Get Me to the Church on Time

Mom woke at 3:30 am. "Help me! "

"What's wrong, Mom?" I asked, jumping up from the futon. "It's me, Anne."

"Anne, I can't stand myself."

"What? Do you have pain? Where?"

"Everywhere," she answered. "I want to get out."

I gave her a tiny squirt of morphine into her cheek and called a caregiver to check her Depend and help me turn her to face the other direction. I went back to sleep.

At 7 am she woke again. "Mother, I want you!"

"I'm right here," I answered.

"What day is it?" she asked.

"Sunday," I answered. "But you don't have to go to church unless you want to."

"I always go to church," she answered.

I thought about that possibility: actually take her to church, even though she's weak, a few days before her death?

I hadn't brought anything to wear to church; for the night I'd just worn soft jogging pants with a stripe down the side and a turtleneck long-sleeved shirt, very pajama-type clothes but not actual pjs. If she actually tolerates getting dressed, I could stop at home on the way to church and change clothes, I decided.

When Elisa came to Mom's room at 8 am, we managed to get Mom dressed in a soft tan cashmere pullover sweater and velour soft pink pants. I put a pink and tan sweater vest over the sweater. We gave her two eye dropperfuls of water and squirted some morphine into her mouth.

"Would you rather stay here and rest in your recliner or go to church?" I asked.

"Go to church," she said every time I asked her.

I wondered if I could actually take her and get her back without her dying en route. Being alone with her if that happened would be really difficult. She seemed clear about wanting to go, however, so I decided to risk it. At 9:30 Elisa and I lifted her into her wheelchair and I wheeled off toward the elevators and the car.

The other caregivers gaped at me as I wheeled her off. Most of the residents in the "Reminiscence Neighborhood" never leave from day to day, though they are able to walk and in relatively good health, but here she was on hospice, a few days from death, being wheeled off to go to church.

I grinned sheepishly as we left. "Well, the worst it can do is kill her," I said.

There wasn't time for me to go home and change clothes, much less take a shower, so I walked in wearing the clothes I had slept in: navy jogging pants with a red stripe down the side, a white turtleneck shirt, as well as a red hoodie jacket of Mom's.

We arrived at 9:55 am while the pastor was doing the children's message, just before the main sermon. I hoped our arrival would not startle him; after all, my sister Emily had been emailing him on Saturday about possible dates for the memorial service, but now (two Sundays after Easter) I was wheeling the resurrected, ghost-like Evelyn into church.

He seemed to take our arrival okay, but suddenly I saw the tables of bread and wine on four sides of the congregation.

"Oh shit, it's Communion Sunday," I said to myself.

That's not my usual response to this sacrament, but I knew that Mom was not up to receiving Communion today. It would be difficult, perhaps dramatic.

After the sermon, when the time came, the pastors did an especially elaborate version of the bread and grape juice because some of the children were celebrating their first Communion.

The congregation was asked to get up and walk to one of the four tables to get the bread, walk back to their pews and sit down, then take the bread in unison. Because I was boxed into the pew by the wheelchair on the end near the outside aisle, this was a tricky maneuver, but I managed to get out, take a bit of bread, and get back into my seat.

At the proper time I pressed a tiny morsel of it to Mom's lips, but of course she clenched her jaw, refusing all food.

Then we had to get up and out again to collect our little cups of grape juice. I brought back three, one for me, one for the man next to me, and one for Mom. I thought I'd just touch it to her lips as a gesture, but when I did, she spit a bit of yellow phlegm into the cup. Alas--an unholy moment. Catholics and some Protestants make a point of offering eucharist to persons who are dying, but this is not how it's supposed to happen.

Except for this part of the service, Mom got through it without too much noise or fuss. Her eyes were closed and she may have been drifting in and out of sleep, but she had to hear the praise band shouting, "I'm free! I'm free to live! I'm free to praise!"

Afterward I wheeled her out into the line of people shaking hands with the pastors at the door of the church.

"How's she doing?" asked the Reverend Lisa Bove innocently.

"Well, she's had a couple of near-death experiences in the last day or two," I admitted. I didn't say, "She shouldn't be here. My sister will say I'm crazy when I tell her we came to church."

"Let's pray for her," offered the Reverend Charles Svensen, who had been receiving Emily's emails about dates for the memorial service.

"Dear Lord, we pray that you will keep our sister Evelyn safe as she walks this final part of her journey and bring her safely into the glory of your Kingdom," he said, kneeling at her side with Lisa.

"Amen," we all said.

"The pastor prayed for you," I said to Mom then and asked, "Do you know that?" Her eyes had been closed almost the whole time. She nodded yes.

When I reported the scene to Emily later in the day, she commented, "Oh, that's good. You reported her near-death experiences, and he prayed for her to have a full-death experience."

After I lifted her into the car and drove off, I asked, "Would you like any ice cream?" We often stop at Baskin-Robbins after church or after a doctor's appointment.

"Yes," she nodded but didn't take even a tiny spoonful of it when I put it to her lips.

I took her to my house, but she was unable to grab onto the car to help get herself in and out. I had to lift her from her wheelchair and then from the car back to the chair.

Later in my kitchen, she wanted to go back to her residence almost as soon as she arrived.

I took her back at 12:30 pm, grateful that no medical emergencies had occurred, thinking to myself, "She'll probably never get out of her room again."

We had a peaceful afternoon. I read Psalm 23 to her, and when I recited the Lord's Prayer, she tried to join in with me in a faint voice.

At 3:30 pm we gave her a tiny dose of morphine. Her blood pressure was normal today, 128 over 79. At 4 pm a relief caregiver arrived, giving me a break until 8 pm.

Moment of Panic

Today Mom was almost dead when I arrived at 10 am, hunched over in her wheelchair with her head almost touching her knees, phlegm blocking her throat, her upper plate of false teeth in her lap.

The morning caregivers were nearby busily serving breakfast to their 28 residents, unaware of her condition. Mom had pushed herself away from the table, trying to leave and go back to her room, but she'd only gone about ten feet away.

When I tried to talk to her, she was nonresponsive and as limp as a rag doll. Her eyes were rolled back so only the white was visible.

I called the meds person to take her blood pressure. She couldn't get a reading, but Mom was still breathing lightly and had a pulse. We were all panicked.

"Today's the day," I thought. "I didn't think it would come this soon."

We managed to wheel her back to her room and stretch her out on the bed.

Beulah, one of the caregivers in the dining room, said that Mom had not eaten any breakfast but had coughed up a large glob of yellow phlegm. More phlegm was still in her mouth, but she wouldn't open to let us clean it out.

Finally we got a blood pressure reading of 102 over 61. Her pulse was 74. I called my sister and told her, "It's today, I think." Emily cancelled her plans to do a wedding rehearsal and drove up to see Mom, arriving at 12:30 pm.

Realizing that Mom was not going to get individual supervision from her residence, I called the caregiver agency and changed our request from eight hours a day to twenty-four hours in two shifts of twelve hours, 7 am to 7 pm and then an equal shift at night. Mom is probably going to die in the next six or seven days, but she will not die unattended, hunched over in a wheelchair or alone in her bed at night. Someone will be with her.

The agency would have coerced someone into appearing that night at 7 pm, but I told them we wanted the two twelve-hour shifts to begin on Monday. For the weekend I would stay with Mom overnight as well as during the day, with breaks provided by Emily on Saturday and the scheduled caregiver 4-8 pm on Sunday.

At 2 pm Mom's blood pressure was still 102 over 59. I left Emily in charge until 7 pm, when I would be back to spend the night in Mom's room.

We changed her into her nightgown and tried to squirt a little water into her mouth to freshen it.

Then I said, "Goodnight, Mom. I love you."

"I hate you!" she said vehemently.

"That's okay, you can hate me," I answered. "Is it okay to put music on?"

She nodded. We listened to hymns on the CD player.

Meanwhile, I called my brother Bill to discuss the day with him.

"It would have been an easier death for her to go today from lack of oxygen than to do organ failure," he commented. "There's a lot of suffering with that."

"Yeah, I guess it was kind of pointless to revive her now so she can die in four or five more days," I confessed. "Oh well...."

After talking to the nighttime caregivers. I turned out the light about midnight, sleeping on a futon on the floor.

Caregiver Slavery

I'd asked Baby to work this weekend, but she called me Friday morning and said that she'd been sick all week and couldn't work on Saturday or Sunday.

I called the new agency, American Angel Caregivers, and asked if they could get anyone to work eight hours on Saturday and Sunday on short notice.

"No problem," said Ana, the owner.

But when I talked with Connie Erni at 4:30 pm, she said she had agreed to come, as a personal favor to Ana, even though she would miss a family birthday party. Her cousins were upset with her for telling them she couldn't come at the last minute.

I realized Connie had been coerced.

"No, don't come on Saturday," I said. "I'll take care of my mother on Saturday. Can you come for eight hours on Sunday?"

"Yes, but I would like to go to church," she said.

We agreed that I would do Sunday morning to mid-afternoon, and Connie would work 4-8 pm.

This was okay with me; I wanted to have some private time with Mom while she was still lucid, without my sister or caregivers present.

End Stage Dementia

Mom is not doing well.

She's still alert and talking to us; she knows who we are, but she's eating almost nothing and not drinking very much either. We try to spoonfeed her pureed food, but she is not able to swallow it.

The doctor says she is weak; her throat and swallowing muscles are weakening. They told us in 2004 that not being able to swallow is the typical final stage for both Lewy Body Disease, which she has, and for Alzheimer's.

I couldn't really imagine it then--how is it possible to be unable to swallow? But now I see her eager to eat something, taking it in her mouth, but unable to move it to the back of her throat. Instead it falls out or her tongue pushes it out in the attempt to move it. Then in irritation she says, "I don't want any more" and clenches her teeth.

My brother Jim from Denver came out for a visit this week and had three good days with her. We took her to the Santa Monica Pier and to my house to sit in our kitchen and talk and try to eat. When Jim was saying goodby, she told him, "I love you."

She probably will not make it to May 1. We are thinking the service could be as early as April 26 or even April 19. It will be in our church in Santa Monica with our pastor who knows her because I take her every Sunday. He also knows Emily from various pastors meetings.

She is peaceful and aware of her condition. She wants her suffering to end and says, "I just want to go to heaven."

A week ago she was asking how much money she has left; when I told her, she said, "Enough to go to Japan!" I let her talk about making a trip there. But two days ago she said, "I don't think I have the health to go to Japan." "No, I don't think so," I said.

