Fezziwig Press & Photography by Stu Jenks

From The 2009 All Souls' Procession

From The 2009 All Souls' Procession, Tucson, Arizona (c) 2009 Stu Jenks

[All images by Stu Jenks, except the bottom one of me in a kilt, taken by Tom Willett]

 

"Now That's Good"

“Now That’s Good”, (c) November, 2009, Stu Jenks

    There seems to be no telling which way this disease, this dementia, will go. A few days ago, the Old Old Mary was back. The day after that, it’s as if she was never there. A couple days ago, Mary could hardly speak. Yesterday, her speech was clear and easily understood. Today, I don’t know.
    I’m pretty burnt out after a year of this. Yesterday, I gave her some flowers. She said ‘Thank you.’, but there was very little loving energy behind the comment, not because she didn’t love the flowers. She’s burnt out too. Her appetite is back. Her thinking is clearer, yet the engine is still running down. We just have no idea when the engine will stop. My hope of Mary’s eminent death has faded away.
    I fear too much now: Afraid that the money will run out. Afraid that Mary will suffer much more than a couple more weeks, a couple more months, that Mom could linger for years. Afraid that I’m not really up for The Long Haul, of a couple more years of this. Maybe more. It’s beginning to take its toll on me. It’s very hard to watch someone you love, someone who prays for death everyday like she does, be denied that which she wishes for: To cross over to the Other Side, to see Dad, to see God.
    In a week I’ll be driving to Chicago to have Thanksgiving with a couple of my best friends. I’ll be gone for a week, maybe less. Not too long ago, I thought of canceling the trip, since I thought Mary may die within days or perhaps weeks. Now, I’m going. Mary’s not going to die anytime soon, it appears, but frankly, who in the hell knows? I don’t.
    And I’m one of the lucky ones. We have money. Mary can be in a nice home, with a well-trained staff. So many in America and around the World don’t have money, are having to put a parent or spouse in a health care hell-hole, or having to care for them, themselves, losing their own independent lives, to being a caregiver twenty four, seven. I can pursue my Art career, take care of business and then see Mom every day, whenever it works for me. If we had no money, or no access to a Medicare home, Mary would be living with me. I’d only be leaving the house to get more supplies or when someone was there to watch her, so I could pursue my own dreams, if only for a few hours at a time. I’m so fortunate, but I don’t feel so lucky today. I haven’t felt lucky for a while. I’m not ungrateful, mind you. Just really fucking tired.
    I was the speaker today at a spiritual support group I belong to. I talked about the middle path, the spiritual discipline I try to be faithful to, the journey that is the most fulfilling when I listen to the Quiet Voice Within, not the Monkey Mind of my Ego. And I shared some of the journey with Mom with them. Told a funny story or two. Told a sad story or three. Spoke of my gratitude at being able to help, to try and be giving with few expectations, to being able to be there for my Mom. And then I told them the story of The Highball Request, and then ended with the story of the Medicinal Scotch.
    “So I went and bought the Dewer’s,” I said to the group. “I have been out of the loop for 24 years. Last time, I bought a fifth of Dewer’s, it was ten dollars a fifth. Christ, it’s $30 now!” They laughed. “Anyway, I took the Scotch up to Mary’s place. Two fingers, over ice, big splash of water, and a straw. Found out my mother has her own straw. Go figure. Anyway, I take the plastic cup of Scotch and Water to my mother, to her bedroom. It was after dark. I elevate her bed, elevate her head, and put the straw in her mouth. She sucked and sucked and sucked on that straw. You could see the level of the liquid slowly dropping in the cup. And on she sucked. Then she released the straw from her mouth, threw back her head slightly, and let out a big ‘Ahhhhh.......” They laughed again. “And then, clear as a bell, clearer than any words she had spoken all day, Mary said, ‘Now that’s good!’”

"So Go Ahead!"

