aspirating saliva at this point as well as food and drink.
He would be one of those patients that would pull the tube out, or otherwise do harm to himself. He can't use a CPAP for his apnea, and any form of catheter has been ruled out to assist with nighttime incontinence due to restless sleeper (he usually wakes up with the sheet wrapped tight around himself.... soaked of course.
After losing everything that made my mom herself, she lost all motor ability and was in bed 24/7 for I think about 8 days. Then she lost her ability to swallow. From that point - especially not being able to drink water, she only survived 2 days. Feeding tubes and keeping them alive with other artificial methods are cruel and circumvent the natural cycle of life (in my humble opinion, of course).
For momhouseme: I believe the "feeding tube" that is being mentioned in the previous posts IS the type inserted through the abdomen. like you mention.. (aka: Gastric tube or G-tube or peg tube. The other type, the one inserted through the nose, is a nasal-gastric tube, (aka: NG-tube) and is not intended for long term use. All the problems mentioned above apply to BOTH types of tubes, plus the addition of a few more for each. (potential esophageal erosions for NGs and potential perforations for either.) Both are very frequently pulled out by the confused/disoriented/uncooperative patients.
As for IVs, yes they can deliver a lot of medications, but not all. . And while you can temporarily deliver nutrition parenterally, for long term use you would need a central line (an IV that is inserted at the base of the neck, and leads to just outside the heart). Neither type of IV is an option in most nursing homes. The one that my mother was in does not do IV whatsoever. There are none on any of their patients. That type of care is usually for patients who will eventually get well.
And while the peg tube feedings can keep a body alive a long time. The question we all face is, would the person really want that, or is is only ourselves who simply don't want to say goodbye.
Momhouseme: Good Luck with Mom. Rest assured that feeding tubes are placed into the abdomen these days and not through the nose-to-stomach as years ago. Abdominal tubes are not that easy to pull out....but possible. Hope all goes well for you.
When a disease is terminal I try to look and see what the quality of life is. Is a feeding tube worth it? Is he enjoying life as it is right now? Will he miraculously get better? Would he want to continue to live the way he is now? If no advanced directives are in place remember the man he was before this terrible disease, what would that man have wanted?
dont start the feeding tube. My mom lasted 16 days with no nutrition or water. She had wonderful hospice care and was comforted with morphine. The body is shutting down. Let God take over when he wants your loved ove. Prayers for you and loved one.
No one can give you an exact day/time of death in the end stages of Alzheimer's. As the disease progresses, the swallowing reflex shuts down. The body is preparing to die. Humans can't live without water (fluids) for more than 3 days. I had a very difficult time with this with my father, who had a severe stroke (no Alzheimer's). Since he could no longer swallow, I asked for a feeding tube (a surgical opening in the upper abdomen with a tube placed directly into the stomach for feeding). As his condition worsened, the fluid was not being absorbed in the stomach. The Hospice team explained that he was in the dying process and it would be MORE merciful to NOT feed him. It would only prolong his eventual death and possibly prolong his suffering. I had gone through this phase many times with my patients but it's completely different with a loved one. Hospice was INVALUABLE at this time. Please read the following information taken from the Alzheimer's Association website-End of Life Decisions booklet, (available on line at alz Understanding treatment options; Be aware of the range of medical care available when making decisions to use, withdraw, limit or refuse treatment for the person with Alzheimer’s. Deciding on treatment options in the severe (late) stage of the disease can be one of the most difficult decisions that families face. Arming yourself with information and discussing options with your care team can be helpful. It’s also important to ask the medical team questions and to make sure you understand which treatments are suggested and why they are appropriate. Aggressive medical care; Individuals who have completed advance directives may have addressed the use of aggressive medical care — measures taken to keep a person alive. The essence of advance directives is to educate the family about what the person wants so that they can make informed decisions. Respirators; If a person with Alzheimer’s is no longer able to breathe independently, a respirator may be used to assist with breathing. While a respirator can help keep a person alive, it may also cause the person's body to undergo unneeded stress and can cause greater discomfort. Feeding Tubes; Feeding tubes are sometimes used if a person has a hard time eating or swallowing, which often happens in severe Alzheimer’s disease. However, there is no proof that tube feeding has any significant benefits or extends life. Tube feeding can also result in: › Infections. › Need for physical restraints (the person may try to pull out the tube, causing injury). There are other ways to feed a person with severe Alzheimer’s, such as a carefully monitored, assisted-feeding program. For someone who can no longer swallow, an approach focusing on comfort in dying may be most appropriate. IV hydration — liquid given to a person through a needle in a vein — may temporarily provide fluid when a person can no longer drink, but cannot supply the nutrition needed to stay alive. Increased hydration may also make the person less comfortable because it can cause difficulty breathing. Lack of hydration is a normal part of the dying process and allows a more comfortable death over a period of days. Using IV hydration can draw out dying for weeks and physically burden the person. If artificial nutrition and hydration are used, families will eventually need to decide if or when these treatments should be stopped. I am so sorry for you, your family and your loved one in this very difficult time. Our prayers are with you.