We appreciate your prayers as she makes this final part of her journey.

Jim's Report

An email from my brother Jim:

"Sorry to send this, but I want to be clear just in case anyone's in denial. Hospice and the care assister both pointed to indications that Mom's body is shutting down: cold feet and extremities, purple in the hands and feet, inability to eat or even drink, swallow or pee, nausea, pain or imagined pain in back, falling feeling, more sleep going into a deep state where she repeats things like "please take me...." or "please just let me die."

If I take what I heard from Hospice, who deal with dying, I give her a few days. She's clearly lost a lot of weight since I saw her last year, but she's still got body weight there -- enough to pain my arm, and lots more than Aunt Grace at the end.

I am planning for her passing; maybe Tom, Greg and I will come out for a memorial (by car).

Thanks to you all for telling me to get my butt out to see her, because we had a nice visit.

Jim

The Cat, On the Other Hand

Mom is declining, but the cat is doing great.

She's sitting on my lap and purring as I type this.

Twice a day we squirt pureed cat food down Celeste's feeding tube.

Yesterday I took her to the vet, hoping to get the tube removed and return her to eating kibble by herself.

"No!" said Dr. Hernandez. "It can't be removed until she's been eating normally and drinking water for a full week."

"It's been four days, " I argued.

I lost. It takes a village to determine the fate of a cat. Once I enter the vet's door, it's out of my hands. That doctor has taken a hippocratic [sic] oath to serve and protect animals; she wouldn't put the cat to sleep, and now she won't remove the tube.

So I come home from begging Mom to eat and put a can of cat food in the blender with a little water; I corner the cat, place her on a towel on the washing machine, and squirt the food down her tube. I also have to put two pills down, and they get stuck in the tube. I keep trying to push the syringe and clear the blockage until suddenly the cat food spurts all over the wall and me and the washing machine. I wait a couple hours until the clogged pills dissolve and try again.

We could put a gastric tube in Mom, too, but with her dementia she'd probably pull it out. I'm sure she wouldn't like it. Her quality of life is already so low that another six months with a feeding tube would be miserable for her.

Celeste has so much energy back that she's back to her usual tricks: touring the house each day to select which bathroom rug she will do number two on.

My prayer: that she will soon be outside in the daytime to perform that act on the grass.

"I'm Ready"

This evening Marnie, the lead caregiver for the Reminiscence Neighborhood, was sitting with Mom and trying to get her to take her 5 pm meds and to drink a little milk.

"Why are you doing this?" Mom suddenly asked her. "I'm ready."

"Yes, you are ready, aren't you?" Marnie replied. She stopped pressuring her to take the meds.

A few minutes later Marnie slipped out of her room to cry.

She reported the scene to me later--with tears.

Marnie's own mother died last November of cancer at age 71 in the Philippines. Marnie had visited for a month in the summer, but she could not nurse her during her final months without quitting her job here in the US. Instead she earned money to send to her mother and to build a wonderful memorial plaza with benches and flowers to house her mother's ashes (and later those of other members of the family).

Marnie nurses Mom like her own mother; she came in last Sunday on her day off to care for Mom and try to feed her.

What a gift to us! We can't repay kindness like this; we can only accept it with gratitude.

Dying Clears the Mind

Dying clears the mind.

In the last four years of Lewy Body Dementia, Mom has often been confused, irritable, forgetful, even hallucinatory.

But today when Jim told Mom he was leaving, her mind was clear.

"Thank you for coming," she said.

There were four of us bustling around the small room: the hospice nurse, the private caregiver, Jim, and me. It was not easy for him to have a private moment with her.

I wasn't sure she understood that this was his final goodby.

"Jim's going to fly back to Denver," I said loudly. "He came here to visit you for three days."

"I know," she said.

"Goodbye, Mom," Jim said, hugging her as well as you can hug someone stretched out in a recliner.

Jim and I walked outside the room and left the hospice nurse and caregiver to continue their work with her. We were talking two minutes later when they called Jim back in.

"She wants to see Jim again," they said. He went back in, and the three of us retreated to give them another few moments together.

"I love you," she said clearly.

"I love you too, Mom," he said.

After a few more words, he left again.

Tremendous presence of mind for someone dying with Lewy Body Dementia--it moved us all to tears.

Jim, her third child--neither oldest nor youngest nor nearest during her last few years--needed to hear this, and she needed to tell him.

Her clarity took our breath away.

Are You My Mother or My Daughter?

"Are you my mother or my daughter?" Mom sometimes asks me, on a day when she's a bit groggy or confused.
Sometimes I say, "I'm your daughter but right now I'm taking care of you."
Then I change the subject to avoid focusing on her confusion.
Sometimes I don't explain.
Other times she just says, "Mother, you're hurting me!" or "Mother, don't make me do this."
I don't remind her that I'm her daughter.
~~~
But now I'm not sure myself: am I her mother or her daughter?
The boundaries between us are getting so confused as I tell her to eat or take meds, make medical and financial decisions, and sign for her on all legal and medical papers.
I tell people what she wants, what she thinks, what she is saying when her mumbling is too faint to be understood.
I tell my brothers and my sister what she is doing, how she is feeling, what she ate or didn't eat, drank or didn't drink, what meds she refused or took, what her needs are from day to day.
I tell her doctors and the caregivers and the hospice people all these things too.
I sit with her when she sees her therapist, silent as he probes her mood and behavior, until he turns to me and asks for my report. If she gives fanciful answers or starts to tell an unrelated anecdote, I give more accurate answers for her. If she's too sleepy and unresponsive to talk to him, I speak.
One day I wheeled her into the office of my own therapist, unexpectedly. We had driven to UV Irvine for an appointment for her, and I didn't have time to return her to her residence before going to my own therapy appointment. I couldn't leave her in the car.
"Mom, this is my doctor, Deborah," I told her. "Deborah, I misjudged the travel time and had to bring her in with me today."
She listened avidly to my whole session, adding her two bits here and there, trying to take control and make it all about her. (Which, in some sense, it was.)
The next week my therapist had a hundred comments on how controlling she is, how demanding, how I kowtow to her, what good care I take of her, etc.
Anyway, the point is, we are enmeshed.
Ever since I moved her to California in November, 2003, what few boundaries we used to maintain have increasingly dissolved.
If she's happy and healthy, I'm happy.
If she's upset, so am I.
This pattern is the opposite of good thinking on my part. As a codependent person and an Al-Anon member, I am not supposed to let other people's moods or behavior affect my moods or choices, but I'm not good at maintaining my boundaries.
This week that she's starting to decline and being put in hospice, I came down with bronchitis for the first time in ten years or more.
~~~
However, I went to my Al-Anon meeting tonight and got clarity on this issue.
I am her mother, and I need to start acting like it.
I need to take control of the medical decisions, stop waiting to see what she wants or how she behaves, stop trying to bring my brothers and my sister into every decision.
If she asks again, I'll say, "I'm your mother."

Time to Increase Private Caregiver Hours?

I had a flash of insight just now--or maybe just another dumb idea like putting her on hospice, firing Roze Room, starting up with another hospice, etc.

Maybe we should increase her private caregiver time to 8 hours every day again, not two days a week.

However, I'm not sure how long she can pay for this. Not a year!

I went there at 1:30 pm today and found her lying in bed, facing the wall.

She always begs to be put back to bed in the daytime now... but I don't let her do that.

I got her up into her chair, and today as yesterday she kept saying, "Don't let me fall!"

"You're not falling," I say. "You're in your chair. Here I am."

She grips onto me and doesn't want me to let go or leave. Because her eyes are closed, she doesn't know if I'm there unless she is touching me.

But when I start coughing, she tells me to leave, take care of myself. So she is somewhat sane, and perhaps more sane than I am.

A friend who died 5 years ago told me ten days before dying that she had frequent sensations while in bed of falling (that feeling we all have had in bed a few times, our mind not anchored down by sight or hearing before we rustle the covers and remember where we are).

Mom may be having that sensation. In any case, she's very clingy. And of course, controlling.

What do you think?

Stealth Doctor Explained

Roze Room called today to see if I indeed want to cancel them.

I said yes, the deed is done. Though the doctor who paid a stealth visit at 6:30 pm last night sounded really kind and accurate in her assessment of Mom's situation, Dr. Rosen and I made the decision at 5:30 pm to move to Skirball Hospice. I talked with Skirball. I can't call them and Dr. Rosen again and tell them we want Roze Room.

Besides, I don't want a hospice that pays two stealth visits in one day, one putting a hold on milk products and the other starting them up again. Neither one called me to let me know the decision, ask for input, explain, etc.

I said I need to talk with this mystery doctor to ask why she didn't call me before, after, or during the visit--and to hear what her assessment of Mom is.

I was wondering if Roze Room sent her over to protect themselves on the last day of their six-day stint as the hospice service. Was she there to correct the stop-milk order, so they wouldn't look so bad? Maybe in case of a lawsuit? Was she intentionally avoiding a conversation with me?

A few hours later Dr. Ana Cartmel called and explained. She said she has 18 years of experience as a hospice physician and teaches physicians and residents.

Last night she had another patient to check on who lives on Mom's floor. After working with the other lady, she realized Mom was nearby and decided to pay an unplanned visit. Because she had to rush off to speak at a nearby facility at 7 pm, she didn't call me afterward, as she normally would have done.

After hearing this, I realized she was a good doctor paying a visit out of kindness. I asked her to tell me what her assessment of Mom was.

"She just looks very weak, tired, but extremely peaceful and also comfortable. Her lungs were not congested--they were totally clear, though earlier in the day the home health aide had listened and found her congested. The aide spoke with Renee, the RN, who placed the "Hold milk products" order and called me afterward.

"It was not a stop order--a hold just for the moment, until someone could assess her further.

"My assessment is that she is probably aspirating frequently on the liquids and maybe on her own saliva. Her whole body is becoming weak, and the muscles in her throat and mouth are weakening as well.

She is probably getting some liquids or foods into her lungs, and this could cause them to sound wet and congested at one time during the day, but totally clear hours later.

Over a period of time I would expect her to get pneumonia with the aspiration, and I expect she will go from this."

"Pneumonia, the angel of mercy," I said. "She always said it was a quick and easy way for elderly to die when they were sick. She was a public health nurse and taught nursing."

"How interesting that this was her profession!" Dr. Cartmel said.

"Yes. Pneumonia, much better than organ failure as a way to die," I said with this new view of her future.

