Monday, August 13, 2007

Keeping It Together, or Losing It

The one thing my family has always been good at was hiding our true emotions. I joke about it. "We're WASPs," I say. "We know how to keep it together."

It's true that my dad and Stacy are very sensitive. They both cried a lot in the 2 1/2 years that my mom was sick. Kristy and I, and especially Mom, we all kept it together as much as we could. When on that fateful Wednesday a month ago they told us Mom was really dying this time, my first reaction--my very first thought--was to get to the doctor and ask for some tranquilizers so I could keep it together, so I could get through this.

I don't judge. And I hope no one judges me. Those were tough times. Mom was dying but not dead. There was grief to have but someone had to hang on. Someone had to write her will when she asked for it. Someone had to write a will for Dad when she asked because she knew he never would do it himself. Someone had to sit down with Dad and tell him that in this will that I had written for him, he was stating that his son (his adopted son, but still his son) was to get nothing.

They had agreed to this, my parents, a couple of years ago, but my dad had never done it. Not because he didn't agree. God, if I am to be honest, he was probably relieved that Mom had finally decided this so he wouldn't have to. And it is the right decision. There are people who will only hurt themselves with whatever you give them. There are people who will only hurt themselves and probably those around them. There are people you protect from themselves by limiting their means.

But that is for some other day...

Someone had to decide that Mom was already too mentally incapacitated to decide if she wanted to sign the Do Not Resuscitate order. Someone had to talk to the doctor and hear the hard facts about brain damage due to lack of blood flow to the brain, about the slim to no chance of reversal of this brain damage. Someone had to read into the words of her living will and search for meaning to apply to this situation. What would she have wanted?

She didn't want to be kept alive if she had diminished mental capacity. That day, that Thursday a week after she was told she was going to die, the nurses were there. One visited from each of the two different hospices we had to use because the insurance company would cover only one thing for this hospice but only this other thing for that one. The social worker visited. Mom got frustrated and walked into her bedroom, where I had been sitting. Then when she saw me she turned around and walked into the dining room. (With my help.) She sat in a chair and was so confused. She said, "I want to be alone. I need to think." I think that is the last lucid thing she ever said. I think that was the last chance she had to realize that her brain was slipping away from her. And she was scared. And confused. She didn't know what to do or say, just that she was conscious of losing control, and that thought seemed to take all her energy.

I thought of that as I told Kristy I thought the right thing to do was sign the DNR. We also had to realize that because of Mom's brain damage, we could no longer explain our choice to her. And that because she was a nurse, a nurse who often cared for the sick and dying, she knew what that orange bracelet would mean if she saw it. The doctor suggested we put it on her ankle so she wouldn't see it. The doctor agreed with our assessment that in her current state she may not understand anymore that this is what she used to want, but that we should still do what we thought she would have wanted when she was herself.

And it wasn't just me. Equal in this task of keeping it together was Kristy. She held, after all, the official medical power of attorney. But we both knew, without ever having to say it, that all the tough decisions were to be made by the two of us, and then explained afterward to the others. We were going to explain it to Dad and Stacy that night, get their agreement before we made it official. We called Stacy and told her she needed to come back up that night because we needed to talk to her. (It was to be her first night home, her first night off, and I had had a conversation with her that it was ok to go, that Mom would not die if she left.)

Kristy went out that night with her boyfriend, and I was left with Mom alone for a bit before Dad got there. She was sleeping peacefully in the living room. Dad got home and we had some pizza. Suddenly Mom woke up. She was upset, panicking, crying. And she couldn't talk. Her muscles were all clenching up. The doctor said I would know when she was in pain, would know when to give her some morphine. I did. And I did. But she didn't want it. She clenched her teeth shut, but she was missing one tooth so I was able to squirt the morphine in there. It didn't seem to help. She wanted to get up, I thought, though I didn't know because I couldn't understand her moans. She couldn't talk but she could moan, such horrible moans.

