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Dear Mom,

Dear Mom,

When my previous therapist and I were talking about grief work, she suggested that I write you a letter. We both knew I wasn’t ready for that, so she told me to keep the idea in the back of my head and take advantage of it when it was time.

When I was talking to my new therapist about how I felt visiting your house these days, she asked if I’d written you a letter. I said no. Then I started crying and said I wasn’t ready. She just nodded.

As both of them told me I should write to you, I guess I should listen.

I suppose I’m finally ready.

It was triggered by something unexpected: a new CD. P!nk’s new album, The Truth About Love, was released yesterday, and I was listening to it in the car today while I was running errands and then heading to the gym. Song #9 is “Beam Me Up.” I started crying after the first verse and didn’t stop until I turned the car off at the gym. Then I listened to it on the way home and started crying again. I put it on the computer while I was settling in and just kept crying. (I’ll put the lyrics and a link to the song at the end here so you can hear it.)

I think this means that I’m not okay and that I still really, really, really miss you.

I’ve tried to be very Buddhist about this whole situation. I know that death is inevitable and that attachments lead to suffering. Sure. It’s true. I’ve also tried to shy away from all the “it’s just not fair” crap. But it’s not fair. I do feel robbed of decades of your love, your advice, your wisdom, your ear, your example. Your hugs. Our arguments. Holidays. Shopping. Celebrations. Shared loss. My life is proving to be so much like yours that I know you could help me walk along my own path. When I don’t know what to do these days, I don’t know to whom I should turn. Dad’s been doing a great job, but there are some things he just doesn’t want to hear. I know it’s hard for him.

There are also still some things I need to know that you never told me. Like, I know all about Richard. Well, I know a lot about Richard. But I don’t know how it finally ended, how you got over it…if you ever got over it. I remember finally meeting him at a funeral–was it Bibba’s?–and, when you pointed and said, “That’s Richard,” my going over to him and saying, “Richard? Hi! I’m Allison, Sallie’s daughter. I’ve heard SO much about you!” I think the expression on his face made your decade.

And more about your first marriage. You must have seen so much of it reflected in my own marriage. I don’t know why you were behind my marriage as strongly as you were. Maybe you just wanted to support me. Maybe you thought that having a man who loved me would be the only thing that mattered, even if that was about the only good quality he brought to the table. I remember asking you how you felt when you got divorced. I don’t remember exactly what you said, but I think it was along the lines of disappointed or like a failure. I said I felt free. You reacted almost like that made you sad.

And how to manage all of this crap. This past year and a half has been so hard on me, mom. I’m at a point where I really don’t feel like I can take anything else happening. I might literally crack. Everyone keeps telling me how strong I am–and I know that I am; I get that from you–but I’m so tired of having to be strong. You were always so good at multitasking and juggling everything. I know it annoyed me sometimes because I never felt I had your full attention, but I understand now. And the way you handled your cancer was a model for all of us. You never complained about anything, never said you felt pain, even when I knew you did. I could use the lessons that you learned during that journey. I wish you could teach me how to suffer with grace.

It’s so hard for me to go back to your house. I’m honestly glad I don’t live there anymore. I don’t know how dad manages. All I see when I walk in is your illness and everything I could have done better. I see myself struggling to learn how to help you use the bathroom and hurting you, I’m sure, in the process. I see myself causing you pain when I tried to move you. I see myself being short or gruff when I was frustrated–not with you, but with the cancer and what it was doing to you. I see myself trying to hurry you when you had no energy for anything. I know that I’m only human and that I did the absolute best that I could, but I could have done better, mom. And I’m sorry. I’m sorry for the times I hurt you or made you uncomfortable or forced you to do things you didn’t want to do. I know those things don’t matter to you. But they matter to me.

I’m sorry.

People always say things like, “If I could only go back and have five minutes to say everything I need to say, I wouldn’t leave room for any regrets.” I don’t have that regret. I think the one blessing your disease gave to all of us was a chance to say everything. I said everything I needed to say multiple times, and your responses were always what I needed to hear. There was nothing left unsaid. So I don’t have much to add here in that respect. You know that I’m sorry for all of the trouble I caused, and you told me that it wasn’t the bad times that you remembered, but the good. You know that I love you, and I know you love me. I just wish you were here. I wish I had that one minute, “just to stare, happy just to be there, holding your face.”

