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
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
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.
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
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.
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.
Thanks for your feedback.
-Hsw