My mom is home.
She walked into her own house, with just a little help from dad, for the first time since Friday. It was SO good to see her there.
The day started by me calling in to Michelle this morning at 6:30am to see how mom had been overnight. I was so pleased to hear that mom had actually slept most the night. That was really fantastic news!
The boys and I made our trek up to the hospital, arriving around 10:30am. Dad informed me that mom's home supplies (hospital bed, etc) were to arrive at their house between 1:00 - 3:00pm. So, shortly after Noon, the boys and I headed up to mom and dad's with a stop at Safeway to pick up some sherbet for mom. We arrived at their house right at 1:00pm. I moved furniture to make room for the hospital bed. I vacuumed. I cleaned out the fridge. I ran the and cleaned out the dishwasher. I called dad at 2pm to let him know that I hadn't seen anyone yet. He asked me if I could pull out his Long Term Care Insurance policy and see if I could start making some phone calls.
I spent the next hour on the phone with the insurance company. It sounds terrible, but it was actually a really great thing. The insurance company was incredibly helpful and I found out that dad's insurance covers $216/day in home health care with NO waiting period. This was incredible news because dad paid for 48 hours of home health care starting at 8pm tonight. He will get a good portion of that money reimbursed AND, we now know that if mom needs additional help (we're thinking mostly at night if she isn't lucid), then dad can have a night nurse (or even a friend or neighbor) every night if needed. This was a huge relief for dad and Michael and I. The insurance company got everything set up and started. And I'm convinced I will need to look into Long Term Care Insurance for myself (but get a GOOD policy like dads!).
Finally, shortly after 3pm, the supplies showed up. The delivery guy set everything up, showed me how to work it all and I called dad and the hospital to let them know everything was there and about 15 minutes later mom was finally discharged from the hospital!
About a half hour later, as I said, mom walked in with just a little support from dad. It was the greatest feeling to see her come in, sit down in her own chair and have a little ice cream and talk to us all a bit. She ultimately went into her own bed and took a nap. Honestly, if she never wants to use the hospital bed, I'm good with that! But I suspect she will get quite a bit of use out of it over time.
I made sure dad was comfortable with being alone with mom for a couple of hours and then the boys and I headed home around 6pm. We got home around 7:30pm. It's the first night I've come home and felt okay with it. Leaving her at the hospital was terrible. I hated it so much. But tonight she is in her own home. And dad has help if he needs it. And I feel like it's the first night I might actually get some decent sleep in many days.
My hope is that mom never has to go back to the hospital again...although she might need to have her stomach drained again, but if that happens it should just be a quick procedure and then back home.
Hospice makes their first visit tomorrow. If it's late enough, I'm going to drive up for it. Otherwise, I'll just plan to make the next one. I called in someone to work for me tonight because I just wasn't going to make it back in time. Missing work doesn't help my financial picture (since there's no sick pay in Childbirth Education...;-)), but I just have to believe that all is going to work out. I anticipate that I may miss a few more classes along this path but that just is what it is. Mom comes first. Everything else just has to fall into place. If nothing else, I'm really learning to just let things be as they will be. I'm learning to let go a little more. And there's nothing wrong with those life lessons.
So for today, I'm trying not to think about why there is a hospital bed in my mom and dad's living room. Or why I looked through their wills tonight. Or why I spent an hour with the Long Term Care Insurance company. Or why hospice is visiting my mom tomorrow.
Today, I am just simply intending to be happy that my mom is home. 5 nights ago, right now, I was sitting in an ER with her. Tonight she is home. That is good. And I will revel in the small good things along this path of big bad things.
Once again, thank you to all of you have contacted myself, Michael and mom and dad. Your cards, e-mails, texts, calls, prayers and good thoughts have meant, and continue to mean, so very much to all of us. I'm hoping mom will be up for visitors in the next couple of days so that those of you who have expressed a desire to come by can do so! Please keep those thoughts and prayers coming. They helped get mom home. They will help us as we continue down the rest of this path too!
Tuesday, April 21, 2009
Monday, April 20, 2009
Day 32: Quick update
Just talked to mom's night nurse, Michelle (same as last night). Mom is starting to get confused. If you are reading this tonight, please pray for her to stay as lucid as possible. I hate that her mind goes somewhere else every night. And it seems like such a scary place. And I can't be there.
I'll just say it again...this is the hardest thing I have ever done in my life...
But for now, I'm off to bed to try and send calming vibes to mom somehow and hope that we can all get some rest before a busy day tomorrow.
I'll just say it again...this is the hardest thing I have ever done in my life...
But for now, I'm off to bed to try and send calming vibes to mom somehow and hope that we can all get some rest before a busy day tomorrow.
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.
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.
