Wednesday, March 26, 2008

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.

Tuesday, March 25, 2008

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.

Monday, March 24, 2008

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.

Sunday, March 23, 2008

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.

Saturday, March 22, 2008

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?"
"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.

Friday, March 21, 2008

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.

Thursday, March 20, 2008

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

Wednesday, March 19, 2008

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:

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?

Tuesday, March 18, 2008

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.

Monday, March 17, 2008

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.

Sunday, March 16, 2008

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.
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.

Saturday, March 15, 2008

"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.

Friday, March 14, 2008

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.

Thursday, March 13, 2008

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.