Expert: Mary Gordon - 9/15/2008

Question
I was reading some of your Q&A, you indicated a person does die from Alzheimer's and often it is due to certain organs shutting down. My mom just passed away, she had Alzheimer's was visited by her nurse just 3 hours prior and the nurse said she was doing great. Three hours later, she opened her eyes (first time in almost 2 yrs) then shut them and was gone. How does this happen? How can we be sure it was Alzheimer's if she didn't have any complications that day, nothing different just opened her eyes and shut them for the very last time? I am very confused over this disease. Any help will be greatly appreciated.

Answer
Laura, you poor thing - I can tell you are really struggling with your grief and feeling as though there should have been more you could do.

Be kind to yourself. It was your mother's time. This wasn't  anything anyone could have prevented or changed. She had a terminal illness that had taken so much from her. In the end, she was like a fragile little bird on a branch who just suddenly flew away into the sunshine.

What happens for many people who have Alzheimer's who are unlucky enough to live to the bitter end of the disease, is that they waste away to skin and bone, and ultimately stop taking in enough fluids or food to sustain life. The immediate cause of their death is usually dehydration and starvation - their kidney's shut down and that causes a cascade of organ failures. This is what happened to my mother in law. Many times we wished that she had had some other health problem that might have carried her off mercifully before that point.

I don't think my mother in law was suffering. She didn't seem to feel hunger or thirst like a normal person. She didn't seem to even know what the food was for - she had no interest in it, no matter how we tried to coax her with careful handfeeding. We knew she would not have wanted feeding tubes - and there is a lot of very good research that shows that feeding tubes don't prolong life and don't seem to alleviate suffering.

We actually prayed for her to pass gently and sooner than it happened just so she could be released from the prison her body had become - she was living her worst nightmare.  Like you, we would have done anything if it was possible to return our loved one to some semblance of health, where she might have gotten some enjoyment out of life, but it just wasn't to be.

You know in your heart there was absolutely nothing that could have been done to change the outcome for your mother. If she had had another medical problem you had known about that might have contributed to her death, what could you have done about it? I know you would not have wanted her to be prodded and poked and jostled in a hospital. You would not have wanted her to be frightened or hurt by tests and treatments that she couldn't understand. You also know that extending existence with no quality of life is not necessarily a kindness. That ends up being more about the fears of a family who can't let go than about what the most loving and kind thing is for the sufferer.  We have a very hard time just standing by and letting death come. We feel like we have to be doing something all the time to fight it - and I know you know, there can be worse things than a quiet death.

Even if she died from some undetected health issue, Alzheimer's was the reason your poor mum was in the state she was in.  At the end of the day, it doesn't matter what the exact mechanism of her passing was. After all, plenty of people die suddenly within weeks of a complete physical that found them in great health. Your mother may have had a heart rhythm problem, a stroke, an aneurism - and even if it had happened in an emergency ward the outcome would have been the same. A person in later Alzheimer's becomes so frail, they are like an egg balanced on end - it takes very little to tilt the balance to the end.

You did your best. She had good care, and she was loved, and it sounds like her passing was as peaceful and free of pain as anyone could pray for. I hope you can find some comfort in the knowledge that she's free, she's at peace, and wherever she is, she has left a legacy of a daughter who grew into a caring human being.

Mary G.