So Much

A few hours ago, my brother came out and said my dad was talking on the phone with someone and crying. We both wondered who he was talking to, but didn’t want to bother him. A little while later, he came out and told me that Dad wasn’t talking with anyone on the phone. He was listening to a voice mail over and over that my mom left for him a few weeks ago.

“Hey Davie, just wanted to call you and tell you how much I love you. All right; I didnt get to talk to you. I love you. Bye.”

I say today, because I haven’t been to bed, but it was technically yesterday – 6/22 – that my mother passed away, at 6:22 a.m., just four hours after the last blog post. I was up until 4 a.m., unable to sleep, or even get into bed, until I finally couldn’t keep my eyes open any longer. Then I went to bed, only to wake up startled by my sister standing next to my bed, saying my name, and crying. She told me Mom just passed, and I asked when, and she said just now – a minute ago. I asked what time it was, because I was pretty groggy, and she said it was almost 6:30 a.m. The rest of the day has been pretty blurry. The arrangements are being made, and we have to drive eight hours tomorrow, up to York, PA. I’m already to the point where I’m not sure why I’m continuing this post. It looks like this entire blog will be ending before it’s really even started. It’s a testament to how long I waited to start keeping track of my thoughts and feelings about this whole thing.

So my mother is dead. It sounds horrible doesn’t it? It feels horrible. I know I’m in pain right now, but it’s very dull, and I’m scared for the moment it’s really going to hit. I have a feeling I’ll be alone. Right now, when I think about the fact that I will never again see my mother alive, or hear her talk to me, it feels exactly the same as if I imagine the sky raining skittles. It’s ludicrous. How can my mother just be gone from my life in an instant? How can you take one step forward and be in the rain, then take one step back and be out of it? My friends have been so unbelievably supportive. Everyone is calling, texting, and facebooking to keep tabs on how I and my family are holding up. It sure is wonderful how people can come together in crisis. I’m so lucky to have had my mother, and I’m so lucky to have my friends. I’m even luckier to have my family, especially my father, who is having the hardest time dealing with this incredible trial. When Mom really started hurting, they had to get separate beds, so they got two twin beds to put together that were remote controlled so you could elevate your upper and/or lower body, and get a vibrating massage on your back and legs. Now that Mom is gone, I keep wandering back to the bedroom and seeing Dad curled up in Mom’s bed, where she was lying just hours prior. It is so incredibly heartbreaking. He talks a lot about he misses her so much already, and he can’t believe that it’s all over, just like that. None of us can believe that. I’m not shedding a single tear right now, but I have that knot in my chest and stomach – the one that lets me know things are going to get a lot worse for me before they get better. I don’t know how it’s going to go from here, but maybe I’ll post back.

My Mother (this photo is a few years old, but it's a good one)

To Light the Sacrificial Rite

Since I was very young, up until adolescence, I’d remind my mother of a promise she made to me when I was just a small child. I asked her to promise me that, when she died, she would come back as a ghost to let me know everything was okay. She promised. I don’t know if she remembers; I was very, very apprehensive about bringing up that promise again, because it’s hard for me to face the fact that the time is at hand. Maybe if I don’t say anything, she will live. It’s silly to have even a little bit of hope at this point, but so many of my frineds would remember me as both optimistic and idealistic, and wouldn’t be surprised at the things I sometimes hope for. Other people would tell me hope is never silly. I hope (ha) that’s true.

