Wednesday, May 31, 2006

Who Lost the Uterus?

Because Mom had an agitated day yesterday, I decide I need to visit her today, for the first time since my surgery a week ago.
I arrange for Marie to drop me off in the mid-afternoon because I'm not yet allowed to drive. I walk up the steps and around to the elevator, arrive on her floor, and walk all the way around to her room--my exercise for the day.
When I arrive, she's in her recliner, sound asleep.
"Hi, Mom. How are you? Open your eyes!"
I can't rouse her. I take her hands in mine, pat her cheeks. No reaction.
It's as if her computer won't boot up. My big effort to come see her is all for nothing. I should have remembered that after an agitated day, she almost always has a sleepy day. These variations are a main symptom of Lewy Body Dementia.
Meselech, one of the caregivers at Ocean View, comes into the room.
"Hi--I was just going to take her to the bathroom," she says. "But I see she's still sleeping, and you're here. I'll take her later."
"She's having a sleepy day," I reflect.
"Yes, she has been sleeping all afternoon, and in the morning too, they said." Meselech is the caregiver in charge of Mom and several other residents for the 2 -10 pm shift. An immigrant from Ethiopia, she is kind and has a great sense of humor.
"Yesterday she was crying," Meselech tells me. "She was saying, 'My daughter! She's going to die.'"
"Yes, Connie told me."
"She was saying, 'She has nothing to eat! I have to take her some fruit.'
"I said, 'She has a husband and daughter. They will give her food.'
"But she said, 'No, her husband doesn't give her healthy food.'"
"Oh Meselech, that's why she was so agitated! When I was talking with her on the phone on Sunday, she asked if John was cooking for me, and I said, 'Not really. Last night he ordered a pizza, but he didn't make a salad or serve anything healthy like fruit.' So that's where she got the idea that she needed to bring me fruit!"
Turning to Mom, I try again. "Mom, it's Anne! I came to visit you! Wake up!" I shout.
"I had my uterus out," Mom mumbles, her eyes still closed.
"No, I did! I'm the one who had a uterus out," I say, laughing with Meselech.
"Yes? Oh..." she says, groggy.
"Open your eyes."
"I will when I get around to it."
"Talk to me."
"What do you want me to say?"
"Anything. Do you need to go to the bathroom?" I suggest. "Meselech, could you take her? Maybe it will wake her up."
Meselech helps her out of the recliner, into the wheelchair, and into the bathroom.
I sit down and lie back in Mom's recliner to rest.
Soon I hear Mom singing:
I love you truly, truly dear.
Life with its sorrows,
Life with its tear.
Then she is singing "Happy Birthday to you..."
Why? Did Meselech ask her to sing? I don't know, but at least she's waking up.
"Did you have fun in your surgery?" Mom asks me when they return.
"Yes," I say. Meselech is pointing out to me that Mom has a bump on the top of her head. She complains when Meselech touches it. How did she get it? Meselech and I are puzzled.
"You're sitting in my chair," Mom says, not pleased.
"Oh, I'm sorry," I say. "But it's almost dinner time. No need for you to move to this chair."
"She missed you so much last week," Meselech tells me. "She always say, 'I have to go to Anne's house.'"
"You like to go to my house, don't you?" I say to Mom.
"I used to. But now you've gotten so sassy, I don't care about it." She's angry with me, perhaps because I am sitting in her chair. I change the subject.
"Your hair still looks good. That was nice of Elisa to come to work as usual on Veterans Day."
"I'm a veteran. I deserve to be one too. I'm a four-year veteran."
"Yes, you are. Well, it's time to go to dinner now. I'm going to leave. You should walk to dinner, get some exercise. Meselech, can you help her walk to dinner?"
"Of course," she says, going to get the walker.
"Which one of us had a uterus out?" Mom asks, out of the blue.
"I did. I had a hysterectomy last week."
"Oh, that's right."
Meselech pulls Mom to her feet, and after a couple of steps she attains a precarious balance.
We set off down the hall for the dining room.

Tuesday, May 30, 2006

Mom to the Rescue!

Mom has decided I have cancer. She's trying to commandeer a taxi to bring me fruit. The first phone call comes about 5 pm.
"Anne, this is Connie. Could you talk to your mother? She's worried and crying."
"What's wrong?"
"She says, 'My daughter has cancer in the uterus. I have to get a cab to take food to her.' She's been doing this all afternoon, telling this to everyone.
"I tell her 'No, Anne is fine. She had surgery, but she's fine now. Why are you crying?'
"But still she is saying, 'I want to go to Anne. I want to take her some fruit.'
"She keeps crying with real tears and saying, 'Connie, let's go take a cab.'
"I tell her 'I'm still doing the laundry--we can't go now.'
" 'I'll go by myself,' she says. 'Bring me to the first floor--I'll call a cab.'
"I tell her, 'Later we will call Anne, after dinner.' So could you talk to her? Just tell her she can't take a taxi."
"Okay," I promise.
"Mom, how are you today?" I begin.
"I'm all right, but come November I'm going to move to that place."
"What place?"
"Okay... you like the P.E.O. sisters, don't you?"
"Yes, and I'm going to do it, no matter what you say."
"Okay... well, did you have a good dinner?"
"Yes, we had afro-daisics. It's when you eat the stuff off the leaves."
"Right... okay."
"Well, I'm going to get some fruit. I'll see you soon. Goodbye, dear."
She hangs up, and I wonder why she hasn't raised the subject of taking a taxi. I'm not going to bring it up if she doesn't.
The phone rings again.
"Anne, could you talk to your Mom again? She thinks she is coming over to see you right now."
"Oh, I'm sorry I didn't make that clear to her, that she can't come.... Hi, Mom."
"This is your mother. I'm going to get a cab and come see you."
"That wouldn't be a good idea, Mom."
"They don't want to take me downstairs, but I'm going to do it anyway."
"Mom, how would you get in and out of the cab?"
Silence on the other end of the phone line. She is thinking this one over.
I'm silent too, giving her time to remember that she can't walk, can't get in and out of her wheelchair without help.
"Mom, I'll send Marie over. She can pick up the fruit and bring it to me."
"Well, that would be okay. You could send Marie over?"
"But I can't ever find that Kuhner's. And I'm worried about Marie--she's marrying an Israelite."
"Mom, she's not marrying anybody. She's just 19. She's dating a guy who's Iranian and Jewish, but she's not getting married any time soon."
"She's not? Well, okay."
The storm subsides.
Marie takes time out of her evening social schedule to stop by Grandma's, but by that time Grandma is calmed down, almost asleep.

