Monday, April 17, 2006

Gone Fishing

I hope to drive to Colorado today for a 9-10 day vacation, checking on my mother's house near Telluride as well as mine.
They say that caregivers need to take time for themselves--well, this is it.
I hope I have made enough arrangements with Ocean View Assisted Living and with the private caregiver who will come 8 hrs. per day in the early evening M-F. I still have to type various notes and schedules of her preferred routine throughout the day.
I hope Mom will get through this ten days without a physical or mental health crisis.
My sister will visit at least once, but most of the time Mom will be on her own with the various caregivers.
When I told Mom I was driving to Colorado, she immediately asked, "Can I go with you?"
It was hard to tell her no.

Sunday, April 16, 2006


One of the hazards of being a caregiver for a dementia patient is that their care is a bottomless pit into which it is easy to fall.
Today I put a fair number of hours into care of Mom, as well as some time and energy into making this a good day for my husband.
Meanwhile, I missed a couple of urgent phone calls from one of my three daughters away at college.
I wish I had put a little thought and energy into her welfare today, but I was running full speed ahead on the track of elder care.

Answer to the Easter Puzzle

I woke up today, Easter, still puzzled about how to balance Mom's needs with my needs and those of my husband. (See "The Unwelcome Guest.")
One good option seemed to be returning her to her residence after church and then bringing her back for dinner with John and me at 7 pm.
I had promised him I would take her back at 2 pm and not bring her back, but he had said he didn't mind her being around all day as long as he didn't have to eat a big dinner at 2 pm.
A generous offer from Jennifer, the young musician who provides entertainment and activities on the Rem floor, helped me unravel the day's options.
"We're going to make deviled eggs this afternoon," she said. "Here are the Easter eggs they colored yesterday. Aren't they great? Don't you want to join us, Evelyn?"
"Well, maybe," Mom said. Usually she hates the group activities, but this one involved food, and a food she liked. "I know how to make deviled eggs."
"Wonderful," I said. "Yes, I will have her back here by 2 pm."
But then during church I debated whether to pick her up again at 7 pm to eat Easter dinner with John and me, or just to give her a quick version of Easter dinner at 1 pm and not tell her John and I would be having Easter dinner at 7 pm.
I finally gambled that I could give her Easter dinner without her remembering that John was not with us... that this was not the usual family gathering.
It worked. She commented about my three daughters not being there, but she didn't get to the next square, that John was not present.
I served her and me part of a warmed up slice of ham with asparagus and canned sweet potatoes, followed by strawberry shortcake.
I had planned to make the shortcake, but to save time and to prevent John from being annoyed by any fuss in the kitchen should he arrive back from his church service, I just used slice pound cake from the grocery store.
"This is about a $5 lunch," she commented happily.
And later, "That's a tender ham."
"Uh-huh, pretty good, isn't it?" I answered. "Well, after all, it's Easter." My goal was that she know it is Easter, have a happy day, and not realize that she is missing out on the usual big Easter dinner.
Still later she said, "Boy, what a scrumptious spread." Usually at my house she just gets raisin toast and milk, grapes, maybe a ham sandwich.
But then she made a smart but poignant comment: "I would be so happy if I could just walk around like you do. Maybe if I pay 25 cents an hour extra to get somebody to walk with me, I could get to walking again. They just get 45 cents an hour, you know."
"Yes, maybe that would work," I said.
We finished "Easter dinner" and I prepared to take her back to Ocean View.
"Now, if I could indulge in using your bathroom again," she said.
"No problem," I said, though I had been hoping one trip to my bathroom would be enough for today. Getting her out of her wheelchair and onto the commode in the narrow space of my bathroom door is so difficult.
If, however, using my bathroom is a small pleasure she wants, and one that it is in my power to grant, by all means, I will give her this "indulgence."
Soon she was back at Ocean View, eagerly joining into the deviled egg making, and I was promising to return at 6 pm to bathe her.
Back at home, John seemed relieved that she was not here today while he was home. He suggested going to a movie this evening, and I was able to say, "Sure why not? After I shower my mother."
He grumbled at having to plan around her shower, but I was happy that she had already had her Easter dinner and was out of his way.
He wants to skip Easter dinner and just have popcorn at the 7:40 pm movie, maybe eat afterwards. Fine. That's fine with me.

