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?
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 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.
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.
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
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.
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.
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.
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?
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.
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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.
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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.
Thoughts and prayers are with you during this dark time in your life~
Hap
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.
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.
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