She said a dietary consult should be ordered by the new hospice service--whether to have her on pureed food, etc.

She said to give her all the milk and Ensure she wants--milk is not the cause of her phlegm.

Also: Stop V-8--it's acidic and could be causing her nausea, esp. if given just before meals.

"If I'd known you were such a good doctor, I would perhaps not have changed her from Roze Room," I said. "But the decision is made. I don't want to call Dr. Rosen and have her change the referral she just made to Skirball."

Sad, confusing. Better if I had waited a few days before ending Roze Room.

But still--twice in one day I was not informed about a medical decision (hold milk products, don't hold them) and not given the opportunity to be involved in that decision.

Do Not Kill Her Without My Permission

Today I expect to sign up with the third hospice company in 24 hours.
I say hospice company, not hospice service, because they are making big bucks off this work via Medicare.
When I sign all the paperwork and talk to the MD, RN, LVN, social worker, chaplain, and home health aides, I will stress one point: DO NOT KILL HER WITHOUT MY PERMISSION.
In other words, do not order any medications or stop any foods or liquids without talking to me first.
The first hospice was Roze Room, which I hired a week ago today. I fired them yesterday.
Roze Room as in sweetness and light, Rest here in this rose-scented room while we kill you.
They were doing fine until they sent an order to stop all milk products, the only form of nourishment Mom has taken in significant amounts during the last week. She just pecks at her solid foods but drinks full glasses of milk or Ensure.
Next I called Vitas, highly recommended by the Filipino caregivers and the Indian med nurse who form the front line in the battle against death when people end up in the Reminiscence Neighborhood. (In this brave new world, we pretend that the Alzheimer's, Lewy Body, and vascular dementia patients can reminisce.)
Vitas as in We are giving you life, not death.
But at 5:30 pm the geriatrics internist called me and said she doesn't refer to Vitas. She's heard bad things about it. She refers only to Roze Room or Skirball.
So after six phone calls and a few faxes, starting to make appointments and get the papers signed with Vitas, I called and cancelled with Vitas.
Dr. Rosen's office faxed a referral to Skirball. I expect to enter negotiations with them today--starting over where I began a week ago: intake papers, medical histories to every conceivable level of person who might visit, appointments, etc.
Skirball as in the name of the Jewish philanthropist who also endowed the Skirball Cultural Center on Mulholland Drive a few miles from here.
I hope it's not Skirball as in Ha ha, got you now, screwball.
I will tell each person I speak to from this agency, DO NOT KILL HER WITHOUT MY PERMISSION.
Do not order morphine without telling me first.
Do not stop her milk products without telling me first.
Call me when a doctor visits--I'm only five minutes away. I will be there. I'd like to consult with any visiting doctor--to give information and receive input.
Call me as many times a day as you want, whenever anybody visits. Just stay in touch with me.

Playing Musical Hospices

Today we played "musical chairs" with hospice agencies.
We started out with one hospice, Roze Room, completing a week with them.
Next we jumped out of that chair, ran around the circle, and jumped into another hospice, Vitas.
Then the doctor said she doesn't refer to Vitas, doesn't recommend it, so we jumped up and ran around the circle again, landing in Skirball Hospice.
Quite a game.
I spent about eight hours playing this game.

Teetering on 89

Mom weighed 92 pounds a week ago today, and she has eaten very little since then.
But she looked animated and good Saturday night and Sunday, while Bill was here. She was dressed in her best Lord & Taylor suit, a touch of rouge on her cheeks, string of pearls and earrings.
Yesterday at 2 pm she looked shriveled and unresponsive: a sleepy day after high activity. Normal pattern.
But today when I saw her at 2 pm she looked--well, like death warmed over. Pale, weak, less flesh on her face than the day before.
"She didn't eat anything yesterday or today," JR told me. "I tried three times last night to get her to eat but she refused. She wouldn't drink any milk either." He was apologetic, fearful of being the bearer of bad news. Every day he has to report something to me; yesterday it was that she had refused to let anyone put her false teeth into her mouth.
No food or milk for 48 hrs., I reflected. That would shrink anyone, especially one who is 89 years old and weighs probably 90 or less.
Mom was mentally weaker too; she kept saying, "Don't let me fall!"
"You're just sitting in your chair," I tried to reassure her. "You're not going to fall."
Connie arrived to start her 2 pm to 10 pm shift, and an impromptu meeting began:
JR: "She wouldn't eat or drink anything."
Chhandita, patting her arm gently as if she were on the threshold out of this world, "Poor dear! But she drank a glass of milk for me last night with her meds. Today I used one of these blue sponges on a stick to clean the phlegm out of her mouth--it was sick. I will ask hospice to order more of these and maybe to suction out her mouth."
Connie, also caressing Mom: "Yes, honey, you need to drink some milk. Give her Ensure. She needs that."
The sight of those blue mouth sponges hit me: this is really hospice. When Aunt Grace died, they used these to moisten her mouth because she could no longer drink.
The earlier phone message from the REM director, Laquetta Johnson: "She has phlegm in her throat and could not swallow this morning. No meds, no breakfast or lunch. So I called the hospice RN."
Chhandita: "Hospice faxed an order today to stop all milk and milk products."
Me: "Isn't there milk in Ensure? But she has to have Ensure or something. They can't stop her milk when it's the only thing she will take."
Connie: "I'm going to get the Ensure and see if she'll drink it."
Me: "Yes, ignore the stop milk order. She has to have something. I don't like them to give an order like that without even visiting her to see the phlegm or calling me first to find out it's the only sustenance she's taking. They didn't even order something else like soy milk."
Connie: "Yes, Roze Room. You should go to Vitas. Everyone here is on Vitas; they are very good."
Chhandita: "Right, Vitas is better. Roze Room is not very professional; they don't handle the meds orders well."
Me: "Why didn't you tell me?"
Connie: "Yes, when you said Roze Room was the hospice, I thought 'Oh no!' But I didn't want to say anything because you had chosen it."
Me: "Why didn't you tell me? You both deal with the various hospices, and you both think Roze Room is not good?"
Chhandita: "Yes, Vitas is better."
Connie: "Look, she's drinking it just fine. She likes it. It's Ensure, Evelyn." She shows it to me.
Evelyn: "Don't take it away!"
Me: "Okay, Mom, you can have all you want. Good--strawberry milk. I'm going to call right now and change her hospice."
I made the call but started coughing so badly I had to hang up.
At that point I just left, retreating homeward, not to nap and write a book review but to start three hourse of hospice & health phone calls.
Mom, however, looked better already, greedily sucking the straw in her cup of Ensure.
By 8 pm tonight Connie reported that she had drunk two full bottles of Ensure and looked much better. "I put the video of favorite hymns on her tv, and she was singing with it," she reported.
When you weigh 89-90 pounds, a cup of Ensure is the difference between life and death, fading quickly or sitting comfortably in a recliner singing along with hymns.

And Now I'm Starting to Lose It

The heirloom ring, a circlet of diamonds surrounding an opal, sits on my computer desk, unused for over a week. Ordinarily I wear it and would especially for Easter and my brother's visit, but I forgot.
Getting out of bed just now at 8:45 pm, I chose two socks from six littered at the side of my bed, left there because for the last three nights I've been too tired to change into pajamas. I just fell into bed and hours later pulled off the socks and tossed them.
I'm on antibiotics for sinusitis and had only four hours of sleep last night, so I went to bed at 7:45 pm.
But then I remembered to call Connie, Mom's caregiver, and tell her that I made a 2 pm appointment with a doctor for tomorrow, so she could come to work at 3 pm.
"Oh yes, Anne, the doctor came to see your mom tonight," she told me.
"Doctor? Which doctor? When?"
"From Roze Room, maybe 6:30 pm. And she said your mom's phlegm is not caused by milk, and we should keep her on Ensure. And she asked, 'Why is she on hospice?'"
"Why didn't you call me, Connie? I could have been there in five minutes. I made an appointment for her to see a doctor tomorrow about her phlegm, because my brother Bill says it could be white tongue, a yeast infection in her mouth. But I'll cancel it if she saw a doctor tonight."
"Oh, Anne, I didn't think of calling you," she replied. "Anyway, she said keep her on milk and Ensure, whatever she asks for, but not V-8. She said the V-8 could be causing her to have an upset stomach, and we give it to her before dinner, so maybe that's why she's not eating."
"Oh--good that she says Ensure is okay, important to know about the V-8. But I cancelled Roze Room today, after I talked with you," I told her. "I'm getting another hospice. But I would have kept Roze Room if I thought they had a good doctor who would take an interest."
After a few more words I hung up, stunned and frustrated.
In the last six days I've seen two RNs and an intake person, giving lengthy medical histories to each; I've had calls from an LVN and a home health aide and narrowly missed a social worker--after several calls--BUT NOW I MISS A DOCTOR.
The doctor seems to have given excellent advice, cancelling the "Stop milk products" order faxed over earlier in the day by someone at the hospice agency.
But she didn't call first or during the visit to tell me she was there and give me to opportunity to give input.
She wanted the medical history--but asked questions from the caregiver, not me.
I am flabbergasted.
The hospice social worker yesterday, after asking if I or my siblings will want bereavement counseling, said something like, "Let us know if there's anything we can do to help you."
"You are not helping me," I retorted in exasperation. "I am trying to go along with this whole hospice thing, but I'm getting calls and deliveries several times per day from various hospice people who want me to be there and sign papers and give medical histories. This is much more work for me than before I put my mother on hospice. I'm on an antibiotic myself and I have to work tomorrow until 2 pm. I can see you after 2 pm or later in the week, but you are not helping me."
"Oh yes, ma'am, I understand how you're feeling," she cooed. "We can meet later, maybe in two weeks or whenever you want."
So now after all these other calls and elaborate arrangements, a doctor pops in and no one calls me.
Claro: this whole hospice thing is going to be extremely difficult--and the problems have nothing to do with grieving. It's just coping with the onslaught of appointments and mixed up exchange of information and conflicting orders from the various MDs, RNs, LVNs, home health aides, social workers, and chaplains.
Stop milk products.
No--give her as much Ensure as she will drink. Or milk. Whatever she wants--except V-8, her stand-by for the last three years.
After that conversation, I had too much adrenalin flowing to go back to bed, even with only four hours of sleep last night.
My happiest hours today were the six I spent driving to campus, teaching, meeting with students, and driving home. I thought I'd make a quick visit to my mother, return home, take a nap, and write a book review.
Instead starting at 2 pm I spent 1 1/2 hrs. with my mother and consulting with Connie and the med nurse, Chhandita, followed by another three hours on the phone cancelling one hospice service, starting another, consulting with my brother Bill and my sister Emily, and negotiating with the office of Mom's geriatrician, Dr. Sonya Rosen, to get a new hospice, finally getting a call from Dr. Rosen.
I had just cancelled with the second hospice of the day, Vitas, when I called Connie tonight and got the news that the hospice doctor had visited. That ended hope of getting to bed early tonight.
Does it sound like my life is out of my control?
Oh, and I forgot to mention that I squirted 20 cc of pureed cat food down my cat's feeding tube before going to bed.
As Step One in AA and Al-Anon says, "We admitted that we were powerless over __________--that our lives had become unmanageable."
Fill in the blank with the addiction of your choice--in this case, over care of my mother as she enters hospice.
My life is out of control for sure.
If it takes a village to raise a child, it seems to take a village to usher someone out of this world as well.
Everyone in the village is talking at once with conflicting advice or orders, unaware of the last few people who have tossed a viewpoint into the mix.
This hospice thing is going to be one hell of a ride--for me as well as for Mom.

