When and how do I decide to stop medication for my mom who has a gastric feeding tube and low quality of life?

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Mom is a Dementia/Alzheimer patient. Late august 2010 mom started to refuse the Ensure , water and taking meds. I thought this was because of being taken off of 40mg Namenda in a hospitalization 1 week prior. I couldn't accept that due to my mom's disablity, that I could let her not drink or eat. I didn't realize that it was her time to start shutting down. Now, 5 months later, mom has full time care at her own home, but always talks about wanting to die, and can do nothing for herself. She speaks and sometimes says very appropriate and meaningful things. Other times she is very agitated. She says that she loves me, smiles when she sees me and her grandsons, yet quickly gets agitated and wants to go back to her bed. I have two aids in the morning to walk her, just so her legs don't atrophy. She cannot stand, and walking is very difficult with even two people. I have tried to rehab her for the last 4 months, but I don't see any more progress; She likes to say Hi to me on the phone, but quickly gets agitated with me when I visit (twice weekly) . I think it is because she wants me there to rescue her or that i remind her of all the things she used to be able to do. She has a tube in her belly with tape securing it on her skin. She maybe takes sips of water in a cup. I have lately been considering evaluating her medications, thinking which ones should I cut out, that is perpetuating her existence. I have a DNR in place which was a big step for me. It is so difficult for me to be in such a conflicting position. I have tried to keep her healthy for so many years, and I feel responsible for her suffering now because there was no living will by her that addressed feeding tube. She did not let them pull the plug for her own mother(my grandma) and I did what I thought was right. How contradictory is it now to feed her artifically, yet praying that God takes her without me having to decide how long she should continue her life as is with her current medications. My one and only brother lives around the block from her, yet has seen her only once in 4 years. He has MS and is bedridden living in a hospital bed in his living room. He and his wife cannot deal with my mom and thus, I am the only one who has to make all the decisions. I've read comments about how long do you want to keep a late stage Alzheimer's patient alive with supportive meds, I just know that I will feel guilty and that I somehow caused her death. Yet she still talks to me and knows who I am and tells me she wants to die. I would want to die if I were in her shoes. I don't know what to do and any supports or comments would be appreciated. I feel so alone with this because no one in my immediate family can comprehend the gut wrenching feelings of loss, impending loss, and responsibility you have over your parents well-being.
Thanks

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Thanks Jenjilks, you have expressed what I am feeling and there is regret to having put the tube in. I know that this is not the life she had wanted and because of me making that decision, she is living her life this way. However, as a previous responder wrote, I probably would be suffering from guilt not having done that at that time. Your two cents is much appreciated.
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I've thought long and hard bout his question. I went in every day to feed my father once. He was unable to feed himself, except deserts (go figure!). I, too, wrestled with quality of life. If a patient no longer is able to feed themselves, they have no independence. I do not believe that withholding food is 'assisted suicide'. I do believe that force feeding someone is cruel. Now, I wish I'd let dad eat what he wanted.
It is about independence and respect for a human being.
If one is not hungry or able to eat, why force a tube into them? That seems cruel. Let nature take its course.
I saw people in comas being force fed food in long-term care when visiting dad. People lying back on reclining wheel chairs unable to walk, talk or communicate in any way and in a coma. It is a horrible existence.
Respect her dignity.
My late father was agitated, angry, in unmitigated pain and I bitterly regret extending his life as I did. I had no right to make that choice for him.
/my two cents
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When my Dad's health was gone he choose to come home and have what time he had left being with family at home. I listen to him and followed his wishes. Hospice came to the home when I called them and they advised on what service were available and what I could expect to see and for him to experience during the next 10 days to two weeks. I took family sick leave, Mom and I were his primary caregivers for almost ten years. Everyone was told that time was short. Dad slept alot but when awake he let us know this is what he wanted. Mom worried about things like he doesn't want his medicine anymore and stopped eating. I had to remind Mom that where he was going he would not need them any more. We had our minister come to the house and on his last day I feel this is what he wanted holding Mom's hand he closed his eyes and he was gone. Peacefully and at home. So if your family member has ever told you there wishes listen and remember this was their final request and you were just follow what they wanted as finally life choices. Everyone came to my home and said their good byes in their own way and had closure. I feel good about my desision to follow my Dad's wishes. Hospice will help you through this time even if your family is in a nursing home or hospital they will listen to you, provide available information provide you with everything from information to visiting pastors, nursing care. Give them a call. May God bless and keep you always your in my prayers. Lena
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As a nurse I have been asked this question often. I encourage family members to discuss the medications with the pharmacist and the MD to see the importance of each medication and the use of each medication.
You may find that many medications may be discontinued.
You may also, want to discuss the possibility of hospice in the future.
With planning, a hospice company can help you wean off meds and feedings.
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HELEN:

For the first time in this forum, I feel as if somewhere were squeezing my heart. My breath is becoming shallow, the tears are welling up, and my throat is aching as I struggle to hold them back. A bunch of emotions have taken over me -- helplessness and hopelessness.