Day 31: Summary
It's 2:36am. I'm beat. I'm home from 16 hours at the hospital. Need to sleep so this is short. Will update more when I can. Mom was transferred out of CCU at 7pm tonight. She's now on the Oncology floor. Hospice will be visiting tomorrow and the current hope is that mom will go home with Hospice on Tuesday.
Please keep us all in your thoughts and prayers. This is truly the hardest thing I've ever done.
Please keep us all in your thoughts and prayers. This is truly the hardest thing I've ever done.
Saturday, April 18, 2009
Day 30: Update already
So, I could have edited my last post, but decided to just post a separate one. I just spoke to mom's CCU nurse. They are in the process of giving her 2 units of blood. Her stomach is filling again leading the staff to lean towards the idea of mom needing her stomach to be constantly drained with a tube. That can't be done at home. That means mom stays in CCU until the end. I am tired and overwhelmed and am going to try to get a couple of hours of sleep to think more clearly.
Unfortunately, the celebration party may not happen. I wish the circumstances were different...
Unfortunately, the celebration party may not happen. I wish the circumstances were different...
Day 29 & 30 - Quality vs. Quantity
Where do I even start?
Thursday I was furious. And then I spent quite of bit of time on the phone with dad yesterday and became increasingly concerned about him and about mom's condition. Mom was vomiting a lot. She wasn't eating. Dad was exhausted and I could hear the worry in his voice. He had spoken to their nurse, Kim, at the Cancer Center. She told him that if it got to the point where mom couldn't/wouldn't get out of bed, it was time to call 911.
I had talked to dad around 2pm. We talked for some time and then he had to go quickly because mom was vomiting again. I told him I'd call him back later in the day to see how things were going. In the meantime, I called and talked to Kiersten and my Aunt Judy and my Aunt Linda. I also called and spoke to Kim at the Cancer Center myself to find out when we decided mom needed more help.
Dad called me at 4:55pm. He said he had just talked to Kim again because mom was saying she couldn't breathe and her stomach was bothering her. Kim told him that because it was Friday night at 5pm, they wouldn't be able to get an appointment at the hospital, so she thought it would make the most sense to call 911. I'm not sure why he called me, except looking back, I think he just needed confirmation that he should call 911. He put mom on the phone and her breathing was obviously labored but she said she was trying to just calm down. I told her the medics needed to at least come and assess her and told her to put dad back on the phone. I told dad to call 911 and that if I hadn't heard from him within 20 to 25 minutes I'd call him back to see what was going on.
25 minutes later, I called dad. The medics had just put mom in the ambulance and were heading to the ER at Providence Everett. He was getting ready to drive up behind them. He said mom's vitals were okay, but her blood pressure was very low. I told him I'd be heading right up and left about 5:30pm. I was blessed with wonderful traffic for a Friday night and made it up to Everett in under an hour. I was in the ER with mom and dad before 6:45pm.
The goal in the ER was to drain mom's stomach, but she needed to be stabilized first. For some time there was talk of draining her stomach and sending her home, but as test results started coming back, it became obvious that wasn't going to happen. Mom had an incredible nurse by the name of Chuck. We felt that was appropriate. :-)
Dad went home about 10:00pm and between then and 2:00am, mom had a lot of blood taken, had lots of fluid put in her (she had already had a bladder catheter inserted to measure urine output), and finally had 4 liters of fluid drained from her stomach which instantly helped her breathing, but did nothing for her blood pressure which at one point was 47/29.
Mom was given medication to help bring up her bp in the ER and it was inching it's way up. Her temperature also inched up to a point where they finally had to administer antibiotics for concern of an infection.
The ER doctor came in to give mom a run down of her situation and it was as follows... the fluid that was drained from her stomach was infected... it looked as though she may have pneumonia... and her blood count was very low quite possibly requiring a blood transfusion for which she signed a consent before heading up to her room. The doctor then said she would be moving to ICU. That was a reality check.
Finally around 2am, mom was up on the 4th floor and met her new nurse, Ernie. When Ernie brought me back to mom he told me that he had asked her some questions. She didn't know what month or season we were in, but what he thought was funny that her answer to the question, "Who is the US President?" was "La Bamba". We did have some humor throughout all of this.
Mom also met the ER Doctor, Dr. Tie. He was incredible and really laid things out in black in white. One of his concerns was mom becoming septic. He explained the normal protocol of placing a catheter in the neck. But then he looked at mom and asked her if that felt like too much suffering for her. He knew she was intending not to continue chemo and he wanted to find out exactly what mom was wanting in terms of care. She said that she didn't want the catheter if it became necessary and Dr. Tie completely understood. Dr. Tie also went over life saving efforts with mom. This was hard. To hear her say she didn't want any was incredibly difficult. To think that no CPR would be done was really hard to hear. But I had to respect mom's choices.
