Sunday, October 31, 2004

Weariness

This is painful to sit and watch. She takes in a breath, holds it. I wait for the release, pray it comes soon, then immediately feel guilty. She releases, my heart cries. I hear them say pressure is dropping. I look up to my father, searching for something in his face, some comfort, some assurance that this means she won’t suffer like this any longer. I see nothing but weariness in his face now, not hope. We are all weary. She is weary.

Let go, Mom. Go to God. That is what my heart screams. Then I feel her hand curl around mine, her eyes closed, the corner of her lips in an upturned smile and I realize I don’t want her to ever let go. Please Mom, stay with us. Let me hang onto you forever and one day. Teach me how to raise Emily, stay with me, let me know you are with me always. I silently beg for her to hear me, to fight a little harder. Hang on, and we can fight this together.

The next round of pain hits her and I find myself pleading for God to grab her from this, don’t let her suffer anymore, just take her now. The night continues on like this, dragging for hours. We take turns sitting with her, talking to her, holding her. Unsure if she can hear us, we speak anyway just to hear ourselves. We laugh as we recount memories to her, we cry as we realize how much she means to us. We sit in silence listening for her breath, praying it doesn’t come, praying that she and God can forgive us for thinking that.

She has had her moments of clarity today. We were afraid to tell her what day it was, too afraid she would understand the symbolism and leave us. Maybe we were too afraid she wouldn’t. She sees things we can’t see, talks to people we can’t hear, holds her hand out for comfort from sources we aren’t allowed to feel. Her words are breathless, but her emotion is strong. She repeats to us how much she hates herself now. We continue to assure her we love her no matter what this awful disease has done to her.

She reaches for my dad and holds on to his arm so hard he winces. "Do. Not. Let. Me. Hurt." His eyes fill with tears. He tells her he won’t, he promises he won’t let her hurt. She sighs, her eyes close, and she falls to sleep. He leaves the room to collect himself, I follow and hold him close. I feel his chest rise and fall as he begins to weep. I hold him that much tighter. I don’t want to let go of him. My strength is in him tonight. We return to her side in time to hear her tell my aunt that she would like to be shifted a little, please. We jump to assist in this knowing it only brings her pain. She is calm and quiet. Her voice comes out clear as she says thank you and I love you. We assure her we love her, and she is silent once more. Until the pain hits once again. This repeats until dawn. We know this pattern.

God, I despise you for this. I will not utter my complete disappointment in you, but you are keenly aware of it already. Restore my faith in you. Help her tonight, whatever that means for us. Just do it.

For everyone else, we thank you for your thoughts, prayers, phone calls, e-mails, comments, visits, etc. We don’t always have time to say thank you when you are doing these kind things. Our appreciation runs deep, though. Just a few public thank you’s: Donna, thank you for everything you have done, everything you have done to help her, we appreciate it all. Tessa, she LOVED it, thanks to you and your boys. Erica, we have only recently learned of your impact on my mother. However, that doesn’t stop us from saying thank you. Hearing her laugh when she spoke with you was beautiful. Leslie, we got it and thank you, it was much needed right now. Mike and family, from our family to yours, we thank you. That was the kindest thing you could have done for any of us and we are all in awe at the thought that went into it, thank you. This list only covers a few of you in a list that is in the hundreds. If your name isn’t here, it isn’t because we don’t appreciate whatever you have done, we do. You all love my mother so much, I can never thank you enough for everything you have done and continue to do. Bless all of you.

Also, someone e-mailed asking about her immune system. We are begging you to NOT come if you feel at all under the weather. She has NO immune system, so if you have recently been ill, don’t feel well, or have been around small children who may be ill, please do not come. This isn’t because we don’t want you here, it is because any germ would be very brutal to her. Also, those of you who do make it to visit with her, remember that you MUST follow the guidelines posted in the kitchen before you can be with her. These are for her safety. I know it can be a hassle to do the scrub-downs each visit, but it is a necessity and NOT optional.

A note to drop-in visitors: We have decided it is best for Mom right now if we have fewer people coming into the house each day. She is easily upset and that is not what we want. We know you want to see her and say what you need to say to her, but please understand we are doing what is best for her. Please don’t hesitate to call, we can tell you if it is a good time to visit or not.