Monday, May 29, 2006

Memorial Day

Thank goodness Mom's private caregiver came to work today, though it's a holiday. I'm still lying in bed most of the day after my surgery last Tuesday.
I tried repeatedly to call Mom earlier in the day, but no one was answering the phones at Ocean View Assisted Living. Probably they were short-staffed; the few that were there could not get to the phone.
At 5 pm Connie arrived to manage Mom until 10 pm, so I was able to call her.
"Hi, Mom. How are you doing?" I began.
"Terrible... why are things terrible?"
"Because I get so scared... Because my bones are broken and I don't think they'll ever work again."
"Mom, your bones are not broken. You can walk with your walker. Did you get your hair done today?"
"Yes, but she almost burns me. I just have to yell and tell her to stop. She always says 'Move your tush!' She uses that French word for your bottom."
"That's nice that Elisa came in today. It's Memorial Day... she could have stayed home."
"I guess I'm going to be stuck forever," Mom continued. "I'd like to go somewhere every day."
"Where would you like to go?"
"I'd like to go back to where I was, if they'd take me. I just can't go on like this forever."

She is bored and lonely. She has not left the building for eleven days, except for going around the block to Rite-Aid for an ice cream cone four days ago.
If she had Alzheimer's, this would be okay. But with Lewy Body Dementia, she recalls her recent past enough to be frustrated with not going anywhere.

Saturday, May 27, 2006

Hallucinations Again

Mom calls me in the evening--that is, her weekend caregiver Racquel calls for her.
"Did you have a nice visit with Emily?" I ask.
"No, it was worse than ever," she says. "I love her and she's a sweet girl, but she tries to tell me what to do."
"Just like I do," I say.
"Yes," she says. "Did you know she had a little four-year-old girl?"
"She was with her. She looked just like Emily at that age."
"Mom, Emily didn't have a baby recently."
"Well, maybe they had it illegitimately and hid it. They must have. It looked just like her."
"No, Mom."
"When we were leaving Japan, we heard that a haberdasher had been appointed president. But he reached out his hand to a bomb and couldn't be sworn in. He died a year later. Maybe they'll appoint a DAR now. He wanted Emily Lincoln."
"We're you watching a tv show about this, Mom?"
"Yes... This is a heck of a place. I'm thinking of moving out to the PEOs."
"Oh, you are? You like the PEO sisters, don't you?"
"Yes, I think I'll move into their place," she concluded. Then suddenly: "I have these scabs on my chest, and I wonder if they're going to turn into cancer."
"No, Mom. You get scabs from scratching. It's not cancer. Okay, Mom, thanks for calling."
"I wonder about that little girl with Emily. She didn't introduce me to her. I wonder what her name is."
"Mom, you must have been asleep, dreaming."
"Oh, I have good dreams!"
"Yes, you do."
"I heard that bears are running around in occupied places. Good thing Elbert died when he did or he'd have been eaten by one. It's a wonder I wasn't eaten by one."
"Yes, it's a wonder. But Mom, there are no bears in Santa Irena, so don't worry about it."
"Are you sure?"
"Santa Irena is a beach place. There's no forest. Bears are only in Colorado."
"That same man got me dressed today. He didn't call me sweetheart. He called me 'beautiful lady.'"
"Okay, Mom. Nice talking to you. I'll talk with you tomorrow."

Emily's Visit

Emily calls today with a report on Mom and questions about her accommodative AFOs (ankle-foot orthotics).
"Are the orthotics fitted for the right and left foot? Because they don't seem to be identified as left or right, but her ankle contracture is greater on her right foot than her left."
"The orthotics guy said either one could go on either foot," I answer.
"Well, her feet are different so they should be marked left and right," Emily explains. She is a registered physical therapist. "Also I brought some extensions for the leg rests on her wheelchair, but they don't fit. They're from someone who no longer needs them."
"You don't want to go down to Wishing Well Medical Equipment and order ones that fit?" I ask.
"I'm just trying to recycle--to save the expense by getting them used," Emily explains.
"Okay, fine," I agree.
"She's pretty out of it today. The caregiver had trouble getting her out of bed."
"You mean she's having a sleepy day?"
"No, she's not sleepy, just weak. She has pain in her leg from her hip. Didn't eat much lunch--said she couldn't eat because of the pain."
"So she's not going to walk today?" I ask.
"There's no way they could walk her today. She can't even transfer properly. Her right foot is not flat, so when she stands she puts all the weight on her left foot. Of course it hurts."
"Oh dear," I murmur.
"To transfer her properly, she should do some of the work, take some of her own weight. But to make her do it right is harder on the back of the person doing the transferring. I gave up because it was hurting my back, and I'm sure the caregivers aren't going to hurt their backs either. They'll just pick her up and lift her. To do it right takes two or three people today."
"Well, Racquel will be coming today, and I'm sure she won't do anything that might hurt her back," I reflect.
"I'm going to go out now and get some more Depends," Emily continues. "Shall I use her ATM card as a credit or debit purchase?"
"Either way, it ends up as debit. Connie made a list--she probably needs more plastic gloves too."
"Yeah, Mom's saying something about she wants to hire me," Emily adds.
"Oh, right! She came up with that yesterday. I guess she figures that while I'm out of commission, she'll hire you to come more often."
"It wouldn't be right... she needs all her funds."
"She doesn't realize you drive an hour and a half minimum to get here, in the best of traffic," I note. "But it's just five minutes for me."
"I'll try to come next week, maybe bring Scott or Andrew to talk with Marie while I visit Mom," Emily plans.
"Sounds good," I say. "Thanks for coming today."