Ernie was an awesome nurse and within about 3 hours had mom's bp coming up and her kidneys finally working again. After having a bladder catheter in at 9pm, we were finally seeing urine at 5am. Mom's color was better and she was feeling so much better. Mom dozed in and out. I tried sleeping on two uncomfortable chairs. What I had done a very poor job of was taking care of myself. I was dehydrated and hungry and was become dizzy and nauseous every time I closed my eyes. Thank goodness for my dear friend Shannon who texted me at 6am to find out if I was still at the hospital. By 7:45am, Shannon arrived with a hot latte, one of my favorite Starbucks sandwiches and a bag full of snacks and fruit and another bag full of bottled water. All of which truly saved me. She was my angel this morning. I love you Shan!
By 7am, and shift change, mom seemed to be continuing to improve. Her new nurse, Julia came on shift and we would spend the rest of the day with her.
Dad arrived back around 11am and Michael and Kiersten weren't too far behind. The new ICU Dr. came in and said he did feel mom was improving, but she still needed to be able to keep her blood pressure stable without all the meds. There was definite concern still in his face, but he did feel there had been some improvement.
Not long after, the on call Oncologist, Dr. Condon, came in. He was a very nice man and he called mom, "Mrs. Barr" a few times and mom told him that she didn't want any more chemo. He already knew this, but at this time, he started calling her "Nancy" and he told her that in his professional opinion, she was making the right choice. I think dad needed to hear that. Although none of us wanted to. He said that after some consultation over mom's case, he felt that perhaps this actually was liver cancer which is incredibly hard to treat. He told all of us in the room that if it was his wife or his mother, he would want her to stop the chemo too. He said at this point, it was really about QUALITY of life vs. QUANTITY of life. Mom was so very grateful to Dr. Condon, and I spent most of the time trying not to completely fall apart.
Reality was setting in for all of us. We were no longer looking at prolonging mom's life. We were looking at making what she had left as good as possible. Dr. Condon was so incredible and Julia stayed in the room and held mom's hand. Hospice was discussed and the intent was that when mom was discharged from the hospital, she would return home with daily hospice care. I think that really felt good to dad and took some pressure off him.
I think this conversation took a lot of pressure off of mom too. The decision was made. She knew how things were moving forward. She told me last night in the ER that she wasn't afraid to die. I told her I was afraid of her dying.
Dr. Condon told mom that she was looking at probably a couple of days in ICU and maybe a couple more on the Oncology floor. This, for me, was tough to hear because I knew then I couldn't do nights anymore because of childcare issues. I was going to have to go home tonight and get some sleep because I got none last night. And as I write this, mom is alone at the hospital in the ICU and may very well be getting a blood transfusion. But I left this one up to God and told him I needed him to direct me in the right direction and that direction pointed me home so I could get some rest and see my boys. As I write this, Olly's birthday cake just came out of the oven as well. I don't see myself being around much the next couple of days and this is the least I can do for him as his birthday is Monday. But I also know that without rest I can't take care of mom very well. So, I have to believe that she is in good hands at the hospital. Her night nurse will be Ernie again and I know he'll take good care of her. Julia took down my number and Michael's number and told me that Ernie would call if he felt that anything was changing with mom's status. So, right now my goal is to spend a little time with all my boys at home, finish the birthday cake and then get a good night's sleep to prepare for tomorrow when I will head back up to the hospital for the day. I think I'm taking the boys up because Olly has to take Blake home and I don't want him to have to haul all 3 kids around. My wonderful Shannon has already said I could drop the boys off at her place since I can't really have them in the ICU.
So, that's the abbreviated version believe it or not. ;-) The in between points are all the conversations that were had. I had a lot of time with mom. Much of it was spent in silence, but during some of it stories were shared. When Michael and Kiersten and dad were all there, there was definitely some laughter. And then the conversation turned to next steps. We talked about cremation and where they have burial plots and catholic funerals. And then mom felt she wanted to have people over to which I was SO pleased. She wanted to have a party. And so that's our next step. We're planning sort of an open house for people to come laugh, share stories, and say good-bye to mom. We're trying to plan it quickly because we honestly have no idea how much time there is left. Right now were are looking at Saturday, May 2nd. I think this is one of the gifts to losing someone like this. The opportunity to say good-bye. Mom knows she will most likely be in the living room in her hospital bed, and she's okay with that. She wants a celebration. And we're going to give her one.
And as I sit here, the tears are coming again. I am exhausted. I know after an all night birth my emotions are very wacky. But the tears don't really stop now. I cried much of the way home on my drive tonight.