She hadn't urinated in over 12 hours, so I thought maybe that was it. I helped her up, walked her into the bathroom with my dad's help. I had my arms around her waist and she had hers on my shoulders, resting there, not holding on, in a macabre dance. We got there and I tried to sit her on the toilet (which she always called the commode), but she would not sit. She began to panic more. I thought it was perhaps because of my dad's presence. She's always been uncomfortable to be in such a vulnerable position in front of a man, even her own husband. But I couldn't do it myself, so there was nothing for it but to bring her somewhere else, wait for Kristy to come home to help. I didn't tell this all to my dad, of course. It would have broken his heart just a little bit more to know this truth about his wife.

We brought her into the bedroom, decided she might be comfortable laying down. Dad went over to get the bed ready, and Mom swayed to the right. I nearly lost her, she nearly crashed into the desk. I was not being a good dance partner. Dad came running and we righted her, got her to the bed together. She was still just as uncomfortable, clawing at her clothing, her legs and arms curling up into a half fetal position as she made incomprehensible syllables with her mouth, and leaked tears from her wide eyes. I decided she needed more morphine. She didn't want to let me go; she started to panic worse as I moved away from the bed. She seemed to understand the words I said, though, as I promised to be back in just one second, and that Dad was staying right there with her. She clung to his hand as I ran down the hall, grabbed the medicine and my phone.

I called Kristy, told her to come home right away. I tried to give Mom the medicine, but as I was drawing up the dose and explaining to her as I did, she screamed the last audible word she would ever say: "NO!"

I didn't. I put the medicine down and went back to her and told her that it was okay, I wouldn't give her the medicine if she didn't want me to. I talked about how Kristy would be home really soon, and Stacy would be too. Dad and I sat there as she kicked and waved her arms about, trying to make us understand her senseless sounds. I called Stacy. I told her she needed to come right now, not later on tonight.

I think there was an hour or so that this went on for before Kristy got there, but it seemed that there was no time anymore, that we were just stuck in a vacuum, just the three of us. It was the most horrible thing I have ever gone through. When Kristy got there, she called hospice as I sat with Mom. They said to give her more morphine and some Adivan to make her comfortable. We dissolved the Adivan in a tiny bit of grape juice and added the liquid morphine to disguise the taste. I had explained to Kristy my theory on why Mom was so opposed to taking the morphine.

When she was still relatively mentally present but knew she was losing it, we talked once or twice with the nurse about the fact that it could be the morphine that was making her confused. This was before we knew her pulse was only 30 beats per minute, before the doctor said no, it was the brain damage. Of course by the time we had talked to the doctor, it was too late to explain that it wasn't the morphine. So we lied to my mom. We talked to her soothingly, explaining that we were giving her Adivan dissolved into liquid, that the nurse had said that it would help calm her. She complacently parted her lips and let us feed her the drug she had used her last word to protest against.

Stacy arrived. Mom seemed to want to get up. She wanted to go to the living room, we thought, the best we could understand. We moved her back to my dad's recliner, doing the strange dance back down the hallway. The nurse called back and when she heard that Mom was no better, told us to give her more Adivan, more morphine. Said that Mom was actively dying now. But she didn't come. Kristy and I, we just wanted the nurse to come. No one had prepared us for this.

After the second dose (third of morphine), Mom calmed down a bit. We decided that she should sleep in her bed so we got her up and tried to walk her down the hall once more. We only got her as far as the kitchen and she couldn't put one foot in front of the other anymore. She refused to have Kristy's boyfriend, Nick, pick her up (as he had done when we brought her home from the hospital the day before), and everyone stood around Mom unsure of what to do now. Finally, I silently signalled Nick to come up behind Mom where she couldn't see him. Then we slowly leaned her back into his arms and she acquiesced. Nick carried Mom into the bedroom and laid her down.

At some point during all this, I explained to Dad and Stacy about the decision Kristy and I had reached about the DNR, and Kristy signed the papers. I took the orange bracelet and slipped it onto her ankle as she thrashed about on the bed. Then I pulled socks over it so she wouldn't see it, telling her that her feet needed warming.