Friday, May 26, 2006

Lonely and Depressed

Resting at home after surgery, I don't remember to call Mom, but at 5:45 pm the phone rings.
"This is your mother," she announces. "How are you?"
She must have asked Connie to make the phone call when Connie arrived for her evening shift.
"I'm lying in bed, resting from my hysterectomy," I answer. "How are you doing?"
"Not very well," she begins. "I've got to get this thing over with. I'm sick and tired of it. I've got to take some lessons so I can get this thing over with."
"What thing?" I ask. "I'm sorry I can't visit you for a few more days."
"I just get so lonely," she continues. "I've got to get out of this depression. I see these people running around here, and I don't know why I can't be like them."
"But you had a broken hip, and they didn't. If they had a broken hip, they wouldn't be running around so much either."
"No, they wouldn't! They'd find out."
"You mean you want to start physical therapy again, so you can walk?"
"Yes! I'm sick and tired of this."
"Well, I hope you can get to walking more again soon."
"I did a terrible thing last night," she says, changing the subject.
"I took off a wet Depends. I tore it off one leg but not the other. I had to tell the girl when she came to bring a new one."
"Oh." What a scene this must have been. The people who work night shift on memory-impaired floors must be saints to keep coming back night after night.
"I just can't go on this way," she adds.
"No... but at least you have some movies to watch while I am gone. What movie are you going to watch tonight?"
"Oh, I don't know."
"Put Connie on the phone for a moment," I ask.
"Hi, Anne. How are you, Anne," Connie says. "We miss you. Your mom misses you so much. When I got here she said, 'I want to call Anne.'"
"Thank you so much for coming and taking care of her," I sigh. "So you took her to Blockbuster to return the other CDs and get new ones? What are you going to watch tonight?"
"Last Holiday with Queen Latifah... and tomorrow Big Mama with Steve Martin."
"Oh, good," I say, wondering how these films will impact Mom's thinking. I had rented safe ones--My Fair Lady, Showboat, etc. But at least it's a change from I Love Lucy night after night.
"Anyway, now she's happy," Connie concludes. "I'll put her back on the phone."
Mom returns with an apology for not calling sooner: "If I didn't get to you earlier, it's not because I didn't try."
"Okay, good," I say. "Anyway, Emily's going to come see you tomorrow."
"If Emily comes--" Mom reflects. "She only works part-time, so I'll try to hire her double time. She knows what's wrong with me."
"Okay, fine," I say.
I don't ask why she suddenly wants to hire Emily.
I don't explain that you don't need to hire your own family.
I let it go.

Wednesday, May 24, 2006

All Is Well

Emerging from the fog of morphine, I remember in the afternoon, a day after my surgery, that Mom exists and I should call her.
"Hi, Mom. How are you?" I begin.
"Well, I'm fine but how are you? How was your surgery?"
Bravo! She knows what's happening.
"I'm in the hospital. Everything went fine, and I'm going home today."
"That's good, dear. I love you."
Wow! Appropriate responses. She's having a good day.
"I have to lie in bed for a week or more... I won't be coming to see you for a while."
"I miss you," she says, unable to keep the focus on me. "Things are so boring here."
"But Emily is coming to visit you, maybe tomorrow. I'll call you again tomorrow."
I hang up and drift off, thinking only of rest and sleep. I have no idea when I will get to Ocean View Assisted Living again--not until I am good and ready.

