It is difficult to confront your own feelings about your loved one with Alzheimer's. You love that person and want her in your life. You hate the disease and what it has done to her. You miss the person she once was and want her back. And you also want the misery to end quickly - both for you and for her. That is not an easy pill to swallow. To wish death on another person? How awful! But it isn't so much death as it is a rebirth into a world without pain and agony and misery.
But how do you confront the actual death of that person when it finally arrives? That is the dilemma I am dealing with right now.
This past Saturday, I was deeply napping because I was really sick. I am not a napper. So, imagine my annoyance when my phone started to ring. I figured I could ignore it, but I recognized the number as that of the nursing home where my mother lives. They were calling to tell me that my mother was having "an episode" and wanted to know if they should send her to the hospital. Apparently they had woken her up from her nap because it was time for dinner. She was short of breath and her already high blood pressure went up even more. She wasn't in any pain and oxygen seemed to help her calm down. Her numbers went back to normal and they assumed it was a panic attack. I figured if she was okay, it probably was a panic attack. After all, she has dementia and they woke her up. She was probably confused and got scared. I had the smallest twinge in my stomach, similar to when my father went into the hospital a year ago.
They said they would call in the doctor and would get back to me. About an hour later, they called back and said she had had another small episode. The doctor didn't think it was necessary to go to the hospital and gave her oxygen and Lasix. Again, it seemed to be helping and all seemed to be okay. That twinge in my stomach grew. I went to my friend's house for food and mindless TV. A few hours later I called to check on her and she was resting comfortably.
I slept hard that night, relieved that she was okay. But then that damn phone woke me out of a solid sleep again at 9 a.m. They were taking her to the hospital because she was having yet another episode upon awakening. I stayed calm and woke myself up. I sent a message to my sister via Facebook because she was working out of the country. When I called the hospital a little later to check on her, it sounded like they were concerned about Congestive Heart Failure. Now the twinge had turned into a pit.
There was a lot of confusion when I was trying to talk to nurses. They all seemed to want to brush me off. One even handed the phone to my mother and asked her permission to speak with me. I wanted to shout, "Do you understand that this is an Alzheimer's patient? I am her primary contact!" It turns out that the hospital was in the process of updating their computers and somehow Mom's file came up with Dad still as her primary contact.
My sister got back to the States on Monday and quickly sorted out contact information. She took over the details with the doctors and nurses. She had the time. I was knee-deep in CPSE evaluations and meetings for some of my students, as well as getting over being really sick. She kept sending me updates throughout the day. It was now looking like she did in fact suffer from a small heart attack, but should be just fine. Her numbers were fine. She wasn't in any pain. All was looking good. But that pit turned into a rock.
By Tuesday, doctors had determined that she also had kidney disease. Because of the kidney disease, they couldn't properly treat the clot and heart issues. They said that we could order a bunch of other tests and try a bunch of different procedures and other medications. Or, we could consider physician-prescribed comfort care or Hospice.
Boom. Confronting death. Only this time it wasn't as imminent as Dad's was. With Dad we knew it was going to be three days, because we had to stop his feeding tube and water. And sure enough, it took three days. But with Mom, there wasn't a real time frame. The blood clot could come loose and she could easily have another heart attack and BAM be gone from us. Or, she could linger in her condition for quite some time. It happens all the time with people.
So, here I am. Stuck in limbo. Confronting the death of my own mother, a mere 9 months after my father died. To make matters worse, the H-word was given to us on my father's birthday. It was also the six-year anniversary of my mother's older brother's death from Alzheimer's and heart disease, plus a few other ailments.
It was also a week after I started a blogging journey on one of my other blogs about dealing with the loss of both of my parents. A bookseller acquaintance of mine gave me a book last summer right after my father died. It's called They Live On and the author writes about dealing with the losses of her parents so close together. He thought I might get some comfort out of reading someone else's experience. And of course he was hoping I would do a review of it, to help support a local author. I couldn't bring myself to read it and to feel all of those emotions until then. Instead of doing a traditional review, it turned into a sort of "Julie and Julia" thing where I was paralleling my own experiences and feelings with that of the book. Ironically, the last post that I had managed to do before I got sick was called "Just Take Her." The author of the book was talking about wanting her mother to heal from her brain tumor and cancer, but realizing it couldn't happen here on Earth. I paralleled it to my own feelings about my mother and her Alzheimer's. Having this happen was almost like having those prayers answered.
Read the series of posts from They Live On here. At the time of this posting, my series is not yet complete. But this link will take you to all of them in reverse chronological order. And I am sure that I will have several more posts completed soon.
As of this moment, as I am typing this, I have no idea when my mother is going to pass away. The waiting is making me crazy. I have to confront a lot of my own issues. Do I want to see her or not? Will I just agitate her like usual and cause her more pain? Can I detach myself enough to just hold the hand of a sick woman? How is this one going to happen? Will I be there for that final moment? Are we going to know like we did with Dad?
I am sitting in a self-imposed silence because I can't stand the sound of any music or TV right now. I am already tired of talking to family members on the phone. But even the silence is making me crazy.
Part of me wants to just scream and rant and rave. I cried like a baby last night, several times. I have to wait until we have more information from Hospice and the nursing home before I start telling more friends and family about it. But I am avoiding confrontation with my sister by following her lead and working with her. The last thing we need right now is to argue. We need each other, because we are all we have left.