I’m not sure if Catholics are allowed to believe in ghosts. I think they’re allowed to believe in the Holy Spirit, and messages from beyond, such as those received in dreams and visions, but I’m not sure about ghosts. I’m a lapsed Catholic anyways. My sister spent much of today trying to get a hold of priests to give my mother the final sacrament. Most people would know it as the “anointing of the sick,” or “Last Rites.” My sister finally got a hold of the priest from my mom’s old parish in York, PA, where we lived a long, long time ago. He’s handled a lot of stuff for our family. She put him on speaker phone, so he could speak with my mother for a moment. She told him, “Father John, I want to go.” He said she didn’t need the Last Rites performed, because he knew she led a good life. That was really nice of him. We did end up getting two priests from St. Mark’s parish (of Wilmington, NC) to come out around 10 pm, and they performed the ceremony. I stumbled during the Lord’s Prayer. See how good of a Catholic I am? Mom snored through the whole thing. It was both comical and sad. It’s almost 2am, and I just went back to check on her. She’s still snoring. She begged for a long time today to be let go. She begged my dad to give her more and more medicine. She was extremely upset at the idea of waking up. She told us, “Put me to sleep, please.” We may not have given her what she was asking for, but I’m glad she’s sleeping now. The one thing I really fear is that the medicine we give her doesn’t dull her mind. I’m scared that we put her body through the wringer, but she’s totally coherent on the inside. That’s why I wonder if we give these kinds of patients medicine for their benefit, or for ours. Anyways, even though I’m not much of a Catholic these days (though I still capitalize the word), I’m glad mom had the sacrament performed. It was definitely what she wanted.

So now it’s Fathers Day. I know my dad is not going to want to celebrate it. No one could blame him of course. I expected him to be up with Mom, and I suspected he tried, but to no avail. He was sleeping with his laptop sitting on his chest, one of his slippers still on, and he was wearing his reading glasses still. I know he’s super tired. He’s not been able to sleep much or well during the past few weeks. I was able to take his laptop from his hands, unplug it and pull the cord under his leg, take his slipper off, remove his glasses, and give him a kiss on the forehead, all without waking him. It’s so hard for him. He said that she is the better part of him, and that, even though he knows he’s got far to go, she has made him so much of a better man than he was. He lamented about the things they will never get to do together, and I told him I had many of the same thoughts. It hurts me to imagine having children who will never know the incredible love of their paternal grandmother. It kills me to imagine possibly marrying a woman who my mother will never meet (or who will never have the pleasure of meeting my mother). We’re all going to miss out on things, but of course my heart goes out to my father because he spends part of every day with my mom. Her death will truly have further-reaching implications for his life than for mine. I feel almost the same about my younger sister. She is 17, and has only just finished her junior year of high school. Her mother will never see her graduate. They won’t be able to share secrets or talk about boys, or discuss the bigger problems that sometimes accompany grown-up relationships. I’m so sad about how this will affect my family.

Life is so short sometimes, and so fragile always, and I hope I’m inspired to find new and creative ways to really live. And I hope I have even half the love in my heart that I’ve seen my mother give to all the people in her life.

I close this post with a quote from my mother, to me:

“…the more you give your heart away, the more love you have to give. I know this because when I had Christine, I thought how could I ever love another baby like i love her, and then you came along, and you too stole my heart. So then I really thought how on earth could I ever have enough love for 3 babies, & then of course Joseph came along & I was smitten all over again. So when Catherine came along, I knew because of the love I had with and for the 3 of you, that she would not be short-changed in that department.“

“I Want To Go Home”

I’m not exactly sure how long I’ve been here at my parents’ house. Ten or eleven days I guess. I’m fortunate that my job does not require me to sit in the same office day after day; I can be mobile as long as I’m okay with dragging some equipment around with me. I’ve spent a lot of my time working, because it takes my mind off everything else while I’m absorbed in a project. Since I’ve been here, time has flown. Again, I’m not even sure how many days it’s been, and I have a hard time keeping up with the date. Everything has been a blur, and I’m not sure why that fact is an appropriate opening for this post. It’s kind of irrelevant, although I suppose I can tie it to the fact that I want to type a lot of random stuff, and it might be relatively stream-of-consciousness, since my brain feels so mushy at this point.