Tuesday, May 23, 2006

My Turn

I meant to visit Mom at 8 am before reporting to the hospital at 9:30 for my surgery.
I needed to spend some time with her and say both "Hi, I'm back from Chicago" and "Today I'm having my hysterectomy. I won't see you for about a week."
But I had a lot of last-minute errands to tend to before being out of commission for two weeks, so I didn't arrive at Ocean View Assisted Living until 9:20 am.
First I put a small thank-you note with a cash tip for Connie in the drawer of the black desk, as usual after I've been out of town.
Then I found Mom sitting in her wheelchair in the dining room after breakfast.
"Hi, Mom," I began. "I got back from my trip to Chicago. The wedding was very nice."
"Oh good," she said. "I'm so glad you're here. I've been so bored--"
"And today is my surgery," I continued in a rush. "I'm on my way to the hospital to have my hysterectomy. I can't stay long--I have to leave."
"Take me with you!" she cried, sensing the urgency in my voice.
"No, I can't take you with me," I said, laughing a little as the caregivers cleaning up breakfast looked on with amusement. "This time it's my turn."
"Bring me in your car! I need to go with you," she demanded, trying to adopt the old mother-taking-care-of-daughter tone.
"But I'm the one who takes you if you go anywhere," I explained. "And this time I can't drive you. I'll be the one in the hospital."
"Oh!" she paused, trying to understand.
"I have to leave now. I'll be back in a week or so. Connie will take good care of you, and Emily will visit."
"I'll visit you," she insisted.
"Here's a late Mother's Day present for you, that Roz sent," I countered, thrusting a beautifully wrapped gift into her hands. "You can open it."
And off I rushed, leaving her confused and agitated.
It was not the visit I had intended, but at least she would remember that I was back in town and in the hospital.
I arrived at St. Mark's Hospital fifteen minutes late for my appointment, but the admitting clerk didn't seem to care.
Within an hour I was lying on a gurney, whizzing through the hospital halls and observing the various landmarks on the ceiling.
I wasn't worried about the surgery--a vaginal removal of the uterus, ovaries, and Fallopian tubes, followed by insertion of a Monarch sling near the bladder to hold my ureter in a straighter position.
After all, Mom at 85 and 86 years had sailed through two surgeries just fine: the repair of a broken hip and the insertion of a pacemaker. I should do fine with this little tune-up.
If my choices are surgery or the threat of having to use Depends in thirty years, I'll take the surgery.

Thursday, May 18, 2006

Last Blast

Today I'm taking Mom out in the minivan for her last big outing before my surgery next Tuesday. She probably won't leave her residence for 4-5 weeks after this, until her doctor's appointment on June 12, but I don't tell her this.
Though we are supposed to arrive at Beverly Hills Prosthetics and Orthotics at 11 am, I have tried to cram too many errands into my morning before arriving to pick Mom up. It's my last day to do everything because John and I leave tomorrow with Marie for his cousin's daughter's wedding in Chicago, returning Monday night just before my Tuesday morning surgery.
I'm feeling pressured because I need to return Mom to her residence in time for me to attend a meeting of the local violence prevention coalition, arriving with snacks and copies of last month's minutes.
At any rate, I am not feeling calm or patient when I arrive at 10:30 am. If only Jona were still working the day shift with Mom, so she could have Mom ready at the door when I arrive.
Instead I have to go to Mom's floor, assist her to the toilet, and wheel her down to my parked car.
"I have to have my purse! My fur coat!" Mom cries as I try to wheel her out the door of her room.
The purse is a charade; I keep her Blue Cross card and checkbook in my wallet, but she fumbles with her purse whenever we pay for something. The fur coat is actually a sweater trimmed with rabbit fur.
"Here you go, but it's not cold out. You don't need to put the sweater on," I argue.
"My blood is colder than your blood," she retorts, trying to pull it on over the pink sweater and blouse she is already wearing.
"Okay!" I say crossly. She has one sleeve on and I roughly pull on the other.
She looks rumpled and odd with two sweaters on. Because the second sweater is angora wool, she will be slippery in my hands when I lift her out of the wheelchair and into the car. I've argued this point with her before, but I don't try today.
Soon we are flying down the freeway, taking the La Cienega exit at 11 am. I am trying to remember whether I turn right or left on Wilshire Boulevard to find Beverly Hills P- O Inc.
After locating a handicapped parking place, getting Mom into the wheelchair (slippery sweater and all), and getting up the elevator, we enter the elegant office.
David Cooley, PT, CPO, is wonderfully kind even though it is 11:15 am and we have thrown his next appointments off schedule.
We saw him for the first time last January, when he recommended that Mom wear a wool-lined boot at night to keep the inversion of her feet from getting worse. At that time he suggested not buying the malleable retrocalcineal passive resistive ankle-foot orthotics (PRAFOs) at a cost of $325 for each foot because we could get a similar boot at any medical equipment store, so we passed on the fancy PRAFOs and just ordered a lesser boot from Wishing Well.
It soon became apparent, however, that making Mom sleep with the cheaper model on was pointless. During the night the boot's velcro ripped away from the cross piece meant to keep the boot in a vertical position. Eventually my sister Emily recommended that we go back to the orthotics guy, where we are today.
"Evelyn has contractures of the hip, knee, ankle, and Achilles tendon," David reports after rotating Mom's feet. "Her foot cannot rest flat on the floor. She has a 40-45 degree equinus contracture with a varus component. We can't improve the contracture of her ankle and foot, but we can arrest it."
He explains that the equino contracture means she can't extend her foot down, while varus means her foot turns in. He says the varus actually can be reduced but not the equinus.
Then David explains the purchase options, again suggesting that we not buy the boots that cost $325 each. Another option is bilateral AFOs, splints inserted into her shoes to keep her feet straighter, only useful when she is actually walking.
With the level of medical terminology and decision-making clearly beyond my reach, I call Emily, who has a Master's in physical therapy, and miraculously reach her on her cell.
"Okay, Emily, could you talk with this gentleman about orthotics and let me know what you think we should do?"
After a short but technical consultation with David, Emily concludes that the PRAFOs are definitely the way to go, but that we should get them through brother Bill, a doctor working at Fort Lewis Army Base near Tacoma. He can probably get them for next to nothing.
"Okay," I say. "But I don't know... I'm leaving for Chicago tomorrow and then having surgery. I can't be in charge of getting these boots through Bill."
"Do whatever you want," she says.
"I like the red ones and the white ones--the tan ones are all right too," Mom says. She is talking about her SAS shoes of various colors.
I tell David, "We'll take the PRAFOs now. We'll write a check and see whether we can get reimbursement from Blue Cross."
By this time it's almost noon, and he needs to go to his next appointment, but he shuffles around in his closet, finds two of the things, and spends ten minutes fitting them for Mom's feet.
They are to be worn at night and when she is resting in her recliner, to keep her toes pointed up to the ceiling and her ankle flexed as close to a right angle as possible.
We make a trip to the bathroom and head back to Santa Irena.
As we wheel back to the car, Mom is happy because she is holding a big shiny bag with her new shoes and the words Beverly Hills Prosthetics Orthotics embossed on the side.
She asks for an ice cream cone, but the best I can do is a frozen ice cream drumstick from the pharmacy in the building.
Then we go to the dry cleaners and another ice cream shop on the way home.
She is back to Ocean View by 2 pm, but it's 3 pm by the time I leave the building and head for my next appointment.
To her this excursion meant lots of fun and attention. Good--but it's her last until mid-June.

