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Chapter 68 – Frances end

For a long time, we thought Mom had Dissociative Identity Disorder, and had several abused little kids living in her. The professionals all assured me it was “just dementia.” Our observations turn out to be accurate, and she has set aside her agenda about it (to invite Jesus in to heal the little one). For several years I’ve been mothering a very angry, rebellious ten-year-old and a twelve-year-old who wants to escape, and could get out of bed after hip surgery and walk to the door of her room before she fell. But later, with Big Frances in charge, couldn’t get out of bed unassisted, and couldn’t walk. I’ve seen those older ones many times, and intuitively knew to enter into their world and mother them from there. 

But there are several younger ones.

I’ve been giving comfort and love and ideas for escape to a five-year-old, a four-year-old (I think twins, a boy and a girl), and a two-year-old. Mom isn’t in there anymore, there is no artifice or roles or pretense. Just the babies, looking up at me shyly, chin tucked. When I ask how old she is and she says two…my heart is shattered.

Jenny and I did the math and realized for the first time that while she believed the abuse started at age 5, the story she had told me was that her Grandma came to help her Mom with the birth of her brother. When the two women went down to fix breakfast, her Dad went to the foot of the bed where her baby crib was and lifted her out, put her in bed with him, and started his perversion. Her brother Bill was born when she was two and after that there were only sisters, for years. I just hadn’t done the math, or remembered the age gap.

But there is some healing happening. A lot, actually. For me, for Jenny, and especially for the babies, who now get to be acknowledged and given the love and help they have wanted for so long. Jenny made mom a lifelike baby doll (who looks about 2) a couple of years ago, but Mom showed little interest in it. Now she clutches the front of its pinafore and won’t let anyone move it. With her other hand she clutches the picture of her mother, who she now refers to as “mother Mary” (her guide) and gazes at it for hours, as if she’s trying to understand or remember something important. She drags the doll over to show her the picture. She tried to kiss the picture but it was too flat in its frame, so she licked it.

A few days before she died, she tried to scribble an illegible version of the Betty and Bobby story, about twins who had a Magic Cloud parked in the pear tree, and any time they wanted to, they could climb on the cloud, say the magic words, and zoom off to Magicland, which could be any kind of land we asked for, when she told us the story, which we also told our children and grandchildren. I asked her to tell me the story and wrote in the words she said, over the scribbled words.

I think Magicland had been her happy place, from the age of four.

Monday morning: I asked how old she was and she said “four.” I asked if she wanted to live or die, and she said, “Don’t want to die.” (Why not? Frances is trying to die.) “Daddy did bad things to me, and I don’t know where he is.”

So I told her the Betty and Bobby story. I told her that Big Frances was the one who made the Daddy stop hurting the little ones, and asked her if she would let Big Frances gather up all the little ones who had been hurt, and take them with her on the magic cloud to Magicland, where they would always be safe with her. She was radiant, beaming—“Yes!” Later that day, while Jenny was reading her a “letter to Baby Frances from God” she took her last breath and died peacefully.

The end

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Chapter 67 – 17 days

Sunday, March 14, 2010

It’s been a very rough afternoon and evening…Mom is completely psycho. The drugs, the unfamiliar surroundings, triggered a complete dissolve when I went down to the cafeteria to get some food—after explaining over and over what I was going to do—ten minutes later the nurse called me—put Mom on the phone—“Are you just leaving me here all alone?” She thought I had gone home to Manzanita. Threatened suicide, frantic, kill me please, got out of bed oblivious to the pain, when earlier today she shrieked in pain when the physical therapist tried to get her to just dangle her legs over the edge of the bed, and refused to do it.

Looking in her eyes is scary—like looking at an alien—or a terrified child about ten years old, belligerent, angry, afraid she’s going to be abandoned and/or hurt, fighting, trying to get out of bed, not understanding anything. I finally started speaking to the ten-year-old, explaining what was true and real and what was not, and asked Big Frances to talk to the scared little kid, tell her to quit trying to be the boss, tell her to let Big Frances comfort her so she wouldn’t be so scared, and ask her to allow Big Frances keep her safe. She completely broke apart and sobbed for twenty minutes. After that her eyes were Frances’ eyes again. She was calm and rational and herself, and she held my face and cried, “Thank you, thank you. I don’t deserve you.” Which of course I disputed. She deserved me, and many more like me.

For a few hours, we had actual conversations, until that night when I said I was going to leave and get some sleep. Psycho time. Then I realized my presence was somehow inviting further meltdown, so I told her I was leaving, and did. I warned the nurses. They had given her Haldol two hours ago but she’s fighting it.

Monday, March 15

Today the physical therapist helped her walk to the door of her room. She complained all the way, but she did it. She slept a lot. Her “boyfriend” Beach came to see her, and Laurie and her daughter Jen.

Seeing Mom with ALL her defenses down was very revealing. Jenny’s been saying for several years that Mom has an alter personality inside that is sometimes in charge, the scared, pugnacious, demanding, mean little ten-year-old who is afraid she’ll be 1) hurt,
and 2) abandoned. In the hospital she gets both. Every time I leave, or even say I’m going to, even for a few minutes, I see that little girl come in and take over.

Again tonight when I told her I was leaving to get some food and some sleep, her eyes became those scary eyes again. Her voice got high and little, and she started to dissociate. I assured her she was safe and I’d be back the next day. Then I went out and talked to both nurses about what was going on. The head nurse assured me that “this is a hip fracture ward; we see dementia all the time. We’re used to dealing with it. You go and get some rest, we’ll take good care of her.”

In spite of my thinking, “This is beyond dementia, sweetheart…” I did leave. And then Jenny’s kids came and visited her after I left and brought her presents, so that got her through the night. So she’s been well loved today, lots of visitors. When she gets constant attention that little alter girl stays in hiding. But it explains a lot of the behavior I hear about at her care facility, that belligerent, mean person. I guess little alter girl would stay in hiding if I was there ALL the time.

Tuesday March 16, 7:43 a.m.

Mom called from the hospital this morning at 6 a.m. (the nurse dialed for her and gave her the phone) with the same frantic concern: “You left me all alone here and I can’t walk and I have to go home and I can’t walk and I don’t know where I am.” (I have a
doctor appt. this morning at 9, so Jenny is going to come to the hospital to be with Mom.) It took about half an hour to talk her back down to her right mind. It may last until Jenny gets there, but I wouldn’t put money on it.

Wednesday, March 17

Today they’ll put Mom in an ambulance and take her to the Nehalem Bay Care Center in Wheeler, four miles from my home, where I can pop over for awhile and then right back home in 5 minutes. It’s a Skilled Nursing/Rehab/Alzheimer’s facility.

Thursday, March 18

Mom arrived by ambulance at the Care Center yesterday at 4, and seemed happy to be there, until she saw her room—then she panicked. It’s a normal nursing home room, private but painted a yucky color and bare bones, old TV, small. Then she got that panicked look, and as soon as they put her in her bed she grabbed my arm. “Is this where I’m going to die?” she said. Jack and I stayed and talked for a couple of hours, calming her down and explaining over and over she wasn’t there to die, but to get well so she could go back to her home at Suzanne Elise Assisted Living. She seemed OK when we left to get something to eat, at a café in Wheeler.

START of 17 days:

The Asian Chicken Salad was the first food I’d had all day. The waiter set down Jack’s Reuben sandwich, and I planned to snag a bite or two of that, too. I picked up my fork, and my cell phone rang. I looked at the Caller ID. Nehalem Bay Care Center. Mom’s new temporary home. My shoulders slumped. Mom had come by ambulance a few hours earlier from the Portland hospital where surgeons pinned her broken hip four days earlier. We had raced from the hospital to the Care Center, leaving my sister Jenny to get her into the ambulance. Jenny had called to say the ambulance was on its way, and she was leaving for a week of R & R in Bend.
When Mom was wheeled into the tiny room with the sickroom-green walls, the narrow bed, the wheelchair, the old TV, her eyes went wide in panic. “Is this where I’m going to die?” she whispered.
It took several hours to get her settled down.
“This is Tom,” the voice on my cell phone said. “I’m the charge nurse at the Care Center. “Uh…you need to come back.”
“What happened?” I asked. I was already motioning for the waiter. To Go box, I mouthed at him, pointing to my salad.
“Your mother fell.”
“She…fell? But how…” She had been unable to get out of bed unassisted for physical therapy in the hospital. And she only had one hip left to break.
“She tried to self-transport. She got all the way to the door of her room before she fell.”
“I’ll be right there.”
She had been trying to escape. I knew that one, the twelve-year old escape artist. I’d seen her several times while Mom was in assisted living. And the pissed-off ten-year-old, who ruled the roost the whole time she was in the hospital. Her eyes had been manic, alien, scary, that terrified belligerent ten-year-old, railing at me, at the nurses, at her immobility. Until I leaned over her and said, softly, “Mom, there’s a scared little girl inside you who is trying to take over. Can you comfort her, tell her you’re in charge, you’ll keep her safe and it’s going to be okay?” She had completely dissolved then, sobbing uncontrollably for twenty minutes. When the tears finally stopped, her eyes were Frances’ again, bright blue and clear. “Thank you,” she said over and over, patting my cheeks. “Thank you. I don’t deserve you.”
Jenny had said for years that Mom had “fractured parts” inside her from early sexual abuse by her father. I talked to experts in geriatric psychology. “It’s just the dementia,” they said. “They’re all that way. They regress to a childlike state.”
“But…children of different ages, all in the same person?”
“No, it’s the dementia. It’s typical. They’re all that way.”
I parked outside the Care Center and hurried to her room in the west wing. Her bed had been lowered to the floor, and a mattress-sized six-inch mat was now next to it. Tom and Becky, the night aide were in the room, their faces anxious. Mom was tucked in, the upper half of her bed raised so she could sit up. Her white silky hair curved smoothly to her earlobes, and I was struck by how pretty she looked, even after a wretched hospital stay.
When I walked in, she reached both arms out for me.
“Judy! You finally came!”
I settled onto the bed next to her and held her hands. “Mom, I’ve only been gone half an hour. I needed to eat, and I thought you were ready to have some dinner, too.”
“I’m not going to eat! I’m just going to die. Don’t make me eat.” I’d heard this before, especially since my youngest sister Anne had died six weeks earlier. But Mom’s resolve always evaporated when her assisted living chef brought her a strawberry waffle with whipped cream and ice cream. She’d been living on strawberry waffles, for breakfast, lunch and dinner. Plus dessert, if there was some.
I had already asked. The nursing home didn’t have strawberry waffles.
“Mom, you’re here to get well, to get strong, to learn to walk again. You can go home as soon as you can walk. And you have to eat to get strong.”
Her eyes flashed blue fire ice.
“I’m not going to eat! I told you! I want to die!”
I had been her caregiver for fourteen years, since she had her first stroke shortly after after my younger brother Tim died. Helping her stay alive and happy was my focus. I had succeeded in keeping her alive.
Jack walked in, breathing hard. He had finished his meal and hiked up the steep hill from the café to the Care Center, carrying my To Go box. Becky looked around for a chair, but Jack waved her away and sat on the portable commode.
Mom’s bony hand clutched my arm and yanked me closer. Her face was not the face of a child, not the face of dementia, not even the face of the frail old woman she was. This was Frances in her right mind.
Her eyes glittered. “You’re not hearing me!”
“Mom, I hear you.”
She hammered her fists into my chest, battering and pounding me with ferocious energy.
“Listen to me! Listen to me! You’re not listening to me!”
Shock, hurt, and horror pulsed through me in waves. My mother had never hit me, not even as a child. It was a few seconds before I could get my breath and retrieve shreds of my Caregiver Calm, the defensive shield I had learned to pull around me when she was being unreasonable.
I glanced up at the three witnesses to my humiliation. Becky’s eyes filled with tears and she mouthed at me, “I’m so sorry.” I wondered what she saw on my face.
I grabbed Mom’s wrists and gently pulled them down. Her bony arms and hands were rigid with determination.
“I’m listening, Mom.”
“You’re not listening!” How many times had she felt this way with me, how many times had my singular focus on keeping her alive and happy blurred my ability to really hear what she was saying?
“I am. I promise. I am listening. I’m listening now. Tell me what I’m not hearing.”
“I want to die. You have to help me! Just kill me!”
I was having a hard time choking down the tears. My usual way of handling grief over what dementia had done to my beautiful, smart little mother was to settle into frustration and efficiency.
“Do you want me to smother you with a pillow?” I said. I was being facetious, another defense.
“Yes!”
Tom’s hand flew up. “Frances, you can’t ask that of someone who loves you, it’s just not fair to them.”
“I can’t do that, Mom, you know I can’t do that.”
“Just throw me away, then. Let me die!” She gestured at Tom and Becky. “Make them let me die!”
I wanted to argue, wanted to point out that this was a rehab facility where she was going to get strong enough to walk again and resume her life. Her pinned femur was already healing.
But I had promised to listen.
“Tell me, tell us.” I waved at Becky and Tom. Jack had retreated to a safe place near the door. I knew he wanted, needed a cigarette by now. But he stayed.
Mom started through a list of demands.
“No food. No water. No medicine.”
Tom glanced at me. “No pain meds?”
“No pain meds,” She said. “I can’t swallow pills. I can’t swallow anything, it makes me choke.”
Becky had a question. “Frances, are you having pain now?”
“No, I don’t have any pain.”
Good, then she hadn’t broken anything else when she fell. Except that she had many times exhibited an uncanny imperviousness to pain of any kind, physical or emotional. The only indicator was those strokes, right after Tim died. She hadn’t cried, but she started having strokes.
Now that we were all listening she let me hold her hands.
“What if you fall again and hurt yourself, or get an infection, or get dehydrated?” Becky asked. “Do you want treatment?” We had been through all of this for her DNR, and her POLST.
“No IVs,” she said. “No antibiotics, no 9-1-1, no ambulances, just let me die.” Her eyes swiveled back to me. “You have to help me!”
“I will help you, Mom, I always have. If that’s what you want, I’ll help you.”
I so badly wanted to argue, to point out that even at 92 she had had some quality of life, some good days. I wanted to remind her of the last time I took her to lunch, when she tried to tell me a joke she’d heard at the assisted living facility. She would manage to get two words out, then dissolve in giggles, say another word, and laugh until she couldn’t get her breath, and by now I was laughing, too, and the more she tried to speak the more breathless and delighted she was, and me too, and by the time we got to the restaurant we were both weak with laughing at a joke she never even got to tell.
But she wasn’t laughing now.
“I mean it Mom, I hear you, you want to die. You want to stop eating and drinking until you die.”
Tom winced, and Jack slipped out the door.
Becky had leaned forward, intent. “What if you’re gasping for breath? Do you want oxygen?”
“Yes.”
“So you want to be kept comfortable?” I said.
“Yes, of course.” She leaned back against the pillow, and her fingers relaxed in mine.
“What if you have pain, do you want morphine—maybe a morphine patch?”
“Yes! Morphine.”
“You just want to go to sleep and not wake up?” I said.
“Yes, that’s what I want.”
“Then I’ll try to make sure you have what you want.”
“Promise? Swear?”
“I swear.”
I thought about Oregon’s Death With Dignity Act. If only she could have had time to sign the request, do the waiting period, sign again, sign again. But no physician would have given her the Seconal. She wasn’t terminal.
Her eyes went to Becky and Tom. “What about you? You heard me, you’re my witnesses. Do you promise to help me die?”
They looked at each other uneasily and nodded.
“Say it out loud. I want to hear you say it. Do you swear?”
Becky said it out loud. “I swear.” Tom didn’t.
“What about you?” She was relentless.
“I swear,” Tom said.
Ferocious and pissed off in the hospital, but after that dramatic entry scene, she smiled at everyone, sweetly, and constantly.

END of 17 days.

Back to Diary entry from 2010:

I wish she could have had the time to sign all the papers (Oregon’s Death With Dignity Act) in advance of this date. But no physician would have said that she was terminally ill. She was simply terminally old and defeated, which meant she didn’t qualify.

She made Tom and Becky, as witnesses, swear they would support her decision. Then made me swear, which I did. Finally we all got clear about that, and she was laughing and talking when we left. They had dropped her bed down to floor level and surrounded it with 6” thick mats, so she can’t hurt herself. She’s running a fever, and she hopes it’s an infection so she can refuse treatment and die soon. Otherwise, she is refusing to eat or drink. That may take awhile.

OR…she may regain her will to live. I asked her why she doesn’t want to live, and she has a long list of reasons the big one being that she doesn’t want to be a burden to her family—meaning me. She wants to be with Anne and Tim. She’s bored with life, without a job or a family to raise. She’s “too hard to get along with”, she says, so she doesn’t have friends at Suzanne Elise. We’ll see which wins out, the will to live or the wish to die.

I’m pretty well worn out. Starting to catch up on sleep, so it will get better. There’s an excellent social worker (a good friend of mine, Patti) and a psych nurse (another good friend of mine, Milar) at the care center; both were in to see her shortly after she first arrived and last night Patty talked me through it on the phone for half an hour after the dramatic scene I had just gotten through with Frances.

Took Mom to the dentist next door to the care center today. He said all six of her lower teeth are completely rotten, have to come out, and are probably making her sick. And no way she hasn’t been in pain from them for at least 6 months. But she has never complained that they hurt until this week, when she needed another reason not to eat. So he took impressions, and Saturday morning he’ll pull her teeth and install her new lower denture and her relined upper denture. He asked what her goal was and she said, “I just want to be able to eat again.” (?!?!?)

I met with Milar for an hour today, and she is awesome. She’s so practical, so loving, and so CLEAR! She agrees that possibly Mom has Dissociative Identity Disorder, as Jenny says.

Sunday 3/21

Mom is being a pill, climbing out of her bed or back in it by herself if I leave the room for a moment, even walking to the door of her room, but acting like she can’t move her legs when the physical therapist wants her to sit up or stand up. Demanding I never leave her side, being uncooperative, refusing to eat or drink or do physical therapy, using the “I want to die RIGHT NOW” meme to control me and everybody else. The $4000 lower plate we had rush-made Saturday…got lost “somewhere” at the nursing home last night. The charge nurse gives a big shrug and said, “It will have to wait until the laundry aide comes in tomorrow,” when I offered to go search through the sheets in the laundry room to look for it. When I explained that Mom couldn’t eat without it, and hadn’t eaten for days, she shrugged again, and said, “I know.” And went back to her paperwork. Thank God for the aides. One of them, Brandy, said “I’ll go look for it right now.” And she did. But couldn’t find Mom’s teeth. So now Mom doesn’t even have her upper plate in, says it hurts her—and it probably does, with her lower jaw having had six extractions yesterday.