I miss you, mom. I love you so much. I’m tired of the pain and heartbreak of grief. It feels just as acute right now as it did right after you passed. I’ve heard it never gets any easier. That sucks. The worst part of having a mother who was my best friend, who was such an amazing woman and role model, is how big of a void your passing leaves in my life.

I hope that one day your memory only calls up happiness and not this wrench in my heart. Like you wrote on my poster–that awesome gift you gave me as a going-away present for the Peace Corps with all of my friends’ pictures and space for them to sign their well-wishes. You wrote, down in the corner near a picture of us at the beach: “Honey, may you always think of me with a smile on your face and in your heart–I’ll love you forever and beyond. Mom.”

I miss you, mom. I’ll always love you forever and beyond, too.

-A

Beam Me Up Video

“There’s a whole ‘nother conversation going on
In a parallel universe
Where nothing breaks and nothing hurts
There’s a waltz playing frozen in time
Blades of grass on tiny bare feet
I look at you and you’re looking at me

Could you beam me up,
Give me a minute, I don’t know what I’d say in it
I’d probably just stare, happy just to be there holding your face
Beam me up,
Let me be lighter, I’m tired of being a fighter,
I think, a minutes enough,
Just beam me up.

Saw a black bird soaring in the sky,
Barely a breath I caught one last sight
Tell me that was you, saying goodbye,
There are times I feel the shiver and cold,
It only happens when I’m on my own,
That’s how you tell me I’m not alone

Could you beam me up,
Give me a minute, I don’t know what I’d say in it
I’d probably just stare, happy just to be there, holding your face
Beam me up,
Let me be lighter, I’m tired of being a fighter,
I think, a minutes enough,
Just beam me up.

In my head, I see your baby blues
I hear your voice and I, I break in two and now there’s
One of me with you

So when I need you can I send you a sign
I’ll burn a candle and turn off the lights
I’ll pick a star and watch you shine

Just beam me up,
Give me a minute, I don’t know what I’d say in it
I’d probably just stare, happy just to be there, holding your face
Beam me up,
Let me be lighter, I’m tired of being a fighter,
I think, a minutes enough,
Beam me up
Beam me up
Beam me up
Could you beam me up.”

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Saturdays

I miss my mom the most on Saturdays. I was telling my running partner that, and she asked why I thought that was. I suppose it’s because I have more time to sit around and think on Saturdays. It’s usually the day that I clean, so there’s a bigger chance of me running into mom’s pictures in the hallway. And I guess it used to be the day that I always called her. I called her a lot during the week, too, but Saturdays and Sundays were when we were able to slow down a little more, talk a little longer.

There are so many things I want to talk with her about. She was somehow able to listen to me impartially and without judgement, even when I pushed the boundaries of her propriety or when I was heading down a path she didn’t agree with. She always had great advice. Especially when it came to things like my career and my relationships. I could use a little of both right now.

People in my life are still telling me that they’re amazed at how strong I am. I don’t see it. But I also don’t let many people see the parts of me that are cracked to breaking, so maybe it’s just that people don’t know. Maybe I am selfish with my grief.

I thought I was doing pretty well with the whole grief thing. I think I just somehow put it on hold for a little while. It’s creeping back in. Usually on Saturdays.

One of the regular readers of this blog was emphatic about me reading Anna Quindlan’s One True Thing. She wouldn’t let my hand go at the funeral until I promised I’d read it. I ordered it back then, but it’s been sitting on a shelf ever since. I was busy with school, then busy reading other things on my list. I probably also knew I wasn’t ready.

I started reading it this weekend (yes, on Saturday). It’s been painfully difficult and brutally familiar to read. I’m flattered that anyone would think I write like Quindlan: she has some beautiful lines sprinkled here and there. But stepping back into the life that I lived for so many months is…raw. It’s making me feel relieved that someone else understands exactly how it felt. It’s also making me feel guilty for all the things I could have done better. And it reminds me of how strong my mother was.

I am not strong. Not like her. I’m not sure I’ll ever have her grace.

I’m only about halfway through the book. I’m having trouble putting it down, but, at the same time, I’m afraid to finish. I’m not sure I’m ready to relive October 17th, the day I was midwife for my mother’s soul.