Wednesday, May 17, 2006

How Much Your Visits Mean

I didn't visit Mom until 6 pm for the third day in a row (I'm preparing to go away for a four-day weekend, and when I get back I'm having a hysterectomy, so I'm trying to get all loose ends tied up this week.)
When I arrived, Mom was angry.
My usual big cheery "Hi, Mom! How are you?" met a sullen response.
"Not very well because you haven't been here."
"I was here yesterday, but you were sleepy, watching Lucy. Don't you remember?" I kneel on the floor, face to face with Mom in her wheelchair so she can see me.
"You don't know how much your visits mean to me."
"Oh... but I did come!"
"These people don't do things right. They don't care. I have to keep telling them."
"But Connie was here," I say, "She's pretty good." I grin up at Connie, her private caregiver, who spends a lot of time listening to Mom's complaints about how neglected she is. Connie works 5-10 pm MWF and 2-10 pm TTh.
"And tomorrow she'll take you out to get your nails done," I add, taking Mom's hand. "Look, you need to get your nails done."
The nails are too long and the pink polish is getting a bit ragged.
"Yes, it's been three weeks," Connie says.
"Oh dear," I sigh. "Has it really? Let's write it on the calendar for every other Thursday, otherwise we'll forget."
A few months ago parts of her nails turned white, and a manicurist told me it was because the polish had been left on too long. I never wear polish, so I don't know these things, but I had resolved to make sure she had manicures every three weeks.
"Good. I'll take her tomorrow," Connie agreed.
"What do I need to buy for her?" I asked. "I want to get enough Depends and plastic gloves and things to last for ten days or more."
"I made you a list," Connie says, handing it to me.
"Oh thank you," I say. "That's great."
"I have to go to Sav-On now, Mom. I'll be back in an hour or so. Connie will give you your shower."
"Okay," Mom says grudgingly.
I'm off to buy 4 packages of Depends and lots of other things, but echoing in my mind are Mom's words:
You don't know how much your visits mean to me.

Tuesday, May 16, 2006

I Love Lucy

Visiting Mom is not my priority this week, so I don't show up at her residence until 7 pm or so.
Earlier in the day I made a pre-op visit to the doctor for my upcoming surgery and went to a P.E.O. committee meeting, helping plan programs for meetings in the coming year. (I count P.E.O. time as time spent on Mom.)
When I arrive at her room, she is already showered, dressed in her nightgown, and resting in her recliner with her pink flannel blanket tucked up to her chin, watching an episode of I Love Lucy on the laptop computer propped up on a chair in front of her.
Her room is dark except for the glow of the computer screen in black and white. Connie stands by, cleaning up towels and things from the bath.
"Hi, Mom. How are you?" I begin. "I see you're watching Lucy."
"Yes--she's always so funny," Mom answers, her small face peeping out from the blanket that covers the rest of her. Her eyes are slits, barely open. She hardly turns her head to greet me, so completely is her attention absorbed by Lucy's antics.
A year ago I bought her a boxed set of 6 CDs of I Love Lucy, and watching them has become an evening ritual.
Tonight Lucy is trying to play the saxophone in order to get into Ricky's band and travel with him. She learned the saxophone in high school but can only play one song, squawkingly.
"That's like you with the oboe," I say. "That time the Telluride High School band went to the competition in Grand Junction, and the director told you not to play--just to pretend."
"Yes," says Mom, laughing. "'Don't you dare make a sound!' he told me."
I watch the show for a few minutes but leave shortly after.
She doesn't need me. She and Connie are perfectly happy.

Monday, May 15, 2006

Fluctuating Cognition

One of the main symptoms of Lewy Body Disease is the affected person's abilities fluctuating from day to day, even hour to hour.
Today Mom had a sleepy day. After sleeping all night, she slept most of the day.
I didn't visit her until 6 pm, and the caregivers immediately reported that she had been sleeping in her recliner all day. It was difficult to get her awake to go to lunch and dinner.
When I greeted her, she immediately spoke to me and opened her eyes, looking normal to me for a few moments.
"I brought you from flowers from Marie."
"Oh, good. They're beautiful," she said, looking at them.
"Marie should have brought them herself, but today is her first day at her job, being a hostess for a restaurant."
"Oh, I see. She'll enjoy that."
"I see you had your hair done," I said.
"Yes, but that woman is always a problem," Mom said. True. The hairdresser sends customers back to their rooms if she isn't ready for them, sometimes makes a few curls with a curling iron instead of putting the hair on rollers to dry.
But while I spoke to Connie, her private caregiver, for a few minutes, Mom went back to sleep.
"Okay, Mom. I'll put the flowers in water. Look at this one--isn't it pretty?"
No response. She sat in her wheelchair with her eyes closed.
"You look sleepy, Mom."
No response.
"I guess we had such a big day yesterday, going to Denny's and everything, that you're tired today."
No response.
"Okay, I'm going to go to Sav-On and buy some Depends. I'll be back soon."
No response. Not even opening her eyes.
It's as if her brain were a computer that hadn't booted up properly. Just no screen there at all.
What a contrast to yesterday, when she did so much walking and talking, laughing and telling me one crazy story after another.
It's as if she were manic yesterday or in high gear but locked in neutral today.
Now I feel grateful for the interaction we had yesterday, strange as some of it was. At least she was somewhat like her old self, talking and laughing.
Today is scary. It reminds me that each day is a gift, not guaranteed for tomorrow.