I want to help her die however she wants to. But she complains about not being able to eat, then refuses to try. Asks for water then says it tastes terrible and spits it out. The doctor is willing to let/help her die, too, but her heart and lungs are strong, no fever, no pain, no problems, she’s healed from surgery. I’m at my wit’s end. She asks me to kill her, over and over.

I’m so tired my compassion has completely dissolved. I had to leave to keep from saying something snotty back to Mom. When I’m not by her side 24/7 (which I am, mostly) she says, “I was so lost without you! Where were you!?” It’s been a long difficult day, just another one of many.

My brother and his wife are coming tonight, and I told them to just go straight to the nursing home, do not come here first

Like I said, I’m compassion-challenged at the moment. Wes will have his hands full when he gets to the nursing home, and I’m not going over there to try to buffer.

Later Sunday night:

I’m a little pissed off at God right now, after witnessing so many tragedies at the Alzheimer’s/nursing home. I could write a book. Maybe I would call it “Why Dr. Kevorkian Had the Right Idea.” My heart just breaks for all of them, especially Mom, and then I get angry because I have to keep my heart in one piece. I feel so helpless when she asks me to “just shoot her” or “help me die, please, please,” as if I could do something magical and it would all be over. The worst thing she says is, “Just throw me away.”

Mom actually might be in a lot of pain, but she’s so inured to pain that she doesn’t feel it. Witness, six completely rotten teeth that had to have been causing her a lot of pain, not to mention poisoning her whole system…and she never said she had a toothache until she was in the hospital last week.

So Mom is seeing Milar on Tuesday, and we’re going to get serious about her imperviousness to pain and how she seems to be, however, in immense psychological pain if nothing else. Serious sedation would kill her, because the only way she can come out of this is to work with the occupational therapist to walk again. Today she fought her at every turn, said she was too tired, felt just awful, it was too hard, she couldn’t do it, “I just can’t” over and over—couldn’t sit up, couldn’t stand up, couldn’t wash her face. She finally did, under duress. Then after the O.T. left, she sent me to get her a cup of coffee and while I was gone clambered out of her wheelchair and fell across the bed. Then got stuck. When I asked her what she was trying to do, she said, “Well, I didn’t know where you went!” angrily. A non sequitir.

But maybe some anti-anxiety meds??

Wes just arrived after a brief visit with Mom. Have to debrief with him now.

Monday 3/22, 10 a.m.

I’m going to try that screaming thing! Wes and Mary came last night and went to see Mom, and of course she was in the “Queen of My Domain” role she always is for them, smiling and happy, no problems at all. We warned them. Jack always backs me up, because my sibs tend to wonder if I’m exaggerating a wee bit. Especially when I told them about her hitting me, pounding on me when she realized she was in a nursing home and afraid I wouldn’t help her die. Jack vouched for that, because he saw it. Wes and Mary went back over today, so I could get a morning off.

Sandy sent me this: “Something you can do is to meditate and have ‘your higher self’ talk to your mother’s ‘higher self’ and remind her not to be fearful, and that ‘all is well’. Tell her to stay calm and that she will leave this earth plane when she is ready!”

I do feel a lot better today, after a good night’s sleep and just finally having a whole morning to myself. Wes and Mary bought us breakfast and forbade me to come to the nursing home. I exhorted Wes to try to make her “get real” with him—she never does—ask her why Judy says Mom told her, over and over, that she wants to die! While they are there I hope she’ll get to see the speech therapist to evaluate why she says she can’t swallow, and perhaps try to retrain her. And from the dentist, who I hope will raise hell that they lost her new plate the same day it was put in.

Mary asked me several times: “What is the worst thing that can happen if you just don’t go over there?” Jack acknowledged that he didn’t think I could stay away, I’d feel too guilty.

I need therapy.

Monday 3/22 noon

Wes and Mary are headed home today. Mary says Wes should come back and “assume his share of the obligation” but I’m not requiring that. If he even could visit once a week and give me a morning off, that would help. Or Jenny. I’m trying to wean Mom from her total dependence on me to be there every second of this long painful process, but I then feel guilty about abandoning her when she’s terrified. On the other hand, she is no doubt still manipulating me, and might actually cooperate with the people trying to help her if she didn’t have me to play to.
“These thoughts do not mean anything” from ACIM helps. And a quote from Nisargadatta: “If you could only keep quiet, clear of memories and expectations, you would be able to discern the beautiful patterns of events. It´s your restlessness that causes chaos.” I’m also asking my Higher Self to go talk to her Higher Self to calm her down. She’s definitely of two opposing minds: one is desperate to die NOW and the other is frantically terrified of the prospect. So she quits eating and drinking, then sips a bit of water. The night nurse tells me she brings her strawberry ice cream in the middle of the night, and she devours it, which can keep her going indefinitely.
I haven’t been over to the nursing home today, and blessedly, Mom doesn’t have a phone there. I’ll go over after I get back from reading at Suzanne Elise—those people so look forward to me coming and reading to them, and I missed last week.

There are a hundred sad stories at the nursing home—I keep running into them when I offer a word of comfort or a pat on the arm. The constant ululation of advanced Alzheimer’s patients makes everyone feel crazy. Especially Mom.

Anyway, it’s a pretty day, Jack got to play golf, and I got some time off. Jack definitely has my back, and helps to get my sibs to understand that what I tell them isn’t an exaggeration. She isn’t the Frances Queen with me. She hits me.

Tuesday 3/23, 8 a.m.

Miraculously, things have turned around yesterday for Mom—Patti spent considerable time with her, the occupational therapist Renee spent good time with her, they both connected with her on a positive and spiritual level, and she now wants to live again.

Yesterday I stopped by only once, told her I was on my way to the Democratic Central Committee meeting, and she smiled and waved and said “Have a good time!” Renee told her she had to start working on her next book, the world was waiting, so she’s all fired up with a sense of purpose again. I hope it lasts.

My dear brother saw how things were and said he’s going to come up from Coos Bay for two days a week until she’s out of the nursing home, to give me a break.

Tuesday afternoon 3/23

I just talked to SEAL, and given her rate of recovery and no pain, they’ll take her back next Tuesday or Wednesday and continue PT there! She really wants to go back! Today they left her on the toilet, told her to pull the string when she was through so they could get her back in bed. Instead, she got up by herself and walked back to bed and got in it. She’s ready to leave.

I went to see Mom for 45 minutes today then said I had to leave, and she was fine with that. Wes is coming tomorrow, so I’ll stay away and work on my book. Then Jenny can come down after she gets back from Bend on Friday.

Things are getting better! Lots of good signs right now.

Wed. 3/24 evening

Wes called. He has a sore throat so he can’t come.

Mom showed me the book she was working on. It was an illegible paragraph, but I recognized a few words: Betty and Bobby. I asked her to tell me the story, and she did. I wrote in her words over her scrawl. But when I asked her if she was going to work on it some more, she shook her head miserably. No.

It’s unclear now whether Mom is just trying to yank my chain, or what. She has times when she laughs at a comedy on TV, and she always smiles sweetly at everyone who comes in. But with me…it’s all about making sure I remember that she wants to die. Jack posited that perhaps she knows now that it’s going to happen soon, and is therefore happy. Could be. That’s a new kind of heartache—some of the time, not all.

Patti put an “Urgent” on my request for the speech therapist to check out why she can’t swallow.

I am learning, the hard way (as it always has been with Mom’s lessons) to hang out in the unknown, walk the tightrope that isn’t fastened on the other end, be fully present with her when I can be. And get on with my life in the meantime, such as it is.

Friday 3/26 evening

I think Mom had a little stroke this morning while I was gone for an hour for a meeting. When I returned they had her sitting in a wheelchair near the desk, limp and unresponsive. She’s been bewildered and very very weak ever since. Was able to be propped up and open her eyes, but she’s been pretty uncomprehending.

Jenny came! She’s just been wonderful. She’ll stay for the duration. She said “no church funeral!” which stunned me. Now I have someone to help me make all the plans and arrangements and she knows a lot about arrangements, having done it for a woman she cared for, then her husband.

We agree that Mom probably will live, at most, 3-4 more days. She’s limp and bewildered, doing a lot of gazing into our eyes rather than talking; when she talks it’s brief and hard to hear. We’re making funeral plans, so we don’t have to make them later under duress. We may take her back to Suzanne Elise to die, which she wanted to do yesterday, but today she seems disinterested in such details.

Dr. R. came, and asked her, “Frances, how are you doing with that trying-to-die thing?”

“Not good,” she said.

“Why not?”

“They won’t let me die.”

Dr. R. assumed she meant Heaven was telling her it wasn’t her time yet.

But later I asked her who “they” were—the caregivers? Her family? Who?

She could only shrug. She didn’t know.

Then Jenny came in and asked if “they” were inside of her. She perked up and said, “Yes!”

“Do you hear them talking?”

“Yes!”

Later I asked her how old she was (a tip from Jenny). She looked up at me with such a sweet, young, innocent face. Ducked her chin and glanced up, and said, “Four” in a high, childish voice.

My granddaughter Jenica left a beautiful handmade card for Mom, with a line from one of Mom’s poems (Jen’s favorite: “The Thread”) inscribed on one side: “A filament of silver, tethered to my heart.”

Sat. 3/27, 10 p.m.

Today I curled up next to Mom in her bed for awhile. She’s having a hard time. I told her I would miss her forever, and she patted my cheeks and tried to hug me, but was too weak. I asked her to somehow communicate with me after she passed over, and she seemed to like the idea. When I said, “How will I know it’s you?” she shrugged. She didn’t know. But her eyes told me, “You’ll know.”