I have been crying while I read your heartaches. Thanks for sharing. I never cried before this. My wife can still do somethings. I'm not sure why as she won't remember past 1 minute. Mostly she doesn't know me or her own name. We're married 53yrs. She mostly just wants to be held and told she's loved. My wife is pretty much gone. Someone who looks like her and has her voice is here. I still love her and need to see and be with her everyday. I'll be receiving some help to watch her while I shop. I hate leaving her home. They thought I would take advantage to have some time alone. I don't want it. I want her for as much as I can have for as long as I can have.
My mother is in the last stage, her muscles or tighten up, i can't keep her head up sitting up in her chair or in the bed, she eats good but has started to throw her mouth back out of her mouth because it not soft enough. I have tried everything to keep her here but i don't know how much longer i can keep this up by myself
We would let our animals go n RIP yet we let our love one suffer There is no quality to there life anymore....this is so sad.. I would not want to live like this, I believe when it's no longer a good life in final stages, we should as families ask for help to end life:(
My mother did not have alzheimer's or dementia, but a disease that was never diagnosed - her brain stem cells died and gradually all muscles (including those associated with swallowing) ceased working. Because she had a DNR that she wrote when she was still functioning (her brain was alive and well until the very last couple of weeks) when she reached the stage that she could not swallow no feeding tube or other feeding method was used. It was not a pleasant period to remember but, even knowing the outcome, I would choose the same for myself.
my grandma has changed though out the past few months. sleeping a lot, eating less,having accidents in her pants, confused more, vomiting,i put her on baby food because solid foods she cant swallow, muscle spasm, and this week has been the worst she cant poop and she is in a lot of pain. for yrs I didn't care that she had alzhmiers I learned so much from this woman. we had so much fun. and made more memories but now it hurts to see that she is in pain. please tell me how much time she has so I know she wont suffer no one then this past wk
In six months my mother inlaw went from having conversations with me to a coma like state. sometimes , if I continue to ask her questions she will respond however its so quite I cant understand. she cant controle her urin or any of that. when my wife feeds her it has to be almost liqwid, it makes her coughf most of the time. she seemed to of went down hill fast. how long should I expect her to hold on to life. I love her but don't want her to go thrue this anymore. how long should I expect her to hold on?
Diane, He is still eating and drinking. That will sustain him for a while. The muscle mass will diminish. At this stage, infections can easily happen. Also, other health conditions, such as heart, kidney could hasten his inevitable outcome. Sorry for you to have to go through this. My mother in law is severe Alzheimers but has end stage heart problems. She is deteriorating very rapidly.
My dad who has dementia is 6'2 and is now down to only 145lbs. He only eats small amounts and drinks very little. He no longer can walk and sleeps most of the time. Doesn't talk much and when he does he mumbles. What is the prognosis for someone at this stage?
There are pain medication patches that are equal to (if not the exact med) morphine. Additionally, there is a saliva patch that goes behind the ear as I understand it; it helps to dry up the saliva.
my uncles got altzhimers and parkinsons. He has been bed bound since December. His legs are bent into a position and cannot be straightened. We give him build up and complain drinks to put on some weight. Could he survive years. Hope they get some cure to help him if its ever possible to help this stage. Its heart breaking.
Re brother. I heard the feeding tube can be traumatic and if they pull it out and it has to be reinserted. On the other hand, I would have the feeding aparatus that goes through the abdomen. My grandma had it and several patients are the nursing home are living because of it. I plan on trying that with my mom should the time come because I won't want to just give up on her. I guess i will try everything before i let her die but that's me and I do not expect others to feel the same.
Ediechai, does your brother have an advance health care directive? What are his written wishes regarding this kind of treatment.