“So Go Ahead!”
November, 2009

    Oh crap. We have the Old Mary Jenks back again. Not the Old Mary Jenks of the past few months: the sweet, attentive to others, kind in her comments, genuine woman. No, it’s the Old, Old Mary Jenks from a year ago, all the way back to the day I was born and beyond: the manipulative, demanding, entitled, selfish, dishonest person.
    Today, when she speaks, she gets halfway through a sentence, starts talking jibberish, but now she has major mean-ass attitude attached to it.
    “What...is...important...to...me...is....gib ....gab ...gob ...blek.”
    “Mom, I don’t understand what you are saying.”
    “It...is...important...to...me...that...blink ....bonk .... bah ....zip,” she says, louder, angrier, meaner now.
    “Mom, just let me talk and you can respond. You do that fine.”
    “No...It’s important...to...me....bip ....bap ....boop ...baaaaa.”
    She is insistent, doesn’t want to hear what I have to say. Just demands attention. The Old Mom. The Mary I’ve been distancing myself from for almost half of my life.
    I try the old funny story with her, about taking her out into the desert and shooting her myself to ease her pain, in which, in the past, she has been very sweetly concerned that I would get caught, and that she loves that I would do that for her, that I cared enough to end her suffering. Today, I get back: “So, go ahead.” with the defiance of ‘Just you try it, buddy!”
    I bring up to her, that yesterday, she thought I was dead, that ‘It really upset you, Mom, that you thought I had died, but when you saw me last night, it made you very happy.’ I get a look that says, ‘You were dead yesterday. Don’t you tell me I was wrong.’
    I try and leave after a while, not because I have that many errands to run (what I told her), but because I am getting angry about having Selfish Mary back. At one point, when she was saying that she wanted to die, but doesn’t know what to do, (or I think that’s what she said), I bluntly said, “Mom, just stop eating. You’ll be dead in a few weeks.” In the past when we have had intimate talks about how to die, she has taken mental notes, with a sense of grace: ‘Oh, if I stop eating (or if pray for God to take me, or if relax into Death,) I will die. Very good. Thank you, son.’ You could see her wheels gently spinning, over the past few weeks, with the hope of a peaceful and easy death, shining on her face. But today, she had a look of incredulousness, like, ‘How dare you want me to die!’
    “Mom, I want your suffering to stop. You are suffering, right?”
    “Yes.”
    “It’ll stop when you die.”
    She doesn’t like that answer today. She wants Door Number Three. She’s been looking for Door Number Three, all of her life. The have-your-cake-and-eat-too Door. The Door that opens without any effort on her part. The Door thats all about her. The Door before I came along. The Door before she married Dad. The Door before everything. Fuck me.
    As I leave the house, the part-time weekend caregiver speaks to me from the kitchen.
    “I was getting ready to call you, when you came in. She was yelling; “I want my son!”
    Great.
    “And she ate well today, too,” says the caregiver.
    “That’s too bad,” I shoot back.
    The caregiver’s voice changes. She now knows she doesn’t need to blow smoke up my ass.
    “Yes, I know,” she says.
    “Me too,” I say.
    “See you tomorrow,” I say.
    “Yea, take care,” she says, with true empathy in her voice, this time.
    She knows. I know. We all know.

"I...Don't...Know...What..."

 