We have talked often before about what psychics and after-death communicators reported: two ways people can communicate once they are pure energy in spirit is through manipulating electricity/energy, and by putting thoughts or images in your mind, ideas that often seem inspirational, a “light bulb going on,” when the thought is coming from the beloved one who is now in spirit.

She’s dehydrated and anorexic and not going gently.

I’m helping her to die in every way I know how, but those little ones inside are powering her resistance.

But she smiles at us constantly, no teeth. Breaks my heart, over and over.

3/28, midnight

“Frances, how old are you?” I asked.

Tiny, sweet, smooth, innocent face, that shy smile: “Two.”

My heart shattered. Two.

Jenny and I did the math. We realized for the first time that while she believed the abuse started at age five, the story she had told me was that her Grandma came to help her mother with the birth of her brother. When the two women went down to fix breakfast, her Dad went to the foot of the bed where her baby crib was and lifted her out, put her in bed with him, and started his perversions. Her brother Bill was born when she was two and after that there were only sisters, for years. I just hadn’t done the math, or remembered the age gap.

This monster sexually abused his innocent two-year-old baby. And now at the end of her life when she should be allowed to go peacefully, she’s having to deal with all these unleashed little parts of herself that don’t want to die.

As for me, it’s breaking my heart and at the same time healing it, because finally she will be at peace and all her scared little babies will finally be comforted. And now her puzzling and frustrating behavior for the past few years has been explained.

My poor little mother is now revealing the full extent of her abuse; she is alternately two, four and five years old. But there a healing happening. For me, for Jenny, and especially for the babies, who now get to be acknowledged and given the love and help they have wanted for so long. Jenny made her a lifelike baby doll (who looks about two) a couple of years ago, but Mom showed little interest in it. Now she clutches the baby doll’s pinafore even when she’s asleep and won’t let anyone move it. With her other hand she clutches the picture of her mother, who she now refers to as “mother Mary” (her longtime guide) and gazes at it for hours, as if she’s trying to understand or remember something important. She drags the doll over to show her the picture. She kisses the picture. She’s figuring something out. Can’t talk now. But whispers how old she is when I ask, and her little face is exactly that age; the expressions, the eyes, all of it.

“How old are you, Frances?”

“Four.” Sweet shy smile.

“Do you want to die?”

“No!”

“Why not?”

“Because my Daddy did bad things to me, and I don’t know where he is.”

This, finally explained Frances’ contradictory feelings about death, especially now that she was actively trying to die. She was afraid he would be there, wherever she was going.

“How old is the baby?” (The doll)

“Two,” she said, patting the doll’s stomach.

“Are you taking care of the little baby who’s two?”

Big smile. “Yes”

A therapist friend had made a suggestion, which I carried out now.

“Sweetheart, Big Frances is the one who made the Daddy stop hurting the babies. Will you let Big Frances gather up all the little ones who have been hurt, and keep them safe always?”

Then I had an inspiration, which I now think was orchestrated by Frances’ Higher Self, the Self that scrawled the paragraph about Magicland. Her happy place. “And will you let her take all the little ones with her to the Magic Cloud and say the magic word, and then take all the little ones with her to Magicland where she will keep you safe forever?”

Frances’ face bloomed in a radiant smile. She glowed. “Yes!”

Jenny is here, and it’s a big relief and help. All of Anne’s kids came down tonight to see Mom, and Wes came, and Mike’s coming any minute now, with his two girls. When we got back from the nursing home with Anne’s kids, Jack had a huge spread on the counter—our neighbor who is a professional chef had brought over two roast chickens, a mouth-watering apple pie and a great bowl of the best scones I have ever eaten. I had made chili and white bean soup this morning, and we had various loaves of bread, so we all pigged out. Little 5-year-old Christy (Anne’s granddaughter) kept saying, “I really really like your food, Aunt Judy.”

Monday, 3/29, 8 a.m.

Mom isn’t in there anymore, there is no artifice, no roles or pretense. Just the babies, looking up shyly, chin tucked. Smiling.

Wes, Jenny, Mike and I went to Suzanne Elise to get her things out of her room. They have to be gone by Wednesday, and we didn’t want to be sitting with Frances tomorrow and worrying about having to get over there to clear out her room.

Jenny found a “letter from God to Baby Frances” that a friend had given her, and left immediately to go back to the nursing home and be with Mom. Her breathing was shallow when we left, and we wanted someone to be with her.

On our way back to Wheeler, Jenny called. She had found Mom sitting up and awake, and wanting a washcloth. She helped her use it, then sat down and read her the letter. As she read the last line, Frances took her last breath and died peacefully.

We, Jenny and I gathered in Mom’s room and wrapped her in the quilt her children and grandchildren made for her, surrounding her with love. It would go with her into cremation.

The night Mom died I turned off my cell phone for the first time in 15 years. We have a NOAA emergency radio by the bed—it hasn’t gone off in the year it’s been there, though we’ve had several tsunami warnings and some really bad hurricane-level storms, without a squeak from the NOAA radio. But that night, it went off at 2 a.m.—piercing siren alarm, and had me straight up immediately. Then the announcement was: “Rain expected, thunderstorms possible.” Period. Alarm, followed by trivial concern.

I was so freaked I made Jack get up and turn the radio off. He unplugged it and said the batteries were dead, so it was off. Two hours later it happened again. This time I went outside and gazed at the full moon and went for a walk in my nightgown. Then drew a hot bath and sat in it. It was then I realized something that I’d been too much in grief to recognize: because of the way Mom revealed all the little hurt babies and children inside her, and gave me the chance to talk with them and heal them so she could gather them up and leave…I had no leftover grievances. No regrets, no resentments, no bad memories. Just sorrow for the way she had suffered for so many years, and a new understanding of “who” I had had to soothe and comfort so many times, and why she often acted out the way she did. The way she got my attention was to turn on the radio. Twice, because I missed it the first time. She had to get me up and out before I could recognize what I was supposed to recognize. We are healed and whole, and our relationship is now nothing but love. The loud alert followed by a trivial message was her typical pattern, so she knew I would know it was her. She must have been laughing.

I have a sense of the joy and jubilation she felt as her eyes adjusted to her new place, seeing her beloveds gathered there waiting for her with celebration.

The next chapter will be the final chapter about Frances. Stay tuned.

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Chapter 66, Frances continued

When Frances was ninety-one. I experienced yet another recurrence of breast cancer (in both breasts) and was unable to travel to Portland or visit her for several months while my immune system was compromised by surgery, chemotherapy and staph infections. During that time her assisted living facility in Portland began to deteriorate and fell well below the standard of care they had previously provided. Without my regular oversight, Frances was neglected and ignored. It was clear that she was depressed and becoming increasingly isolated. My siblings called her regularly and read her stories, but they all lived in other cities, unable to visit. My youngest sister, Anne, also had breast cancer, and was in treatment. A mutual friend, Beach, who had studied the Course in one of Frances’ group twenty years earlier, learned about her loneliness. From then on he showed up every Thursday without fail, and took Frances out for maple bars and coffee. He was a virtual lifesaver. An angel.

As soon as I was able, I moved Frances to a facility near my home on the coast, where the level of care was all that one could hope for. At the same time, Anne began a downward slide in her own battle with breast cancer.

During Frances’ year in her new facility, the final year of her life, she called me five or six times a day. I visited her at least once a week, and for special occasions, or to take her to doctor appointments, or I brought her to my house for a visit or party. My friends didn’t understand my involvement with my mother. Their mothers had already died, or were only a distant presence in their lives. They thought I was obsessed, and needed to, as usual, “get a life.” Anne asked me, in a musing sort of way, “Judy, don’t you wish you could be as casual about taking care of Mom as we are?” The question jolted me. How did my siblings do that? They sometimes stepped up when I was unable to be involved, but that slacked off as soon as I was healthy again. Why was I “the one”—the chosen one, obviously, to be my mother’s caregiver? There was no answer. It seemed predestined, a contract I was unable to break, though I had tried to several times.

Frances had a set of cards with ACIM quotes, and one that she kept by her chair was this one: “Under His teaching, every relationship becomes a lesson in love.” I was learning a lesson in love. Love that endures when a person becomes difficult to love, and there are no answers that satisfy.

During that final year I completed the novel I had worked on for years, and recovered from cancer and treatment. I did have a life, I assured myself, though it revolved around Frances’ needs and demands and phone calls and emotional meltdowns. If I tried to design a class or a group that would allow me to use my training, skills and gifts, “something” stopped me. I couldn’t get interested, let alone committed. Apparently, the only way I could be of service was with Frances, and by volunteering at her facility—every Monday I read to a group of residents, from one of the books she had written, which pleased Frances immensely.

Her nightmares worsened. She began to call me at two or three a.m., in a state of angry panic—“They won’t let me eat breakfast!” or “They won’t help me get dressed!” and “They say I have to go back to bed!” The middle-of-the-night alarm of the telephone followed by the trivial, childish complaint became a pattern. If I tried to reason with her, her stubborn resistance escalated. If I spoke to her as if she were five years old and told her she could stay up if she wanted to, she calmed down. If I didn’t hear the phone, she called Jenny or sometimes, my brother Wes. If she couldn’t reach any of us she became unmanageable.