Saturday, October 30, 2004

New Update

I started this page, just so that I could use it to test out new images for Mom’s page. I never intended it to be used as a public journal, I had no need to let my feelings be known to anyone else. However, that has all changed in the past few weeks. This site has become my saving grace. It has become a place that I could vent and sometimes even scream at whomever is controlling this nightmare.

So many of you have e-mailed or sent well wishes via Mom’s blog page. I feel as though you deserve to know how the final chapter ends, but I have no desire to place this on her page. Her page, which I set up to be able to stay connected with her, has become a place of hope and strength for so many of you. We have received hundreds of e-mails to let us know how much she has helped others. This was the reason, to get her message out there. As we learned today, she was rated as the number 3 blog in almost 2,500 weblogs. That means hundreds of you who may not have known her before this, do now. This means you are absorbing her message, taking care of yourselves, and loving your life more than usual . . . this is what her message was all about. Her page will never be updated again, I won’t allow it. Her message needs stay in tact, clear, and effective, not cluttered by her decline.

Here, you will find out how she is doing (on an almost regular basis), how we are doing, and when the time comes, you will find arrangements here as well. Now, onto an update on how she is.

After having some problems yesterday with breathing, not liking the injection she received in her back, and having more pain that I have ever seen, she is doing well today. She is relaxed and quiet. She is tracking less often (the eye movement that occurs as she catches the outline of something, her eyes track it), her breathing is less labored, her rates are slowly falling. For the past few days we have all felt as though she is holding out for something. Some of us believe she may be waiting for Halloween to be over with, other’s have different opinions. I don’t know what to think.

Her sleeping habits are now taking over the majority of the days. Nighttime, we are not so lucky. As most people who are at this stage, she is very fearful of the night hours. She will lay for hours, just staring at something, unable to sleep (or unwilling to let herself). We just want her to be in a state that she can relax, sleep or not.

We have all agreed that the end is close, just none of us can confirm just how close. She has already surpassed the time frame the hospice gave us. She is a fighter, that is for sure. If any of us knew what she was fighting against, we would fix it. However, we have been told that death doesn’t go on our time table. Her death will occur when she is ready, when she is needed elsewhere. For now, I only wish her peace.

Friday, October 29, 2004

Hating

At first we thought it was that damn tumor. We figured it was due to swelling. Now we know it was a stroke. After all this, she has had a mini-stroke. Her speech is impaired, her arm is useless to her, her ability to even swallow has been compromised. Today, she cried and told me she hated herself. She knows how much she has lost. How do I explain to her that we hate what is happening to her, but we love her even more than she will ever know?

God, I blame you. I have always been taught by her to not blame you, but I do. I hate you for this. I hate you for allowing this to happen to her. I hate you for not giving her peace now. I hate you for so many reasons.

My hatred against you doesn’t last long. She would never allow me to stay angry that long. She taught us to not stay mad. It is for her that I love you. Give her peace, God, just give her peace.

Break

She is having a rough day. Rough enough that I can’t stand being here with anymore. I can’t stand to see her like this. I can’t stand to see this 89lb woman cry out in such pain that it takes her breath away, this woman who is my mother. I need a break. We all need a break. She needs a break.

God, where the hell is her break?

Monday, October 25, 2004

Harder

Today, we took Mom to the hospital for a spinal tap to release some fluid build-up. She wasn’t happy about this but did tell us she would like it if it didn't hurt so much. We promised her it would ease things and off we went. We ended up having to forget that method and we were all set to bring her home when it was suggested that she have a lower ultrasound to rule out blood clots. We agreed to this as did she.

However, in the middle of the test, she decided she no longer wanted to do it. They came to the waiting room to gather up as many as they could, she needed to be calmed. After several stern warnings, we finally got her calmed and transported back home. How can this get any harder?


Sunday, October 24, 2004

Her Ocean

I am typing this at midnight as we drive down Hwy. 71. We are in a caravan of sorts. My father, mother, my aunt, and my mother’s Hospice nurse, Debbie are all ahead of us in the Navigator. Seated next to me is my sleeping daughter, sitting up front is my mother’s nurse Caroline, driving is her husband, Kevin. Seated directly behind me is my aunt Sophie and a family friend, Barb. Directly behind all of us in another car is another family friend, Andy, my mother-in-law, and Debbie’s husband Mark. I have to pinch myself to make sure this day is real.