The small goodbyes are getting bigger. I sit here tonight knowing mom is in the hospital without us. She wanted this. She sent us all home. She will probably sleep much better. But I am so worried that something will happen. She'll stop breathing and no CPR will be performed per her request and my last good-bye was my last one. But I also have put my faith in God that if I was supposed to be there tonight, I would have been there.
And I will head back up first thing in the morning. I will spend another day at the hospital. More conversations will be had. More good-byes. Each one hurts more. I feel I'm counting my time with mom in days now, not weeks, not months...but simply days...and that's terrifying. She is dying. She will be gone soon. And my world as I know it will be over. How can this woman just simply be gone off this earth? How? It's not fair! It's just not fair. I know I will carry her with me forever and I will share stories of her with my children. But she will be gone, except in my heart. My heart that is currently shattered and broken. I assume some day it will be back in one piece. One piece with many scars. I'm just so scared to walk through this. I am just simply so scared.
But for now, mom wants a celebration of her life. She wants to say her good-byes. That I can give her.
For those of you who are family and close friends, please make some time to come laugh with, reminisce with, and say good-bye to Nancy. To my mom. The the woman that made me who I am today. The woman to whom I owe my life and these 2 beautiful children of mine. Please come share your stories...bring pictures if you've got them. Come celebrate the life of My Mom. It deserves celebration. This earth will be missing a very special piece when she is gone.
Thank you to all of you who have contacted me to offer your love, support and prayers. They just keep coming in and they mean so much to me and all my family. We are surrounded by love. And that makes our loss just a little tiny bit easier to bear. We love you all!
Thursday I was furious. And then I spent quite of bit of time on the phone with dad yesterday and became increasingly concerned about him and about mom's condition. Mom was vomiting a lot. She wasn't eating. Dad was exhausted and I could hear the worry in his voice. He had spoken to their nurse, Kim, at the Cancer Center. She told him that if it got to the point where mom couldn't/wouldn't get out of bed, it was time to call 911.
I had talked to dad around 2pm. We talked for some time and then he had to go quickly because mom was vomiting again. I told him I'd call him back later in the day to see how things were going. In the meantime, I called and talked to Kiersten and my Aunt Judy and my Aunt Linda. I also called and spoke to Kim at the Cancer Center myself to find out when we decided mom needed more help.
Dad called me at 4:55pm. He said he had just talked to Kim again because mom was saying she couldn't breathe and her stomach was bothering her. Kim told him that because it was Friday night at 5pm, they wouldn't be able to get an appointment at the hospital, so she thought it would make the most sense to call 911. I'm not sure why he called me, except looking back, I think he just needed confirmation that he should call 911. He put mom on the phone and her breathing was obviously labored but she said she was trying to just calm down. I told her the medics needed to at least come and assess her and told her to put dad back on the phone. I told dad to call 911 and that if I hadn't heard from him within 20 to 25 minutes I'd call him back to see what was going on.
25 minutes later, I called dad. The medics had just put mom in the ambulance and were heading to the ER at Providence Everett. He was getting ready to drive up behind them. He said mom's vitals were okay, but her blood pressure was very low. I told him I'd be heading right up and left about 5:30pm. I was blessed with wonderful traffic for a Friday night and made it up to Everett in under an hour. I was in the ER with mom and dad before 6:45pm.
The goal in the ER was to drain mom's stomach, but she needed to be stabilized first. For some time there was talk of draining her stomach and sending her home, but as test results started coming back, it became obvious that wasn't going to happen. Mom had an incredible nurse by the name of Chuck. We felt that was appropriate. :-)
Dad went home about 10:00pm and between then and 2:00am, mom had a lot of blood taken, had lots of fluid put in her (she had already had a bladder catheter inserted to measure urine output), and finally had 4 liters of fluid drained from her stomach which instantly helped her breathing, but did nothing for her blood pressure which at one point was 47/29.
Mom was given medication to help bring up her bp in the ER and it was inching it's way up. Her temperature also inched up to a point where they finally had to administer antibiotics for concern of an infection.
The ER doctor came in to give mom a run down of her situation and it was as follows... the fluid that was drained from her stomach was infected... it looked as though she may have pneumonia... and her blood count was very low quite possibly requiring a blood transfusion for which she signed a consent before heading up to her room. The doctor then said she would be moving to ICU. That was a reality check.
Finally around 2am, mom was up on the 4th floor and met her new nurse, Ernie. When Ernie brought me back to mom he told me that he had asked her some questions. She didn't know what month or season we were in, but what he thought was funny that her answer to the question, "Who is the US President?" was "La Bamba". We did have some humor throughout all of this.