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Thanksgiving

We went to Williamsburg last week for Thanksgiving, as we do every year. It was strange because we were staying in a different hotel for the first time in over 30 years. (No one’s exactly sure when our family started staying at the Lord Paget, but it was well before I was born.) I think that made it a little easier, being somewhere different. It made mom’s absence seem less acute…for me, anyway.

Last year at Thanksgiving, I took a lot of videos. I knew it was going to be the last year we would stay in that hotel. I didn’t know it was the last time mom would be with us. But she opened the night with a toast, and I got it on camera. I tried to post it here, but the format isn’t accepted. She’s very teary and says something like, “May we have many more years together…if not here, then somewhere.” Quite apt, I think.

I ran my fastest 5k ever at the Turkey Trot, clocking in at 26:07. I’m quite proud of that.

It’s interesting, but I felt mom most strongly when I went shopping at the outlets on Black Friday. We’ve done that together every year for the past…gosh, I don’t even know how long. I missed her being with me. I missed us struggling to find a place to eat lunch, and I missed being dragged through the Christmas Mouse store to look for antique Analee dolls. I did go by the Williamsburg Cheese Shop to get all the stuff mom usually got for our Friday pizza party (cheese, pate, hummus, bread, etc.).

Dad had a rough time.

He had surgery yesterday to remove the basal cell carcinoma on his lower right eyelid. It seems to have gone well. Besides some soreness, a headache, and looking like he got hit in the face with a mallet, he’s doing just fine. I’m hanging out at the house today to make sure he’s fed. I was just going to come over this morning, but I stayed last night because they wanted an adult in the house in case he had a delayed reaction to the anaesthesia.

I’m tired and looking forward to getting my own life back on track. I feel like I’ve spent so much time taking care of and worrying about other people, I’ve been neglecting myself. I’m looking forward to a long Christmas vacation.

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November is National Lung Cancer Awareness Month. Rather fitting, don’t you think?

I’ll be running in the Free to Breathe 5k at North Hills on Saturday morning in honor of mom. I don’t think I’ll be breaking any records since I haven’t trained for it, it’s going to be freezing, and I’m not taking Friday off (I always run better if I rest the day before), but I’ll still have my shoes to the pavement. My company is some sort of sponsor, so they’re even paying for my registration fee.

I hope you will all continue to remember my mom and her valiant fight against lung cancer in your own ways. I still count her among my heroes.

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Black Blood

I’m afraid I wasn’t much help to dad today at all. The hospital bed got delivered when I was on a conference call, so I couldn’t help with that, and then I was away getting a physical when the CNA was here to move mom onto the bed, so I couldn’t help with that, either. I feel ridiculously guilty. But I did warn dad last week that Monday would be better if he wanted my help with this.

So mom is settled into her new twin-sized bed, which they put at the foot of their king-sized bed. I think it will be better. It will make it a lot easier for those of us who care for her, and it will help her to sit up a bit more, which might make her more inclined to eat (pun intended!). I don’t know, though. She’s not doing so well. Her catheter bag was full of black liquid this morning. Dad said he thinks her kidneys are failing. The hospice nurse said it was either her bladder or kidneys. I asked the nurse if that hurt mom, and she said no.

Mom has no energy, no muscles, no desire to eat…her desire to drink is waning, too. The hospice nurse said that mom will soon go into a coma-like state where she just doesn’t have enough energy to wake up. She said that they don’t really know what happens internally in terms of the dying withdrawing and tying up loose ends in their own minds. She said sometimes people will be able to react when you speak to them, like opening an eye or making a movement that acknowledges that they heard you, but sometimes they can’t. She did add that people can always still hear…that hearing is the last sense to go.

They made the decision to stop all of her medication today except for her beta-blocker (they’ll stop that too, pending approval from the hospice doctor) and half of her Zoloft. I’ve been wondering when they were going to stop the Tarceva. It can’t be doing much but aggravating her stomach. It’s a hard decision, though, I know. Especially psychologically. We’re not going to give mom the medication that’s helping to stop the cancer growth. Not an easy choice. I think it’s for the best, though. I mentioned to the nurse that I was curious to see when they’d stop the Tarceva, and she said that she’d brought it up before, but dad hadn’t been ready until now. I guess he’s finally starting to come to grips with this.

