AboutMary 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!
Expert: Mary Gordon Date: 4/12/2005 Subject: End stage Alzheimers
Question Dear Mary,
I wrote to you the beginning of March of this year about my father who was what appeared to be end stage. In your reply you gave me some honest and much needed information. My father passed away yesterday. He started flowing out large amounts of mucous at home and was having trouble breathing so my mom called for an ambulance. He stopped breathing in the ambulance and they inserted a breathing tube on the way to the hospital. He was initially hooked up to a respirator once he arrived in emerg as he wasnt able to breath on his own. Due to his poor condition his one lung collapsed while there because of the respirator. We were faced with a decision to have them put a hole in his chest area at the rib cage to pump up his lung which would have been very painful to him or take him off the respirator and keep him sedated with an oxygen mask on for some comfort on his final journey. We had 15 minutes to make this decision. I was the only one who couldnt at that time agree on letting him go but I did finally agree that this was best.As I sit here this morning,I do feel that we made the right decision. After they removed the respirator, gave him his first shot of morphine and the oxygen mask, and moved him upstairs to a private room we had a minister with us and we all held hands and prayed around his bedside. Not more than a couple of seconds into the first prayer and he quietly slipped away. The hospital said he might last 24 hours after the respirator was removed but he actually only lasted about 20 minutes. Had we decided on the invasive procedure, he probably would have died all alone during the procedure. This way he passed with some dignity and with all his family at his bedside. I just want to thank you for your reply to me last month. You said if you were a betting woman you would say no more than a couple of months till the end, well he lasted about 5 or 6 weeks and I thank you for your honesty as it was the only bit of realness we we able to get.
Thanking you again for the wonderful service you provide to people. It was very much appreciated and will always be remembered.
Sincerly, Bonnie Buckley
Answer Oh Bonnie, I am so very sorry for your loss. My heart goes out to you and your family. I hope that it gives you great comfort to have been there with him, and to know in your heart that you did the right thing - as time goes by, feeling that way is a blessing.
He was a lucky man to have had such a circle of love around him at the end. Think what a testament that is to what a fine man he was, and of the value of his life - and how very much he had to be proud of. He's free now, and at peace, and he went gently, with grace and dignity.
I'm glad to have been able to help, even in a small way. My mother in law's journey through Alzheimer's took a terrible toll and I swore that something positive had to come out of all that pain. At least if we can help each other, we can salvage some good from the misery.
