Day 32: Memories

The brain is an interesting thing.

Without it, we don't function. But sometimes, even with it, functioning is difficult.

What makes it misfire?

What makes it possible for a woman to forget the names of her children?

What makes it take a person to another world that seems absolutely real, but does not actually exist?

I questioned all of this and more today.

Let's take a step back though...to Sunday. Yesterday was a long day. I had intended to go up early and get home early for a full night's sleep. But that's not how the day played out. When I arrived early Sunday morning, Mom's new nurse, David, told me that my mom was very confused. She got very angry overnight and when I got into her room, she was completely wiped out. After a little while, she opened her eyes and looked at me. I said Hi and she looked at me and shrugged her shoulders like she wasn't sure what was going on.

She became progressively more lucid over the course of the day and she and dad and I had a nice visit with Aunt Judy, Uncle Charlie and Aunt Marlene. There were tears but lots of laughter too.

Then dad and I spent the rest of the afternoon waiting to hear when mom would be moved. She was no longer needing the CCU floor. She was maintaining her blood pressure and was off all her medication. This was all a good sign. But mom's confusion was troubling. She told me that "That was quite a storm last night", when in reality it has been sunny and dry here for several days. I even confirmed with the staff that there hadn't been some sort of fluke storm. But mom really believed she saw the lightning and heard the thunder.

Finally at 7pm, mom was moved up to the 7th floor. The move made her very nervous and she got scared and confused again. After we got settled into her shared room, she was still asking a lot of questions as to why she was here. I finally convinced dad to go home around 8:30pm and then I spent time talking to her nurses and trying to figure out how long I could stay before driving home. I was without childcare in the morning so I knew I was going to need to drive home at some point. I was either going to do it soon or at 4am. I thought that if I could get some sleep in the nice big recliner chair the staff brought for me, I could leave at 4am. But it became quickly apparent that sleep was not going to be had.

I talked to mom's overnight nurse, Michelle, and she was fantastic and listened to all my concerns and even got an alarm for mom's bed so if mom did try to get up overnight, the staff would know it. She was in a room almost directly across from a nurses station so they could see right into her room. Mom's roommate, Beverly, also offered to push her nurse call button whenever mom needed anything.

So, finally, reluctantly, I left at 12:30am.

Me on the road, in the dark, pretty much one of very few cars...it was a long drive full of tears.

At 6:30am this morning I called Michelle and she told me that mom did okay last night but did get pretty confused. Shortly afterwards, I received a call from mom's day nurse, Nancy (ironically) who was concerned because mom was trying to rip out her IV and foley catheter and saying she wanted to go home. I called dad because I couldn't leave yet and he headed over to the hospital and got there about 8:30am. He called me shortly thereafter and was very concerned about mom. He couldn't get her to eat or understand where she was.

I headed north at 9:30am. Thanks to Mary and Julie for watching the boys to allow me to go up today. It was our scheduled day to go up to talk to mom's oncologist to stop the chemo. Obviously much had changed and the appt wasn't needed anymore. But today had instead turned into the day we would meet with hospice.

When I arrived at the hospital shortly after 11am, I found mom to be out cold. She looked worse than yesterday morning. Dad said the staff was really happy to see him when he arrived.

As the day went on, mom perked up a little. By about 12:30pm, Michael had arrived and he and dad and I went into the waiting area to sit with Eileen from Hospice. She was wonderful and made us all feel pretty at ease. But it was not an easy conversation to have. The good news was that mom was going to be able to be discharged on Tuesday. The bad news was that dad was on his own for a couple of days. So, it was decided to work with a group that had CNAs and RNCs to provide continuous assistance for mom for the first 48 hours home. That made us all feel a little more comfortable as mom was certainly not ambulatory and Michael and I were both worried about dad taking care of mom and getting her up and down, etc.

So, it was decided that mom would have a hospital bed with an air mattress to help with areas of pressure changing to help reduce the change of bed sores (of which she is developing one), a mobile toilet, a walker, and a wheelchair delivered Tuesday morning and mom would be discharged Tuesday afternoon.

Once that decision was made, we started receiving lots of visitors from Hospice. The balls were really rolling.

Aunt Linda and Uncle Bill also came about this same time and mom was fairly lucid and able to talk to them. Uncle Bill massaged mom's feet and she really liked that! Thanks Uncle Bill! :-)

We heard from the Hospice doctor and social worker who asked lots of question and made sure we had all the info we needed. The hospital Priest came and gave mom the Sacrament of the Sick. We were also honored with a beautiful harp player who came in and played the harp for mom. It was incredible. And then we received a complimentary copy of her cd. It is so beautiful!

Mom and I had some time together when Michael and dad went down to eat in the cafeteria. During this time, she looked at me and said, "I wanted to talk to you about why you tricked me last night". I looked at her and asked her what she meant. She said something about me getting her in a car and then taking her to a different place, to a motel, where we watched a magic show. I couldn't convince her that this didn't happen. She was, and still is, absolutely certain that it took place. Her roommate said that she was having lots of hallucinations overnight.

