(The post below was written on January 20, 2020. My mom passed on April 4, 2020.)
There has been a lot of change in the last two weeks or so. In short, we are beginning to prepare for the end. Then again, aren’t we always?
It seemed as though my mom was plateauing for a while, but in the last couple of weeks she has taken a sharp turn. She is essentially bedbound now, only getting up for meals and short periods of time to sit in her leather recliner. She is wearing adult diapers 24/7 now and taking her to the toilet should be limited as much as possible. She isn’t eating much, but hasn’t totally stopped eating or drinking. She is drinking Ensure after meals or in place of them. I would estimate that she weighs 80lbs or less. She is sleeping in a hospital bed as of almost a week ago. Yesterday we set up a new twin size bed for my dad next to her hospital bed, so he can still sleep next to her.
We are meeting with a team of private caregivers today to hopefully arrange 24/7 care in their home. While we have in-home care and hospice, neither are always reliable or consistent, which is very important in this last stage. Sad, but true.
Although with Alzheimer’s you expect decline, these recent drastic changes were completely unexpected. Maybe I was naive, but I thought that when I moved closer to home I would have time to work on some projects and visit my mom once or twice a week. I thought we would take smiling selfies and cute videos of us laughing together. I thought I would make her smile and laugh and that I had plenty of “I love you too”’s left. The reality is that my mom isn’t saying much at all anymore. She isn’t smiling or laughing and she isn’t reacting to me much. However, she was much more alert when I saw her yesterday. She opened her eyes a lot and even said “hi” to me. I will continue to cherish and hold onto those little gifts, no matter how small.
I have immense gratitude for my dad. Not only for taking the brunt of this disease on his own two shoulders, but for allowing my sister and I to help. While we were rearranging their room yesterday, Melissa was boxing up some books and found a library book. She jokingly asked my dad if it was a library book he never returned. He laughed and said, “I never took out a library book.” I am grateful that in the midst of his grief, he is still able to find humor and that even though it’s hard, he always tries to do what’s best for my mom.
Life has changed a lot since we left Florida. It’s not at all what I expected, but part of me wonders if my mom was just waiting for me to move home. I had my birthday last Friday, my mom’s is this Friday, and my sister’s is two weeks after that. While I don’t think my mom has more than a couple of months, this disease is truly unpredictable. I just hope she makes it through all of our birthdays and then I will do my best to let go.
Life is full of chaos and grief these days, but we’re taking it one day at a time.