Sunday, May 14, 2006

Are You Having a Good Mother's Day?

I wake at 3:15 am and can't go back to sleep. I hear my daughter Marie in the kitchen finding something to eat. She had a mini-crisis yesterday, and I'm a little worried about her.
By 4:15 am she's back in bed and I get up. I was planning to get up early anyway to get to my mother's assisted living at 6 am and dress her for church. Just three hours of sleep, oh well.
I bake a birthday cake for Marie, who turns 19 today. I turn the timer off a minute before it will buzz so the noise won't wake anyone, but then I forget the oven for ten more minutes and burn the cake.
At 6:15 I am driving to Ocean View. The first stop light I encounter is not working, as usual. It stays red for me while cycling through green lights for the other directions three times. Finally I run the light, as I have on other days, including once when Mom nearly died of asphyxiation before I got there and cleared her throat. Today, calling the police department to report the light, I am told to call back on Monday. By this time I am pretty upset, maybe because I've had so little sleep.
~ ~ ~
As I arrive in the Reminiscence Neighborhood, April greets me.
"I just peeked in at Evelyn. She's still sleeping."
Good! I could use a few minutes of peace and quiet before dealing with her. I enter Mom's room and look around the corner toward her bed. Her eyes are wide open. She lies there looking toward the window and doesn't see me.
I decide to sit down and take five before announcing that I am here, but she hears me.
"Mother?" she asks.
"Yes," I say wearily. "I'm here."
"Oh good," she says.
I help her out of bed, into the wheelchair, and onto the toilet.
She begins telling me about the time when her brother Elbert was dying and she was in Ridgway and he called her and said, "Can you come to me? I don't want to die alone" and she came; then she's talking about his funeral. I have heard this story many times in the past couple of months, but it's mostly out of her imagination. She spoke to him on the phone before he died in June, 1998, and she drove from Boulder to Mancos, Colorado, for his funeral, but she was not at his death bed. I don't try to correct her.
I dress her in a colorful pink and green calf-length skirt with a muted green pullover sweater. She asks to wear her pink floppy hat and her rabbit-fur trimmed sweater. As I put lipstick and rouge on her, she starts singing gaily: "In her Easter bonnet, with all the flowers on it, she'll be the grandest lady in the Easter parade."
I decide to change the sheets on her bed and put one folded sheet in her lap while I pull a fitted sheet onto the mattress, but the sheet worries her. She starts to unfold it.
"Oh God, I don't think I know how to use this. What is it? Oh, it's just a pillow case. No, a purse." Her attention has been distracted by her purse lying in an open drawer nearby. I take the sheet. As she tries to pull the purse out of the drawer, the things inside slip out. "What is all that? Everything in it, everything's coming out. I have to have a proper one. I think it's the one that's meant for today."
Once the chores are done, I help her to stand at her walker and she walks to the dining room, about one hundred feet. "Don't hold onto me!" she says, proving that she can walk alone.
I leave her there to eat breakfast while I rest in her room and take care of a few things, like a phone call to my daughter in Spain.
~ ~ ~
After breakfast, Mom walks back to her room with my help.
"Good," I say. "You've had your exercise for the day." I try to make sure she does at least this much walking daily to slow down the curling in of her feet. My sister is concerned about this inversion that happens when she just sits in her recliner not walking.
"I'm going to walk into church," Mom announces. "I don't like to be in that chair all the time."
"Okay," I say, taking on the challenge. "We're getting an early start today, so you can walk in with your walker if you want to."
And she actually does it. I park right in front and pull her up to stand at the walker; she walks up the wheelchair ramp past the ushers (who delay us trying to give us each a flower for Mother's Day) and collapses in the nearest pew on the center aisle.
I feel like shouting, "Hallelujah! Look, everyone! The lame are walking today. Evelyn walked in without her wheelchair."
After church a couple of people do notice and congratulate her as she walks back to the car.
At the car a complete stranger asks, "Are you her daughter?" and starts a riff on mother care and her own mother who died a few years ago.
"Would you mind opening the car door?" I ask. Mom is about to collapse again; I am holding her up, and I don't have a free hand to open the door.
"I have to sit! Just let me sit down!" Mom is saying as she pants like someone who has run a mile.
"No, don't sit here-grab onto car door," I say. "Here's the bar you hold onto."
The chatty stranger helps me pull the walker out of the way so I can I can get Mom into the car. I load her walker, her purse, and my bag into the back seat, taking out my cell phone to keep in the front seat with me.
Then I put her seat belt on, laying the cell phone down on the roof of the van for a moment.
~ ~ ~
Why didn't I put it in my pocket?
A few moments later I am driving past the house where Nichole Brown Simpson was murdered, making my usual mental nod to her memory, and I suddenly think about my teenager and her birthday. I should call her. Where's my cell?
Nowhere. With a sinking feeling I remember putting it on the roof of the van.
I drive back to the church, search the street, make inquiries for lost & found, and start retracing my driving path.
Mom is worried: "It's all my fault. You were trying so hard to help me."
"No," I tell her. "It's okay."
Then I find it, smashed into five or six pieces where I made a left turn, already two blocks and one right turn away from where I had parked. Oh well, at least the mystery is solved.
~ ~ ~