If my husband reaches that stage I will not be allowing a feeding tube. I know it is against his wishes as written in the directive and also as he has talked about it over the years. A person can aspirate saliva and wind up with pneumonia even with a feeding tube. Dementia patients often try to remove the tube and that leads to restraining them. Ugh! Are the meds they are trying to get into your brother for his comfort? Are there any other ways they might provide this comfort?
I think that feeding tubes have a valid place in the range of care options. I just don't think that place is for end-stage dementia care.
However, if you have good reason to believe your brother would want this, then I would honor his wishes.
My brother is in the end stages of dementia and cannot swallow. He aspirates even the medicines. They are suggesting a feeding tube but I understand it is not the way to go. Can anyone help me?
I was surprised when I found an alternate description of the stages of Alzheimer's after seeing that typical seven stage list so often. you think when they reach the final stage, the end is near, but nope. This list broke the final seventh stage into many substages, each could last over a year. If I can find the site again, I'll post the link, though we are not supposed to post links, My Mom has also been written off several times, but she came out of it, not to restored memory, but to living and enjoying life without too much delusion.
Hi Neise099, There are actually many stages to end of life with dementia. My mom was in this stage for about 6 years. She couldn't walk or talk, was totally incontinent and bed bound. I see this with many of my clients with "end -stage" dementia, and from their stories I can tell you that each person is different. Some people can thrive for years with the right care- and others, even with the best care, can pass quickly. Know that Hospice doesn't mean that you have given up hope. Hospice will provide you with additional aides to help with bathing, a social worker who will be a comfort for you, a nurse who will visit weekly or more if needed, a Chaplin to guide you and all of her medication and personal needs such as gloves, diapers, chalks and even Ensure, My mom went on and off hospice for over 5 years- she was discharged 3 times because she wasn't "declining fast enough". The support they gave helped me both emotionally and financially. God Bless.
The end-of-life period, when body systems are shutting down and death is eminent generally lasts from a matter of days to a couple of weeks. Some Alzheimer’s patients die gently and tranquilly, while others seem to fight the inevitable. Reassuring your loved one it is okay to die can help both of you through this process. Decisions about hydration, breathing support, and other interventions should be consistent with your loved one’s wishes and advanced directives. I do hope this follow-up gives you more insight. Hap~
Our hospice Doc's and nurse thought it was mom's end last Tues . But She came out of it. I don't really think you can know how long it is going to take. Everyone is differant . She was almost back to normal the next day. It was weird. Of course her normal is not very good. But she is eating and drinking and talking.
I would say that since everyone is different, and their bodily changes could be different-there is no hard fast answer to this. Can you contact the people at the Alzheimer's Association? The telephone number is 1-800-272-3900 and will be answered 24/7. Still another contact you can make is with your local Hospice organization--they are wonderful people-and are VERY supportive to both the patient as well as the families involved. I have personally been down this road, sad to say, and reached out for answers, as you have done, Thoughts and prayers are with you during this dark time in your life~ Hap
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Feeding tubes can be helpful if the person can eventually get better. If the person is having a good life just unable to eat or drink, then a feeding tube might be helpful. If the person is bedbound, in pain, generally unable to enjoy life or even live life then a feeding tube is more for the living than the person that is dying to prolong the evitable and make the living feel productive and prolong saying goodbye.
My grandma has dementia and has a living will in place with a DNR order. She signed this back before I was born (Over 37 years old) after her husband who had Parkinson's disease passed away. Since he was a veteran he had no rights and had a feeding tube and breathing machine placed on him. They had to restrained him because he would pull out all his IVS and his tubes on a regular basis causing more harm than good. She said it was a painfully long drawn out death and she never wanted to go through that. So sometimes people although the living want to prolong, do not wish to be put through that. Think about what your loved ones would want and if the tubes or IVS serve any purpose other than making the living prolong them being around. Think about their quality of life and their happiness. I wish you luck and will keep you in my prayers. End times are very difficult and often times require hard decisions to be made.
As the body shuts down it has no need for food. The food will do more harm than good. Either he will vomit or the food may just sit in the stomach not being digested.
The body is busy keeping vital organs alive brain, heart, lungs it is not going to "waste" energy digesting food.
I know this is something that I am going to have to deal with probably very soon with my husband. I have told Hospice that I know I am going to be ruled by tow major organs in my body..my head and my heart. the heart wanting me to go one way with decisions and the head knowing I need to do the opposite.
That is why I have hospice they will help me.
If you do not have Hospice helping you through this I strongly recommend it. Hospice is a great comfort, providing knowledge, equipment, supplies and a shoulder to cry on. I think my journey would be almost impossible without them.
