i was part time caregiver for my grandfather and, 20 years later, full time guardian for my mother, both of whom suffered alzheimer's disease. i have no children to burden should the need arise. the only other known family member to suffer was my grandfather's mother, so seems it came down just that one branch of my family tree, which i hope lessens my chance of being afflicted as even on that one branch no other brother or sister had ad.
compared to many cases i've witnessed, read about & heard of, both grandpa and mom, especially mom, seemed relatively alert to the end though they lost speech and mom eventually lost control of most of her body. (if you raised her arm to put on her sweater her arm would stay raised in the air unless you put it down again.) but she was able to answer questions simply, even 6 months before the end. once, after she'd lost the ability to construct sentences and verbalized only garble, she put a sentence together which expressed such sympathy for me that it puts me to tears when i just think of it today.
as my mother had much resource--house, money, insurance, loving children who were capable enough to study & handle the disease and who had the resources themselves including the time and who lived close enough to be so helpful--we were able to construct for her the illusion of independence for years beyond the norm. but even in stage five, it is not always possible or advisable to keep someone at home. in mom's case, though never before a violent person and not really violent during alzheimer's, she did become physical with the home care providers, even throwing things and forceably shoving them out of her house. (the violence stopped once we had her in a proper facility.)
mom became unmanageable for us in the house and so that became a safety issue. safety first is the rule. it was only after we placed mom in a nursing home that we truly realized the chance we had taken by not placing her earlier. once you take a person out of context you can see a lot more clearly the deficits and the dangers. fortunately, we had both the funds and the wherewithall to place mom in a fabulous facility where she received excellent care, though we visited often to assure that.
i do not believe that home care is adequate for alzheimer's victims. and i have heard too many stories of them getting away from the house and wandering the streets. some are finally found dead. for me, and as we were advised by the alzheimer's association, patients required locked facilities, not home care.
as i will not have someone like me to burden, i do consider suicide as an option to suffering alzheimer's disease. i don't see suicide as a moral issue, but rather as a psychological concern in some cases and as a matter of personal choice in others. i don't believe that suicide is spiritually penalized; yet every religion will tell you so. even in dream yoga it is supposedly forbidden to enter what is known as the clear light of death, though those who do are said to have died by the kiss of god. hey, i was just out for a good time.
in any case, it is so personal, that it is outrageous that suicide is against the law. for me, suicide, when well contemplated and understood by a healthy mind and utilized in a productive way, is the stamp on the statement that says: this is my life!
suicide is no stranger to me, having a bit of family history including: greatgrandmother (hanging), grandmother (pills & gas), at least one cousin (don't know method) & the latest was step-father (pills, gas, gun).
i agree with don that there should be available advanced suicidal directives but while i think they should be available and legal, i do not believe they should be, or should even be expected to be, binding. as i've mentioned before, even those who would bear the burden of carrying out such directive has to be able to live with themself too.
some people will hold on to anything, even pain. just to hold on. but there is no denying the stressed caused by watching someone you love deteriorate from alzheimer's. a good friend of mine just lost her mom to alzheimer's. mom didn't have it, her father had it. her mother died of a heart attack while caring for her dad. so now she has buried her mom and inherited what is left of her father. make no mistake, alzheimer's is brutal on survivors, even when there seem a few good moments, they only highlight the pain.
inevitably, most all of us commit suicide. but most of us are in denial about it. maybe we just don't want to admit it. whether we stop eating in our decline or refuse our meds. whether we are tired of a prolonged process of dying. whether we have continued to smoke throughout our years. or overeat. or eat badly. or drink too much. when we drive too fast. even when we are not being careful crossing the street, we take our own lives in our own hands.
why is it assumed so morally different whether we kill ourselves unconsciously & carelessly or when we end our lives willfully, with purpose and peace?