We head home to greet the birthday girl and put the sheets in the washing machine, but no one is home, so we're off to Denny's for our big Mother's Day lunch out.
I'm going the extra mile, instead of serving Mom lunch at my house, partly because I will be out of town next weekend and recovering from a surgery the following weekend. This excursion will have to last her for a while.
This is the place to be on Mother's Day! says a sign near the Denny's entrance.
Apparently a lot of people agree; the place is packed with an ethnic mix that matches the state of California--51% Latino, 20% African-American and Asian, 30% Euro-American.
After a short wait we are escorted to a booth and I manage to get Mom into it. She has senior chicken-fried steak with French fries and coleslaw. I pass up the senior menu to have an "ultimate" omelette. We watch the lively scene around us, including many extended families that take up two or three booths.
"I like your shirt," she says. "I want a shirt like that, that says Caring."
I am wearing a black t-shirt that says, "Invest in caring not killing--Annual military spending is 10 times the money needed globally to provide basic food, water, health care and housing." It shows a Muslim mother with a baby on her back.
This is my failed attempt to deflect unwanted Mother's Day sentimentality. So far dozens of people, many of them strangers, have wished me a Happy Mother's Day, and ushers at church have pressed flowers into my hands.
In her right mind, Mom would never have asked to have a shirt like this, but now she understands that it is political and concerned.
"If I get a shirt like that, it'll show that I should have been more caring," she says.
"No, you are caring," I say, but she is now saying something about "when China starts fighting Japan... change the world."
Conversation shifts back to her brother.
"Everybody loved Elbert," she says. "I thought he shouldn't be on a roof, nailing a shingle... his first wife, I loaned her my fur coat... Elbert was a pretty good-looking young bachelor in that low-income town. His second wife was really lovely... I guess I've been spoiled all my life, between working for Daddy and working for Elskamps...."
I nod and murmur yes. Our two hours in Denny's drags on.
"I yearn to do my own cooking sometimes," Mom says. "I dream I'm making macaroni and cheese. I was just ready to take it out of the oven--but nothing."
"You wake up," I say.
Afterward we get in line for the bathroom, but there are only two stalls, one not working, so we drive home.
~ ~ ~
Still no one home. If my cell phone were working, I would know that Marie and her dad have gone to the Angels game in Anaheim. They all know better than to give me gifts today. I've told them how this day was founded by Julia Ward Howe as Mother's Peace Day but has degenerated into commercial fluff to compensate for exploitation of women the rest of the year.
I don't expect Mom to understand this, however. I've bought gifts for her and the two of us sit here alone opening them, as we did two months ago on her birthday.
She likes the bedroom slippers and Estee Lauder powder. The little stained glass church with a light bulb inside delights her.
"It looks like the one in Telluride before it burned down," I tell her.
"Yes," she says. "Everyone thought that Communists had burned it down."
I don't comment, smiling at the ambition of communists who might go all the way to the end of that box canyon to burn down a church.
"It can sit on the doll cabinet next to the dolls," she says. "The dolls are all virgin dolls."
And worthy of going to church, apparently, I think. Oh well.
She is talking about how she would like to move her doll cabinet into our house, right where John's easy chair sits.
"What would he think of that?" she laughs. "Not much, I guess. Mother-in-laws. You should tell him about my idea, for a joke, some time when he's depressed."
I laugh with her, thinking "No way!"
Then she's talking about my grandmother.
"I always feel so bad about my mother. I didn't know she died."
"Yes, she died," I say. I don't tell her again that she herself was the first to arrive at the P.E.O. chapter house when Grandma died in 1974. I don't repeat, "You were the one who called to tell me."
"She was a lovely woman," Mom continues. "She started you out right and everything."
"Yes," I say.
"Daddy said to me, 'Why don't you leave that poor baby alone?' and I told him I had to go be a Navy nurse and I left you with him and Mother to raise. They did a good job, sent you to school and everything."
I don't point out that she was a Navy nurse during World War II, long before she had me and my younger brothers and sister, that she and my father raised all of us kids.
Then her thoughts turn to my oldest daughter.
"Roz wrote me that card that said she'd love me no matter what. Does she know that with old age comes senility?" Mom asks, laughing as she contemplates eventually becoming senile.
"Oh, I'm sure she knows," I say.
Then I add, "It's time to go back to Ocean View. Let's pack up these gifts, and I'll get the laundry out of the dryer."
"You just want to get rid of me," Mom says.
I don't answer because it's true. I've been watching the clock for hours.
Soon she is back in the car, and my neighbor Shari walks over to say hi.
"Are you having a good Mother's Day?" she asks.
I equivocate, unable to say anything with Mom present, but Shari gets the point, telling me that she has to go in and clean up the mess in her kitchen after her young sons have planted seeds in pots as a Mother's Day gift.
~ ~ ~
Back at Ocean View, I greet Racquel, who has just returned from a month in the Philippines.
"I'm so glad you're back and that you came today, instead of going out with your family," I say. "That means I don't have to give my mother a shower tonight."
"Oh, it's my job, Anne," she says with a big smile. "I'm the one."
It's 3:15 pm as I escape from the Reminiscence Neighborhood, dodging Mother's Day greetings like a quarterback running with a football.
Soon I will be back home to frost Marie's cake and maybe even take a nap.