“I just want to die,” was her mantra for that last year. “Just let me die.” Sometimes I could soothe her out of it, but sometimes not. “I’m going to walk to the ocean and keep on walking.” Or, “I’m going to just stop eating.” She couldn’t get far on foot—she used a walker, which she pushed at a fast clip, but she tired easily, and her balance was shaky. She couldn’t just stop eating. The facility allowed her to order her favorite foods from a menu, so she ordered strawberry waffles with whipped cream and ice cream for breakfast, lunch, and often, dinner. She asked me to bring miniature cream puffs when I visited, which I did. A bag or box of candy disappeared in hours. She had dessert at lunch and dinner, even if she’d already had a strawberry waffle as her main course. When one of us took her out to breakfast or lunch, she insisted we go to the Pig ‘N’ Pancake, where they had the best strawberry waffles. She lived on sugar.

For a few months Jenny and I took over transporting Anne from Mt. Angel to Portland for weekly chemotherapy treatments, until it was clear that there were no more treatments available and Anne went home, on hospice, and we spent time helping her there. During this time Frances became increasingly difficult to manage—she was belligerent, angry, or silent and withdrawn. At first we thought she didn’t fully comprehend how seriously ill Anne was, because she turned away and changed the subject when we brought it up. But often in a conversation she would surprise us with the question, “How is Anne?” Her grief was palpable, and inconsolable.

Anne died on February 2, 2010. Jenny and I together told Frances, who dissolved in grief. Later we took her to the Pig ‘N’ Pancake, where a strawberry waffle gave her temporary comfort. But during the following six weeks, she called me nearly 100 times, often sobbing. She wanted to die, she wanted to die, please help her die. She wanted to be with Tim and Anne, she was tired of living, please help her die.

My entire focus for fourteen years had been to help my mother have a reasonably happy and comfortable life in spite of her increasing dementia and sadness. I couldn’t turn that on a dime. I couldn’t help her die.

On March 13, 2010, Frances fell and broke her hip. We followed the ambulance to St. Vincent’s Hospital in Portland, where she had surgery to pin the break, early the following morning.

The next seventeen days were a journey of revelation and healing, for me, for Jenny, and for Frances.

What follows is a condensation of my diary of those weeks.

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Chapter 65, Diary Entry from Dec. 2003

December 17, 2003

A typical day (but none are typical)

Mom e-mails and/or calls me 5 or 6 times a day, to tell me
a) she had to bundle up warm to walk to Rite-Aid (a block away) to buy a new pan with Teflon because she forgot her pan on the burner and it burned up.
b) She’ll sure be glad when she can drive her car (I’m still straightening out the insurance, the expired registration and plates, and the lost title; now have the replacement title and have to get her signature then go to DMV to register the “sale” from the Center to Mom. DMV is half an hour away.)
c) She asks, when is our appointment with John, she forgot. John is a mutual friend who used to work in NY publishing; she called him and said she wanted him to read her Story of a Life book and give her advice about publishing it. She told him Judy would bring her over to talk about it. We don’t have an appointment yet, because I haven’t had time to call him and make the appointment, let alone drive her to NW Portland to see him. Twice. Once before he reads it and once after.
d) The paper is stuck again in her printer. This is a daily problem. It turns out this time it isn’t the paper, it’s out of ink, so I have to replace the cartridge because when she tries to do it herself I have to spend literally hours and hours trying to get it to work again, including several long calls to HP help lines. Other times she says it’s broken again—almost daily—it turns out she forgot how to print from her computer and is pushing the Copy button, or she’s pushing the Scan button when she wants to copy. I got her the multi-function printer so she wouldn’t need to make so many trips to the copier store. When I easily print the document from the computer that she was trying to print, she gets angry and says she DID that, and it DIDN’T WORK! When e-mail comes back because it has a totally garbled up address she typed in instead of using her automatic address book, she insists that she used her address book, she DIDN’T type it in, but when I go to the Outbox and check, there are garbled up messages where she typed in the address. When I delete them, she doesn’t get the annoying message anymore, but she always says she DID check the Outbox and there was nothing there. She can no longer read or understand or follow even the simplest instructions (I’ve made a very simple manual for her) about how to use her e-mail or printer. But she’s desperate to keep using it, sees it as her only link to the outside world these days. So it takes daily help and fixing.
e) She sent me a Verizon e-mail that says she’s used more than 125 hours this month and will be charged for all the extra hours, and gives a web site to go to. She can’t understand web sites. I went to the web site and found she had gone up from an average of 50 hours a month to 260 hours this month so far. I had noticed her computer is often on-line even when she’s not using it. She said that when it asks her if she wants to disconnect she always says No. She’s forgotten that when she’s not using it she needs to disconnect. (This took an hour on-line and on the phone, had to change her password, etc.)
f) She needs some more ground coffee. The only kind she likes (me too) is from Schondecken coffee store in Sellwood, where she used to live and I used to live. When I buy mine, I usually get her some too. But lately she says she doesn’t need it when I go, so she runs out when I don’t need to go for myself. It’s twenty minutes away.
g) She doesn’t like to take the little pill that she has to cut in half, because it scratches her throat. I went to Kaiser and asked them to give her a pill with half the dosage so she doesn’t have to cut them in half. They said that would be a very expensive special order, because they don’t stock the lower dosage. I put in her new prescription anyway, then Jen and I went to talk to the social worker about her living arrangements. That took an hour and a half, and afterward I forgot to go back to the pharmacy and pick up her prescription.

The other night we took her to the Gospel Christmas concert—100 voices from 49 churches, and it was beautiful. Then took her out to eat. She didn’t seem to enjoy any of it. When we took her home I checked her pill box to refill it, and she said she was sure glad she didn’t have to take that Fosamax anymore. I told her she was supposed to keep taking it once a week. Big flap—she believes she was taking it only to heal the fracture in her spine, which she says is almost well now, so she said she’s NOT taking any more of that Fosamax, she HATES it. Turns out it makes her dizzy for half an hour. And she probably has trouble remembering to take it. For the first month I went over very early Saturday mornings to give her the pill and make sure she didn’t eat or drink beforehand, or for half an hour afterward. But then she seemed to be able to do it herself, by posting a reminder I wrote up, on her bathroom mirror. As long as I called her Friday nights to tell her to post it. When I tried to explain that her doctor prescribed it to strengthen her bones so she won’t have any more fractures, so she needs to keep taking it, she flared up and yelled at me that that wasn’t true, she was going to call her doctor and find out. At that point I lost it and threw up my hands (literally) and said I didn’t care if she took it or not, it’s her body and her life, and she can choose what to do with it. She can choose to have fragile bones or take the pill, I don’t care, it’s her choice and I refuse to be the Pill Policeman, I hate that job!

So I’m not refilling that prescription. I’ve been paying for her copays on pills, and that particular one is a $10 copay per pill, so $40 a month, and it’s fine with me if we stop it.

I spent couple of hours on the phone with the Area Agency on Aging to set her up for Medicaid payment for an aide. Now they are going to send someone out to do an in-home evaluation, which they must do before they can pay out state money, and I’m not looking forward to that visit. Of course I’ll have to be there, and of course she won’t tell them the truth about how mentally disabled she is. Or if they can see it, or ask the right questions, she’ll be angry and yell at the guy and refuse to answer. I hope they’re used to that.

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Chapter 64 – Frances and the Watkins man

Her voice on the phone that afternoon was high and thin, stumbling over the words she spilled out too fast.
“Judy, can you come over?” she said. “I can’t find my money, I’ve looked everywhere. I think someone took my money, I’m sure it was in my purse, and now it’s gone. I think somebody took it.”
“What money, Mom?” I said. “How much money are you talking about?”
Her voice trembling, breathless. “All my money, Judy, all I had left from my Social Security.”
“You keep it in your purse?” I said. I was impatient, incredulous, this made me tired.
“Can’t you just come over and help me?” Mom said.
In the car I tried to remember Mom’s sources of income. Dad’s Social Security, barely enough to support a person. Donations from her followers. Before Tim got sick I kept her banking straight and legal, but now there was no telling. There couldn’t have been much coming in since she stopped holding darshans.
Mom’s door was open. There were no lights on in her apartment and the drapes were closed. Mom, the light freak, was sitting in the dimness on her couch in her pink bathrobe, her hair uncombed. She lifted her head when I turned on the overhead light.
“I was meditating,” she said.
The Watkins Products invoice was on the hall table. Here’s where the money went:
One quart bottle of Watkins Bathroom Cleaner Plus $8.99
11 oz Original Double-Strength Vanilla, flavor that won’t bake out $19.99
Brain Plus. Has your memory played a disappearing act lately? Our unique formula can help to bring back your memory while protecting against age-related mental decline (60 caplets, 30-day supply) $18.99
Frances said: “Remember when the Watkins man used to come to the farm and I bought my spices and vanilla from him? This Watkins man is just as sweet as that Watkins man, they are all so nice. He visits me a lot.”
I sat back down on the couch Mom’s sad energy swirling all around me. I put my arm around her, pulled her closer to me. What was I going to do with my enlightened, sad, human, failed little mother?
Mom got up and went to her window. She pulled the wand to close the vertical slats, the wand stuck, the blinds wouldn’t close.
“Judy, would you…?” Mom said.
The wand didn’t work for me, either, until I straightened a few slats that had gotten turned sideways.
Mom’s blue prism eyes glowed at me, her smile as bright white as her foam hair.
“See, Judy, you can always make things work. You’re a miracle worker. Always have been.”

