Not Getting Better

Thursday November 13, 2014

Adam comes to my room to let me know my mother is pretty alert, so I get up and go to her. After we have been talking for a while, she says, “I need something that’s going to give me hope. I manufacture it at night. There’s not any left, and I’m not getting better. Can somebody tell me something that will give me hope?” I just listen. It’s really hard not to offer her comfort when she cries, and when she’s so clearly in despair.

She wants to call her cousin Renate, who has been like a close sister to my mother. “I’d never forgive myself if I didn’t at least try,” she said, tearfully. So I call Mom’s sister, Christa, to get a number for Renate’s hospice.

“Tell her things are going fine here,” Mom says, “so she’s not so freaked out.” I think, I can’t tell her that. “Tell her I have a cough so I can’t talk,” Mom says. But Christa doesn’t answer so I leave a message. She calls back moments later, and after I ask her if she has Renate’s phone number, she explains that it’s not possible to call Renate, who is not doing very well at all. Mom can hear Christa’s voice coming out of the phone and begins to cry.

“This wasn’t supposed to happen like this,” Mom says. “We were going to end up in Iziba” – she means Ibiza, a Spanish resort island – “on the Strand, to make up for the crappy life we had before.”

At this she weeps again. I look at her, thinking this has been my worst fear, that she might die without having felt she lived a good life. A few months ago, when I first expressed that fear to her, she assured me that since her recovery from ovarian cancer in 2001, she has been “content, very content.” Now I’m not sure I can be comforted by that anymore.

“I can’t believe she’s going to leave without saying goodbye,” Mom says.

* * *

“I don’t like that phone,” she says, “I need to take it back.” She’s said this about her brand-new Samsung Galaxy S a few times in recent days, another clear sign that she thinks she’ll live long enough for it to matter.

I want to spare her the psychological pain of accepting that she is dying. The rallying cry of the codependent. But I’ve always struggled with those boundaries – how much must I suffer in order that my mother not suffer? Here, there is nothing I can do. This journey toward acceptance and peace is her last camino, and the prizes the greatest she’ll have ever won.

* * *

I wondered yesterday if I wouldn’t be hearing from my sister about a return visit.

* * *

The hospice chaplain comes at one o’clock. He’d called earlier to see if it was okay, and I’d said yes without asking Mom. I hoped he’d engage her in a conversation about the end, and he did gamely try to do so. At his invitation, she begins to recount things that give her joy – the clouds in the sky with their shapes – and then she cries. It’s about Renate, who might die today, she says.

The chaplain later tells me that he tried to engage her in an end-of-life discussion, “but she wasn’t going there.”

* * *

The rest of the afternoon and evening passed without much incident. Silke visited and rubbed Mom’s feet. Mom was asleep most of the time, but she did break down and cry to Silke about something I wasn’t privy to. She cried more than once today. Sometimes she’d say she was sad about Renate, and sometimes she wouldn’t say or I wouldn’t ask, and I’d wonder if she was crying because she knew or feared she was going to die.

I can see the immense comfort of a belief in life after death. All this fear, transformed, in small or large part, into hope for a beautiful adventure of some kind. I don’t know what Mom’s views on the matter are, exactly, though I have my speculations. I haven’t asked her about her views of life after death because I may as well ask if she knows we think she’s dying. It’s premature, and would only distress her.

* * *

She looks at the furniture in front of her – the dining room table, the shelving, the TV cabinet – as if seeing it for the first time. “How did all of this get in here?” she asks.

“You brought all this in here, Mom. It’s all in your house.”

“Is it in the same location?” she murmurs, though it takes me a while to understand her.

“Yes,” Adam says. “It’s the same location.”

Friday November 14, 2014

Adam got up at around 2a.m., and I went to bed about a half an hour later. In the middle, I helped Mom into the bathroom and back and Adam helped me tuck her in.

In the morning I go to her as soon as I come out of my room. “I almost went crap outside the bowl,” she says. I move her portable commode out of the bathroom and closer to her hospital bed.

* * *

I hear Mom talking to the hospice assistant. She is saying something about not being at home. The hospice assistant tells my mother that she is, in fact, at home. The next time I check on Mom, the assistant is making up her bed and Mom is sitting on her portable commode with her legs covered. She moans a few times and the hospice assistant tells me Mom is complaining of bladder pain.

“I’m so sad,” she says.

“What are you sad about, Mom?”

“Renate,” she says. “This.” Here she gestures toward her condition. “I just wish I knew,” she says. In her much-reduced voice there is overwhelming sadness.

“You wish you knew about Renate?”

She nods. “I just want to be able to say goodbye. Say thank you.”