She Is Risen

I arrived early at Mom's residence, 7:30 am, but not early enough.
Instead of being there at 6 or 6:30 am, I half-wakened at 6:30 am and, having gone to bed at 2 am after celebrating a Seder at a friend's house, was unable to persuade myself to rise until 7 am.
When I finally showed up at Ocean View Assisted Living, I saw a vision: Mom in her Easter finest walking down the hall (with her walker) to breakfast, being trailed by April, who had dressed her, and Retanya, who was pushing the wheelchair in case Mom needed to sit.
"Oh, thank you," I said. "I'm late! I meant to get here in time to dress her."
They know that I do it every Sunday, but apparently Mom had been thinking about Easter all night and had wakened early and tried to get started--a vestige of her old self, the "Hurry up--I'll do it myself" mother I grew up with.
"She was dressing herself," April said. "She had taken off her nightgown and her diaper when we arrived. She said she wanted to surprise you."
"Yes, sometimes I have found her lying there with her nightgown off when I get there at 6:30 or 7 am, but not her Depend--oh dear!"
"I just need my V-8," Mom interjected, calm and collected. "Anne, can you get it?
"Yes, Mom," I agreed. "Happy Easter, everybody."
After taking her to her seat in the dining room, I went back to her room and encountered Bethlhem, who further described the resurrection scene.
"She was lying there not dressed, with a new diaper between her legs--I don't know how she got it."
"They're on her bedside table," I said.
"And we said to her, 'Why don't you wait for Anne?' But she said, 'What if I want to surprise her? It was so sweet--like a child. She wanted to surprise you on Easter."
"Wow," I said, grateful that this year's Easter agitation had taken a positive turn.
When I took the V-8 back, Ilona thanked me for the potted Easter lily I had brought.
"Evelyn, would you like some tea?" she then asked.
"Yes, if it's not too much trouble," Mom said. "I know you have a lot of people to serve."
Ilona and I were stunned by her courtesy and insight. There were only two others in the dining room so far, and usually Mom and the other residents demand to be helped immediately with whatever goal they have, such as being served the meal or being taken back to their rooms.
But today Mom had risen a new woman.
Leaving Mom at breakfast, I returned to her room to take my own shower and dress for church.
Because of this early start for Mom's breakfast, we will probably arrive early for the crowded 9:30 am Easter service and more easily find a spot to park her wheelchair.

The Unwelcome Guest

Holidays are really hard for a family with a person who has dementia.
Do you include the LBD or Alzheimer's person in your family plans--even if his/her needs are quite different from those of the rest of the family? Or do you celebrate the holiday with the rest of the family and leave Grandma out of the central dinner or other events?
When I proposed having Easter dinner at 1 or 2 pm, so Mom could join us and then go back to her residence, my husband objected. He wanted to mow the lawn or be outdoors in the afternoon rather than face an elaborate, interminable meal with just the three of us--him, me, and my mother.
"Your family always has dinner in the middle of the afternoon," he complained. "Having to sit through a meal then ruins my day."
I didn't point out that his own mother is having a catered Easter dinner for 23 family members, scheduled for early afternoon to accommodate travel times for various relatives traveling from several hours away. If we weren't a continent away, he would be spending his Easter at that event.
He would rather eat at 7 or 8 pm, even on holidays. And the meal should always be simple, as few dishes as possible.
If our daughters were home, on the other hand, he would accept having an elegant Easter dinner. The scene would be more lively than just him, me, and my mother sitting there.
For Mom, however, a meal at 7 pm is a little difficult. She usually eats at 5 pm, is given her shower at 6 pm, and is napping peacefully in her large recliner by 7 pm, prior to her 9 pm medications and bedtime.
Actually, she could probably eat at 7 pm and return to her residence at 8 pm for her shower, but that would be a little more difficult for me.
She has no private caregiver tomorrow, so I will arrive at her room at 7 am or so, dress her and take her to the dining room for breakfast by 8 am, take her to church at 9:30 am, and bring her to our house after church.
If I keep her at our house until 7 or 8 pm, that means I face a 12-hour day of caregiving.
Perhaps I should return her to her residence after church and then bring her to our house at 7 pm. But at Ocean View Assisted Living, they will serve dinner at 5 pm, so she will be eating two dinners in a row.
I'm not sure what to do.
Will she know she has missed Easter dinner if I take her back to her residence at 2 pm and she stays there for the rest of the day? Perhaps she won't remember that on Easter she should be eating a nice dinner with family members.
Will I be able to shower her at 6 pm at her residence, leave her there for the night, and still serve dinner at 8 pm?
There are no easy answers.
But at least I expect an easier Easter than last year, when I arrived at 8 am to take her to church and found her extremely agitated, unwilling to leave the building because the world was ending.
We never made it to church. I finally got her into the car and took her home, where she sat in the car for hours refusing to come into the house.
My daughter finally coaxed her out of the car and we had a fairly nice dinner at about 6 pm--but from John's point of view, I'm sure it was interminable, too elaborate, and too early.