Things settled down eventually, Mom went to sleep, and we all retreated to our separate corners. Dad laid down in his (formerly their) bedroom and cried. Kristy and Nick went downstairs. Stacy insisted on being the one to stay with Mom all night. Kristy told her to call downstairs if anything happened. I made a bed on the couch and looked up what "actively dying" meant. It is the process that the terminally ill go through as their bodies begin to shut down. It usually lasts up to 48 hours. I fell asleep eventually.

Kristy woke me early in the morning. Stacy had called her because Mom was spitting liquid out of her mouth and she didn't know what to do. I went in and assessed the situation. I remembered during her deep sleep that evening that she had been drooling, and realized that she had lost the ability to swallow while unconscious. We rolled her onto her side and I cleaned up the spittle that was formed on her lips. We applied some lip balm. Stacy said she still wanted to be the one with her. I told Stacy to lay behind her to keep her propped up on her side, because she kept falling onto her back. On her side, the spittle would just drool out the side of her mouth. Once we could all see that Mom was breathing normally again, I told Stacy to call me if she needed anything else. We all went back to sleep.

Dad woke me when he left for work. He said he didn't know whether to go into work that day, but I said that based on what I had read the night before, it could be a couple of days before she passed, so he went. I went back to sleep. Then Stacy called. I don't remember exactly what she said. In fact, I don't know if I even answered, or just ran down the hall. But there I was in the room, looking at Stacy standing at the head of mom's bed, her mouth open, eyes questioning. Looking at Mom's chest and seeing that it no longer rose and fell. I went over and touched her, confirmed to Stacy, "She's gone."

I told Stacy to go down and get Kristy. I called my dad and told him the same two words I had told Stacy. I leaned over in that room, alone with my mother's body, and kissed her on the forehead to say goodbye. That was my own personal last goodbye to my mother. I knew she was no longer in the body, that even though only a minute or two had passed since she breathed out her last breath, she was no longer there. Maybe she was still in the room, maybe she saw me kiss her forehead, but I knew the gesture was really for me. And then that was it. I had more to do with her body in the coming hours as I ushered people in and out to see her, but I did not understand why they did want to see her. I knew that wasn't her anymore.

Someone called the hospice nurse and she came out. I called my Aunt Mary at work and she came right away. We made other phone calls. There was confusion as we realized we couldn't remember the name of the funeral home where we had made arrangements years before when Mom was first diagnosed. There are moments in the following days that are crystal clear to me, but most of that time was like a dream. And I think I've been in that dream ever since.

Days after my mother died, I had to deal with the fact that I was dating a crazy person. I went to New Hampshire for a week and stayed with Whitney and Jake. On the day I came back, there was my cousin's wedding, where among the people who came up to us with their condolences were the Big X's parents and his best friend. But not him. He couldn't find it in himself to face me or my family, to anger his new girlfriend by talking to us.

There was another week after that. I don't remember a lot of it. I was home and didn't go out, hid from the world. Linda and Scott moved in. On Thursday I went to Greenwich about my tooth. Jake's dad is a dentist and he would see me without charging me until the insurance company reimbursed me. It needed to be pulled so I drove to Rye, New York, to see another dentist who is a friend of Jake's. He pulled my tooth and gave me a prescription for vicodin and sent me home without charging me.

I made Kristy's birthday cake, an angel food cake with Betty Crocker fluffy white frosting and coconut flakes, just like Mom always made for birthdays. After we went out for dinner, we had the cake and Kristy opened her presents. Kristy and Stacy decided that it was time to clean the basement out. We had promised that we would do that after Mom died. They decided we needed to do it that week--last week--and we were going to spend all day and night all week doing it.

I went home that night and moved my bed, did some cleaning in my bedroom. When I moved the mattress, I put my back out. I called Kristy the next day and told her I didn't want to come, that I wanted to rest my back but that if they felt that they really needed me, I could come. They called and told me to come. I went, angry, and sort of lost it with them. I came home and cried a lot. I was upset about my back, about them not understanding, about not having time to work on my thesis, which I hadn't done a thing with since my mom was checked into the hospital over a month ago. I was getting calls from bill collectors. At some point over the last month, I had let my life fall apart, and it all came out there in front of my sisters, and then later in front of my friend Rachel.