How Alzheimer’s works: the patient loses her faculties gradually, in reverse order from how they were developed: last one in, first one out. Memory fades, and then physical abilities. They begin to dress weird—petticoat on top of the dress, colors and patterns clashing wildly. And they won’t be talked out of it, just as a four-year-old stubbornly insists on wearing two pairs of shorts under her dress and four of Mom’s necklaces to pre-school. Then they need help dressing. Finally they forget how to dress themselves at all. Toilet training fades, from “accidents” back down to diapers. They gradually lose motor skills. The loss of language is close to the end, the vocabulary dwindling and dwindling until only a few simple words remain. “No” is a favorite word, usually one of the last words to go. They no longer give any sign of recognition with familiar people.

At about age six weeks a baby begins to smile—it’s the first sign of humanness and personality, and we are delighted. In Alzheimer’s, it’s the last sign of humanness and personality to go. Like the Cheshire Cat, when all other aspects of the personality have faded and disappeared, all that remains is the grin. And finally, that, too, is gone.

This is how we dissolve our personality/ego and remember our Essence, which we gradually lost in the first two years of life, developing personality and ego to replace it. We lose Essence one facet at a time, and that is how we regain it. We cultivate its characteristics—honesty, strength, compassion, etc.—and as we do, the personality trait that replaced that facet of Essence dissolves. As we regain facets of Essence, each one we regain helps to bring back the others.

We moved across town to be near Frances and the Center. At age eighty-six, it was clear that she was no longer able to live alone. She needed more care and help than I could give her. She moved into an assisted living facility near her home, and lived in relative peace and comfort there for five years. I had moved to the Oregon coast, a two-hour trip I made regularly to be with her and help her. She called me several times every day, often with dementia-related problems I couldn’t fix. I could only listen, commiserate and try to reason with her, but she often seemed like a frightened five-year-old child who could not be reasoned with or consoled. Or an angry, rebellious ten-year-old, or a determined twelve-year-old who was planning to escape. She had begun to have nightmares about her father. I decided to treat her as if I were her mother, and simply entered into her world, whatever age she seemed to be. It was successful. And often frustrating for me, because my cell phone number was on her speed dial, and even a five-year-old knew how to hit the “Judy” button. My friends told me I needed to “get a life.” I had a life, and a satisfying one, but it was interwoven and overlaid with her needs and demands.

My year-and-a-half younger sister Jenny and her psychotherapist husband had worked with women whom she called “fractured”—known in the psychological literature as multiple personality syndrome or, more recently, Dissociative Identity Disorder. It is defined as “a condition in which a person has more than one distinct identity or personality state. At least two of these personalities repeatedly assert themselves to control the affected person’s behavior. Each personality state has a distinct name, past, identity, and self-image.”

Jenny had, in fact suggested such a possibility to Frances. She was met with cold resistance and absolute denial that any such thing could be true. I spoke with professionals in geriatric psychology, and they all assured me that her behavior was “typical for dementia.”

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Chapter 63, Frances’ Story, part 1

Frances Reed was my mother for seventy years. She nourished, supported and encouraged me physically, mentally, and spiritually. Once she saved my life, by introducing me to a spiritual path that enabled me to reverse a disastrous prognosis. But the most stunning learning program, which we embarked upon together, began with her descent into stroke-related dementia, where she lost the ability to access the spiritual practices she had taught and exemplified for many years. I will call her Frances in this story, though in life I only called her “Mom,” until her last days.

Frances was a story teller and writer from my earliest memory. Her favorite story, and the favorite of her five children, and our children, and our children’s children, was the Betty and Bobby Story. Betty and Bobby were twins who were sometimes four years old, sometimes five years old, sometimes ten, depending on the audience. The twins had a Magic Cloud they parked in the cherry tree (or pear, or plum, or apple, depending on who is telling the story) in the back yard. The twins could run out to the tree, climb on the magic cloud, say the magic words—Zippety Zippety Zoom—and speed off to Magicland. Magicland could be anything we wanted it to be. Flowerland, Teeny-Tiny Land, Candyland (a favorite for three generations), Christmasland, PolkaDotLand. She could even manufacture a story for something like Cowpie Land, if that’s what we insisted on hearing.

After 35 years as a farm wife and mother, Frances left my father to pursue a life of discovery and freedom. She started college at age 54, graduated at age 58, and enjoyed a five-year career teaching and counseling. After retirement she discovered a spiritual path she had sought for many years—A Course in Miracles—and it dramatically changed her life.

And mine. In 1983, when I was 42, I received a diagnosis of metastasic breast cancer. The prognosis: “Five percent chance of surviving for three years.” Mom sent me a copy of a single paragraph from the Course, and like her, I recognized it as the spiritual path I needed for my own healing. The book was designed for self-directed spiritual and psychological healing, and I began an intensive study. Frances facilitated study groups in her home, and I joined one of her groups. Within a year, her work had outgrown her apartment. With her meager Social Security income, she rented an older home in Southeast Portland, moved herself into the upstairs bedroom, and turned the main floor into The Portland Miracles Center. My husband, Jack, filed the nonprofit application, and by 1985 her Center had 501(c)3 status.

People seeking spiritual inspiration, study groups, intellectual stimulus, comfort and/or companionship came and went all day every day. She kept the coffeepot on in the kitchen, and used the dining room to publish a monthly newsletter. Her single guiding principle was this: “the Holy Spirit will guide us, and provide enough money to remain open and pay the rent, or we will close.” When there wasn’t enough money coming in to pay the rent and expenses, she took in manuscripts to edit in her upstairs room. The Center remains open to this day (2010), still guided by Frances’ principle.

In 1985 I experienced my own miracle of physical healing. The breast cancer did recur a second time after chemotherapy ended, and I used what I had learned in the Course to heal the new tumor without treatment. In my gratitude, I vowed to help Frances run the Center, facilitate study groups, teach classes, and train teachers. I took over editing and publishing the newsletter.

In 1992, when Frances was seventy-five, she told me a secret she had held her whole life: her father had sexually abused and molested her from the age of five. She had tried to protect her four younger sisters from his predations, but when she refused him at age twelve, he began to molest her sisters. She was unable to be with them every minute of every day, though she tried. When she married at age eighteen, her youngest sister became his target.

This news explained why my sisters and I were never allowed to be around my grandfather, and why she saw to it that her parents’ visits were brief. It explained why her sisters married abusive and philandering men, and why there were alcohol and drug problems, and even suicide. But Frances had married my father, for one important reason—he was kind. And so he was. The cycle of abuse had been broken by her, and only her, so that our succeeding generations were protected.

The primary message of the Course is inner peace through forgiveness, and Frances was finally able to forgive her father. I was not. I saw how her own inner torment continued. She offered healing to so many, but hadn’t been able to find complete healing for herself. She had periods of depression through the years, and had an almost pathological fear of dying, in spite of the teachings of the Course. She said, alternately, that she would never die, she would simply transubstantiate like Elijah; or that she would live to be 120 years old. She refused to take medications of any kind, even aspirin, and claimed she could not swallow pills; they made her choke. In fact, she was never ill, didn’t catch colds, had never even had a headache. I began to wonder if perhaps she would live forever.

When Frances was seventy-eight her youngest son, my brother Tim, died of melanoma. Mom wore chiffon to Tim’s memorial service, a long red chiffon dress, Tim’s color. The gymnasium at the school looked like a political nominating convention, with red balloons, pictures and posters of Tim, and bleachers for the hundreds of students, teachers, parents, and friends. The family sat in the front row. Me and Jack and Mom. Mom smiled through the Trumpet Voluntary played by eight trombones, a lineup of brass across the front of the gym, Tim’s band buddies from all over the city, grownup men blowing their horns through tears and snot. Mom smiled during the eulogies. Smiled while people stood in line to squeeze her hand and offer tributes to her son.

That same year on his birthday she had her first of three strokes. She lost the ability to do linear processing, and could no longer teach or write or manage the Center. I took over the Center and became Frances’ primary caregiver. She was able to live in her own apartment, but needed help many times a day with the simple tasks of everyday living. She had stroke-related dementia, which grew progressively worse.

Cocoa and post-its:

Jack was still being watchful and careful with me. After Tijuana, milk had gone sour in the fridge, we ran out of butter and coffee, the bread went moldy, and the only meat on hand was a weeks-old package of deli ham. Laundry spilled over the baskets next to the washing machine. The same sheets had been on the bed for over a month.

Jack took over kitchen duties, shopped for groceries and cooked. He did the laundry, changed the bed. He no longer asked why I wasn’t checking in with Mom. Instead, he stopped by to check on her, and spared me any discussion of How Mom Is Doing when he returned.

Not that Mom had been that much in touch with reality while Tim was sick, but now she lived in a place in her mind in which everything had turned out the way she planned. Coping with the parallel universe sometimes put her in a semi-panicked state of confusion. The phone conversations were surreal.

“Hello?”

“Judy, good morning, or is it afternoon, how are you dear?”

“I’m good, how are you?”

I could tell how she was coping by the way her voice was. If she was deeply into denial, her voice was dreamy and chirpy. Other times, the panic times, her voice spun tight and high and fast and her words stumbled over each other, stuttering.

On the phone that afternoon she started out chirpy and soon went into panic.

“I thought I’d just make a cup of cocoa…but…have you seen my cocoa? It’s…I can’t find my cocoa, I’ve looked everywhere.”

In Frances’s tiny kitchen, the cupboard over the sink was where she kept tea and cocoa and condiments.