Saturday, April 15, 2006

Have You Married Lately?

Mom receives about 900 pieces of mail per month.
Every time she sneezes, it generates a Blue Cross Explanation of Benefits and a Medicare Summary Notice, not to mention bills and notices from the doctor/nurse/physical therapist/wheelchair rental service/blood lab/ambulance or whatever other agent or agency might have had some remote contact with her.
I don't read each one the minute it arrives. They stack up, though I do glance at each envelope to judge whether it is important or just another piece of paper to file.
Today, after filing her tax return for 2005 and balancing her checkbook for Jan. 31 and Feb. 28, I balanced her checkbook for March 31. And I noticed that one of her four monthly direct deposits (her Social Security, her Social Security as a widow, her pension from the U. of Md., and her Dept. of Defense income) did not arrive.
No wonder she has been short of money this month, drawing on her Visa overdraft protection.
I sent an email to her credit union asking if they knew why this deposit did not take place.
Later, after several more hours of balancing her March statement (mainly untangling charges to my ATM card from her checkbook, where I had erroneously entered them*), I looked through her "possibly somewhat important" pile of mail and found a letter from the Defense Finance and Accounting Service.
Please complete the enclosed Certificate of Eligibility and return it to DFAS, US Military Annuitant Pay.... required by law in order for us to determine your continued eligibility for your annuity payments.
We have suspended your annuity until we receive a completed COE.... Your marital status is required to update your account, please place an 'X' in the applicable box:
___ I did not marry in the past year.
___ I married in the past year (please attach a copy of your marriage certificate).
Right, another one of these forms. They seem to come monthly from one agency or another.
So that's why she is missing $920.55. They suspect that she may have married.
I emailed the bank and said sorry, I figured out why she is missing her deposit.
I wrote a letter to the DFAS.
Evelyn F. Eggebroten is 87 years old and has dementia. She is living on a secure floor in a residence with 24-hour nursing case for her illness, Lewy Body Dementia.
No way could she marry!
We do not appreciate your cutting off her DFAS check on April 1 because we did not promptly fill out a form that you mailed.
Sincerely, Anne M. Eggebroten, P.O.A. (daughter)
And then I reflected on the Department of Defense's view of her life and the lives of others in her age range.
Apparently they see these 80-somethings as quite active sexually and alert mentally. Hey, 87 is the new 77.
Or maybe they are harking back to a healthier millennium, thinking the elderly are all like Abraham and Sarah, begetting and conceiving and remarrying if a partner has died.
Isn't there a way one could inform the DFAS that one's elderly parent cannot walk or talk in a coherent fashion, or do any of the ADLs (dress, bathe, prepare meals, keep house, etc.)? that therefore he or she is 100% unable to take a vow of taking anyone to love and to cherish "until death us do part"?
In fact, those who are in their seventies or older and sexually active are also smart enough not to remarry and lose their Social Security.
I know of several couples (retired pastors and church organists among them, P.E.O. members, etc.) who would never have lived in sin earlier in their lives but find it necessary to do so now, for financial reasons.
The government hasn't found them, but it has cut off Mom's annuity. Go figure.

