DAY 5 - Monday
Today was day 5. I'm writing this completely mentally and emotionally drained after spending many many hours just sitting my mom's bedside. It's hard to fathom just sitting around all day can take so much out of you. It feels like my body is succumbing to the stress which has never quite happened this way. Before I was just tired/stressed of all the running around and lack of sleep etc....but now, I feel sick to the stomach all the time, my bones ache, my head is spinning. I feel like it takes so much energy to just be get through all this that is happening.
My sister left today so it was hard to see her go too. I watched her give mom a hug and a kiss before she left and it felt like someone punched me so hard in the gut.
Mom pretty much slept for most of the day. At around mid-day, the hospice chaplain came in to talk with mom but mom was sleeping. So we talked...we ended up chatting for nearly an hour. It was nice because even though I am not at all religious, I felt like I could open up and talk about my feelings. We talked about mom's life, my life and this disease. I told her about the genetics, the baby, losing my cousins, being the primary caretaker etc. It was strange to open up to a perfect stranger like that but it felt natural. She started to weep as I told her about what I've had to go through and all the hurdles I am dealing with.
After speaking with the chaplain, the social worker and the hospice nurse came in as well. We talked about all the issues with mom's care at this facility. They said that they'd figure out a way to get things in order. Mom woke up and shared her thoughts about her care as well. At one point, she whispered to the social worker, "I don't know if you know this but my daughter over there has a lot on her plate -- please help her".
Mom continued to talk about her fears and how she felt she needed more care and assistance. The social worker completely understood and said that for both of our sakes, that looking into a dedicated smaller hospice would more beneficial to both mom and I. So, we got the ball rolling on the residential hospice that my sister and I initially liked.