A New Trick Every Day

For someone supposedly on the threshold of death, Mom sure has a lot of tricks up her sleeve.
Every day she has a new way of asserting control over her own life and circumstances, of commandeering the attention and energy of me and the team of caregivers at her residence as well as any stray hospice workers, chapains, or passersby.
In more active days it was throwing her walker down the stairs or biting or striking caregivers.
Now it's more often clamping her mouth shut to refuse meds or food--though the dramatic smashing of drinking glasses a few days ago shows she can still do actively angry things.
Today she refused to let caregivers put her false teeth into her mouth in the morning (her upper plate and partial lower plate)--someting she's never done before.
When I arrived at 2:30 pm, the reports started flying in:
"She refused to let me put her false teeth in!" said JR. "She did not eat or drink any breakfast or lunch!"
But a home health aide from hospice had been there left a note: "She drank some milk and ate grapes."
I didn't remember she was coming... but good. Except--feeding her grapes without teeth in her mouth?
A big no-no.
Mom did not open her eyes when I talked to her. I could tell she was having her normal non-booted up day after a very active day.
I tried to talk to her, got the teeth, managed to get them in her mouth, and instructed them to give her milk at least at dinner.
Then I left to pick up an antibiotic for myself and to figure out what to do with the cat.
I tried to get the cat put to sleep today, but the vet said she's looking great, should not be put to sleep. Instead we should pay for a $500 feeding tube to be installed in her throat.
I left it up to John. He said to go for the tube.
So the cat gets intubation, but Mom's on hospice and neither eating nor drinking--allowed to starve, I guess.
Go figure.

Easter Glory

Mom shone in all her glory today-- freshly permed hair, lightly rouged cheeks, Lord & Taylor suit with silk rose/black blouse and skirt.
I sent Bill to assist her with breakfast before I picked them up at 10:30 am for the Easter service.
She took her meds, no problem, swallowed right down--after all, Bill was there to watch.
She ate a little of her oatmeal and also her scrambled eggs. Drank milk.
We went to church--she did pretty well.
At my house, though, she couldn't eat much of the waffle with strawberries and whipped cream I gave her.
We put her down for a two hour nap, then got her up for Easter dinner. She ate a little.
Then Bill flew to Las Vegas for his surgeons meeting, and I was left to take her back to her residence.
A long tiring day for her--but a good day. She knew she had had a special day and enjoyed it.

Smashing Glasses

Never a dull day with Mom.
I sent Ellen to help Grandma eat lunch today, and she did it, though arriving after most of the non-lunch was over. That is, Mom didn't eat much, but Ellen fed her some strawberry ice cream.
"She looked really bad," Ellen said.
Bill flew from Seattle to visit Mom. When he and I arrived at 5 pm, the staff said she was having an agitated day.
"She threw her glass across the table and it smashed right here," Stan said. "There are still bits of glass we missed on the table," he added, pointing.
"She smashed a glass???"
"Yes--just now, and she did one at lunch, and one yesterday."
"She didn't just pour the water or juice out, but smashed the glass?"
"Yes, clear across the table--quite a good arm. Did she ever play baseball?
"Oh no! And she did this three times in the last 24 hours?"
"Yes."
"Are you going to kick her out?"
"No," the caregivers chuckled.
I went to tell Bill, whom Mom had just recognized.
"You're my son Bill."
He tried to feed her, mostly unsuccessfully, trying to get her to lean her head back so the food wouldn't fall out before she swallowed it.
Then we took her out for ice cream, which she wouldn't eat, and for a brief visit to my house.
All in a day.

Attack of the Hospice Team

Never mind that it's Good Friday, and that I met with two hospice people yesterday, an intake specialist and an RN.
Today I'm fielding phone calls from various other hospice people.
A chaplain wants to visit (on Good Friday morning? should he be at church?).
"Fine, go ahead," I say, "But I will not be there. And she doesn't like men. I don't know if she'll let you in the room."
[Later report: she sent him running.]
While I'm at a Good Friday quiet meditation in church, and a home health aide calls on my cell to say she will visit in the afternoon if I want or Monday if I prefer.
"Visit today if you want," I say, wondering why no one gets Good Friday afternoon off, but it turns out she doesn't want to. It's a long drive across town for only one patient, and she has to pick up her kids from day care, so we agree that she will come on Monday.
Conclusion: hospice does not pause for Jesus' death or perhaps not for death at all. ("I said I could not stop for death so he kindly stopped for me?")
Actually, they are probably underpaid and overworked, the lower working class, chaplain and all.
Hospice is so sad, from every angle.
I visited Mom later in the afternoon.