* Note: I carry two checkbooks and two ATM cards (deciding on each trip to the grocery store or Sav-On whether this set of purchases for both of us should go on her card or mine). And I do five income tax returns (hers, mine, and my three kids').

Thursday, April 06, 2006

Denny's and the Jacuzzi

Because Connie called in yesterday to say she would not be able to work this evening, I took over her shift. Instead of visiting in the afternoon, I showed up at 5 pm and took Mom to Denny's.
This is a big treat. I tried to get her to let me take her to the pier to look at the ocean and push her out to a restaurant there.
"No, I don't want to do that. I'm afraid of the ocean," she said.
Finally she agreed to take a peek at the ocean from the car but not to eat there.
So Denny's it was.
Sometime I want to be able to go to Denny's and not be the star of the show.
With her in the wheel chair and me attending her, we attract a lot of attention.
We wheeled up to a table as usual, but she had a different plan.
"I want to sit by a window."
"Okay," I said and laboriously lifted her out of the wheelchair and into a booth seat by a window.
We ordered, and then she said with alarm, "I have to go to the bathroom right now!"
I didn't remind her that when one is wearing Depends, these situations are not as urgent as they might seem.
Instead I pulled her out of the booth and into her wheelchair, chatting with some people at a nearby table who had picked up a sweater we had dropped earlier.
Thank God Denny's has wheelchair-accessible bathrooms. After using the toilet, we went to the sink.
"This is fun," she said as she sat there washing her hands. In her apartment the sink is not built to allow a wheelchair to slip under it, so she rarely gets to actually hold her hands under the water and wash them. Pretty exciting.
"Yes, Denny's is always fun," I answered.
Back into the booth, she attacked her Swiss steak with mushrooms and cheese and finished the whole thing. I dawdled through my Creole scrambled eggs.
We returned to Ocean View, where I insisted on giving her a tub bath in a jacuzzi designed so the side of the tub pulls up after you get the person in to sit on the seat.
That was exciting for me, but terrifying for her. She didn't like it.
At 8:45 pm she refused to go to bed.
"I stay up until ten o'clock," she said.
"No, you always go to bed at nine," I insisted.
I called my brother and talked for an hour about family health issues.
"Now to bed," I said at 10 pm.
"No!" she protested. "I don't go to bed until ten o'clock."
"IT IS TEN O'CLOCK!" I yelled.
"I guess I have to obey you," she said, assuming her poor-me tone of voice.
Just like a child, she will keep me there all night if she can.

Monday, April 03, 2006

Come and Play with Me

Today is the first day of the new schedule in which Ocean View cares for Mom 6 am to 2 pm, I show up at 2 or 3 pm, and Mom has a private caregiver for only 6 hours, 5 pm to 10 pm.
I was hoping things would go smoothly and I would have a quiet morning to work on the income tax returns.
But at 9 am I got a phone call.
"This is your mother. What are we doing today?"
I felt like saying, "I am not your playmate. We are not doing anything today!"
But I talked to her about her fresh permanent and other plans.
"Today is Monday, and usually you get your hair done on Monday, but you can't today because of your new perm. So you will just have to sit in your chair and watch tv or go out and do whatever the group is doing in the main room. I will come at 2 pm and we will go buy some V-8. Who helped you to call me? Bethlhem? Can I talk with her?"
"How is she doing?" I asked. "She can just sit in her chair in her room and watch tv if she wants to. Or you can keep her out there and make her do whatever activities are happening this morning. I don't care."
Somehow she made it through the morning, but she was angry about having to sit with the group for a conversation.
"It was boring," she said. "Those people just sleep, or they don't talk."
I could picture the scene all too well.
We went out for our exciting trip to the supermarket, where I pushed her up and down the aisles. And then back to Ocean View.
Will she adjust to having no one to manage her mornings?
It's not starting well, but at least we are saving money.