I had been on tranquilizers when my mother died, and then there was a week or so when I was on nothing, then when my tooth was pulled, I was on vicodin, then when my back went out, I had to take my muscle relaxer. My niece came over for a couple of days from Tuesday night through Thursday. I was on nothing again then, but then on Thursday after lunch, as we were about to go back to my sister and dad's house, I fell down 16 stairs. I thought I broke my arm. I couldn't move right away, and Vicky was panicked.

I called Kristy and my neighbor came by after awhile, helped me up. Kristy brought me to the hospital when she got here, and after a few hours, we were told that I was lucky, hadn't broken my arm, just sprained it, but had broken a toe. I left the hospital with a big blue boot and a matching shoulder sling. For a few days I took vicodin for the pain.

Now it is Monday after that Thursday.

I took the sling off yesterday. I have since Saturday been only taking the vicodin at night so I could stop the pain enough to sleep. I was going to go over and help Kristy with the basement for awhile tonight. I was walking into the dining room with my Discover card bill, getting ready to write out the check, when all I wanted was to sit down with family and have a nice dinner. So I called Kristy and she and Nick are coming for dinner.

I hung up the phone and cried. I cried those big, racking sobs that sound nearly like laughter. I cried until I couldn't breathe. I cried until snot was pouring from my nose. And then I cried some more. Rose called me and Jake IMed me during this time. I told them I couldn't talk now, was having a crying jag. And I cried some more.

I didn't keep it together. It felt terrible.

Friday, August 10, 2007

The Train to Crazy Town, Part I

His name was Andy. Our first date was the night my mom was admitted to the ER. It was also two nights after I had returned from the UK. He was one of the sweetest men I had ever met. When I got the call about my mom and told him that I was going to need to leave a bit early, he could see how upset I was. He insisted on coming with me for the drive, and waited outside while I went in to see my mom.

When we got back, I was still very shaken. I think I knew we were nearing the end with her. He offered to stay at my apartment (on the couch) in case I got upset during the night. I took him up on the offer. It was so nice to have someone else to depend on for once.

Over the next week and a half, he came over nearly every night. We spent most of the time sitting on my front porch, talking late into the night. Some nights we drank. Some nights I drank too much. He stayed over each night--not on the couch. He was half Irish, half Indian, which made for an interesting (and sexy) accent. He talked about marriage and children, about love, about being there for me no matter what.

I am normally very guarded, and this was all exactly what scared me off from P., but at that exact moment in my life, as I was informed that my mother would soon be dying, as I had to break this news to more people than I can count (and be the one to comfort them in the process), as her health declined severely and rapidly, as my sisters and I were working out 24-hour shifts between us and being forced to make decisions about Do Not Resuscitate orders and deciding about the competence (or lack thereof) of my mom to make decisions for herself anymore, as all this and more was going on, it was what I found I needed.

When we first heard the news of Mom's cancer, the one thing that helped me through each day was the knowledge that the Big X (who of course wasn't the Big X yet) was there to support me, and always would be, through it all. And he wasn't. And I did it all for 2 1/2 years on my own. Now, at the very end, it was nice to think that maybe now, maybe this time, I wouldn't be doing it all on my own.

On Wednesday night of the second week, he was talking of all those things. He asked me to marry him. I said, "Not now, but maybe someday." I told him that things were going much faster than they should be, that I appreciated him so much and really, really liked him.

But.

But there is no way that in the few weeks we have known each other, he can know enough about me to say that he definitely wants to be with me forever. I have flaws. Many. He said he didn't care, that he knew enough about me to know that nothing would change his mind. I tested that. I gave him my blog to read. On the front page were entries about Ginny and about Goober's death. Also there was the story of my hook-up with Jake's brother.

I waited inside while he read all that and more on the porch.

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And now my arm is tired from typing due to the fact that I fell down 16 stairs today, breaking my toe, spraining my arm, and bruising a bunch of other body parts. To be continued tomorrow...