Act V: Hospice

Today, after doing the meds and squirt of purree down the cat's throat, and the subcutaneous hydration, I drove to Mom's residence to meet the intake person from Roze Room Hospice.
Signing papers and giving Mom's medical history took over an hour. By the time I got Mom set up in her recliner and left, it was noon.
I had to be back at 3: 30 pm to meet with the hospice RN. Again I gave the health history and we discussed Mom's current needs.
At one point I asked Mom what her needs were.
"Just to go home to Telluride," she said. Right on target.
The discussions took until 6 pm, partly because Jill Murphy volunteered to give Mom an enema. I had explained that Mom had not had a bowel movement for 4-5 days, and someone had suggested that being constipated could cause her not to eat.
After Jill left, I dressed Mom and took her back to the dining room, where I spent 45 minutes trying to get her to eat and drink a little. Earlier she had refused her dinner.
I cut up her chicken and put a bite in her mouth.
She chewed it, then took it out of her mouth and dipped it in her water glass.
Then she put it back in her mouth and continued chewing, with a final result for each bite of either swallowing it or spitting it out. She did the same procedure with a few mushrooms.
With her mashed potatoes, two tiny spoonfuls were all she would eat.
She did drink an entire glass of milk by straw--very slowly.
I realized I could get her to eat if I were willing to spend an hour or two on each meal, breakfast, lunch, and dinner. Or if I could get the staff at her residence to work this hard with trying to get her to eat.
Or we could just accept that she will be eating less and will be dying.
I went directly from the feeding exercise to the Maundy Thursday service at our church.
Home again, I lit a candle and sat in the dark, reflecting on Jesus death, the commandment to love others, and the end of Mom's life.
Then, of course, I ate dinner and worked on the cat.
~~~
"A new commandment I give you, that you love one another; as I have loved you, that you also love one another." John 13:34

Grandma and the Cat

Celeste, the cat, stopped eating and drinking three weeks ago. She's 16 years old, which translates to age 80 in people years.
When I took her to the vet on Feb. 27, the day before going out of town for a week, Dr. Kenneth Jones ordered a bunch of meds and said she would need 4 oz. of water squirted down her throat at least twice a day, as well as pureed cat food served up in the same manner.
"Fine," I said. I drove away and handed the cat off to Margaret at the Holiday Hotel for Cats.
I even endured the hour of conversation generally required when depositing a cat there, because I knew I was giving them a sick cat that would require extra care. Actually, I felt I was doing Margaret a favor; she loves a crisis with a cat that requires TLC.
She heroically did it all, even taking the cat to the vet during the week and starting hydration.
When I picked up Celeste a week later, however, I had to step in as intensive care nurse.
Margaret gave me detailed instructions on feeding by squirting pureed food down the throat, and I got more instructions and meds in a trip to the vet.
A week later, when I took the cat in again, determined to have her put to sleep, Dr. Jones' partner, Dr. Dell, talked me into giving her another week to start eating. "Her liver and kidneys and heart are fine," she said. "It would be a pity to put her to sleep when we might be able to turn her around."
And then on Monday of this week, March 17, when I was again determined to end this time-consuming charade of cat care, I discovered that Celeste had eaten some of her kibble on her own and drank half a small bowl of water. Oh well. The verdict was to give her another week and to continue the regimen.

So today at 7 am, before going to pick up Mom for her trip to Settimio's Salon, before putting her either in the hospital or on hospice, I had to work on the cat for half an hour.
Here's what I had to administer:

Morning
1. Antibiotic eye drops – one each eye
2. Cyproheptadine ¼ tablet for appetite
3. Lysine nutritional supplement—5 ml in dropper
4. Liquitinic vitamins 1 ml
5. Cefadrops—5 ml in dropper, refrig
6. Interferon—by dropper—in refrig.
7. Methimazole ear gel (for hyper thyroid)
8. Wet cat food mixed with water pureed and squirted down throat
9. 50 ml nutriwater (subcutaneous hydration--by syringe under skin)
10. Injection of Ipogen every other day: Mon Wed Fri Sun Tues

After doing all this to the cat, I had real scruples about just putting Mom on hospice at the first sign of not eating and drinking. Hospice generally means no IVs, no hydration except drinking by mouth.
Why does the cat get three weeks of hydration and squirt-down-the-throat feeding, along with a weekly CBC, but old folks just get put on hospice and allowed to die?
It didn't seem fair.
On the other hand, the cat doesn't have the option of hospice. It's one injection, euthanasia.
Old folks don't get the injection. They have to slowly die by organ failure, usually the kidney and the poison of their own wastes not cleaned from the blood.
With all these reflections, I was getting completely mixed up.
But after seeing Mom's hair rolled up in tight curlers and drenched with permanent wave fluid, I called Dr. Rosen.
"Hi," I said. "We want to wait a day or two on hospice. My brother feels that she should get two liters of saline solution and a CBC and electrolyte report before putting her on hospice."
"Oh, that's fine, I completely understand," replied Dr. Rosen.
"Can she have the saline solution in your office?" I asked.
"No, we don't do IV," she said.
"Should I take her to the ER to have it done?" I asked. "My brother said it would just take a few hours."
"No, in an older person you can't give it that fast. It will take 24 hours. You'll have to hospitalize her to do that because her residence doesn't allow IVs. But I'm certainly willing to admit her," she offered.
So we agreed that she would be admitted ASAP, as soon as a bed could be found.
I didn't say that nothing could happen until we finished at the beauty salon.
Then I called Bill to report that I had arranged for hospitalization.
"Good," he said, "if she needs it. If she's dehydrated. But if she is able to drink, you can probably take care of hydration without hospitalizing her. You and Emily are the ones who are there and can tell how she really is. I'm not there, so I will go along with whatever you decide."
I also talked with Emily, who freaked out when she heard that Bill had recommended hospitalization for rehydration.
"Bill just wants to save her because that's what surgeons do! It will cause her more suffering--she will be upset and disoriented by being moved to the hospital. He did this the last time by saying we had to give her a pacemaker. You and he insisted on that. I'm the youngest and no one thinks I know what I'm talking about. Bill always takes over because he's THE DOCTOR, and you are THE CARETAKER. Neither one of you is really looking at what she wants. She keeps saying, "I want to die." You are just putting her through more suffering."
"Well, Bill said he would defer to you and me. He doesn't want to force her into the hospital if she doesn't need it. What he really wants is the CBC and electrolyte results in order to know if she needs hydration."
Then the hospital called and told me that the bed was ready. Just bring her in after getting her vitals done at her residence.
All these conversations were taking place in Settimio's Salon, where Emily had joined me at noon, among the hairdryers and other clients, while Mom sat under a hairdryer.
"Well, Emily, it's not just Bill. I started having second thoughts about jumping into hospice without first doing a hydration. It's because I spend a half hour every morning and night working on my cat..." I tried to explain the Celeste factor.
Naturally, after talking to Emily for a few minutes, I was convinced that Mom didn't need hospitalization for hydration. And Emily did need to take charge of the situation and have her recommended course of action take priority. We would just take Mom back to her residence and do the best we could to get her to drink, if not eat.
In any case, we would let nature take its course. That's what our culture does with humans, though not with cats, at least not in our socioeconomic bracket. Until the cat has proven itself definitely beyond all hope.
I called the hospital and cancelled the bed I had just accepted.
I called Dr. Rosen: "You know, we're not going to hospitalize her after all. We're going to go ahead and start hospice today and try to get her to drink but not take any drastic measures if she won't drink. I'm so sorry for all this confusion."
"Oh no, I understand completely," she said. "These decisions are always very hard for families."
The hair was dry--Bembe combed it out, teased and sprayed it.
We took Mom back to Ocean View Assisted Living. I called the hospice people and made an appointment for tomorrow at 10 am to do intake papers.
I left Mom in the hands of Emily and the caregiver Connie.
I went to Color Me Mine with my daughter Ellen, 23 years old, and we each chose a ceramic piece and painted it.
I chose a bud vase and painted it with swirls of pink (my mother's favorite color) and kiwi green (my favorite color). I carefully added a bouquet of three purple pansies with yellow hearts. Pansies are one of my mother's favorite flowers--her mother grew them in front of the house on Main Street in Telluride.
Pansies, like violets, for remembrance.
Then we went to the Century City Mall where Ellen bought a pretty white blouse and I bought a BCBG soft green sweater with long front flaps to throw over the shoulder. Actually it's kind of a swaddling sweater.
I needed to treat myself, wrap myself in warm pretty cashmere in memory of this difficult day.
Then Ellen went to her AA meeting and I went to my Al-Anon meeting, where I work on taking care of myself and not being a caretaker of everyone from the cat to Ellen to my mother.
Clearly I have some more work to do.
Back home again, it was time to work on the cat.

Before Death: Beauty

A week ago I made an appointment for Mom to have a hair cut and permanent wave done at a salon near her residence.
She's been long overdue for this perm. At her birthday events, her long hair stuck out around her head like King Lear.
I put a plastic tiara on her head to hold it down.
~~~
Yesterday when we made the decision to put Mom on hospice, a sane person might have also cancelled the appointment for the perm.
Mom is weak, barely eating or drinking, but I dragged her out for that perm!
The three-hour plus event is a big ordeal: she had her hair washed, cut, put up in fifty tiny curling pins, soaked in the permanent wave fluid for twenty minutes, rinsed, soaked in a neutralizing fluid, rinsed, set in rollers. Then she had to sit under a hair dryer for half an hour or more and finally have her hair combed, teased, and sprayed.
This is not easy for a healthy person; for someone dying, it was almost torture.
"Take me home! I just want to go home!" she kept saying.
"No, it's just a while longer. You want to be beautiful," I told her and the hairdresser, Bembe, a Mongolian American and senior citizen, told her. (She talked about her own mother, 98 years old and living with Bembe, walking around, cooking a bit for herself.)
"No, I don't want to be beautiful. I just want to die. Leave me alone," Mom kept begging.
At some points she was so weak, almost faint, that I was afraid she might die in the hairdresser's chair. I regretted starting this, especially since she might only live a few more weeks.
I was still debating hospital or hospice with my brother Bill and sister Emily by phone.
The hospice and hospital were calling me.
"I'll bring her over soon," I told the hospital.
"I'll call you back soon," I told the hospice.
To neither one did I admit, "She's at the beauty salon. I can't admit her until we finish her perm, if she survives it."
Somehow we finished it.
Emily arrived, and we took her back to her residence.
Whatever comes, she will at least look good.
Now that's important, isn't it?

The Debate: Hospice or Not?

I called Emily to report that I had indeed given permission to put Mom on hospice.
She sent emails to our brothers, Bill near Tacoma, WA, and Jim near Denver.
After informing the staff at her residence, I spent the next 2-3 hours dealing with my grief.
But at 8:30 pm it occurred to me that our brothers deserved more than an email.
I called Bill to report to him and discuss the options. He hadn't read the email and was taken by surprise.
He's a general surgeon working at an Army hospital, and he wanted to know what her CBC was and her electrolyte levels.
"When were they last done?" he asked.
"I don't know... maybe last fall," I answered.
"Well, without that information we don't know if this is an acute crisis that could be turned around with hydration or whether it is a slow decline," he continued. "You should get her blood drawn to determine those things."
"The doctor did say that putting her in the hospital for hydration was the other option," I reflected. "We could still do that if you think it would be better."
"Here's why doctors order hospice," Bill said. "They're thinking, 'How do I let this patient die without making the family upset?' So they order hospice, mostly to take care of the family."
"Oh," I said.
"What kind of doctor is it? An internist?"
"She's a gerontologist," I said.
"Oh, of course she would put Mom on hospice then," Bill said. "They're just waiting for people to die. That's what they do." He was thinking of the contrast between surgeons like himself who do everything they can to save lives vs. gerontologists who accept death when it approaches, perhaps even too soon.
"If people get too dehydrated, they can't drink even if they want to," he continued. "Their throat gets flattened. But even then you can give them a Dovhoff tube down their nose into their stomach, not for food, just for water."
"She had nasal intubation to breathe when she had that allergic reaction and her throat swelled up," I said. "That's a pretty bad procedure. I don't think she'd like it."
"After it's done, people don't even notice that they have the tube in," he said. "But if they quit taking oral liquids and have no other means of hydration, people get confused and weak. First the kidneys fail--it takes 3-6 days for kidneys to fail. If they take no liquids at all for two days in a row, then they are not able to take them. Their creatinine goes up. They become comatose from the uremia."
"You mean they are poisoned by the things not cleaned out of their blood?" I asked.
"Yes--it's a terrible way to die," he said. "But if you give her two liters of saline solution by IV, you might get her eating and drinking again."
"Well, we could do that," I agreed.
"You can have it done in the doctor's office," he said.
"No, she doesn't do that in her office. But maybe I could take her to the ER and have it done there," I continued.
"Yeah, that should be just a few hours," he said. "You wouldn't even have to hospitalize her."
"Well, I'll call the doctor in the morning," I said. "But she has an appointment for a perm at 9:30 am and that will take until 12:30 0r later. We couldn't do it until after that."
"You don't have to hydrate her if you feel she can drink enough fluids on her own," Bill said. "You can go ahead and put her on hospice and just hope that she can continue to eat and drink for as long as possible."
"Yes, she did drink some milk this evening," I said. "I think she can still drink some."
So I hung up and lay awake for part of the night wondering whether to do hospice as Emily and I had agreed or to postpone it a day and first put her in the hospital for hydration.

Surprised by Hospice

I stopped by my mother's residence for a brief visit at about 2 pm, not planning to stay long because on Tuesdays she has a caregiver 2-10 pm. I took a few Easter cards and cards for upcoming birthdays for her to sign.
But the staff flagged me down with alarm: "She didn't eat any breakfast or lunch, and she's refusing liquids too. She won't drink V-8 or orange juice."
I tried to get her to drink and found it to be true. She was refusing meds and liquids.
"Okay, I'll make an appointment with her doctor," I said, thinking it would be within a day or two.
"Ask for an appetite stimulant," suggested Chandita, the meds dispenser.
"Okay, that's a good idea," I agreed.
At 3 pm I called for an appointment, saying she was refusing to eat or drink, and the receptionist offered me an appointment at 4 pm.
So much for the rest of my day, I figured.
I called my sister Emily to consult with her: "I know the doctor will urge hospice," I told her. "She suggested it a year ago and six months ago."
"Well, maybe it's time," Emily said. "I'll support you if you feel the time has come to start hospice."
Indeed, shortly after 4 pm Dr. Rosen was laying out our choices: either hospitalize her in order to do hydration and blood work as well as x-rays to determine why she's not eating--or accept her decline and make her comfortable by using the services of hospice while keeping her in her familiar surroundings.
The main indicator was that she weighed only 92 pounds--down from 102 on January 16. She had lost ten pounds in two months.
The best choice was clear: hospice.
Dr. Rosen wrote out a referral to Roze Room Hospice, saying: "End stage dementia with functional decline and weight loss."
I wheeled Mom back to her residence shocked by this sudden change.
Sadness filled me: we had just celebrated her 89th birthday a week earlier. I'd been wondering how to make her money stretch out another 2-3 years. And now she might have just 3-6 months... or less.