I haven't felt like this since 1997, when my Dad's cancer continued to spread until there was nothing else I could do except make him comfortable. All the while hiding my true emotions so he couldn't see I was dying on the inside as I watched him unravel before my eyes.

At first I feared his absence, not his death. But as long as my sons and I keep the memories of all the things we shared that make life worth living, he'll still be here -- living in me.

Wish you the best my friend, and stay strong as you've always done.

-- ED
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Thank you all for your support. I have been emotionally preparing myself for her ultimate death, but it is the responsibility of her life that is very difficult be prepared for. All your comments have been very helpful and supportive. Thanks for understanding and being there.
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I agree with you that administering meds for her dementia doesn't seem to make sense. I wouldn't continue with those either.Continue to make her as cmfortable as you can and listen to what she wants. Sometimes it's hard to let go and your mom won't go until she knows you are at peace with yourself and the decisions you have made for her.
Agitation is simply a part of the disease. I stopped bringing my children to see my mom anymore for just that reason. It's too difficult for her to have too many people around. She always has things to tell me or things for me to find for her and once those chores are done, she, too wants to go back to bed.
I'm okay with it and I know it's the disease that has taken over. Those meds would be of NO help to her now. We just pray she never feels pain or suffering. It's all we can do.
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Even though it is horribly emotionally painful, you are doing the right thing, in my opinion, by insisting on continuing to feed her. I agree that as bad as it is to watch as she is fed through "unnatural" means, I think, afer reading your thoughts and feelings, that if you stopped the feeding, you know that the pain, guilt, and second-guessing of yourself that you would feel would be much worse than what you are going through now. You are a good, ethical person, who simultaneously wants to heal and comfort your mother, and also not see her live in a diminished quality of life. I pray that things go smoothly for your mom and that there will be no unnecessary drama, Best of wishes to you both.
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Don't let anybody tell you to please do this or that based on their story. Every story is different. The bottom lines are: First, you do not cause death, everyone dies, and your mom is close to it on her own. Second, if she's as present as you say then you can talk about this with her. Learn as much as you can about what she wants. Third, educate yourself about matters having to do with pain and discomfort: what hurts, what doesn't. Including what are less painful and what are more painful ways to die. Shift from thinking in terms of keeping her alive to thinking in terms of helping her die with as much comfort as possible. I don't mean hurrying it up necessarily. I mean not costing her discomfort by trying to hold it off forever. This is as much about biology as it is about feelings. You might want to read Sherwin Nuland's book "How We Die." It's very helpful. Fourth, there are people who can help you with this: talk to the hospice people. Get advice about comfort issues from her doctor. If her doctor isn't a good resource, talk to your own doctor. Go to a website called www.compassionandchoices.org. They also have counselors you can talk to. The organization also assists people who wish for physician-assisted dying, but don't assume that means they will tell you to pull the plug, they will help you with the real issues. You are not alone and you don't have to reinvent this wheel. People have been going through this forever. Hang in there and get the information you need.
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In the 1990 case of Nancy Cruzan, the U.S. Supreme Court answered the question of whether food and water are medical treatments that can be declined. Cruzan was in a car crash that left her in a persistent vegetative state. At the insistence of U.S. Attorney General John Ashcroft, who was then Missouri state Attorney General, Cruzan was kept alive by a feeding tube despite the wishes of her family.

Cruzan's parents fought for the better part of a decade to have her feeding tube withdrawn. Finally, in a landmark decision, the Supreme Court ruled that receiving food and water through tubes administered by nurses and doctors constitutes medical treatment and that if there is clear and convincing evidence about what a patient would have wanted, then the feeding tubes can be withdrawn.

The Cruzan case ensured that if Americans take the time to fill out a living will or designate a decision maker, they can still exercise their right to stop all forms of medical care even if they are unable to communicate.

Not a form of euthanasia
Ever since then, medical organizations, critical care specialists, hospice workers, numerous state and appellate courts, and legal experts have all affirmed the soundness of the Cruzan decision. If you do not want blood, a ventilator, kidney dialysis, insulin, food and water, or any medical care at all, you can refuse it. And even a person in a permanent coma or vegetative state can exercise the same rights either through a living will or their closest family member.

Claims that withdrawing feeding tubes is cruel and a form of euthanasia are mistaken. Patients refuse life-sustaining treatment all the time in American hospitals. Jehovah’s Witnesses refuse life-saving blood transfusions and their subsequent deaths are not treated as suicides. Dying patients request that ventilators and dialysis machines be turned off and no one considers doctors' decisions to honor these requests cruel or a form of euthanasia. So why make a special case about receiving chemicals through feeding tubes?

All people, even those in permanent comas or vegetative states, are human beings deserving of compassion and care is important. But what confers dignity on the sick and the dying is not about artificially feeding them against their will, but about finding ways to let their will be respected.

The right to control your medical care is one of the most fundamental rights you have. Respect for your liberty means that even if you are unable to assert your autonomy, others should be able to do so for you or you should be able to write your wishes down so that others must respect them.

No one should be forced to have medical treatment that they do not want. Nothing could be more cruel or disrespectful of human dignity.
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