So , it has been awhile since I last posted. Mom was diagnosed 1 month ago and I was at a standstill as to what should be the next step and should she come home with me. Mom and dad both live at a retirement home (they moved in Jan /11 because dad was not well, mom was like a 50 year old and very active),but her care was getting heavier. 1 1/2 weeks ago she slid to the floor and instead of calling me the retirement home called an ambulance, the paramedics said she was fine and mom did not want to go to the hospital but the home told her she had to go. When she got to the hospital the ER doc told mom that the home informed the hospital that they refused to take her back ( at this point I am pissed because the day before I had a meeting with the community nurse and social worker and told them that I did not want the home to all of a sudden say that she could not stay and they assured me this would not happen and we had time to plan where she would go. It was a rough day at the ER with mom sobbing that she wanted to go home to be with dad and then begging me to take her home with me. Here where we are if a home sends someone to the hospital and refuses to take them back the pt is assessed by PT and OT and if deemed to be Level 3 care thay are at the bottom of the waiting list for nursing home and they can spend up to 1 year in hospital waiting where as if the home had just left the paramedics get her up and called the community nurse to assess her asap she would have been considered a community emergency and would have been at the top of the list for nursing home.
So in my heart I knew that I could not leave her to die in the hospital away from my dad so the decision was made to bring both mom and dad to my home. They will have 10hr of care a day and I have spoken to my siblings (who usually tell me what should be done but not participate) and I spoke my mind and told them what they had to do to make this work. At this moment they seem to be in agreement. So now the paperwork and planning begins. We have an excellent ALS society who will provide any equipment she may need, we have purchased a stair lift , and I have found 1 worker who will be a blessing for everyone. My goal is to have them here by Easter and I will be taking a couple months off work to hopefully get a routine set up and find that second worker I need.
Mom saw her neurologist yesterday and a resp referral was made and Rilutek was started. I see a big different in the past month. She is now unsafe to use the walker alone, speech not understandable most of the time, and swallowing has worsened and she now has a minced mashed diet. What an awful disease!
She still has crying episodes and anxiety attacks but she does seem more relaxed since finding out she will be home with me. I have decided to keep her on the waiting list for the nursing home just in case.
Stress is still there but actually feel a little less since the decision was made. I pray that she will have peace while facing this monster and that I will make the journey more bareable.
Thanks for listening,