My husband Jay passed away on Saturday, November 22, 2008, nine months after his diagnosis. It was very peaceful and our son and our CNA were with us. Our daughter had spent the day with us with the babies and she got to say goodbye to her father.
It was a very difficult time and Jay did not...
I have not written for awhile, not since Jay got his PEG on August 22. It has been crazy here since the surgery. Jay cannot handle the volume of Jevity needed to stay alive with the PEG and the dementia has really accelerated. My PALS quit using the bipap not long after the PEG. He goes into...
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Windy,
I am so sorry for your loss. Jay does not have long. We are on Hospice now. I think the PEG gave our husbands more time, time they might not have had. I will keep you in my prayers. It is not easy for us. Love, Lee
Jay was diagnosed with bulbar on 1/3 2008. Got his bi-pap when Emory confirmed diagnosed on March 18.
My hubby had pneumonia before his PEG surgery on 8/22/08. Jay has difficulty speaking(more than usual) and at this point it seems to be because of his breathing problems so we went back for...
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Maggie,
We all share your pain. I will keep you in my prayers. May your loss and pain ease in time as you and your family remember with love your husband Cyril and all that he gave you from his heart. We all pray for a cure.
Lee
There are hummingbirds in my garden. My 33 month old grandson Jacob helped me make the sugar water and we hung up some feeders on Tuesday. Today I sat outside on a bench and watched the hummingbirds. G-d gives us ALS and he gives us grandchildren and hummingbirds. I try to keep this in...
Update
Thank you all for your help with the informing my inlaws' quest. We went to New York for my FIL's 87th birthday. My MIL obviously could tell something is wrong with her son. She has been calling every week since we went to NY to ask Jay if he's seeing a doctor or if he can go to NY to...
Chrismaya,
I just read your story about your mother. What an amazing journey! I am so glad you were able to make peace with her. You have healed yourself by this and no longer have to carry the burden of what your mom did to you. You have let it go. I wish you well on this journey.
Lee
Thank you all for your advice and input. I feel that I know more about the process now. Hopefully it will be a long time away but I feel more prepared.
Lee
Jessica,
I am so sorry that you are going through this. My mom died January 21, 2006, nine days after a massive stroke. She died at hospice. My sisters and I were not prepared for it happening so fast. We thought we were dealing with a stroke victim, not one who was dying. The time I spent...
Yesterday my PALS had an appointment at the Emory Clinic. We were there about four hours, the typical clinic visit. My PALS has a particularly aggressive form of ALS. He has fasiculations all over his body, some muscle atrophy, and he has bulbar onset. He has FTLD (dementia). However, he is...
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Barbara,
Just to let you know I tried to respond to your message but site wouldn't let me.
I am thinking of you and I hope the website angels can figure out how to make this work for you.
Lee