"I...Don't...Know...What..." (c) 2009 Stu Jenks

    Mary’s come back to us a bit. Not all the way from where she was a month ago, but enough that she can speak some. She still gets lost in her words, but on occasion, a fully-formed sentence will appear out of nowhere. It’s shocking and delightful, all at the same time. It happened tonight.
    I show Mom the back of my Canon 5D Mark II.
    “I like this shot,” I say.
    “I don’t,” says Mary.
    “Really? How come?”
    “I look ugly,” she says. I think she looks peaceful, kind, pretty, but I’m not making the artistic decisions tonight.
    “I think you look great, but I won’t use that one. How about this one?”
    It’s a shot of her looking up from her wheelchair at the nice hospice worker this morning. It’s a OK shot. Looks a little out of focus. Not great, but OK, if you ask me.
    “I like that,” she says, with a bit of exuberance to her voice. You may not call it exuberance if you didn’t know Mary Jenks, but a slight rise in his faint voice means she’s  quite excited and thrilled.
    “Really?” I look again at the shot. She does look awfully sweet.
    “OK, Mom. I’ll use that one. By the way, I’ve been writing about you and I, and I’m putting pictures of you and such on my weblog, and I’ve got more hits on my blog, than I ever have before.”
    “Is that right?” she says.
    “Yea. People really care about you, Mom.”
    She has this look I’ve never seen on her face until she got sick, but I’ve seen it a lot in the last couple months. A look of being humbly touched by the love of others. No expectations. No demands. Just touched by the Love.
    “I’m going to write about something you said yesterday, and put it on my blog.”
    “What’s that?” say Mary.
    “Well, yesterday morning as I was getting ready to leave, you said very slowly ‘I don’t know how...” and you had a hard time finishing the sentence. I said, ‘You don’t know how to die?’ You said, ‘No, no, no...’ and started over. You said, ‘I don’t know what...’ and then I knew what you meant. I said, ‘You don’t know what you would do without me?’ And you smiled and said yes.”
    The smile tonight wasn’t as big as the one yesterday, but it was a very lovely smile, nonetheless.
    “And then, later in the day, I called C____ , and while we were talking, I told her the story and, out of the blue, she said, ‘I don’t know what I’d do without you either.’ It made my day, Mom.”
    We’re both smiling now.
    It’s great to have Mary back, even if just for a little while: Able to listen, able to respond, able to talk just a little. More times than not, she can’t get the words out but tonight, she’s doing pretty good.
    We talk about this and that. Some sad stuff, but mostly it’s light and breezy. Then I hear my mother use a word I’ve never heard her say before. In my life.
    “Stu...What...I...want......What...I...want....”
    She gives a heavy sigh. She really wants to get this out.
    “What...I...want....is....is...a highball.”
    “A highball?”
    “Yes.”
    “Like a glass of Scotch?”
    “Yes.” She looks hopeful.
    “Well, I don’t know. I know you’ve had wine in the past here. I don’t know if you can have Scotch, but I’ll ask. Would a glass of wine in a sippy cup do?”
    She rolls her eyes, as if saying ‘If I have to have wine, I’ll drink wine, but what I really want is some Scotch.’
    “Mom, I’ll ask Jessica.” I don’t know if hard liquor is on the OK list, but I sure hope so.
    We talk a little more. Mary’s starting to wear out. It doesn’t take long these days.
    “I’m going to go, Mom. I’ll see you tomorrow.”
    Then suddenly, out of her mouth, comes a perfectly formed, perfectly articulated sentence.
    “Stu, do you ever get scared?”
    I pause. I’m taken aback, not by the question, but by how clearly she spoke it.
    “Yea, I get scared,” I say.
    “What do you get scared of?” she asks with perfect diction.
    I think. I know right away.
    “I’m scared of being alone,” I say.
    “Me too.” The light in her eyes says, ‘I’m not alone, thank God.’
    I kiss her goodnight, tell her I love her, and head out to the kitchen to talk with Jessica about the High Ball Request.
    “I’ll give it to her, if you go buy it.”
    “Really? You’d do that?”
    “Sure. It’ll help her sleep.”
    I’m surprised that my eyes mist up so fast, but they do. I’m overtaken by unexpected joy.
    “Thanks, Jessica. I’ll go get her pint of Scotch tomorrow or the next day.”
    As I get in my truck and drive away, the joy doesn’t subside. I call a friend or two or three and tell them about the High Ball Request. One is worried about me buying it. One laughs at the irony. Another is helpful in telling me where the liquor stores are, (For I’m completely out of the loop these days, having not drunk any alcohol in almost 25 years. I was a big Scotch drinker myself, back in the day. Most of us Jenks’ are Scotch drinkers. No bourbon or gin for us. Give us Scotch, single malt, cheap, expensive. We don’t care.)
    I’m home in my apartment. It’s getting late. Tomorrow’s my birthday. A big box with an unopened “Heritage of Scotland” kilt inside sits under my Christmas stick, ready to be opened tomorrow morning. I’m having breakfast with a friend, then helping another friend with a problem in the afternoon. But somewhere, in between all of that, I’m going to a liquor store and buy my mother a fifth of Dewer’s Scotch. I’ll try not to cry at the counter. I know I’ll cry on the drive up to her house.
                            -11:22 p.m., November. 5th, 2009

"Mary Gazes At Her Hand"

“Mary Gazes At Her Hand” (c) 2009 Stu Jenks 

[Tuesday, November 3rd, 2009]

    It’s after dinner. Mary’s sound asleep. I wake her up. She’s happy to see me. I’ve been told that she has rallied.