“She knows you’re thankful, Mom.”

“I know,” she says. Irritably. “It’s not about her.”

* * *

“When is Candy coming?” she asks.

“I’m not sure,” I say. Candy had texted me yesterday to check in, but hadn’t answered my question about whether she wanted to come back.

About ten minutes later, she says, “Did Candy call?”

“She texted me a little while ago,” I say. “She’s still seeing if she can get permission to leave.” I do not know this to be true.

Mom tears up. “I don’t want her to have problems. She doesn’t have to prove her love. I remember what it was like being a single mom.”

* * *

“There’s gotta be something I’m worth it to eat,” Mom says, or something like that.

Worth?  “You’re worth plenty, Mom.”

“I just haven’t eaten in five days,” she says.

* * *

Other times, what she says doesn’t make much sense. And five minutes ago, she gestured toward “the golden thing on the table”. For some reason she had me fetch the small sculpture so that she could examine it.

* * *

“How long have we been here, in this house together?”

“You’ve been here eleven years.”

“I mean this time.”

“About two and a half weeks.”

Her eyebrows go up. She whispers. “That long?”

“Yes.”

She gazes off to her right for a while. “Was I in a coma?” she asks.

* * *

She reaches for my hand. I’m sitting on the couch, but I get down on the floor next to her bed and take her hand. “Hands across time,” she intones. “Your hands were so fat and cute.”

“You’re my favorite,” I tell her.

She smiles. I turn her hand over and lift it up to my lips. I tell her I need to get on one of the business calls I’m somehow able to keep doing. I remind her where to find the bolus of the medication pump. She grips it in her hand and raises it to her mouth, as if it’s her glass pipe.

* * *

I am leaning down to press my face against hers. I breathe in her soft grey and white hair. In her small, girlish, trusting voice, she says, “Am I getting any better?”

“Are you what?” I say, not sure I’ve heard her, or maybe I’m just terrified of where it’s going.

“Am I getting better?”

Breathe.

“No, Mom,” I say.  “I don’t think it’s getting better.”

Her eyes fill with tears and her face is a mirror of pain. She puts her hands over her face and begins to shake with weeping. She begins to keen. I am beside myself.

“I wish someone could tell me something,” she says.

“Do you want to see a doctor?”

“No, because then I would know for sure,” she says. “We don’t know what it is.”

“We know the cancer is spreading, Mom. We know there are certain signs, like the fact that you can’t eat, or your confusion.”

She cries again, ripping the flesh of my heart. Is this not just the worst conversation I have ever had?

After a while she says, “I think I knew a while ago. You just have a feeling about your own body.”

“You mean when you felt something was different, in the last few weeks, and months?”

She nods.

“You did everything right,” I say. “You have been a true warrior in every sense. And you touched and inspired so many people.”

“They used to say that when I was five,” she says.

“Say what, Mom?”

“Say I inspired them. I never understood it.”

“We’ll always be connected, Mom.”

“I know,” she says.

* * *

“I don’t know how I’m going to live without you,” she says, and she begins to shake again.
A little later, she asks her friend Inge, who is older than Mom, “When you die too are you going to come find me?”

* * *

“Am I getting better?” I don’t see myself forgetting that. In that small, pitiful voice. And how vulnerably she simply accepted my answer, like a child.

For a man whose mommy issues revolve around his desire for her to be happy, there is no test like breaking the news that there is no hope, that she is dying.

* * *

Adam and I come back from almost two hours at the local Starbucks, where I distracted myself from the heart-ripping conversation I just had with my mother. Inge and Monika have been watching over Mom in our absence, and they hug us and leave soon after. I sit down on the couch next to Mom’s hospital bed.

“Gregory knows,” she says, referring to the boy she nannied for years, and who loves her like a grandmother.

“Knows what, Mom?”

“That I’m dying,” she says.

Ah.

That’s the first time she’s said those words.

* * *

I don’t think I’ve had any experience more alien than looking at my mother, watching her sleep, hearing her breathe – and trying to grapple with the reality that in a very short while, she will no longer be lying there, no longer be in this house. Knowing that there’s nothing I can do about it – a few more days like this, maybe a week, and she won’t even be sleeping quietly in a hospital bed. She will cease to exist! How to wrap one’s head around that? I’m anxious about being in this house with nothing but memories, ghosts, of her. This is her house. She fixed it up and filled it up with memories and I can’t imagine her not alive in it. I worry about how alone I will feel. I’ve had one parent all my life; what will I do with her gone? When cooking or food comes up, I’ll think of her, want to share, and remember with a start that I can’t call her up any time I want. She once told me she experienced this when she thought of calling up Oma. When I travel, I’ll think of how much she would have liked to come. When I see nature, I’ll remember her appreciation and wonder, and her gratitude.