Sunday, May 07, 2006

How Grandma Lost Her Tomorrows

When I arrived at Mom's residence this morning at 7:45 am, I didn't know whether she would be dressed and at breakfast or still in bed.
Usually on Sundays I arrive at 6:30 or 7 am, help her get up, and dress her for church. Then I shower while she is at breakfast and take her to church.
Today I stayed home until my husband left for a short business trip, so I was late to arrive at Ocean View Assisted Living.
I found her at breakfast, wearing the flowered pink jacket and matching slacks I had laid out for her to wear today. She looked great, so I concluded all was well. A kind and competent young caregiver, Heidi, had gotten her up and dressed her.
We were still late for church, however, because breakfast didn't arrive until 8:30 and at 9 am she insisted on walking back to her room instead of riding in the wheelchair. After a few steps she whimpered and said it was painful, she couldn't make it, but with encouragement she did do it.
We got through the usual routine with no unusual problems: church (which she partially slept through), an ice cream cone from Baskin Robbins, a shopping trip to Sav-On (me shopping, her in the car with her ice cream), and a visit to my house.
She had hardly been at my house half an hour before she said it was time to go back to her residence--unusual for her. She hadn't even visited the bathroom yet. Usually she demands to use the bathroom about three times before I can get her back in the car to return to Ocean View.
After I got her settled in her chair for a nap back at her residence and was leaving at 2 pm, Bethlhem arrived for her 2-10 pm shift and pulled me aside to explain what had happened at 5 am.
"We checked her at 4:45 am and she was snoring, but when I happened to come by again at 5 am, she was sitting up on the edge of her bed pulling her nightgown off," began Bethlehem.
"So I said, 'Evelyn, what are you doing? It's too early to get up.'"
"'I'm getting dressed for church so I will be ready when Anne comes,' she told me.
"'Oh no, Anne won't like that,' I told her. 'You might fall down and get a broken bone, and Anne would not like that.' She seemed to think about that and to understand."
"So you were able to get her to go back to bed?" I asked.
"Yes, she went back to bed and to sleep," Bethlhem confirmed.
"Oh thank goodness," I said. "She has done that before--tried to get up at 3 am or 5 am. That's why she had a private caregiver at night for so long. But I thought she wasn't doing that any more. I haven't been much in touch with the night shift. And why are you working from 10 pm to 6 am and then starting another shift eight hours later?"
Bethlhem didn't totally explain why for two days in a row she worked graveyard shift and then started again at 2 pm--there must have been staffing problems. She is a lead caregiver in charge of 4-5 others, an immigrant from Ethiopia, kind, competent, caring, and beautiful in her early thirties.
Another unanswered question was why the Posey alarm hadn't gone off. It is supposed to make a loud noise when she sits up in bed or tries to leave the bed.
I concluded with Bethlhem that I shouldn't have told Mom, "Tomorrow we're going to church. Let's pick out an outfit and hang it out here."
Many times before these little announcements I have made to add a little excitement to her life have backfired and caused her to lose sleep or become agitated.
The worst case was Easter 2005, when the bedtime comment "Tomorrow is Easter!" caused her to have hallucinations and to believe the world was coming to an end. She was so agitated that we never made it to church.
Just two days ago we had made an appointment with another resident (not in the "Reminiscence Neighborhood" but on the floors for people with their wits about them), to take her to the P.E.O. meeting on Friday, her first visit to P.E.O. in over a year. But the poor lady called me in the morning and said she couldn't go to the meeting because she had not slept at all that night. Perhaps getting there and the social dynamics of the gathering worried her, or perhaps she has agoraphobia.
Anyway, Bethlhem and I concluded that Mom (a.k.a "Grandma") should no longer be informed about what events will take place in the morning.
From now on, it's just "Good night, sleep well. I love you."
No information about what will happen tomorrow.

Saturday, May 06, 2006

The Headless Nurse

A few months ago I glued together a couple of broken pieces on a ceramic doll that turns in a circle on a music box and returned it to Mom.
The little figure looks like a Madame Alexander doll, a childish version of a nurse in a full-skirted blue dress with a white apron.
The music box plays, "Just a spoonful of sugar helps the medicine go down, the medicine go down, the medicine go down; just a spoonful of sugar helps the medicine go down in the most delightful way."
Because Mom was a registered nurse and taught nursing at the college level, she loves listening to this little doll.
Yesterday I was singing along with the music, but I was singing "...makes the medicine go down, the medicine go down."
"I think it's helps the medicine go down,'" Mom corrected me.
"Oh! Okay," I said, and I placed the doll on the foot of her bed where she could pick it up and rewind it while sitting in her recliner during the afternoon.
Today when I came to check on Mom and help her walk back from the dining room to sit in her chair, I forgot about the doll. I eased Mom into the electric recliner and pushed the button to make it recline and lift the footrest.
But the chair jerked and there was a small noise of something breaking.
I remembered the doll, and sure enough, she had fallen to the floor and had been broken by the moving recliner. It was a clean break, though--the figure was intact except for the head having been decapitated.
She still turns in a circle and plays the music as cheerfully as ever, even without her head.
"Just a spoonful of glue helps the head to go back on, the head to go back on," she seems to be singing.
If only Mom could reclaim her lost head so easily.