Today we took a journey. It was a journey of hope, of renewal, of sadness, and of peace. We took my mother to the ocean. (At least that is what she is insisting on calling it. In actuality we took her to Prose Lake.) This is not the only thing we have done today. I want to treasure this day forever. I never want to forget a moment of it.

This morning we asked Mom if she wanted to take a drive to see the water. After last night, none of us believed she would say yes, but she did. We made some calls, rounded up people and medications, and off we started. We hadn’t been on the road long when she began to ask for a drink, so we stopped along the hwy. at McDonald’s. Mom has ALWAYS despised McDonald’s so I anticipated a fight. I was mistaken. We ordered a Sprite for her and as I held the straw to her lips she whispered thank you to me. After she had a drink and shook her head she didn’t want more, she sighed and said it was the best drink she had ever had.

We started back on the road, but not before she made it clear she needed to call a certain person. The joy we heard while speaking to her was overwhelming. She was animated again, and it was so nice to see. We got to the city and asked her if she was hungry (knowing she was not). She said she was, could we go to a "real restaurant?" We headed to the nearest Chili’s eatery and asked for a table to accommodate all of us. The staff was very considerate during our stay, tending to every need we had, making Mom feel as if she was an important patron even if she slept through most of the meal.

We left the restaurant and headed to the lake. Once there, my mom became animated again. She insisted on being taken to the water’s edge, sitting alone so that she could devour the beauty and the took great pleasure in pointing out things we should photograph. After some time, it began to turn a bit chilly. We headed for the car knowing she was exhausted. Almost to the car we spotted them, what we had heard our whole time at the lake. The beat drummers. Mom was enticed by the lulling sounds coming from their ever continuing beating. She sat with her eyes closed, blankets tucked around her, oxygen tube attached. All this made me see a very peaceful person. A member of the drumming team came to speak with us, offered a traditional beat prayer, and proceed to beat out the most beautiful melody with his team. Mom slept thru most of this, but she had a smile upon her face.

We left the lake shortly after, intending to come home. She insisted otherwise. As we drove past certain places, she asked what they were. At this point, her eyesight is growing dim, so we told each store. She heard us say bookstore and that was it, she wanted to go. We asked if she was certain she was up for it. Long story short, 4 hours later, a bookstore, a Starbuck’s drive-thru, and a Wal-Mart Super Center, we are on our way home. She is asleep with a smile on her face, I just heard. This is a day I don’t want to ever forget. This is a good day.

Saturday, October 23, 2004

No more

She made a choice today, entirely on her own. We will no longer draw blood twice daily to check her counts. We have been doing this for weeks, to see where her counts were, to see what blood products she needed, to see how well her body was handling intense chemotherapy.
No more. We will no longer check to see what she needs to sustain her. We will no longer keep records of her Hg level, rbc, wbc, B-rubin, etc. We will no longer race against the clock to make sure she gets the proper bag of platelets so she doesn't bleed to death. No more. That is what she said. No more. And so it will be...

Wednesday, October 20, 2004

Resistance

Just when we think the end is coming in the next breath, she surprises us. Maybe I am not clear, I think I had better backtrack. Last night (or early this morning), Mom was in pain, horrible pain. Her breathing was erratic, her hands were clenched around her sheet, her eyes were not focused. I really saw the end in sight. We gathered around her, knowing she didn’t want to be alone as she left us. In a matter of moments, it all changed.

Fast forward to this afternoon. She is doing much better, we are urged to go out and grab a bite to eat. While we are eating, we call home to find out how she is. There is no answer. We call again. No answer. We begin to gather our things, fearing the worst, calling once more. We call cell numbers to nurses. We sit stunned, not knowing what to do, yet knowing the entire time.
Finally a voice is reached on the other end of the phone. It is a one-sided conversation that we can hear. We all breathe a sigh of relief that my father seems to be collected. Then I hear him say "YOU ARE WHERE?"

It seems my dying mother convinced her nurse to take her for a drive to visit the Grand Falls, a favorite place of hers. Here is a woman who can’t withstand the weight of blankets on her as it brings on massive amounts of pain, but she is out cruising in a car over gravel roads. How am I supposed to understand this?