Over the course of the past few days, I've noticed that she can't always come up with my or Michael's name either. That's a tough one to swallow. I wonder where she is sometimes. I know she is physically in the room with me, but her mind is somewhere else completely. Her short term memory is almost non-existent.

But yet, when the Priest came to bless her, she and he got to talking about the hospital in Yakima where mom didn't her student nursing. He described the building and she nodded knowingly and added a few things. She remembered that perfectly from back in the mid 50s. But had moments when she couldn't remember my name.

I don't take it personally. I knows she knows who I am. She and dad have both said out loud to many people how much they have appreciated me during this entire process. I know she loves me. But I also can't say that it isn't hard to watch my mom struggle to come up with my name.

However, on the upside, after mom was told she was going home tomorrow her spirit really changed. She actually said she wanted to sit in a chair. That was a first since we checked into the hospital. So, she sat in the nice big chair in her room (with assistance from her nurse to get there) for the first time. And then, not long after, she walked with support of her IV pole, one lap around the 7th floor. It was absolutely incredible to watch her. She was like a different woman. She was motivated and determined. The idea of getting out of that hospital was such a good thought to her, it really changed her. And then, her last IV and her foley catheter were removed and she was in heaven.

It was amazing to think that just a few short days before, I was sitting in the ER with her wondering if she was going to die right there. And now she was free of all the IV medication and we were planning for her to return home.

And yet...she is returning home to die.

That is where she wants to die and we all want to support her in that decision. No matter how much it's hurting us all.

And we're losing bits and pieces of mom along the way. The memory is going. She can tell me about the day I was born, but can't introduce me to someone new. It's an interesting and difficult thing to watch happen.

And so I have to have my own memories. I have to hold on to those. The happy times. My mom when she was strong and healthy.

So, I sit here at 11pm on Monday night. I am staying up blogging so I can stay awake to call the hospital to talk to mom's new night nurse. I want to make sure she's prepared in case mom does try to take off again tonight.

I am SO tired though. We went out to dinner with friends tonight for Olly's birthday. I'm glad we did it, but I have to admit that my head was in Everett a lot. I can't help it.

Since Friday, I have driven up and back to Everett 3 times. I drove up at 5:30pm Friday night, came home Saturday evening. I drove back up early Sunday morning and drove back at 1am this morning. Then turned around and drove back and 9:30am this morning and came home tonight around 5:30pm. Tomorrow I will drive back up again. I'm taking the boys this time. We will help dad take mom home. I don't know what time I'll head back. And then I will probably go back up again Wednesday just to meet the person that is there helping dad. Perhaps I'll take Thursday off since I have to teach that night.

I am amazed that my body is still functioning. I know I am pretty raw. The tears flow easily and heartily. Sobbing tears. Sobs that make it hard to breathe.

Today reality really started to set in. I think tomorrow it will hit even harder when I see a hospital bed in my mom and dad's living room.

Each good-bye continues to get bigger. None of them seem small anymore. They each seem to hold so much more meaning. I suppose every time we say good-bye to anyone, we should assume it could be the last time. But that's not often how we live, until you're in a situation like the one I am in now. Every good-bye does feel like it could be the last one. And it terrifies me.

As I drive home, 65 miles away from my mom, I feel a strong physical separation that hurts a place in my soul that I've never felt before.

I don't know how much time we have left with mom...but I don't think it's much. My brain understands this. My brain can continue to move forward and make necessary decisions. My heart occasionally understands and it breaks a little more each time it has to accept it. But it definitely is still trying to protect itself from breaking into pieces. My soul, on the other hand, still has no way to understand the loss of my mother. It is still not ready. Perhaps it never will be. I'm trying to strengthen myself for what is coming, but I know that no matter when it happens, it will floor me. The reality will be so enormous. My soul isn't ready to go there.

I am raw. I hurt. I believe it is visible on my face that I am suffering. I feel like everyone that looks at me can see it.

Mom goes home tomorrow. There is a strong possibility she will never leave her home again. I am watching Spring come to life as the weather improves. Sunrises and sunsets. Flowers blooming. Birds chirping. Puget Sound glistening. Yesterday I saw a hot air balloon from the hospital window. Today I saw a float plane come in for a landing in Lake Union. And with all of this, and so much more, all I think is, "My mom will never see this again" and that hurts so much. And, at the same time, makes me appreciate it all so much more. I don't ignore these things anymore. I experience them.

I experience life more than I did 32 days ago. I experience it more for both me and my mom. A part of me hopes she can somehow see it through my eyes. And that it goes someplace where her soul remembers it forever. She may not be able to remember my name all the time, but I know our souls are forever joined. Nothing can change this. And so one of the small gifts I have received throughout this journey is the gift to see the world differently. Okay, maybe I am angry at it a lot right now, but I do stop to literally smell the roses now. That is a gift my mom has given me. My hope is that I can share it with her through my heart and my soul as we continue to say our good-byes.