Mom also met the ER Doctor, Dr. Tie. He was incredible and really laid things out in black in white. One of his concerns was mom becoming septic. He explained the normal protocol of placing a catheter in the neck. But then he looked at mom and asked her if that felt like too much suffering for her. He knew she was intending not to continue chemo and he wanted to find out exactly what mom was wanting in terms of care. She said that she didn't want the catheter if it became necessary and Dr. Tie completely understood. Dr. Tie also went over life saving efforts with mom. This was hard. To hear her say she didn't want any was incredibly difficult. To think that no CPR would be done was really hard to hear. But I had to respect mom's choices.
Ernie was an awesome nurse and within about 3 hours had mom's bp coming up and her kidneys finally working again. After having a bladder catheter in at 9pm, we were finally seeing urine at 5am. Mom's color was better and she was feeling so much better. Mom dozed in and out. I tried sleeping on two uncomfortable chairs. What I had done a very poor job of was taking care of myself. I was dehydrated and hungry and was become dizzy and nauseous every time I closed my eyes. Thank goodness for my dear friend Shannon who texted me at 6am to find out if I was still at the hospital. By 7:45am, Shannon arrived with a hot latte, one of my favorite Starbucks sandwiches and a bag full of snacks and fruit and another bag full of bottled water. All of which truly saved me. She was my angel this morning. I love you Shan!
By 7am, and shift change, mom seemed to be continuing to improve. Her new nurse, Julia came on shift and we would spend the rest of the day with her.
Dad arrived back around 11am and Michael and Kiersten weren't too far behind. The new ICU Dr. came in and said he did feel mom was improving, but she still needed to be able to keep her blood pressure stable without all the meds. There was definite concern still in his face, but he did feel there had been some improvement.
Not long after, the on call Oncologist, Dr. Condon, came in. He was a very nice man and he called mom, "Mrs. Barr" a few times and mom told him that she didn't want any more chemo. He already knew this, but at this time, he started calling her "Nancy" and he told her that in his professional opinion, she was making the right choice. I think dad needed to hear that. Although none of us wanted to. He said that after some consultation over mom's case, he felt that perhaps this actually was liver cancer which is incredibly hard to treat. He told all of us in the room that if it was his wife or his mother, he would want her to stop the chemo too. He said at this point, it was really about QUALITY of life vs. QUANTITY of life. Mom was so very grateful to Dr. Condon, and I spent most of the time trying not to completely fall apart.
Reality was setting in for all of us. We were no longer looking at prolonging mom's life. We were looking at making what she had left as good as possible. Dr. Condon was so incredible and Julia stayed in the room and held mom's hand. Hospice was discussed and the intent was that when mom was discharged from the hospital, she would return home with daily hospice care. I think that really felt good to dad and took some pressure off him.
I think this conversation took a lot of pressure off of mom too. The decision was made. She knew how things were moving forward. She told me last night in the ER that she wasn't afraid to die. I told her I was afraid of her dying.
Dr. Condon told mom that she was looking at probably a couple of days in ICU and maybe a couple more on the Oncology floor. This, for me, was tough to hear because I knew then I couldn't do nights anymore because of childcare issues. I was going to have to go home tonight and get some sleep because I got none last night. And as I write this, mom is alone at the hospital in the ICU and may very well be getting a blood transfusion. But I left this one up to God and told him I needed him to direct me in the right direction and that direction pointed me home so I could get some rest and see my boys. As I write this, Olly's birthday cake just came out of the oven as well. I don't see myself being around much the next couple of days and this is the least I can do for him as his birthday is Monday. But I also know that without rest I can't take care of mom very well. So, I have to believe that she is in good hands at the hospital. Her night nurse will be Ernie again and I know he'll take good care of her. Julia took down my number and Michael's number and told me that Ernie would call if he felt that anything was changing with mom's status. So, right now my goal is to spend a little time with all my boys at home, finish the birthday cake and then get a good night's sleep to prepare for tomorrow when I will head back up to the hospital for the day. I think I'm taking the boys up because Olly has to take Blake home and I don't want him to have to haul all 3 kids around. My wonderful Shannon has already said I could drop the boys off at her place since I can't really have them in the ICU.
So, that's the abbreviated version believe it or not. ;-) The in between points are all the conversations that were had. I had a lot of time with mom. Much of it was spent in silence, but during some of it stories were shared. When Michael and Kiersten and dad were all there, there was definitely some laughter. And then the conversation turned to next steps. We talked about cremation and where they have burial plots and catholic funerals. And then mom felt she wanted to have people over to which I was SO pleased. She wanted to have a party. And so that's our next step. We're planning sort of an open house for people to come laugh, share stories, and say good-bye to mom. We're trying to plan it quickly because we honestly have no idea how much time there is left. Right now were are looking at Saturday, May 2nd. I think this is one of the gifts to losing someone like this. The opportunity to say good-bye. Mom knows she will most likely be in the living room in her hospital bed, and she's okay with that. She wants a celebration. And we're going to give her one.