“Have you looked over the sink? That’s where you usually keep it.”

“I’ve looked there, looked everywhere. I can’t find it,” she said. She coughed twice, her dry unnecessary cough. “Judy, Could you come over?”

It was April now and morning sun filled the room from above and all around. Daffodils were still in bloom just outside. The daffodils were King Alfreds, but not Dad’s King Alfreds. Dad’s King Alfreds were deep, rich glow-in-the-dark gold, with trumpets the size of coffee mugs. These days the daffodils they called King Alfreds were bright yellow, large as daffodils go, but not Dad’s King Alfreds.

“I’m sewing, Mom, can’t you just look again?”

“No, I’ve looked and looked, and I know I have some cocoa, but I can’t find it. Please, please, come over, just for a minute?” Her voice stopped on a high note of pleading and alarm, her voice the new Frances, new since Tim died.

If only Jack were not at work. Often he stopped by after work to see her, helped her find things, left me out of it. She lost things, misplaced things, couldn’t find the FM switch on her radio, forgot where she put her checkbook, her glasses, her car keys. Normal stuff, probably, especially if she was grieving. Hard to tell.

I looked at my watch. Early afternoon. I hadn’t been to her apartment for quite awhile. Maybe I should take her out for lunch and spend some time with her. Maybe we could talk about Tim, how we missed him. How we were all we each had left of family.

“I’ll be over,” I said. “Let me finish up here, give me half an hour.”

“Oh, good,” she said. Her voice dropped back to normal. “Thank you, honey.” She hung up.

Mom answered the door and was childishly glad to see me. She opened her arms wide and pulled me to her. Hugging was new in our family. Our family, now two people. I couldn’t remember when it had started. Mom hugged students at the Center, and now it was spilling over into the rest of her life.

I hugged her back. It was like hugging Yoda, a shrunken, wise elder. She wore black tights and an oversized pink sweater. She was barefoot. Her white hair was flat and limp like I’d never seen it before, not its usual fluffy wisps. Her ears stuck out through her hair. She seemed smaller and more fragile than ever. She seemed old.

Mom stepped back to let me into her apartment. The first thing I saw was the Post-It notes. There were Post-It notes stuck to every flat surface, the tables, the side of the refrigerator, her computer screen, her telephone, her kitchen counter, the windowsill.

Mom sat in her white wingback chair. Her pink sweater had a faint tea-colored stain down the front.

“Why are you here?” she said.

I sat down on the white sofa. Tried to remember to breathe. I settled back into the cushions and started to put my feet on the coffee table, then stopped. There was no place for feet. The table was littered with papers, Post-It notes, crumpled napkins, pencils and pens, Scotch tape, newspapers, books, magazines, used tissues, crossword puzzles, and yellow lined tablets covered with wavery writing that started out in the upper left corner, but edged away from the left margin at the beginning of each line, until the lines at the bottom of the page were only half as long as those at the top.

I leaned forward and casually gathered up the tissues and paper napkins and dropped them into the wastebasket next to Frances’s chair.

“I’m here to find your cocoa,” I said.

“Oh, right,” Mom said. She reached into the wastebasket, plucked out a tissue, and tucked it under her sweater cuff.

The Post-It notes were different colors and different sizes. Some were tiny, almost the size of postage stamps, others were larger squares, and some were the size and shape of post cards. A square blue Post-It note had detached itself from the side of the refrigerator and settled onto the handle of a paper grocery bag on the floor.

A paperback book lay on the coffee table, Freedom From the Known. Stuck to the orange front cover was a Post-It note with a phone number, nothing else. I held up the little yellow square.

“Mom, whose number is this?” I said.

Mom leaned forward, took the note and stared at it, mouthed the numbers silently. She got up from her chair and stuck the note back on the book, centered it on the front cover with care. She smoothed down the sticky edge with her thumb. She stood up straight and folded her arms across her chest, a tiny warrior with flashing blue eyes.

“I don’t know,” she said.

Most of the Post-It notes littering the coffee table were square. Post-It notes apparently came in more than the standard yellow and pastel blue, green and pink—some of these were lavender, orange, and neon colors—pink and turquoise and purple.

I scanned the loose Post-It notes on the coffee table.

Pastel blue:  Lori’s son. Isaac?

Neon purple: buy timer

Pastel pink. Where did all the flowers go

Turquoise. 655-8311

Neon blue. make appt

Canary yellow. Aloha

Fuchsia : 91.5

Bright blue: Joan Wed

Pastel green: half and half

Glow-in-the-dark orange: ch 10 Friday 9 Bill M

Lavender: Marion

Yellow: tomatoes

I stuck the tomatoes note next to the half-and half note.

Frances was still standing across the coffee table from me. She grabbed the tomatoes note and stuck it back on the copy of Yoga Magazine.

“Don’t move it!” she yelled. “I don’t come to your house and move things around!”

A lined yellow postcard-size Post-It was stuck to the front page of The Oregonian.

water flowers

Frances had no plants, no flowers, said she had a brown thumb and couldn’t keep plants alive.

I got up to walk around the apartment. Her small kitchen counter, normally empty and clean, was stained with brown rings and grease, littered with saucers, crumbs, glasses and cups, three strips of well-cooked bacon on a paper towel, scattered loose tea, a black banana, a half-empty jar of salsa with no lid, spilled sugar, a nearly-empty can of chocolate frosting with no lid, matchbooks, several sticky lavender crystal wine glasses, a piece of burned toast, a dried-up and shrunken orange, sticks of incense, Oreo halves with the cream filling licked off, and more Post-It notes.

Nausea filled my eyes with tears. I swallowed hard several times and went to the sliding glass doors that led onto a tiny balcony. Four green plastic pots filled with red petunias were lined up in an orderly row against the railing.

Orderly, like Mom used to be. This chaos in her apartment had happened somehow when I wasn’t watching. Something bad, something destructive, had happened to Mom when I wasn’t watching.

“Mom, where’d you get the petunias?”

Frances fell back into her white chair and clasped her hands in front of her chest. “Tim sent me those.”

“Tim sent you flowers? Mom, Tim’s been dead two months!”

“It had to be Tim. I opened the door one morning and there were four pots of red petunias on my doormat.”

“But Mom…”  Mom believed that no one died, they just went on to live in another dimension invisible to us, a parallel reality.

Maybe. But how could the dimensions overlap, how could petunias cross the border from one dimension to the other if the dimensions were parallel. Parallel meant…separate. No overlap.

“I know he sent them. I was lonely, and I asked for a sign that he was OK. The next morning, there they were.”

Believing Tim had dropped in and left an Easter surprise was at least as valid as believing he had just become nothing, blipping out like the last little light on the TV screen when it’s turned off. If only I could have experienced red petunias at my door, or even a single red carnation.

My eyes burned.

“Just in time for Easter,” I said. “Tim loved Easter.”

Mom got up and went to the sliding glass door to look at her red petunias. “Yes, he loved religious holidays, didn’t he? Maybe because of the music…”

She turned back to me.

“Did you find my cocoa?”

“No, Mom, I haven’t even looked yet.”

Mom followed me to the kitchen. I opened the cupboard over the sink. There were not one but two boxes of hot chocolate drink packets. I pointed. “Do you mean the hot chocolate packets?” I said.

Mom’s mouth was open and slack with shock. “Where did those come from?” she said.

“I just opened the cupboard and there they were”

Her face suddenly contorted, a face I couldn’t remember ever seeing before, but it scared me the way a child is scared of an angry parent.

“I looked there. Several times, I looked there.”

“Mom, listen, listen to me. You know how it is, sometimes we look right at something and just don’t see it. Then someone else comes along and they see it. It happens to everyone.”

Mom’s eyes were an arc of cold blue electricity. “That cocoa was not there before! You brought that cocoa in here.”

My mother was accusing me of planting cocoa mix in her cupboard.

Who was this woman?

I took a packet of Swiss Miss Cocoa Mix with Mini-Marshmallows out of the box and closed the cupboard.

“I’ll make you a cup of cocoa,” I said.

Mom turned and marched into the living room, her back straight. One foot seemed to lag behind the other. She sat in her white brocade wing chair and folded her hands in her lap.

“Fine,” she said.

The small table at the end of the counter where the white microwave had been now held a phone book with pink, blue, and neon orange Post-It notes clinging to the cover.

“What happened to your microwave?”

“I gave it to Angelfire,” she said. “She needed one, and I couldn’t remember how to use it anyway. All those buttons.”

I put the stainless steel kettle on to boil. The shiny surface was dulled with fingerprints, water spots, and grease.

“Angelfire? Who’s that?”

“A girl who comes to my classes.” Frances said. “I’ve counseled her a few times. Can’t remember what about. She needed a microwave.”

I tore open the packet of Swiss Miss and poured the powder into a gray mug. Her favorite mug. Nice women don’t make history  in red letters on the side.

“Angelfire… where’d she get that name?”

“What’s the matter with her name?” Frances said. “It’s as good a name as any. Good as yours.”

“Mom, you named me after your Grandma Judy. My name has a family history. Where in the world does a name like Angelfire come from? Did she make up her own name?”

I watched the teakettle, didn’t look at Mom. “Sounds like a made-up name to me, unless she was born to hippie parents in some Sixties commune. How old is she?”

“Your Great-Grandma Judy knew how to keep a civil tongue in her head.”