    “We think it was the Depakote. She been off it five days now. We have to puree all of her food but she ate three meals today. I have to feed her, though. Then again, she may have had a little stroke...” Sounds like Jessica thinks she's getting better. I pray Mom’s not.

    I thank the caregiver as she leaves Mary and I alone. I close the door to her room. I reread her birthday cards to her. I read them to her first, on Halloween, but she was completely unaware of them, and me, that day. It was just four days ago. She turned 83. Tonight, she knows the names of her friends, at least for a few seconds or so.
    We talk and Mom hears me. Says a few words in response: “O, yes,” and an “O, my,” or two. “You got that right,” was the longest sentence she said all night. She can listen to what I’m saying and occasionally respond, but she can’t complete any of her own sentences. Where before she would get confused by the verb: “What I need to tell you is...” and then get lost, now, she gets lost in the first noun: “I, I, I, want...want...I...I...” and then she stops trying.
    “It’s OK, Mom,” I say, but it’s not. Not for her, who wants to speak to her son. Not for me, who wants to hear what she has to say.
    I finish with the cards. I talk about the new Hoop Dancing book that was printed last week, and she seems excited. I talk about how I thought she was close to death, last week.
    “Me, too.” she says.
    I talk about the girl in California, and how I know now there is no future for us. She seems sad and confused. She liked, when over the past few weeks, my eyes brightened when I spoke about the Woman on the West Coast. Mary’s reading my face now as much as she's hearing my voice. She sees I’m very sad. She’s sad too. And confused about what happened between me and the girl. I don’t go into many details. I’m a bit confused too, about how it all came down.
    I talk about how I don’t think she has a long time to live now.
    “No,” she says, not disagreeing with me.
    “Everything is taken care of. There is plenty of money for everything. Your funeral will be back in Virginia.”
    She smiles at that.
    “I heard you talking with Nannie, over the last few days,” I say.
    “Yes...”
    “Maybe she’ll come over from the other side and help you some,”
    “I hope so,” Mary says.
    I mention that I’m getting a fine wooden casket made for her ashes, like the one we had made for Dad. She nods.
    “I’m sorry this is so hard, Mom.”
    She rolls her eyes, saying nothing.
    I laugh out loud.
    “You think funny,” she says with the first big smile I’ve seen on her mouth in days.
    “Yea,” I say, “I’m laughing because you’re the one who's dying, not me. You have the hard job.” I laugh again.
    She smiles and gives a bit of a shrug.
    “I hope Stuart comes to help you too.”
    She looks away. She misses Dad.
    “I feel his presence sometimes,” I say.
    “Do you?” she asks.
    “Yea, I do. I hope he visits.”
    She just looks at me. With a ton of love in her eyes.
    “I love you, Mom, and I’ll love you after you’re gone.”
    “I’ll....love....” but that’s all she gets out.
    “You’ll love me too, after you’re gone.” I say, completing her thought.
    “Yes...”
    “Well, maybe I’ll feel your presence too, after you’ve died.”
    She seems surprised and slightly delighted by that idea.
    “I love you, Mom.”
    “I love you, too.”
    We talk for a bit more and then I say goodnight. I kiss her forehead, like I’ve done a hundred times before.
    “Give me a kiss,” I say as I put my cheek to her lips.
    She has a tough time tonight, brushing my cheek slightly with her lips. I back away.
    “Not...much...of...,” she quietly says.
    “Not much of a kiss? Well, try again,” placing my cheek again to her mouth. This time she makes firmer contact.
    “There, that was good,” I say. “I’ll see you tomorrow.”
    She smiles. I turn out her bed-stand lamp and walk to open her bedroom door. She’s a little spooked at first by the complete darkness but is quickly calmed by the ambient light from the hall.
    “It’s OK, Mom,” I say from the doorway.
    “Good night, Mom”
    “Good...,”
    And the rest just fades away.
    
    

"Mary Sees" & "I Want My Momma..."