There will be a mom-sized hole in the world, and I can’t even begin to imagine all the ways my life will be different because of it.

* * *

Berle writes me a lengthy text full of the usual love and generosity.  In part of it, she explains that my mother recently translated the German book Perlen des Lebens for her and Peggie.  The way your Mom translated that book is a cherished memory Peggie and I will never forget. It was as though she could feel God’s presence while reading it to us which brought about some wonderful, emotional conversations. Your mom has been blessed in many ways, but mostly by having you.

At the end she writes, She is always in my thoughts and prayers and I know there’s a fabulous kitchen awaiting her in heaven.

* * *

It’s around 8 o’clock and Mom is dozing in and out, mostly out. The medication pump keeps beeping, annoying both of us. While I put in a new battery I hear her talking in her sleep. I can’t make out what she’s saying. A minute later she spots my vaporizer with one eye opened about twenty percent and the other ten, and she asks for something.

“You want what?”

“Weed!” she bellows.

I clean out the charred material in the bowl of the glass pipe and add some fresh indica. I hold the lighter over the bowl and she inhales. And once more. And without further ado she says, “Good night, my beloved son” and closes her eyes.

Saturday November 15, 2014

Last night. She asks me to join her on the hospital bed. I hold her hand until both of us fall asleep. I wake up at about 1:30a.m. Mom has forgotten how to use her pain pump, so I sleep on the couch and wake up to administer doses whenever I hear her groan. At about 6a.m., Adam wakes and I go to my bed in the bedroom to sleep until 9.

Adam says she cried a lot in the night. “She was sobbing. She said, ‘There are so many books I haven’t read.'”

* * *

Morning. She looks around her without comprehension. “I keep being puzzled by all my stuff.”

“What puzzles you?”

“That it’s here. Because I don’t know how it all got here. I don’t know how I got here.”

“From where?”

She shrugged. “From hospice, wherever.”

“Well your stuff is here because you’re in your home. Your little house. You’re where you want to be. And hospice has been coming here.”

“How long have I been here?”

“You’ve been here the whole time.”

“I’m hungry,” she says. Eventually she chooses toast with butter and jam. As I’m getting up to go to the kitchen, she says, “If we’re this close to Erlangen, why can’t I have sauerbraten?” Erlangen is her hometown in Germany.

I just lean down and kiss her forehead. I’ll never have her sauerbraten again either.

* * *

She wants a pastry. She has told friends she wants pastry for over a week, and they keep bringing pastries that no one eats. But she says she wants something with “some nice cheese on it,” so I pull on a coat and walk to a nearby bakery. I walk past the stores we used to shop in, past the consignment store that put our proceeds toward hospice care, past the salon from which a stylist came to my mother’s home a few weeks ago to do her hair, and wouldn’t take payment. This town, which my mother came to for a relationship, and which she stayed in partly because she didn’t see much evidence of my settling down anywhere else, is filled with my mother.

I don’t want to be here after it happens. I don’t want to be among all these memories. I want to be far away.

* * *

She cries about leaving us.

“We’ll always be connected, Mom. Always be together.” Remembering that yesterday she asked her friend Inge if she would come and find her, I say, “We’ll be together in no time. I’ll come and find you.”

She comes out of the frozenness of her sadness and says, “You better bring some good Camino shoes.”

Berle and I laugh with her.

“Look at that smile,” I say, and I kiss her cheek and her forehead.

“You take such good care of me.”

“That’s because you’ve always taken such good care of me, Mom.”

* * *

She tells Berle that her body has betrayed her. Berle’s face is all empathy. She makes sympathetic noises. I don’t really know what to say, so I say, “Your spirit is still untouched, Mom. That body is just a vessel.”  Berle agrees.

“I wish my spirit could take my body for a walk,” Mom says.

* * *

She complains to Berle that she woke up at 5:30am and didn’t know where she was. Someone should have explained where she was so it wasn’t such a surprise, she says. She is crying.

I’ve never been able to withstand the sight of my mother crying, but when she’s crying because she knows she’s dying, because she fears losing us, I am utterly stricken.

This unspeakable sadness.

* * *

Berle and Silke are here. They rub Mom’s feet and reassure her. She cries, as she has been crying since I told her she was not getting better. I can’t even imagine what she feels, knowing the end is near. How can she not be crying in every waking moment?

I look at her in her hospital bed, usually sleeping, and my brain seizes up while trying to imagine her not being there in a week, the bed empty, the house quiet. There she is, breathing. Huggable. But next week?