Both Mom & the Cat

Strange that both Mom and the cat stopped eating and drinking about the same time.
I wanted to put the cat to sleep, but the vet talked me into letting her live and doing every possible measure: subcutaneous hydration, pureed food down the throat.
I'm trying to help Mom to live as long as possible too.
After struggling with the cat to get pills down her throat, I go visit Mom.
She spits out her meds, won't eat or drink.
I get impatient with Mom because I've just fought with the cat.
I can't do both of these things much longer.
I spent two hours today on Mom, 1/1/2 hours at the vet's office, not counting the hour or more morning and evening to do all the cat's intensive care.
I'm crazy.
I guess I have a sign printed on my forehead: SUCKER.
I do whatever anyone asks, at whatever cost to myself.
I've got to stop this.

Forgetting How To Eat

I pick up the crumbs of my day after spending 9:15 am to 2:15 pm taking care of my mother.
Devastating.
Debilitating.
I lay in bed for an hour after getting home from taking her back to Ocean View Assisted Living. I needed to recharge my batteries.
~~~
The day begins with squirting food and meds down the cat's throat, an increasingly difficult struggle as the cat gets healthier and more able to fight me off. There's cat food all over one leg of my pajamas, where I hold her down, wrapped in a towel, for the feeding.
Then I do the subcutaneous hydration.
After that I can take and shower and get dressed.
I arrive at 9:15 to take Mom to church for Palm Sunday, hoping she'd had her meds so we could roll out the door.
No chance.
"I waited until you came," Chhandita says. "She won't take them for me."
So we begin to work on the meds. Mom spits the first capsule out of her mouth when Chhandita puts it in.
For me, this is a replay of the scene an hour ago with the cat. My patience is already gone so early in the morning.
"If you don't take your pills, you're not going to church," I say. "You can just go back to your chair and sit in this room."
"I want to go to church," she whimpers.
"Then take your meds!" I yell at her. "We're not going anywhere unless you can swallow those pills."
She then swallows each down, followed by juice. Twenty minutes pass before we start toward the elevator.
In the car, Mom is crying and trying to defend herself against my anger.
Usually I write down the things she says, but this time I just drive on, trying to ignore her incoherent babbling.
"I just want to go to heaven," she repeats. "I'll be fine there. They know I'm a good girl."
~~~
She mumbles and hums during church, inappropriately. Time to stop taking her to church, I think to myself, if she's going to bother other people.
~~~
She eats very little afterward at my house, though I serve her one of her favorite foods, a waffle. It falls out of her mouth. She has forgotten how to eat. Somehow she gets down a few bites, half a banana, some grapes.
"Time to go back," I say finally.
"Oh, so you want to get rid of me," she says.
It's an automatic response, I tell myself.
Anytime I say "Time to go back," she will say "So you're getting rid of me."
Don't take it personally.
It's so hard to spend hours with her and then be accused of not caring when I finally take her back. She hooks me again and again, raising the ever-present guilt and anger.
I put her in the car and we drive back.
After I help her out of the car and into the wheelchair, she suddenly vomits up everything she had eaten for lunch. All over her nice clothes. I scoop it up, clean her up, wearily push her back to her room. There I change her shirt, clean her face, give her gum to chew.
"I'm going now," I say finally.
"You're getting rid of me."
When I get home, I collapse in tears for an hour.

"Is That Why You're Getting Rid of Me?"

I was planning only a short visit today because I had put so many hours into Mom and the P.E.O. meeting yesterday.

I went over about 4 pm, hoping to walk her to dinner and leave.

"Hi, Mom, how are you?"

"Oh Anne, thank goodness you came. Now can we go to your house?"

"Well, if you want to. We were there yesterday for the P.E.O. meeting, remember?"

"Yes, that was very nice. Can we go now?"

So I took her to my house.

She didn't say "I want to go back" shortly after arriving, as she usually does.

Instead she sat there, eating a bite or two of what I placed in front of her.

I brought the dog in. I put the dog out.

I turned on the tv. I turned it off.

Finally I said, "It's time to go now. I need to work on the taxes. "

"Is that why you're getting rid of me?" she asked.

Yes, I thought, I need do something besides take care of you and the cat, which requires a half hour morning and evening of forced feeding, meds, and subcutaneous hydration.

I said, "I finished your taxes and sent them to the tax lady, but now I need to do mine."

But her words hit me like a hurricane: You don't love me. I am a chore. You just want to get rid of me.

Never mind that I just spent eight hours yesterday on you and the P.E.O. meeting.

Today you want to stay at my house all evening and not go back.

It's never enough.

When I got back from taking her to her residence, I cried.

Hosting the P.E.O. Meeting

I got up early, vacuumed the house, set out a table cloth and St. Patrick's Day plates, went to buy a cake for the P.E.O. meeting at my house, and then picked up Mom from her residence.
When I got back to the house, several ladies were parked out in front waiting.
I let them in, brought Mom into the house in her wheelchair, and began hosting the P.E.O. sisters.
After a few initial greetings, Mom said, "I want to go back now."
"No, we're going to have the P.E.O. meeting," I said. "I can't take you back. Here are some strawberries and other fruit."
I plied her with food; we sang Happy Birthday and she blew out one candle.
But the food fell out of her mouth onto her blouse. She was hunched over and not swallowing after chewing. It just fell out.
The meeting began. I couldn't attend to her and the ladies at once.
One of the ladies lost the keys to her car, so we spent most of the morning searching the street, the car, the lawns and sidewalks and the house for her keys.
It was a disaster.
Finally it was over and I took Mom back to Ocean View Assisted Living.
Never again, I said to myself.
She's not good enough to sit through a meeting like that. It's pointless.
I am trying to push her toward life, but she is declining.
I need to accept that reality and stop all this effort.

The Day After

When I stopped by to check on Mom today, she was in complete sleep mode, the typical sleepy day that occurs after a heavy day of social interaction.
She did not open her eyes when I greeted her, barely spoke to me.
I learned that Emily and her son Duncan Andrew had visited earlier in the day.
Too bad that he had seen her in this condition instead of at her alert, communicative best as she was yesterday. He returns to the Naval Academy in Anapolis and probably won't see his grandmother again before she dies.
"She's like a skeleton," he told Emily.
Mom can look very bad when she's out of it.

Happy Birthday: 89 Years

Not Getting Any Attention

Again I didn't get to Ocean View to visit Mom until about 6:30 pm. I've been busy preparing to leave for a week's trip to the East coast. Today I took the cat to the vet and the Holiday Hotel for cats. (The cat had suddenly stopped eating and was diagnosed with hyperthyroid disease, so I was grateful that Margaret at the hotel even took her.)
When I arrived to visit Mom, she was sitting in her recliner in her nightgown, covered with blankets, her eyes closed. I always kneel on the floor and put my face in front of hers to talk with her.
"Hi, Mom! How are you?" I asked cheerily.
"Poorly!" she said, opening her eyes a little.
"Poorly? Why? What's been happening?"
"I'm not getting any attention," she snapped back, accusing me.
"Oh, I see. But Connie was here today. She took you downstairs to listen to the music," I argued.
"Yes, but I just want to see you."
"And you got a bag of popcorn to eat while you were there," I continued, having already had brief report from Connie.
"Yes."
"Well, I don't think you are doing so poorly," I said. "You look good to me."
After a bit more chat, I broke the news to her:
"I'm going to visit Ellen and check on her," I said. "In Connecticut, where she's in college again."
"So you're going to leave me," she commented.
"Yes, I will be gone for a week. But Connie and the others here will take good care of you," I continued.
I fussed over her, gave her some grapes, put some sugarless candy from the cupboard into her candy jar.
I wrote a check for a cash advance to Connie, so she can pay her property tax and not lose the home she bought a year ago with her husband, now unemployed. I'm paying her for the next 15 weeks. We did this on about December 1 too. She offered to visit Mom more often, because she needs the money, but I said no because Mom is running out of money. Her monthly income doesn't cover the cost of living at Sunrise. She needs an extra $2-3,000 per month from the money she has from selling her home in Boulder, but that amount is running low now.
I left typed notes with phone numbers and contact information to reach my sister and brothers on the door and in the offices of the Reminiscence Neighborhood and of the medical supervisor.
Then I left.
I will try to visit her tomorrow before leaving for the airport, but realisitically, I don't expect that to happen.

Can I Live With You?

I stopped to visit Mom today about 6 pm, after taking the dog and cat to the vet, after teaching in the morning and staying on campus until 3 pm so two students could make up the midterm they missed last week.

Connie, the private caregiver, was with Mom, as she is on Tuesdays 2-10 pm and Wednesdays 5pm - 1 am. I greeted them both. Mom was sitting in her recliner watching the musical Annie on her television.

"How are you?" I began. "Did you have your dinner tonight?"

"Yes, but I'd like to come up to your house for supper," Mom said. "Can I do that? Can I take Connie and live with you? I don't like being here. I'd rather be with you."

Wham--all these demands, when I was doing a very brief visit and preparing to leave for a week to travel to the East coast.

"Well, Connie can't live at my house. She has a husband and two kids. She doesn't want to leave them," I began.

"But I could live with you," she continued.

"Well, I don't think that would work very well. I'd have to be there all the time to take care of you and cook three nice meals a day, like the ones they give you here. I couldn't take you to the bathroom all day and do your bath every night. I have to teach my classes," I tried to explain.

"Oh! Well, I guess you can't. Then I want to go to the Chapter House where my mother lived," she said.

"That's in Colorado, a long way from me. I'd have to move to Colorado, and I can't do that."

She pretty much accepted these realities, once reminded of them.

But her initial joy over her new plan--moving in with me--was so touching. I felt bad that actually I am planning to be away for a week... she will be abandoned, from her point of view.

In Search of Song

I succeeded in another brief visit today.
Hearing singing on the first floor at 4 pm, I rushed her down to hear it, but the 3 pm weekly program had just ended.
We got popcorn and the local newspaper and returned to her floor.
Then I helped her to walk 100 feet with her walker from her room to the dining area. She can still walk pretty well, but I stand with my hand on her back to make sure she doesn't lose her balance and fall backward. I pull the wheelchair behind me because sometimes she walks fifty feet or less and has to sit down.
For several months I wasn't making her walk--she walked only once a week or less with Connie. But now I am trying to make sure she continues to walk, so she won't forget how and so her turned in feet will straighten out a little.
I left by 5 pm, saying as I always do, "I'll see you tomorrow at 2 pm."
I used to say the actual time I expect to arrive--maybe 4 pm or 11 am--but now I always say "2 pm" and she feels secure in this.

Popcorn

One of the surviving pleasures in Mom's life is a bag of popcorn.
Her residence has a popcorn machine in the lobby, and whenever she passes it, she demands some, though she often can't remember the word.
"I want some of that candy," she will say.
For a couple of years, she wasn't allowed to eat popcorn because her swallowing has become less competent; her potential for choking is great. But because she loves the popcorn so much, I gave in and started letting her have it again.
I think she'd rather die by asphyxiation from popcorn than never have it.
I came to visit her briefly even though her private caregiver, Connie, came today for 8 hrs.
I wheeled her down to the first floor, got her some popcorn, and wheeled her right back to her own floor, where I handed her into the care of Connie.
She was content with that, though at first as always she had demanded to be taken to my house.
I succeeded with my plan.

Knocking Things Over

I arrived at Mom's residence at 4:30 pm, determined to keep my cool and spend no more than an hour of my day. I planned to take her to my house for some leftover spaghetti dinner and return her.
"How's everything?" I asked a caregiver, cheerily.
"Well, okay... she did knock over her V-8," Claudia began.
"At the dinner table? On purpose?" I asked.
"Yes, we had to change the tablecloth, and then she poured out her water on the table too."
"Oh dear!" I said, thanking Claudia for her work in cleaning up the mess.
Another big protest by Mom, a display of her feelings of anger over having to be at this residence and not getting enough attention. It was a hook she has used before; on other days it has caused me to feel upset and embarrassed.
But this time it didn't bother me. It even seemed funny--and I knew it was only because I had arrived so determined not to be pulled into her drama that I still felt calm.
Options: scold her and tell her that I would not take her to my house today because she did that? Or ignore it and take her to my house as planned?
I decided that scolding and expecting her to remember or change her behavior would be craziness on my part.
I took her to my house and gave her the spaghetti dinner (from the freezer, the spaghetti with sauce from her favorite restaurant, The Blue Parrot Cafe in Louisville, near Boulder).
She enjoyed it, and I took her back.
All within the space of an hour, as planned.

Who's the Crazy One?

Let's see here: Mom has Lewy Body Dementia and lives on the secure floor of an assisted living facility, along with Alzheimer's patients and others with vascular dementia or similar types of impairment.
This is not a fun place to live, not a good stage of life to be in--almost 89 years old, approaching death--but I try to make her happy.
I think that my daily visits and the excursions on which I take her should make her content with her situation, along with the medications. She takes Zoloft for depression and Seroquel, an anti-anxiety med.
She's depressed and irritable, but I keep trying to fix everything for her.
I think, "If I do x, y, and z, she will be content and enjoy her remaining days."
Duh-- it's impossible. She's not going to be happy with her limited, repetitive daily cycle.
She's the sane one, depressed about it all. She's going to be unhappy and tell me about it.
I'm in denial, losing my sanity over trying to interact with her, take her out, cheer her up.
I need to accept reality and stop trying.
For my own sanity, I need to stay away from her or at least limit my time with her to one hour per day. These 5-6 hour excursions are killers. She says things that hook me into feeling bad for her, trying harder to spend time with her and take care of her.
But no matter what I do, she is still going to be gloomy about going back to Ocean View Assisted Living and being just another of the thirty crazy old people on her floor.
What she would really like is for me to take her into my home and spend 24 hours per day taking care of her: meals, bathroom trips, bathing, conversation, excursions, medical visits.
I can't do that, and even the amount of time I'm giving her right now is debilitating to my emotional state and my energy to carry out the other work of my life.
I don't know how people do it who are caring for an LBD parent or spouse in their own home, with or without help.
I do know that all of them sooner or later give up and place their family member in a care facility.

Comments on this subject by Melody Beattie in The Language of Letting Go (The Hazelden Foundation, 1990):
We can learn not to get hooked into unhealthy, self-defeating behaviors in relationships--behaviors such as caretaking, controlling, discounting ourselves, and believing lies.
We can learn to watch for and identify hooks, and choose not to allow ourselves to be hooked.
Often, people do things consciously or without thinking that pull us into a series of our self-defeating behaviors we call codependency. More often than not, these hooks can be almost deliberate, and the results predictable.

"You Ditched Me"

This morning I tip-toed into the Reminiscence Neighborhood, nervous about what I might find. Would it be like Friday when Mom hadn't had breakfast and was refusing her meds? Or would I be able to take her out to church with a minimum of fuss?
I found her settled into her recliner in her room. Good! She was done with breakfast, though she looked a bit agitated. Someone had applied lipstick all around her mouth in a sloppy way--I would have to fix that before we left.
"Hi, Mom, it's Anne. Are you ready for church?" I asked, pushing the recliner's control to make her sit up and to transfer her to the wheelchair.
"You ditched me yesterday!" she hissed. "I was going to watch the news with you, how John is winning, but you never came." [Note: she still thinks he's running for President.]
"What?"
"I cried all night. Oh well, it doesn't matter now."
I was stunned and felt tears come to my eyes. Not only did she not remember that I had come yesterday, but she thought I had "ditched" her.
"Don't you remember that we went and got a Nestle's Crunch?" I reminded her. "I came to see you yesterday."
"Oh yes, I remember. But you left without saying goodbye. You ditched me."
I didn't even argue it, just moved her into the wheelchair.
"My back is bare!" she cried, so I adjusted her blouse and sweater to make sure her waist was still covered after the transfer.
"Here's your purse," I said numbly.
"I wish you'd let me have your purse. You have nicer purses."
"Me? You don't like my canvas bags."
"You went away and your never came back. I cried all night--I did!"
I didn't answer. All that time I had given her yesterday, apparently to naught.
"I forgive you now," she continued. "I thought we could all watch tv together, but I just saw it myself, down in the dungeon."
Okay, I told myself, that's hallucination, thinking some place here is a dungeon.
"You said you'd come back, that we could look at it together, how John was winning, but you never did. I cried myself to sleep."
By now we had completed the trip by two elevators to the basement parking garage, and I was lifting her into the car.
We drove silently and without much traffic to San Marino Community Church where a friend of mine, Karen Berns, was preaching today. I turned the classical music up high so there'd be something to listen to. I didn't feel like talking, and I needed to distract her from this track she was on.
We arrived early for the service, and Mom was cooperative during it, nodding her head to the left and right with the rhythm of the hymns being sung.
After the service Karen and her husband invited us to go out to lunch, but I declined. Mom is not patient with sitting in a restaurant; I wouldn't be able to enjoy it.
Instead I drove her to the Huntington Library, just a few blocks away, thinking it would brighten her day as well as mine to wheel through the gardens, maybe take a peek at the Ellesmere Chaucer manuscript.
The roses weren't blooming, but I pushed her wheelchair through groves of huge camellia bushes and trees.
"I want one of them," she said, so I picked up fallen blossoms as we walked; she had a lap full of various kinds: luscious magenta, striped pink and white, single-petal red with huge stamens.
We spent maybe an hour there until she demanded to go home and we started back. I got her a butter pecan ice cream cone and myself mint chocolate chip.
On the way back, traffic stopped: I forgot that people would be driving toward the beach on this holiday weekend. Though I left the freeway to take city streets, our driving time was still doubled; as we neared her residence it was almost 4 pm.
"Now let's go to your house," she said, unaware that her six hours with me today was the limit.
I sat there with my hands on the steering wheel unsure how to explain to her that she was returning to Ocean View Assisted Living.
"No, the sun is going down," I finally said. "It's time to go back to Ocean View."
She started to argue with me, but I put my hands over my ears as I drove. It was just too painful to listen to more demands. We drove into the parking garage.
"My back is bare," she screeched as I eased her from the front carseat into her wheelchair, but actually it wasn't bare. I had carefully pulled the blouse and sweater down before the movement. "I hate you!" I thought to myself. "You say this even when your back is covered and warm. Your demands never stop."
"I love you," she said to me as if she had read my negative thoughts. "Thank you for everything you do."
I didn't answer. Somehow the correct reply just would not come out of my mouth.
I arrived home at 4:15 pm and, just like Friday, required more than an hour of rest and reflection before feeling able to start any other task.
Spending six hours with her exhausts me.
~~~
I made three decisions:
1) I will not take her out of Santa Irena again. Not to Women-Church in Claremont next week, not anywhere.
2) She will stay on a narrow track: her residence, church, my house--well, maybe 2-3 more P.E.O. meetings before I pull that plug too. That's all she really wants: to be at my house or her residence or church. No use taking her to the Huntington when what she really wanted was to sit in my kitchen.
3) I will go on a diet for time spent with her, limiting it to one hour per day. I just can't handle these longer days.