Today, Mom said she wants to go home. The nurse was there, a social worker was there, and my older sister and I were there. My sister half-smiled, and said, “Mom, you are home,” to which Mom replied, “No, I want to go home.” I might have been the only one to catch her subtly point upward. I said to my sister, “That’s not what she’s saying. What do think she means when she says she wants to go home, and points upward?” and my mom, whether randomly, or because she was listening, interjected a mumbled, “I want to go to heaven.” At this point, I think the nurse started to cry, and the social worker looked like she was about to. Because I’m not even sure what’s going on with myself emotionally, I didn’t cry or get upset. I just felt so bad for my mom. She cries for help a lot. Her cancer is in her bones, and it’s really, really painful, especially in her spine, ribs, and neck, so she always wants to be adjusted, or have pillows added to or taken away from behind her head. Today she kept crying for help, and I’d ask her what she wanted me to do, and she finally told me that she was ready. She wanted me to help her. She’d said something similar to my sister the other night, and my sister started crying, and said, “What are you asking me to do?” and my mom said she was sorry, and didn’t mean it. Today, I think she meant it. She didn’t want us telling her it’s in God’s hands. She didn’t want us saying it’s beyond our control. She wanted us to give her more medicine. She told us she did not want to wake up. She couldn’t have made it any plainer. Twice she called me back there and asked me to help her. I told her I couldn’t do it. It’s so hard, though. She just kept saying she’s ready. She’s already seeing dead people. The nurse said we shouldn’t expect Mom to make it through the weekend.

The worst thing is, Mom’s starving and dehydrated. Hospice refuses to do anything that doesn’t help the dying process, and I think it’s completely fucked up, but what’s the right thing to do in this situation? Are we supposed to let her die of dehydration and starvation, then say cancer killed her? Are we supposed to hook her up to an IV and tube feed her so the cancer really can kill her, but take a lot longer (and possibly be a lot more painful)? I feel like pain is a symptom of the cancer, and we’re treating it with meds. What about the loss of appetite? That is a symptom of the cancer, too, isn’t it? Shouldn’t we treat it with vitamins, minerals, and electrolytes? I thought the answer was to get her an IV and hook her up to something that would act as food, but after listening to her tell us she wants to die (and hear her beg God to please take her), now I’m not so sure. If she is beyond a cure anyways, does that make it right to just let her go? Nevermind the questions about resuscitation and hospitalization. This is such a terrible experience for all involved, and at the moment, I can’t think of a single redeeming factor.

A quick bit of random history: Mom and Dad relocated to this area from about 400 miles NNE of here. Dad got a really great job offer that they decided was too good to pass up. They took along my younger sister, who was 15 at the time. I have two other siblings. My older sister is 29, and my younger brother is 23. I’m 27. We were all old enough not to move with my parents. So my parents moved here, and rented a house while they decided where they would settle down and build the home in which they planned on spending the rest of their lives. They bought a lot just down from where they were renting, in a pretty nice neighborhood in Wilmington, NC (I wasn’t going to divulge a location before, but what the hell). Well, after all the nightmares with the builders, the planning, and the Home Owners Association, the house got built, and by the time they moved in, Mom was already sick enough that she couldn’t help us move. She wasn’t getting out of bed all that much, but she was still trying to get some exercise here and there, and she wasn’t at all what I’d call bed-ridden. That changed fairly quick after moving into the new house. My dad built it for her. She picked out everything about it. This is her dream house, and she has not even seen the upstairs. She doesn’t know what the bonus room looks like carpeted (everything else is hardwood). She’s never seen the guest bedrooms, or her daughter’s room.

Dad was telling me the other night how he wondered sometimes if he’s being punished for something. He knows that’s not the case, of course, but it crosses my mind too. Not whether he’s being punished, of course, but whether I am. He also said, “What the hell am I doing here?” What he’s saying is, without Mom, there’s no real reason to be here, other than for his job. No family (excepting his youngest, now halfway through her 17th year), and very few real friends in the area. He said he imagined working another eight or ten years, then retiring, and spending evenings on the beach, taking walks by the ocean with Mom and whatever grandchildren they had. I guess I’m just complaining about how unfair it is to my mom that her life is ending here, before any of that can happen. It’s one of the worst kinds of tragedies.

Nearly every person who dies leaves behind someone who wasn’t ready. So maybe the real tragedy is that just about everyone dies before his or her time.

