When I woke this morning, I was thinking about my last post and the Rabbit Hole that is Alzheimer’s. The weirdest thing was that I realized I am in the Rabbit Hole with my mom. Alzheimer’s drags everyone involved with their loved one on a regular/daily basis, down with them. You cannot help but go down the Hole, too.
And mom is just so lost. She says, “I am not confused. It is not that, really. I just feel lost.” And watching her, and trying to converse with her, I sometimes feel lost, too. And trying to balance the outside world and the life I was involved with, well, it sort of becomes too much. And I can see why caregivers become so isolated. The thought of trying to take this show on the road is almost just too overwhelming. In addition, the fallout the next day makes the effort not something we want to even attempt. Mom will complain that she is bored and life is so quiet. So I asked her what she would like to do, or where she would like to go. She said, “You know, I like it simple and quiet. I want to stay right here.” All within a minute, a complete turn around. And dealing with that unbalance and mental chaos all day every day, well, it takes its toll. Yesterday, I was so frazzled, I did not get dressed. I showered at 11:30pm, when the house was quiet, mom was confirmed asleep, and I could just let it out. I bawled in that shower. All alone, in the dark. And I mourned my mom. I mourned the life she once had. I mourned the happiness she once had. And then I mourned, selfishly, for me. For my life I did not realize I was giving up, to take this journey with my mom.
Today, as I put my feet on the floor, I was determined to be different. I was going to be the light and life in mom’s life. I was going to be her support, in a jolly, and joyous way. And as I sipped my coffee, I talked to myself. I encouraged myself. Then mom got up, wearing her thick sleeping socks with slip on sandals, her flannel pjs and robe, earrings and lipstick. And she was looking around, not knowing where she was. She greeted me very quietly today. She had her pills and coffee. Then she sprang from the couch (remarkable in itself) and pretty much dashed to the bathroom….where she started vomiting. Mom does not have stomach problems. Ever. Since living with us, this is the second time in the past year she has done this. I am thinking we need to take this show on the road today, and visit Urgent Care. It could be a UTI or who knows. At 88 and with late stage Alzheimer’s, this could be significant or not. It’s another one of those things that keeps us in this Rabbit Hole of disease. The moment-to-moment uncertainty. I cannot plan a thing in advance. Nothing is certain before 1-2pm every day – because that is when her daily fog starts to lift.
Each day the journey changes. Some days I cannot even find the top of the Rabbit Hole, to get myself out and to be looking down and helping from there. The concern for caregivers is that we become so enmeshed in caring for others, we forget ourselves. We forget our other family ties and those who depend on us. And sometimes we extend life lines, hoping someone will grab on and pull us out. For me, my husband is my lifeline. He is there for me to fall back on, because he is often in this with me and he gets it. Somewhat. We have been approved for a Personal Care Assistant and I am starting the interview process for that. We are waiting on our Respite Care approval, and that should come soon. Once we have someone in place, I will begin to pull away, to pull myself out of the Rabbit Hole, and be a helper and daughter, rather than her sole source of care. Today, I am waiting to find out if we take this act to the local Urgent Care, or if she will continue sleeping and being in her fog until 3pm. But I am aware of the tentativeness of all of it. Even my role. Alzheimer’s is the most horrid disease I can imagine. So to my fellow caregivers, hang on…it truly is a bumpy ride. And to those watching, toss a lifeline now and then!!