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Alzheimer`s Disease/End Stage
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Mary: My mother has been off IV for 6 days as of today. I knew in my heart and with her wishes, that a feeding tube was NOT the answer. She began having trouble swallowing over 1 week ago and a swallow study said she really could not swallow more than a few drops of liquid at any time. She also was refusing to eat. Mom does not talk except for yes and no answers. Your article is right on target for my immediate situation. I am just scared of her last days and what to expect. Hospice has given me a book that she will sleep alot and then have trouble breathing ... I don't know if I can handle that but will try to be there for her in the end. Like your husband, I am her only child and feel the need to be with her as my dad died 6 yrs. ago. Thank you for sharing your personal experience. It has helped.
Eileen, hang in, hang on, hold tight.
I know this rough on all of you who love her, but it doesn't have to be frightening. This is harder on you than on her - she knows its time to go, and is quietly shutting down and ready to move on. She's already let go - you are the one with the harder task of standing by and letting her fly. She is so, so lucky to have loved ones around her. In a real way, the times I've set by the bedside of someone I love in their last days are among the most treasured and transforming experiences of my life. Its hard to put into words - but think how lucky you are to be able to there for her, and be the priviledged witness to something truly holy - the gentle close to her story. Every moment of her life has been a gift, and now you have the gift of being there for her. What a journey its been!
Its so, so hard, and painful to have to say goodbye, but oh my goodness, you are a testament to the value of her life.
I'll be thinking of you - I know you can do this, and I know you will look back at this time, and know heart and soul that you did right by her, and be at peace with all of it. Its terrible and wonderful all at the same time.
Mary
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Answers by Expert:
Mary Gordon
Expertise
Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience
Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
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