Traffic Jam

Living in Los Angeles requires constant vigilance of traffic patterns. No hour of the day can be planned without taking traffic into account, unless one stays within a few blocks of home or travels on foot.
I was planning to attend a meeting of EEWC (see link: eewc.com) in Claremont starting at 4 pm, a drive that takes one hour on the 10 freeway on a Sunday morning or afternoon but two hours or more on a weekday afternoon if one leaves at 2 or 3 pm. At that time all the traffic is flowing east.
I planned on leaving at 2 pm, just in case, and visiting Mom from 1 pm to 2 pm before leaving. However, I didn't manage my morning activities well enough to get to Mom's residence by 1 pm.
At 2 pm I faced a choice: skip visiting Mom and make sure to be on time for the meeting at 4 pm, or visit Mom and trust that traffic on this Saturday afternoon would be about the same as on a Sunday: light.
Reason to skip the visit to Mom: yesterday I'd put six hours into her, so I could take today off.
Reason not to skip Mom: yesterday I'd been impatient with her about her refusal to take her meds, and she had cried. To make amends, I should visit her.
Guess which one I did.
When arrived, planning to spend just half an hour and leave at 2:45 pm, she was hysterical: "Thank goodness you came! I called you and told you I want to go to your house."
"We can go to my house, but we will go out and get some ice cream," I answered.
Then my favorite caregiver, Marnie, often in charge of the whole floor, told me she had been robbed at gunpoint two days earlier. I needed to listen to her story in all its frightening detail rather than rush out saying, "Later!"
Finally I took Mom out in the wheelchair to get a Nestle's Crunch and a banana. Then we returned and I left her in the dining area eating the treat.
"Bye--I'll see you tomorrow morning so we can go to church," I told her.
By now it was 3 pm, and I settled into the minivan for a pleasant hour-long drive with Prairie Home Companion on the radio and a Snapple iced tea to drink, travelling 70 mph. I was glad I had taken time for the visit.
But five minutes later traffic halted: there was an accident on the 10 freeway near the 5.
I decided to maneuver around it, taking the 110 to the 101 to the 10. Traffic flowed well for ten minutes but then it slowed to 30 mph and stayed there.
Frantically I switched to all the traffic reporting channels but no accident was happening ahead of me this time. I had to conclude the situation was normal--SNAFU.
For the next hour I maneuvered from the 10 to the 605 to the 210, hoping there'd be fewer cars and a speed of 60-70 mph, but it took me an hour and a half to get only as far as Azusa, still fifteen minutes away from Claremont.
I fumed and fretted: was this normal for a Saturday, as it is for weekdays? Or was the heavy traffic caused by the three-day weekend--people driving to Las Vegas or to Big Bear for skiing?
I was 45 minutes late to the meeting. An hour trip became an hour and three-quarters.
Now I really regretted having taken time to visit Mom. Once again, I had taken care of her by throwing my own commitments off.
But at least she knew I cared: I had not skipped a day.

