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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.
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.
Most medications can be delivered via IV.
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:(
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.
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.
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 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.
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.
I am glad she's in the hospital where she can get proper care.