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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.
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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