"Mary Sees" & "I Want My Momma..." (c) 2009 Stu Jenks

    Mary sees things that are not there. Dad. Other men. Her mother. Her grandfather, Daddy Saum.
    Mostly it doesn’t scare her, these visions. Mostly she just looks at them with wonder. Frankly, I don’t know all she sees because I only ask her when I’m there and when I think the time is right to ask. I’m sure she sees a lot more people and things than any of us will ever know.
    Mary’s condition has worsened. For a few days, she had a very hard time eating anything. Now, she can eat a little. For a few days, she slept all the time. Now, she sleeps about 20 hours a day. Just a couple weeks ago, she could follow a conservation, and respond with kindness and attention. Now, at best, she just goes away as I talk, to some place where I can not follow.     This morning was especially sad.
    I walk into her room. Mary’s asleep. Jessica told me earlier, she has eaten some pudding. I said, “Good,” but I didn’t really mean it. (If she completely stops eating, she will be dead within a month.) I grab the old wood chair from the kitchen in Virginia, move the thick blue pad by her bed, that’s there to break her falls if she rolls out, and place the old chair right beside her bed. I raise her bed with the electric controls, so I can talk with her easier. She doesn’t really wake up. Her eyes open, but she doesn’t really see. I say, “Hello, Mom,” but she doesn’t really hear. Then she begins to say one phrase over and over, very softly, in her strong Virginia accent. Most people wouldn’t understand her. I know exactly what she’s saying.
    “I want my Momma. I want my Momma, I want my Momma....”
    I touch her hand. I start to cry. I cry hard. Her bedroom door’s closed to the rest of the house, so I let fly. I cry for her, for me, for everything. Everything. I don’t know where some things end and where others begin anymore. My deep grief at realizing (finally) that I’ll never share a life, a home, a love, with that fine woman in California is all wrapped up in my sadness at watching my mother die, a very slow and scary death. My own fears of being self-employed, spending thousands of dollars on my art and writing careers, with not enough money coming back in right now, to even come close to breaking even, combines with managing Mary’s money and making sure there is plenty there, just in case she lives another couple, three years or more. My own loneliness with having no one to share my bed mixes with my sadness at losing this sweet kind mother I’ve had for the past few months, who I’ve shared so much with, but who is here no more. My anger at the withholding of important truths by other people in other parts of my life joins with my rage at the mystery of ‘Just when will Mom finally die?’ But at the same time as all of this fury of emotions fills me, day in and day out, I feel this incredibly gratitude: that I have money to draw from, for Mom, for me and for some other good folk in my life; that I have real friends that care about me and I for them, and who are really there for me, as I go through all of this; and that I have this strong faith that this will eventually end, be it my Mom’s long suffering or my grief regarding this huge hole in my own broken heart. That even though it’s not OK, not even close to OK, I’ll be OK.
    “...I want my Momma. I want my Momma. I want my Momma....”
    “I want my Momma too,” I say to Mary. I chuckle. That’s not going to happen. I’m Mary’s parent now, not she mine. But maybe, just maybe, her Momma, Nannie, will cross from the other side and lend a hand too.

"Bozette went shopping..."

"Bozette went shopping..., El Centro, California" (c) 2009 Stu Jenks

    After she and Bozo broke up, Bozette went shopping to ease her pain, only to find that the Mervyn’s Department Store had closed down. She stared at the boarded-up storefront and wondered, ‘What do I do now? Not about the shopping, but about Bozo and I. What do WE do now?’
    The hot desert wind picked up, blowing her red hair into her face. She listened hard to the wind but it gave her no answers. She bowed her head and cried.

[From the upcoming book, "Bozos In Love"]

   

"Mom, I saw U2"

"Mom, I saw U2 with Cathy the other night in Phoenix. We had a wonderful time."

"I'm so glad," she says. It's after dinner. Mary's in bed. She's in good spirits in spite of the scary-waking-visions she's having these days. Today is a day when the dementia makes her feel special rather than cursed. She mentioned to me earlier to make sure I go downstairs and get the $50 in an envelope that is on a chair. There is no downstairs, no $50, no chair. I told her I would get the envelope on my way out tonight.