Before I left, he said that this is sad. I said of course, but we don’t want her to hang around like this forever…it’s just not good. He didn’t want to talk much after that. Can’t say I blame him.

But the good news is that mom still knows who I am. She still hugs me back, and she still says, “I love you, too.” That’s about all I have left of her now, but I can’t tell you how much I’ll miss that when it’s gone.

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Oxygen

I’ve been spending Friday evenings at my parents’ place, usually getting there around 4:30 or so and having dinner with dad. This week, my dad’s brother-in-law was in town, so they invited me to go out to dinner with them.

I got there a little later than usual (had to put on nicer clothes!) and went in to give mom a hug. Hugging her usually consists of me resting my head on her chest and squeezing her as best I can. Sometimes she squeezes back; sometimes she’ll kiss my forehead; sometimes she’ll pat me; sometimes nothing. I put my head on her chest and immediately noticed that she was having trouble breathing. It sounded a lot like when I used to have asthma attacks, except without the wheezing.

I asked her if she was having trouble, and she nodded. I asked if she needed the oxygen (the hospice nurse had ordered it a week or so ago–maybe two?–just in case), and she nodded again. I asked if she was just nodding or if she really needed oxygen. “I probably need the oxygen,” she said.

So I went and asked dad how to turn on the machine. He said she hadn’t needed the oxygen yet, but they’d been talking it over for a couple days, and I told him that she might need it now. He turned it on (it’s a nifty thing that filters oxygen out of ambient air and shoves it through the tubing), and we fit it around mom’s head. Mom started breathing faster. It’s the same thing I went through with asthma: you can’t breathe, so you freak out, which causes you to try to breathe faster, but you can’t, so you freak out, etc. I tried to calm her down, and she did.

I tried to ask her some questions about what it felt like. I asked if she had trouble getting air in, or if there was any pain, or if it felt like her lungs were constricted (that’s what asthma always felt like to me). She said it felt constricted.

It was hard to watch her there, breathing. It looks like her rib cage is protruding, which is probably a result of her losing so much weight from not eating. Her skin is kind of melting…that’s the best way I know how to describe it. All that’s left there are bones.

One of mom’s friends came over to sit with her while we went out to eat. I told her what was going on, and she said sometimes food can get caught in the lungs. I told her I thought there was a better chance that there were large tumors caught in her lungs.

Mom only smiles when her friends are visiting. She never smiles like that for me and dad. To be completely honest, it hurts our feelings. I’m sure it’s because her friends come to visit and bring her nice things, and dad and I take care of the necessities and force her to do things she doesn’t want to do (eat, bathe, brush teeth, change clothes, etc.). Dad even mentioned last night that mom was tired of having him around. I don’t think that’s true. She knows how much he is doing for her, and she loves him a lot. It’s easier to see that about other people, though. I understand where dad’s coming from.

Dinner was nice. We went to St. Jacques, but the owner was off taking care of his new B&B, so it wasn’t as fun as usual. Food was still good. My uncle said I was turning into “an elegant young lady,” which is an awfully nice compliment, I think. I talked with him a little more before I left my parents’ house. He took care of his mother for a long time; she passed away when she was 92. He said it never gets any easier to lose someone close to you, no matter how old that person is or how long you’ve had to prepare. I’m finding that to be true myself. It’s just no fun at all.

I’ve got a girls’ weekend planned coming up. I hope we’re able to go. I’ve been looking forward to it for a long time. And we’re not going too far away, so I will still be able to get to my parents within an hour or so if something happens. I wish mom could come with us and enjoy the spa like she used to. I know she wants to take a hot bath more than anything. I tried to make her understand that it would just be impossible to get her up and into the tub, much less get her out of it again. Maybe we can get a kiddie pool and put it in her bedroom? 🙂

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Another week, another Tuesday. Dad had an early appointment, so I’ve been here alone with mom for most of the day. No one was sure whether or not the CNA was supposed to come sometime (they’re moving her up to four days a week, but I guess no one had said which four), but no other visits were scheduled. It’s kinda nice.

I went in to see what mom wanted for breakfast and noticed that she had thrown up during the night. There was dry, crusty stuff that looked mostly like blood to me all down the front and side of her shirt and on the pad underneath her. I did my best to change her shirt (watching me try to take the old one off would have been hilarious had it not been so sad…it’s very difficult to change someone’s shirt when she’s just lying there), and I put a clean pad over her old one while I called to see if the CNA was indeed coming (if not, I’d go ahead and try to change everything). After a few rounds of phone tag with hospice, the CNA called to say she was on her way.