We drove out to meet her. She was napping in the car when we met up with them. When she heard our voices, she opened her eyes and smiled at us. I have never seen her so happy. She kept reaching out to touch me, saying "my family" over and over. She was thrilled to be outside again. I was thrilled to see her smile. She was exhausted and we left shortly after to return home. The entire drive home she mumbled things, incoherently about "got out," "my family," and so on.
Once we got home, she was so tired she didn’t wake as Dad carried her into the house. We got her settled, and she was just worn out. We all gathered in the kitchen to quiz Caroline on what really happened. Then we heard it. A scream that will echo in my head for as long as I live. We raced to her, only to find that she was laying on her side just as we had left her, only now she had a look of terror upon her face, not the peaceful one we had left her with. My eyes quickly did an assessment: oxygen? Check. Arm propped? Check. Blankets arranged so as to not cause pain? Not check. I then realized something was terribly wrong. Her blankets were in disarray, but the cath. tube was . . . WAIT. Where was the cath. tube? It was hanging from the bed, not where it should have been. She had taken it out. She had pulled something out that was stitched in. When does this end?

Tuesday, October 19, 2004

Fighting

Today was horrifying for all of us, especially for my mother. Many things have fallen into place while I was back in Germany. Arrangements have been made, routines have been set, certain guidelines have been put into place. I am no longer a primary caretaker, and that role has been filled by my aunts. I am grateful for this. I know how hard it is and am very glad that they are here to help take the large part of her care.

While I was gone, her organs started to show signs of decreased activity. This involves all organs but the main focus is upon her kidneys. She went thru a rough round of dialysis in the early spring, and we have kept an eye on her levels since that point. Sometime while I was away, it was decided that the best thing to do would be to place a Foley catheter line (better known as a cath. line) in order to decrease her discomfort. We knew this would not be an easy thing to do as she is a fighter.

She didn’t prove us wrong. She fought hard it enough that it took all of us to hold her down. Her hatred for this medical intervention is very evident. She has attempted to pull it out every change she has had. Watching her like this is more than I can handle. She is fighting now, for what I don’t know. I don’t know what she is fighting for. Maybe that is the hardest part right now, not knowing.
While I was back in Berlin returning to come here, my father called each day to keep me posted. The night before I was to be on flight I finally got the courage to ask him how long. I expected to hear weeks. We have been here before, touch and go situations, I figured this was the same. I barely heard him when he spoke what I didn’t want to hear, "days Punkin’, days." I couldn’t fathom what he was talking about. I had just seen her a few days before, how can anyone change that much? Now, I understand.

Nightmare unfolding

This past week, I received a call from my father that simply said "Your mother just signed herself into the hospice program." My heart was broken the moment I heard that. I was to be back in the U.S. on Monday, but in my mind I had already started to make the arrangements when I heard my mother’s voice on the phone. She sounded weak and yet strong, tired and yet refreshed. Her voice came through the phone lines clearly, "Do not come home early. Be with your daughter, hug your husband, we will see you Monday."

Now, if I have learned one thing in my years it is that when my mother speaks, everyone must listen. I pleaded with her to make sure of her choice. She was firm in her words. So I stayed, preparing myself for the re-entry into a nightmare I thought I would never find myself back in again. I went thru all of the motions, packing up my child to make a continental trip alone, kissing my husband goodbye at the airport, knowing that the next time we were together would be at my mother’s funeral.

I was met at the airport after our flight by family and friends. They spent the entire two-hour drive describing in detail what I was about to face. I thought I was prepared to see her, after all, it had only been nine days since I had seen her, how much change could there be?

I walked into her new room. She was no longer in her bedroom. In the time that I had been gone, she had acquired more equipment that was designed to assist her as she narrowed her path toward death. She had been moved in the den for space reasons. I stood in the doorway for a moment, trying to take it all in. She was having problems, and this was clear. My aunt and my father were at her side, speaking softly, rubbing her arm, trying to calm her. My other aunt glanced up and rushed to me. She began to tell me that my mom didn’t know who anyone was, that this was something we just had to deal with, that it would pass.

I walked to her side, confident that she would know who I was. She didn’t even see me, she couldn’t look at me, she was terrified. I reached out to touch her and she let out a heartbreaking whimper. I sat down where she could see me and just started to talk softly to her, just as they were. After a long time of just speaking to her, she began to recognize me. It is now 6a.m. and I have sat with her the entire night assuring her that it is ok. Why do I feel as though I am lying to her?