"They sang this song called 'Walk On.'"

"I know that song," she says. She begins to sing a song. I think it's a Roger Miller song. After a bit, I stop her, to finish my story.

"It's a different 'Walk On," I say, regretting immediately that I had cut her off.

"Oh," she says, but looks at me intently without any shame. Just with love and great interest.

"It's a wonderful song," I say, "About those who have died and have gone before us to the Other Side. I thought about Dad and how I miss him, and I thought about you and how I'm going to miss you when you die."

"I hope so," she says.

I don't tell her that I cried though most of the song, not because I feel any shame about that. I just don't want to break down in front of her, right now.

"I'll miss you a lot, Mom."

She then gets this faraway look in her eye. I know the look. She's getting ready to say sometime very loving, very sweet. If she can get it out.

"I know ...it's selfish of me,... but I told someone today,... that I don't know... what I would do... without Stu."

"You don't need to do anything, Mom. I'll be here for you. Always."

"Thank you, Stu."

I let the Love hang in the air. I don't speak. I don't mess it up. I just let the Circle of Love spin between us. Through us. Through all of us.

"...You're packing a suitcase for a place none of us has been

A place that has to be believed to be seen

You could have flown away
A singing bird in an open cage
Who will only fly, only fly for freedom

Walk on, walk on
What you've got they can't deny it
Can't sell it, can't buy it
Walk on, walk on
Stay safe tonight

And I know it aches
And your heart it breaks
And you can only take so much

Walk on, walk on" - U2

[Photos of U2 were taken from their website.]

"Our Lady of the Rosary: For my mother Mary"

 "Our Lady of the Rosary Church, Little Italy, San Diego, California" (For my mother Mary) (c) 2009 Stu Jenks

[Chapter who-knows-what from the book "Dementia Blues]

    Jessica, the nurse, changes Mom’s diaper as I watch. Mary almost fell out of bed, just minutes before my visit.
    “Oh, Stu. I don’t know what is going on!”
    “I know, Mom. You almost fell out of bed.”
    “No, I didn’t!”
    “Yes, you did, Mary,” Jessica says, gently.
    “Yes. You did, Mom. But it’s OK that you don’t remember,” I say.
    Mary is suffering. Every old ache and pain is brand new, no matter that most are decades old. Her bedroom is forever unfamiliar, in spite of the old prints and needlepoints on the wall that she has owned for years. She often thinks she needs to do something, but she doesn’t know what that something is. I tell her often that this is where she has lived for almost a year. She is surprised every time.
    Later, I just talk about my day; her, laying in her hosital bed, me, sitting on a ancient wooden chair we brought from Virginia. Many days, my chatting about my life is plenty for her. She loves to hear me talk about this and that. She often responds with an “Oh, that’s good.” or “I know you miss your friend so” or  “You know I love you.” Today was “You look so beautiful to me.” But that didn’t last. The light in her eye changes, replaced with the haunted stare of suffering, confusion, and fear of being in a world, a house, a room, a bed, that is perpetually strange to you. The only joy today is that she know me, knows her son loves her, knows that he is here with her, right here, right now.
    I unhinge the gate and walk to my car: thinking, that if Mary lives more than six months to a year, I’m going to be pretty pissed off at God. I know the dementia isn’t God’s fault. That God doesn’t let suffering end, or let Mom die, just because I want it to be so. But God? Christ! Throw the old lady a bone!  And guide me daily in what I need to do and not do with my mother. And if you can, take her. Please take her. In her sleep would be nice, but I don’t care how anymore. Just take her. Soon. Please.
   


   

"Stuart Jenks Sr., Spring, 2001"

"Stuart Jenks Sr., Spring, 2001, Mothershead Neck, Virginia" (c) 2001, 2009 Stu Jenks

[Dad died eight years ago tonight, on Labor Day night. This picture was taken six months before he died of cancer. He and I may have had our differences, but I always knew that he loved me. How do I know this? Because he told me all the time. 'Still waters run deep' is how I described my father. He felt love and sadness and anger and hope and fear, very strongly, but he would never make a big show of it. But I always knew how he felt, and one of the things I knew (and know) is that he loved me very much. I love you too, Dad. I miss you.]