The teakettle whistled and spurted steam. I poured hot water into the cup. In the silverware drawer the forks, knives and spoons were jumbled together, no longer in their proper slots in the plastic tray. I found a spoon, wiped it off on the dish towel hanging over the oven door, and stirred the cocoa. Tiny dry marshmallows floated to the top of the cup.

There was a coaster on the table next to her chair. It was the classic yin-yang design in black and white, stained with tan rings. I set her Nice women cup on the coaster.

“Mom, are you doing classes?”

Her voice from her chair was frosty. “I did one, but it didn’t go well. So I’m taking a little break.”

Why didn’t you tell me about mom?

“Why didn’t you tell me about Mom?”

It was still light out, the sun slanting red and purple and gold into the kitchen through Jack’s stained glass piece that hung in the window over the sink, the window that looked out on the neighbor’s side yard. The kitchen smelled of the fried bacon that was cooling on a paper towel, and potatoes and onions simmering in clam broth. A sourdough baguette browned in the oven.

Jack poured himself a glass of Chablis. He held the bottle up to me and raised his eyebrows. I shook my head and he put the bottle back in the cupboard and pulled up the stool next to me at the butcher block. The butcher block he built with edgegrain maple for the kitchen island, oiled it with olive oil, sanded down the raised grain and oiled it again.

“Why didn’t I tell you about what?” he said.

My look at him was incredulous. “You have to ask?” I said. “All the times you’ve stopped by there in the last couple of months, and you didn’t notice what’s been happening to her?”

Jack leaned on his elbows and took a sip of red wine. “I noticed. But what good would it have done to pile that on you right now? You had enough to deal with—Tim, his funeral, grief. There was nothing you could have done anyway.”

“There is always something I can do. If I know the situation. I could clean up her apartment, take her food, help her take a shower…”

I made a circuit around the kitchen, opened the cupboard, pulled out the bottle of Chablis and poured myself a glass. “What happened to her, Jack? It seems like she just fell into some kind of chaos. She isn’t even washing her hair, or her clothes.”

Jack sipped his wine. “Yeah, that’s not like Frances.”

I added another pint of milk to yhe chowder, turned the heat down, and crumbled in the bacon.

I crumbled bacon into the chowder. “She imagines Tim brought her flowers. She seems to be losing her memory. And one foot drags.”

“Did you notice that her speech isn’t always clear?” Jack said. “And she has trouble following a conversation?”

I hadn’t noticed. The Post-It notes, and the cocoa, and the red petunias, were enough to narrow my focus.

“How long has that been true?” I asked.

“She’s been having trouble with her memory for a long time,” he said. “You probably didn’t notice, you were with Tim. I’ve been helping her pay her bills for months. She’s forgotten how to write a check.”

I took the bread out of the oven and dropped it onto the butcher block. “What is it?” I said. “Is she sick? What’s going on?”

Jack took a serrated knife from the knife holder on the wall next to the stove. He sliced into the baguette. “I think she may have had a small stroke,” he said.

A bowl in each hand. I set them on the stove. Added a lump of butter to the chowder. Ladled the chowder into the bowls.

“A small stroke,” I said. I set the bowls on the butcher block and dropped onto my stool.

Jack laid a napkin in a basket and scooped the bread slices into the basket. He brushed the crumbs off the butcher block into his hand and tossed them into the sink.

“Maybe several small strokes,” he said. He sat down next to me and played with his spoon. “They call them T.I.A.s.”

“What the hell is a T.I.A.?”

Jack took a slice of bread. “Transient Ischemic Attack. It’s a mini-stroke. I asked Doctor Ellen when I installed her cabinets.”

Where had I been? My mother had become demented and crippled, Jack taking care of her, and I was unaware. My attention was all with Tim. Mom couldn’t stay in the room with him, so I did. I stayed with Tim and burned with resentment. They could all go to hell.

Apparently Mom had.

The chowder breathed wisps of steam onto my glasses. I took them off and polished them on my T-shirt.

“Transient Ischemic Attacks,” I said.

“It’s from high blood pressure,” Jack said. “Something about the blood supply to the brain.” He spooned up chowder. “You sure do make great clam chowder.”

“Learned it from Mom,” I said. I ate a spoonful. “Geez, Jack, you’ve become Mom’s caretaker. You’re the one who keeps tabs on her. Can she still cook? Does  she still cook?”

He took another piece of bread and dunked it in his bowl. “Not much,” he said. “She lives on snack food she gets at the store, ice cream, cocoa, toast, poached eggs, olives, stuff like that.”

He stopped to finish off the chowder and wiped his mouth on the purple napkin.

“I take her healthy food from the deli,” he said. “Salads and chicken.”

His face was deep laugh lines around his mouth and eyes. I touched a line at the corner of his mouth and smoothed it flat.

“You are an angel,” I said. “How long have you been taking her food?”

He got up to refill his bowl at the stove. “Quite awhile,” he said. “Since Tim went in for that last surgery, the one where they took out his spleen or something, and you stayed there with him. I took her over to see him then took her home, and went to the fridge for some milk for my coffee. The only thing in her fridge was milk, cheese, and eggs. And some bowls covered with green mold and plastic wrap.”

My stomach turned over. “Did you throw out the green stuff?” I said.

“I tried,” Jack said. “She wouldn’t let me.”

He sat down with his bowl and picked up his spoon.

“So that’s when I started taking her food,” he said. “Not that it helped any. Every time I opened the fridge to put in a new takeout box, there would be all the stuff from the last time.”

I winced. “Why didn’t she eat it?”

“She said she forgot it was in there,” he said. “So sometimes I’d just heat it up for her right then and sit there while she ate it. Until she got rid of her microwave. After that it wasn’t so easy. She doesn’t have many pans, says she burned up her favorite pan, forgot it was on the stove. She threw it away.”

My appetite was gone. I pushed away the chowder. This felt like coming in halfway through the movie and not being able to pick up the thread of the plot. Mom was burning up pans on the stove? And Jack didn’t tell me? Because I was so involved with Tim and with my own grief that he figured I couldn’t handle it?

“Omyfreakinlordy,” I said. “You’ve been juggling all these balls for me and I had no idea…”

Jack carried our bowls to the sink, poured my chowder down the drain, and rinsed the bowls under the faucet.

“You’re starting to eat like your mother,” he said.

A spike of anger flared inside my belly. “Don’t say that!” I said. “I’m not like my mother. I’m never going to be like my mother.”

Jack leaned against the sink, crossed his ankles and crossed his arms over his chest. The corners of his mouth jerked the way they do when he’s trying not to smile, when he knows a smile would be exactly the wrong expression in that moment.

“Never going to be like your mother, eh?” he said. “Sometime when you’re in a better mood let me count the ways you already are like your mother.”

The spike of anger changed to sick fear. “I’m never going to be in that good a mood,” I said.

“It’s not all bad,” Jack said. “She’s not a bad-looking woman for her age. Well, except maybe lately…”

The sparkling bright hair turning dull and greasy with neglect, the dirty clothes, the dragging foot.

I’d never be able to use a Post-It note again.

Jack came around to my stool and put his arms around me from behind. “I’m glad you see where things are with her now, Judy,” he said. “I was getting kinda strung out trying to keep up with things over there.”

Leaning back into his solid chest. “What else is there?” I said. “What else did I miss?”

“Well, you know how she can keep up a good front when she has to,” Jack said. “Like when she knew you were coming today. But sometimes when I’ve stopped by after work she was still in her bathrobe, sitting on her couch with all the lights off while it was getting dark out.”

He felt the shudder go through my body and tightened his arms. “Judy,” he said, “be patient with her. She’s pedaling as fast as she can.”

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MEMOIR Chapter 62

MEMOIR

Chapter 62

There was still a memorial service to plan. Relatives to feed at my house. Lots to get through before I could really let down. I walked in a shades-of-gray world, no color, no joy, no movement. Made clam chowder for a crowd, sat and listened, even talked, to relatives who had not seen Joe for, possibly, years. Answered the phone, answered questions, identified Joe’s body after the American Embassy finally intervened to get it shipped home. Arranged for cremation.

The service had to be held in the gymnasium to accommodate all the people who wanted to be there.

Mom wore a long red chiffon dress, Joe’s color. The gymnasium looked like a political nominating convention, with red balloons, picture and posters of Joe, and tiers of bleachers for the hundreds and hundreds of students, parents, teachers, and friends. Mom smiled through the Trumpet Voluntary played by eight trombones, a lineup of brass across the front of the gym, Joe’s band buddies from all over the city, grownup men blowing their horns through tears and snot.

Mom smiled through the eulogies. Smiled while people stood in line to squeeze her hand and offer tributes to her youngest son.

“He’s fulfilled his purpose,” she said over and over. “Like Jesus.”

What purpose is she thinking of? I wondered. How does anyone ever know for sure what purpose they are here to fulfill?

I stood next to her.

A line of people waited to talk to me.

I turned to the first in line, a Mexican father and his son.

The father stepped forward and handed me a lapel pin, the joined flags of Mexico and the U.S.

“I wanted you to have this,” he said. “My son was in Mr. Shultz’s choral music class when he was in middle high school.”

His eyes filled with tears, as did his son’s.

“Your brother told my son that someday he would sing in Carnegie Hall.” His tears spilled over, and he wiped his eyes with his sleeve.

“I wanted you to know that…last year…he sang in Carnegie Hall.”

We all three cried and embraced each other. My eyes wandered to the slowly emptying bleachers.

How many of these children and their parents and the other teachers felt Joe’s purpose had been fulfilled in part through themselves?

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