And as I sit here, the tears are coming again. I am exhausted. I know after an all night birth my emotions are very wacky. But the tears don't really stop now. I cried much of the way home on my drive tonight.
The small goodbyes are getting bigger. I sit here tonight knowing mom is in the hospital without us. She wanted this. She sent us all home. She will probably sleep much better. But I am so worried that something will happen. She'll stop breathing and no CPR will be performed per her request and my last good-bye was my last one. But I also have put my faith in God that if I was supposed to be there tonight, I would have been there.
And I will head back up first thing in the morning. I will spend another day at the hospital. More conversations will be had. More good-byes. Each one hurts more. I feel I'm counting my time with mom in days now, not weeks, not months...but simply days...and that's terrifying. She is dying. She will be gone soon. And my world as I know it will be over. How can this woman just simply be gone off this earth? How? It's not fair! It's just not fair. I know I will carry her with me forever and I will share stories of her with my children. But she will be gone, except in my heart. My heart that is currently shattered and broken. I assume some day it will be back in one piece. One piece with many scars. I'm just so scared to walk through this. I am just simply so scared.
But for now, mom wants a celebration of her life. She wants to say her good-byes. That I can give her.
For those of you who are family and close friends, please make some time to come laugh with, reminisce with, and say good-bye to Nancy. To my mom. The the woman that made me who I am today. The woman to whom I owe my life and these 2 beautiful children of mine. Please come share your stories...bring pictures if you've got them. Come celebrate the life of My Mom. It deserves celebration. This earth will be missing a very special piece when she is gone.
Thank you to all of you who have contacted me to offer your love, support and prayers. They just keep coming in and they mean so much to me and all my family. We are surrounded by love. And that makes our loss just a little tiny bit easier to bear. We love you all!
Thursday, April 16, 2009
Day 28: Disappointment and Anger
Judge me if you will for today's post. But this is my blog. I started it as a way to express my own feelings. And today, they're ugly. Period.
I was supposed to go up and see mom today. I called just before the boys and I were getting ready to hop in the car only to be told there was really no reason to come up today if I was coming up on Monday anyway. Mom wasn't feeling well again and just didn't think it was a good day to have visitors.
And I got off the phone incredibly disappointed and sad. As the day has gone on, it's actually turned into anger. I am SO angry. I'm angry at God. I'm angry at the universe. I'm angry at myself. And in all honesty, I think a part of me is angry at my mom. I know that's unfair and irrational, but it's how I feel.
I know she didn't choose to get cancer. I understand that. That's the part I'm angry at God about. But mom is choosing to stop chemo which means her time left on this earth is very limited and I feel that I, and pretty much everyone else, is being forced to stay away. And I don't feel like it's fair. I just want as much of the little time I have left with my mom. I don't care what she looks like. I don't care if she has to take a nap. I don't care. I just want to be there. I feel so helpless here. At least up at mom and dads I feel like we can talk. I can understand more of what mom is going through. I know I can't do anything to take this away. But I just simply want to be there. And it hurts that I'm not allowed to. And a part of me just wants to go anyway, and the other part of me knows I need to respect her wishes. But I am SO mad today.
And maybe a lot of it is directed at myself. Why didn't I visit more before? Why am I trying to jam a lifetime of visits into a short period of time before mom dies? That's my fault. I only have myself to blame for that. But mom and I have always had our "stuff" and sometimes I just didn't want to deal with it. The last 3 1/2 years have been incredibly tough in my life and I've pulled away from everyone. Crap...as I type that I realize it's the same thing mom is doing. She's pulling away because how do you process all of this? What I was processing and experiencing wasn't life or death and I needed to do it on my own. Mom is looking death in the eyes and somehow I expect her to do that surrounded by people.
But...what I learned throughout the last 3 1/2 years is that asking for help is not a sign of weakness. And people do truly want to help. I've always been the one to help. I have never been one to accept help. Gee...I wonder where I got that from? But I could not have survived the last 3 1/2 years without the help of my friends. That's all any of us want to do for mom. We want to help. And we want to see her and maybe laugh and reminisce a little. And we want to say our good-byes.
But mom is pushing us away and that makes me mad. Maybe I'm just frustrated with the fact that I do understand where she is coming from, but I also know what I feel and I want her to understand that too. But, of course, I've never actually said it that way. Maybe I need to so she can understand that although she is suffering, all of those that love her are suffering too. Today I got to thinking that maybe she doesn't understand how important she is to so many people. Maybe she needs to hear that.
~ Sigh ~ So, it's taken me a long time to get this far in this blog post because I've stopped to wipe tears and blow my nose several times. Perhaps it's easier to be angry than it is to hurt as deeply as I'm hurting.