A Perfect Storm

I knew one thing this morning: I didn't want to give up five hours to take Mom to a P.E.O. meeting.
But that's what I do every two weeks. I started taking Mom two and a half years ago, then decided to join in order to keep taking her. It's her one outing besides going to church and going to my house, a vestige of her former life, seeing these P.E.O. sisters.
I'm a member, and she is, and I would take her to the 10 am meeting.
I delayed leaving the house, first typing up the slate of officers nominated for next year. Two meetings ago when they asked for volunteers for the nominating committee, Mom piped up, "I'll do it!" Everyone laughed, but then they said she was volunteering me. I wasn't clever enough to slip out of this trap.
~~~~~
I didn't arrive to Mom's floor until 9:40 am, hoping just to get her purse and wheel her to the car.
No such luck. She was still sitting at the breakfast table in front of a fresh plate of eggs and bacon, her two cups of orange juice and tomato juice untouched.
What I didn't know:
1) The floor was short-staffed today. The lead caregiver, Karen, was late going down to get the food cart from the kitchen because she had to wake and dress a few more residents than usual.
2) Mom had refused to get up at 8 am when Elisa, her caregiver, spoke to her. She had cried and said she didn't want to get up. Elisa didn't get her up until 9 am, then dressed her and took her to breakfast.
3) Mom had eaten her oatmeal but refused to take her meds. Ilse, the medicine person, had decided to try later. Karen had held off on giving Mom her eggs and bacon, waiting until she cooperated with her meds.
As various people were reporting these facts, I decided to take Mom and leave; at least she had had her oatmeal.
"I'm going to get your purse," I said.
But when I got back with the purse and the lighter wheelchair for car trips, Ilse said, "She's still refusing her meds." As if I were supposed to care.
I needed to leave, meds or no meds, but in the same way George Orwell found himself shooting an elephant, I found myself going along with the caregivers who expected me to enforce Mom having her morning meds.
"Mom, take your meds! Good! Now take the next ones," I urged.
"Don't spit them out," said Ilse.
"Mom! Okay, good, now let's move into this other wheelchair."
To Karen, I said, "Why isn't she ready to leave at 9:40? I asked J.R. to put in her chart for today 'No bus rides! She will be leaving at 9:30.'"
"I didn't see any note on her," Karen said.
When I picked Mom up to transfer her to the portable wheelchair, the entire black chiffon long skirt with liner she was wearing fell to her ankles.
"Is this skirt too big for her?" I asked.
"Yes," said Elisa. I'd set it out yesterday with a red sweater with inserted collar and cuffs to be worn to this meeting, but I hadn't thought about how loose the waist might be.
"Oh, I'm sorry," I said, wheeling her back to her room to get a safety pin. Why hadn't Elisa pinned it? Mom's clothes are my responsibility, though. She was 130 pounds three years ago; now she's down to 100, and she was probably 150 when she first wore this outfit. I'd bought some velcro and thread two months ago, intending to tighten the waists of all her skirts, but I'd been postponing this task.
By this time my patience was gone.
"You have to take your meds!" I yelled at her, pinning up the skirt. "You can't refuse them. We'll be late for the P.E.O. meeting."
"Don't be mean to me," she cried.
In silence I pushed her out to the elevator and to the car.
"Why are you mad at me?" she asked.
"Because you wouldn't take your meds," I answered.
"I did take them! They're lying," she cried. "They always say 'that old bag' and won't give me my meds."
~~~~~
When we arrived at the meeting, I put her into the wheelchair and opened and laid out the forty-pound ramp to get her up the entry steps.
She was still whimpering, and I thought she might not recover, but she still had her wits about her (well, some of them).
"Hi Evelyn, how are you?" asked Alva Mae.
"Fine, how are you?" she replied.
After devouring the fruit cup, the slice of coffee cake, the sausage, she fell asleep in the chair, quiet for most of the meeting until the Lord's Prayer.
I put the ramp back onto the steps, wheeled her out to the car, worked to get her into the car, then folded up the ramp and the wheelchair.
As we drove off, she said, "I'd like a Pepsi." We picked up a cheeseburger, milkshake, fries, and Pepsi from McDonalds.
I took her back to her floor, first toileting her. Off with the black skirt, on with some tan velour slacks. Off with the red Sas shoes, on with the black ankle-height ones for walking.
I took her back to the dining room and set her up with lunch.
Back in her room, I ransacked her closet for all the possibly loose-fitting skirts, tossing them in a heap, vowing to take time at home to tighten them with velcro.
I took the four pairs of dress shoes off the rack and hid them in a sack at the back of her closet.
I wrote a note to Laquetta, Queen of the Reminiscence Neighborhood, to have Mom's Individual Service Plan updated with these stipulations:
1) Get her up by 8 am--esp. on Sundays and Fridays when she is going out.
2) Make sure she is served breakfast by 8:30 am; otherwise she will have no appetite for lunch at 12 noon.
3) Use only the ankle-high black shoes.
4) Sundays she has to be ready to leave by 9:15 am. Some Fridays she has to be ready to leave by 9:30 am.
I left the note on LaQuetta's desk and fled to the car, feeling angry and upset about the whole morning.
~~~~~
At home by 2:15, I had planned to get to work at the computer immediately.
But instead I put away the forty-pound ramp in the garage, fed the dogs, and collapsed in frustration on my bed, unable to get up energy to do anything.

Old Folks Say the Darndest Things

I had a big day planned for Mom: church as usual at 9:30 am, then a visit to my house where I planned to vacuum my floors and make waffles with strawberries and whipped cream on them. My sister-in-law Lee was planning to drive here from Malibu after church there with her five-year-old twin daughters, and I knew that Mom enjoys seeing the twins.

After church we wheeled to a market, bought the strawberries and whipped cream, and rushed home, where I vacuumed as she sat at the table eating grapes. Having been awake since 8 am or earlier, she tired of sitting in her wheel chair and fell asleep at the table, slouched in her chair. I kept cleaning and was just ready to start the waffles when she woke and said, "When are the twins coming?"

"I thought they'd be here by one o'clock, but they aren't here yet," I answered. "Are you tired of waiting?"

"Yes, I'm tired. I want to sit in my big chair," she said. "Just take me home. I want to go back."

I paused in my busy-ness and considered whether to convince her to stay so she could enjoy the fun or accept her desire just to take a nap. How soon would they come? Could I set her up to sleep in a chair in the living room and wait for them? Then I got a text message from John saying Lee wouldn't arrive until after 2 pm.

"Okay, I can take you back if you want to go," I concluded with disappointment. All my lovely plans down the drain—like a baby, she needed her nap on schedule and couldn't hang in there for another hour. Because I had given to Good Will the recliner I used to keep for her at our house, there was no convenient place for her to sleep. It would be an effort to get her onto a bed and then get her back up an hour later.

On the way home, she said, "I saw Reynold today. He's here… how about that!"

"Yes, how about that!" I answered. (He died in 2004.)

Back at her residence, I took her to the bathroom, then set her up in her recliner with a cheeseburger and fries and a milkshake because I hadn't really given her any lunch yet.

"Reynold came to see his little sister," she continued, and I reflected on the possibility that he might indeed have visited her.

After eating half the burger and fries, she started choking and coughed some of it back up.

"I'm choking to death!" she said. "I'm choking to death!"

"No, you're not dying," I countered. "You're okay. You just choked."

"I'm choking to death! It's awful to die."

"No, you're okay," I insisted. "You don't want the rest of this? Here, I'll extend your recliner. You can just take a little nap."

"Just take a nap to die," she repeated in a sing-song voice. "Just take a nap to die."

"No, you're not dying!"

"I never died before. It must be fun, don't you think?"

"Yes, maybe," I said, tucking a blanket around her and winding the back of a musical doll to sit on her lap.

"You are my sunshine, my only sunshine," the doll's bright notes began.

Mom started singing the song with it: "You are my sunshine, my only sunshine. You make me happy when skies are blue…."

Off the Hook

Mom received the following letter from the US District Court in Denver today:



Evelyn Frances Eggebroten



Dear Prospective Juror:



Please be advised that a Judge of the US District Court has given the following direction with regard to your service as a juror:



After careful review and consideration it has been determined that you are EXCUSED, EXEMPT, or DISQUALIFIED from jury service. You need not report for jury duty.



If you have any questions, you can contact...



Very truly yours,



Gregory C. Langham, Clerk



by Joann Garcia, Jury Clerk

JURY DUTY!

The US District Court, Denver Jury Division, mailed Mom a summons to jury duty on Dec. 27.

Then on Jan. 15 they sent a threatening note (fine or imprisonment) because they did not get an answer back within ten days.

So now I have filled out the response form, and I will try to find some kind of proof of her mental disability to enclose with it.

Never mind that she is almost 89 and lives in California, which they might have figured out by mailing it to her address here.

Penalty: Failure to respond and/or non-appearance may lead the court to issue an order to the US Marshal to have you brought before a judge for an explanation as to your non-response and/or non-appearance. Any person who FAILS TO SHOW GOOD CAUSE for non-compliance with a summons may be fined and/or imprisoned.

Imagine the scene: Mom hauled into a Denver court to explain to the judge why she didn't report for jury duty.

I bet she'd tell the judge a pretty good story.

She'd love the attention--and especially the trip to Colorado for the first time since she was brought here in November 2003.