The Guilt of the Living

For at least the last six months, my mother has been refusing visitation from even her closest friends. She indicated that, at times, she didn’t even want her own sisters around. She wanted to spend time with her husband and children only, which has been a challenge sometimes, as the “kids” live in different cities and different states. I don’t know whether it’s common for someone in my mom’s condition to want not to be seen, but I would guess that many people feel the same way. She felt like merely a shadow of her old self, and hated feeling like she could not entertain company. Furthermore, she didn’t want to feel like she had to try to entertain company.

The issue with this, of course, is that people have their own selfish reasons for wanting to visit with the afflicted (particularly near the very end). Now, I would never accuse my mom’s friends of wanting to visit purely for selfish reasons, or that the selfishness of those feelings is the detrimental kind of selfishness. Obviously, anyone wanting to see my mom throughout this process wanted to show their support and let my mother know how much she is loved. But I think as time gets shorter and shorter, people need to see their dying friends for themselves as much as for whom they’re visiting. I think this is completely natural (or, at least, natural for this day in age – another topic completely), because nobody wants to feel bad for not being there.

I believe my mom, in a way, has taken away her friends’ ability to feel like they’ve done everything they can to help. They’re stuck between a rock and a hard place; on one hand, they’re respecting my mother’s wishes to be left alone, and not seen in the condition she’s in, and on the other hand, they’re not able to properly begin to grieve. I think most people, once mom’s gone, are going to feel terrible that they weren’t here. Of course it’s not going to be their fault, but they are going to wonder, in hindsight, if they could have done anything more – if they could have insisted on being here. If they could have showed up unannounced and been welcomed. The truth is, we should have told people to do that, because as much as my mom didn’t want company, if someone did come over, she always ended up happier to have visitors.

I just feel bad, because I know if my friend were dying, and didn’t want to be seen, I’d feel terrible afterwards that I didn’t get any closure whatsoever, and the feeling, I think, that would trail behind my sadness would be guilt. Could I have done more, despite my friend’s feelings? Could I have made his/her last moments any more pleasurable or peaceful with my company? Could I have changed his/her mind just by showing up?

It’s been really hard receiving IMs, Emails, and Facebook messages from mom’s (or family) friends, asking for updates on her condition, or asking what they could do to help, or when they could come and see her. I never know what to say, how much information to give, or how to make them feel better about the fact that mom doesn’t want to see them. One way or another, I end up feeling guilty myself.

But I guess, in the end, the guilt of the living is not really the responsibility of the dying.

In the beginning…

There was a mother who loved to spend her husband’s money on ebay. She was oversensitive, and loved to lash out when she felt hurt. She and my dad would fight the most passionate fights before passionately apologizing, taking or placing appropriate responsibility for the issue at hand, and continuing, in like and in love, as fiery as ever.

Last year, Mom was diagnosed with breast cancer again, just five years after beating it the first time, through chemotherapy, radiation, and surgery (lumpectomy). Since then, she’s been through alternative therapies, chemotherapy, the news that it metastasized to her bones, the agony of it eating through her insides, and the bitterness of her memories of the past, when she would entertain her friends, her family, and her family’s friends. Now, she is dying. Not in the abstract sense that one day in the next few months, or couple of years, it’ll finally get the best of her, but in the very real sense that she has only days left. Maybe hours. I’ve waited too long to write any of this down. I should have been doing this for weeks, even months, but I didn’t want to admit that she would lose. I wanted to wait for her to win, then relay her incredible story. This is very sad.

I expect that I will be writing a lot of random thoughts, experiences, facts, ideas, and emotions. There’s a lot happening in my life and in my head, and this blog will anonymously recount some of the things I, my mother, my family, and my friends are going through, as we deal with this very sobering process. I think that’s all I can offer. There will not be a whole lot of happiness here, but I’m posting at wordpress.com so I can maintain some semblance of anonymity, as I don’t want everyone who knows me to read this stuff on my personal blog.

My mother is in her bedroom, moaning in intense pain, for the third time in the last hour. She may need to be moved, or she may need more medicine. We have a baby monitor set up for when she needs us. My dad can be a pretty heavy sleeper. He’s working with a pretty steep deficit right now. So ends the very condensed introductory post.