A big hug to you and your brother.
He would be one of those patients that would pull the tube out, or otherwise do harm to himself. He can't use a CPAP for his apnea, and any form of catheter has been ruled out to assist with nighttime incontinence due to restless sleeper (he usually wakes up with the sheet wrapped tight around himself.... soaked of course.
As for IVs, yes they can deliver a lot of medications, but not all. . And while you can temporarily deliver nutrition parenterally, for long term use you would need a central line (an IV that is inserted at the base of the neck, and leads to just outside the heart). Neither type of IV is an option in most nursing homes. The one that my mother was in does not do IV whatsoever. There are none on any of their patients. That type of care is usually for patients who will eventually get well.
And while the peg tube feedings can keep a body alive a long time. The question we all face is, would the person really want that, or is is only ourselves who simply don't want to say goodbye.
Please read the following information taken from the Alzheimer's Association website-End of Life Decisions booklet, (available on line at alz
Understanding treatment options;
Be aware of the range of medical care available when making decisions to use, withdraw, limit or refuse treatment for the person with Alzheimer’s. Deciding on treatment options in the severe (late) stage of the disease can be one of the most difficult decisions that families face. Arming yourself with information and discussing options with your care team can be helpful. It’s also important to ask the medical team questions and to make sure you understand which treatments are suggested and why they are appropriate.
Aggressive medical care;
Individuals who have completed advance directives may have addressed the use of aggressive medical care — measures taken to keep a person alive.
The essence of advance directives is to educate the family about what the person wants so that they can make informed decisions.
Respirators;
If a person with Alzheimer’s is no longer able to breathe independently, a respirator may be used to assist with breathing. While a respirator can help keep a person alive, it may also cause the person's body to undergo unneeded stress and can cause greater discomfort.
Feeding Tubes;
Feeding tubes are sometimes used if a person has a hard time eating or swallowing, which often happens in severe Alzheimer’s disease. However, there is no proof that tube feeding has any significant benefits or extends life. Tube feeding can also result in:
› Infections.
› Need for physical restraints (the person may try
to pull out the tube, causing injury).
There are other ways to feed a person with severe
Alzheimer’s, such as a carefully monitored, assisted-feeding program. For someone who can no longer swallow, an approach focusing on comfort in
dying may be most appropriate.
IV hydration — liquid given to a person through a needle in a vein — may temporarily provide fluid when a person can no longer drink, but cannot supply
the nutrition needed to stay alive. Increased hydration may also make the person less comfortable because it can cause difficulty breathing. Lack of hydration is a normal part of the dying process and allows a more comfortable death over
a period of days. Using IV hydration can draw out dying for weeks and physically burden the person. If artificial nutrition and hydration are used, families will eventually need to decide if or when these treatments should be stopped.
I am so sorry for you, your family and your loved one in this very difficult time. Our prayers are with you.
There is no quality to there life anymore....this is so sad..
I would not want to live like this, I believe when it's no longer a good life in final stages, we should as families ask for help to end life:(
Most medications can be delivered via IV.
If my husband reaches that stage I will not be allowing a feeding tube. I know it is against his wishes as written in the directive and also as he has talked about it over the years. A person can aspirate saliva and wind up with pneumonia even with a feeding tube. Dementia patients often try to remove the tube and that leads to restraining them. Ugh! Are the meds they are trying to get into your brother for his comfort? Are there any other ways they might provide this comfort?
I think that feeding tubes have a valid place in the range of care options. I just don't think that place is for end-stage dementia care.
However, if you have good reason to believe your brother would want this, then I would honor his wishes.
I am very sorry for your painful situation.
There are actually many stages to end of life with dementia. My mom was in this stage for about 6 years. She couldn't walk or talk, was totally incontinent and bed bound. I see this with many of my clients with "end -stage" dementia, and from their stories I can tell you that each person is different. Some people can thrive for years with the right care- and others, even with the best care, can pass quickly. Know that Hospice doesn't mean that you have given up hope. Hospice will provide you with additional aides to help with bathing, a social worker who will be a comfort for you, a nurse who will visit weekly or more if needed, a Chaplin to guide you and all of her medication and personal needs such as gloves, diapers, chalks and even Ensure, My mom went on and off hospice for over 5 years- she was discharged 3 times because she wasn't "declining fast enough". The support they gave helped me both emotionally and financially. God Bless.
Thoughts and prayers are with you during this dark time in your life~
Hap