Time is running out. What to do? How to make the most of her time? Should I be reading to her? Making her laugh? Reminiscing? I’m afraid I provide no entertainment, no comfort other than the constant attention I give her. I can’t keep my hands off her head, her shoulder, her face. I kiss her every other time I pass by. I fly to her when she cries. Of course she did all this for me, once upon a time.

* * *

Via text Mieshelle tells me that our beloved Great Dane, Jazzy, is being euthanized this evening. She lived longer than average, maybe ten or eleven years. But like Uncle Horst’s death and Renate’s dying, I am not nearly as affected by Jazzy’s death as I would be if I had been there. Or maybe I just have nothing left in the grief tank.

* * *

The morning rivers of sadness fade to a trickle in the evenings. Tonight Mom sleeps. Adam sleeps. Oma and Opa’s ancient clock sits atop the heirloom buffet and audibly counts down the seconds. They are slipping away, 3600 every hour, for several hundred more hours. They will be up before I know it. The heaters blow white noise. It’s not even eight.

The last party

The last party

Comments Closed

15 thoughts on “Not Getting Better

  1. Remarkable, Cameron, the gift you have for sharing these painful, beautiful moments. I feel I’m there with you, and yet I never suffered the pain of my Mother’s pain, her tears, her resistance to her own death. Somehow, my Mom went a different way, sparing us, and denying us too, the sense of helplessness and agony over her suffering. I never felt I really knew her, or that I was ever able to totally return the gift of nurturance she gave me. As painful as this is for you, I know you’re strong enough to bear it, and that you’re bathed in the blessing of this unique, exquisitely painful and poignant time with Inge. Thank you for shedding this light for me and others like me. Renge’

  2. Words fail me to even begin to tell you how touched I am by reading your blog . Tears streaming down my face as I’m once again reminded of the loss of my Mom . Racing against time to make it back to Germany to see her one last time but not able to make it there in time because the cancer took her before I touched down . It’s been 3 years ,and I miss her every day and that will always be that way . I don’t know your Mom but since she and I share the same name she must be amazing !! My heart goes out to all off you and I’m sending hugs to each of you !! Squeeze your Mom super softly for me please !! Alles Liebe Inge

    • Thank you for sharing that with us all, Inge. I’m heartened that people like you are touched. I’m sorry that you weren’t able to see your mom, at the end.

  3. Adam represents the definition of the word “Friend”
    Inge-Cameron-Adam
    You have my upmost admiration.

  4. Cameron — This is painful and marvelous insight into the human condition. At some point, we will compare notes on our parents. But, for now, I follow your path (and that of Adam) every day, and keep you, Mom, and Adam in my prayers. Much love.

  5. Chris: I’ve stayed in the bedroom where you are residing currently. I have eaten at your mother’s table. I have sung songs with your mother, and exchanged laughter. One day, she will ‘see’ her brother or mother or Renate, and tell you about it, and she will be calm and realize she is headed for another adventure. Such a personality! And, she gave birth to two generous souls. God bless.

  6. I can hardly breathe when I read your words of love about this smazing lady who helped me to hold it together when I was losing my mum. A piece of my heart will always be with Inge for walking me gently through my own loss & devastation. My thoughts are with you Cameron for what lies ahead & for a love which cannot be replaced.

  7. Cameron, my heart goes out to You and My dear friend Inge. She is such an inspiration, a beautiful Lady with a beautiful heart.

  8. Thank you for sharing these last moments with us Cameron, I can’t imagine how
    you must feel and how difficult this must be for you, as I sit here with a heavy
    heart and tears in my eyes. I have never met Inge in person, but have become
    very good FB friends with her over the past few years. We have had many
    conversations over time, funny ones as well as serious ones. Just 2,3 weeks ago
    she still commented on my posts or liked pics of my daughters. Every “like” I
    got from her made me smile as I knew she has not been feeling well.
    If there is a good moment and you feel like it, tell her “Hallo aus Michigan”
    from me. I know she might not remember, but I am thinking about her a lot and
    send lots of positive energy to all of you to get through this difficult time.
    Lots of hugs
    Daniela

  9. I admire you for your Love and Compasion you have for your Mom.I do Hospice Care and I know how difficult it is.I pray that God will give you strengt,to go on.If I can help in anyway please let me know.

  10. My prayers are that God will wrap his arms around Inge and keep her from any suffering and pain. Cameron, Adam and Candy I have all the respect for you all as you have handled this situation with such grace. Thanks for keeping your mother’s teal sisters aware of what is happening. Love and hugs to you all.

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