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  1. M

    My One Year

    My one year anniversary was last month. I actually decided to take that week off from work and spend it alone in Cape Cod, which was always a special place for us. I went to the beach at sunset on the very last day of this year of grief and sorrow. As I rode my bike taking in all the...
  2. M

    Grief

    Grief is such a strange process. You read about it, you hear other people talk about it, but it is not until you experience it that you realize how complex and unique it is. It's close to the 6th month anniversary of my PALS' death. My grief has changed. Someone once told me about the...
  3. M

    Passwords

    I'm sure this has been addressed in postings in the past, but I wanted to pass on a tip I wish I had followed while my PALS was alive: get your PALS passwords to internet accounts, bank accounts, etc. During the illness I felt weird asking my PALS because it felt like I was invading his...
  4. M

    A form of closure

    It was my PALS funeral and burial yesterday. My sister-in-law and I worked together to plan the service. My PALS was half Jewish (I was raised Catholic) but he was agnostic. His sister and I worked out a compromise to make the memorial follow tradition without being overly religious. The...
  5. M

    Nobody told me

    that it would hurt this much. I have never experienced pain like this before. It's only 24 hours since my PALS died and there is still so much to come... the burial in 2 days. I don't know how I'm going to go through that. I wish he had asked to be cremated but he wanted a burial instead. I...
  6. M

    My husband, my light

    My husband passed away early this morning. He went to the bathroom in the middle of the night and fell. The disease had advanced to a point where it was difficult for him to breathe without the ventilator. Unable to get up and to breathe, he passed away. I hadn't heard anything and found him...
  7. M

    Dental Care

    My PALS has exceeded his life expectancy, for which I am grateful. He is on hospice care at home. He has not had oral care in about a year and I am concerned about tartar buildup and also the fact that occasionally he grinds his teeth after yawning. He has bulbar onset. He is unable to hold...
  8. M

    Pulling rank

    Here's my vent of the week... I find myself being sensitive to some things that in the past would not have bothered me. I don't know if it is the sleep deprivation, the worrying or whatnot, but listen to my story. My sister in law has been very supportive throughout my PALS illness. If...
  9. M

    difficult neuro visit

    Yesterday we had our quarterly visit with our neuro. My sister in law and I spoke to him for a brief moment without my PALS being present. The neuro said that my PALS "will not live to see the end of the year." His FVC was at 20% three months ago, it was not even tested this visit. I said to...
  10. M

    Paralyzed in making caretaker decision

    Hi, please bear with me as I post my rambling thoughts on an issue I am going through at the moment. Unfortunately the time has come to get a caretaker for my partner for 5-6 hours a week. He has finally agreed to receiving all the Jevity 1.5 that the nutritionist prescribed (he had resisted...
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