28 days. 4 weeks. One month. What a different person I was a month ago. I didn't have this constant pain in my heart. I didn't force numbness upon myself so as not to feel it. I didn't feel like there was a clock ticking in my ear. I didn't look at people and wonder if they had both their parents. I didn't look at the world as though I was an outsider looking in on all the life that was happening. I am a different person. I am understanding that I will never again be the person I was 29 days ago. Perhaps I'll be "more" like her again. But I'll never be the same. This experience has, and will continue, to change me deep inside.
It's Spring. The weather is beautiful today. My birthday is in exactly 2 weeks. Mother's Day comes 10 days later. My new nephew will be here 11 days after that. Mom's birthday is 2 weeks and 2 days after his. This should be a wonderful time of celebrating in our family. But I don't know how many of these things my mom will see. The past month has proved that things can change very quickly. Mom's birthday is 7 weeks away. 51 days. I don't know what those 51 days are going to do to mom. I don't know is she'll see 73. Hell, I'm mad that John Madden retired today at 73. He's healthy enough that he's worked this long and now is going to retire to be with his family. And my mom may never see 73! That's how I look at the world these days. Nothing seems fair or okay or good anymore.
Tonight I go teach a childbirth class to people that are bringing beautiful babies into the world. I turn on auto pilot and I do my job well. And I know it's good that I have this outlet. I've got two clients due in the next 2 weeks as well and that will be good for me too. Life and Death. It's my entire world right now. And I stand somewhere in the middle trying to make sense of it all. Trying to find the meaning of life in the midst of great heartbreak. That's when we always tend to be looking for it isn't it? I don't expect to find an answer. I just wonder when the pain will subside and I will be able to see more clearly again. And what I know is that I still have a mountain to climb to find that clarity. And it's a big mountain and a scary climb and one that I don't want to make, but one that I know I must.
So, maybe the anger was always to mask the pain. I don't feel as angry after trying to finish this post for the past hour and a half. But now I keep welling up with tears. I don't know which is worse. The anger or the pain. Yes I do...it's the pain. And no matter what I do to try and ignore it, mask it, get away from it...it's always there. It defines me. My mom has cancer and she's dying. No matter how well I function on the outside, that is who I am on the inside. I hurt. I see it when I look in the mirror. I see it in the eyes of the girl who looks back at me. My nearly 40 year old eyes look into the mirror and the little girl inside of me looks back and she's losing her mom. And her eyes tell the story.
And maybe that's the oddest thing of all. I may be nearly 40 years old. I may be a mom myself. But somehow, at my darkest moments, I simply turn back into a 10 year old girl who is scared and wants her mom to come protect her. But my mom can't protect me anymore. I'm out in the open and vulnerable and I have to face this fear on my own. My mom is facing her own fears. Her own reality. And I will hold her hand now as she faces them. The roles have reversed. And I wasn't ready. The almost 40 year old woman can do this somehow for my mom. But the little girl inside is falling to pieces.
I have yet to figure out how a woman processes losing her mom. Maybe we never do. We just go through it because we have no other choice. But what happens to that little girl inside? What does she do now? Where does she go? That I guess I still have to learn.
What I do know is that that little girl inside and the almost 40 year old woman on the outside will never be quite the same again.
We'll never be who we were 29 days ago.
And all of it...every little part of this...as selfish as I know it all is...makes me incredibly sad for me and that little girl.
I was supposed to go up and see mom today. I called just before the boys and I were getting ready to hop in the car only to be told there was really no reason to come up today if I was coming up on Monday anyway. Mom wasn't feeling well again and just didn't think it was a good day to have visitors.
And I got off the phone incredibly disappointed and sad. As the day has gone on, it's actually turned into anger. I am SO angry. I'm angry at God. I'm angry at the universe. I'm angry at myself. And in all honesty, I think a part of me is angry at my mom. I know that's unfair and irrational, but it's how I feel.
I know she didn't choose to get cancer. I understand that. That's the part I'm angry at God about. But mom is choosing to stop chemo which means her time left on this earth is very limited and I feel that I, and pretty much everyone else, is being forced to stay away. And I don't feel like it's fair. I just want as much of the little time I have left with my mom. I don't care what she looks like. I don't care if she has to take a nap. I don't care. I just want to be there. I feel so helpless here. At least up at mom and dads I feel like we can talk. I can understand more of what mom is going through. I know I can't do anything to take this away. But I just simply want to be there. And it hurts that I'm not allowed to. And a part of me just wants to go anyway, and the other part of me knows I need to respect her wishes. But I am SO mad today.