Of course, she came right when I have my weekly (phone) meeting with my manager. The one appointment I have all day. So there’s me with my cell phone pinned between my shoulder and ear, talking with my manager about a matter of procedure, kneeling in the middle of mom’s bed, and helping the CNA slide mom in and up on the bed. Talk about multi-tasking.

Mom’s always exhausted after nurse visits. I’m sure it’s because she gets manhandled and has to expend a lot of her energy. I was trying to get her settled and get her some food since she said she felt nauseated again. She’s on a two-bite kick: two bites of breakfast, two crackers, two bites of sandwich, two spoons of yoghurt or smoothie, two sips of water. I wonder if she’s aware. But that’s all she’ll take these days. Anyway, I got her some crackers, and she didn’t seem to like the way they stuck to her teeth, so I figured it would be a great time to brush her teeth, especially since I’d forgotten to do it earlier. Bad caregiver.

I’ve been working with mom for MONTHS about not swallowing toothpaste. Apparently this is something she’s done her whole life, I don’t know. But the first time I had to help her to the sink a while back, I noticed she wasn’t rinsing and spitting. She was under the assumption that if it’s safe to put in your mouth, it’s safe to swallow. I know she never reads ingredient lists, but toothpaste is not your friend! So now I make a big deal out of “rinse and spit!” I brushed her teeth for her (awkward if you’ve never done that before; all previous times, she’s done it herself) and held up a cup. I must have said over a dozen times, “rinse and spit; please don’t swallow!” I don’t know if she couldn’t understand or was just in the habit of swallowing, but she swished the water around and swallowed. Ugh. I made her rinse and spit anyway, though it was very hard for her to figure out how to do it. When we were done, I asked if she needed anything. “Yeah,” she said, giving me a nasty look. “I want my life back.”

Nice.

She was sure she had to be somewhere for bridge, either at church or her friend’s house. It took some convincing for her to believe she didn’t have to go anywhere. I put on the TV and tried to get some work done. When I went back, I asked if she was okay…she looked very confused. She said she was confused. I asked what about. She told me that it was like she had two lives, one on the TV that was causing her to miss the other. I turned off the TV and asked what she wanted to do. She said sudoku or read, which is what she always used to do, so I got her the sudoku book and a pen that writes easily.

Boy, that didn’t go well. I don’t know what she was doing, or what she thought she was doing. She started by putting a 1 in a box that already had a 1, then told me I was wrong when I told her she couldn’t do that. So I just agreed and let her do her thing. I checked back on her a few times, and there were some scribbles in a few places, but no numbers. Every time I walked by the room, though, she was staring at it intently. I wish I knew what was going on in her mind.

When I walked by and she was asleep with the book in her hand, I took it away. I got her two bites of lunch, and then she agreed to read a book. She’s been in bed reading for a while. It’s really a small miracle. She hasn’t read, to my knowledge, for a long, long time. It used to be her favorite thing to do. I hope she’s getting some enjoyment out of it.

I also hope she’s getting some sunlight. I opened the blinds in her room. Poor dad…he loves birds, and he said the last time he opened the blinds, a bird flew into the window and killed itself. He just can’t win. (And, yes, he even has those decals on the windows that are supposed to tell the birds that there’s glass there.)

I’ve been doing a little better these past couple of days myself. I went to yoga, which I haven’t done in ages, with an instructor I haven’t seen in months. She was my first real personal trainer. She’s a very kind soul, and I was hoping that yoga with her might help me remember to treat myself with kindness and compassion. I spoke with her a bit after class, and it turns out when she was 16, she lost her mother to cancer. They had a four-month warning. It’s so sad, how many people this disease touches. It seems like everyone. I hope I can make yoga a part of my regular routine. It’s another thing I can’t afford, and I’m horribly inflexible, but it’s a nice way to touch base with what’s going on with myself. Just like meditation, it brings a lot of crap to the surface that can then be scraped away. I hope.

So here’s to small miracles, two bites, and two lives. I don’t know how much longer we’ll have with mom, but I hope she can spend that time doing what she loves to do.

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