And maybe a lot of it is directed at myself. Why didn't I visit more before? Why am I trying to jam a lifetime of visits into a short period of time before mom dies? That's my fault. I only have myself to blame for that. But mom and I have always had our "stuff" and sometimes I just didn't want to deal with it. The last 3 1/2 years have been incredibly tough in my life and I've pulled away from everyone. Crap...as I type that I realize it's the same thing mom is doing. She's pulling away because how do you process all of this? What I was processing and experiencing wasn't life or death and I needed to do it on my own. Mom is looking death in the eyes and somehow I expect her to do that surrounded by people.
But...what I learned throughout the last 3 1/2 years is that asking for help is not a sign of weakness. And people do truly want to help. I've always been the one to help. I have never been one to accept help. Gee...I wonder where I got that from? But I could not have survived the last 3 1/2 years without the help of my friends. That's all any of us want to do for mom. We want to help. And we want to see her and maybe laugh and reminisce a little. And we want to say our good-byes.
But mom is pushing us away and that makes me mad. Maybe I'm just frustrated with the fact that I do understand where she is coming from, but I also know what I feel and I want her to understand that too. But, of course, I've never actually said it that way. Maybe I need to so she can understand that although she is suffering, all of those that love her are suffering too. Today I got to thinking that maybe she doesn't understand how important she is to so many people. Maybe she needs to hear that.
~ Sigh ~ So, it's taken me a long time to get this far in this blog post because I've stopped to wipe tears and blow my nose several times. Perhaps it's easier to be angry than it is to hurt as deeply as I'm hurting.
28 days. 4 weeks. One month. What a different person I was a month ago. I didn't have this constant pain in my heart. I didn't force numbness upon myself so as not to feel it. I didn't feel like there was a clock ticking in my ear. I didn't look at people and wonder if they had both their parents. I didn't look at the world as though I was an outsider looking in on all the life that was happening. I am a different person. I am understanding that I will never again be the person I was 29 days ago. Perhaps I'll be "more" like her again. But I'll never be the same. This experience has, and will continue, to change me deep inside.
It's Spring. The weather is beautiful today. My birthday is in exactly 2 weeks. Mother's Day comes 10 days later. My new nephew will be here 11 days after that. Mom's birthday is 2 weeks and 2 days after his. This should be a wonderful time of celebrating in our family. But I don't know how many of these things my mom will see. The past month has proved that things can change very quickly. Mom's birthday is 7 weeks away. 51 days. I don't know what those 51 days are going to do to mom. I don't know is she'll see 73. Hell, I'm mad that John Madden retired today at 73. He's healthy enough that he's worked this long and now is going to retire to be with his family. And my mom may never see 73! That's how I look at the world these days. Nothing seems fair or okay or good anymore.
Tonight I go teach a childbirth class to people that are bringing beautiful babies into the world. I turn on auto pilot and I do my job well. And I know it's good that I have this outlet. I've got two clients due in the next 2 weeks as well and that will be good for me too. Life and Death. It's my entire world right now. And I stand somewhere in the middle trying to make sense of it all. Trying to find the meaning of life in the midst of great heartbreak. That's when we always tend to be looking for it isn't it? I don't expect to find an answer. I just wonder when the pain will subside and I will be able to see more clearly again. And what I know is that I still have a mountain to climb to find that clarity. And it's a big mountain and a scary climb and one that I don't want to make, but one that I know I must.
So, maybe the anger was always to mask the pain. I don't feel as angry after trying to finish this post for the past hour and a half. But now I keep welling up with tears. I don't know which is worse. The anger or the pain. Yes I do...it's the pain. And no matter what I do to try and ignore it, mask it, get away from it...it's always there. It defines me. My mom has cancer and she's dying. No matter how well I function on the outside, that is who I am on the inside. I hurt. I see it when I look in the mirror. I see it in the eyes of the girl who looks back at me. My nearly 40 year old eyes look into the mirror and the little girl inside of me looks back and she's losing her mom. And her eyes tell the story.
And maybe that's the oddest thing of all. I may be nearly 40 years old. I may be a mom myself. But somehow, at my darkest moments, I simply turn back into a 10 year old girl who is scared and wants her mom to come protect her. But my mom can't protect me anymore. I'm out in the open and vulnerable and I have to face this fear on my own. My mom is facing her own fears. Her own reality. And I will hold her hand now as she faces them. The roles have reversed. And I wasn't ready. The almost 40 year old woman can do this somehow for my mom. But the little girl inside is falling to pieces.
I have yet to figure out how a woman processes losing her mom. Maybe we never do. We just go through it because we have no other choice. But what happens to that little girl inside? What does she do now? Where does she go? That I guess I still have to learn.
What I do know is that that little girl inside and the almost 40 year old woman on the outside will never be quite the same again.
We'll never be who we were 29 days ago.
And all of it...every little part of this...as selfish as I know it all is...makes me incredibly sad for me and that little girl.
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