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.
Monday, April 17, 2006
Sunday, April 16, 2006
Hazards
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.
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.
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.
Hallelujah!
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.
Hallelujah!
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.
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.
To 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').
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.
To 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.
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.
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.
Friday, March 31, 2006
Plan C--Or Is it Plan D?
I had to go to Ocean View to dress my mother again, arriving this time at 7 am.
When I got there she was wide awake in bed and had removed her flannel nightgown, lying naked in her bed and wanting to get up.
By the time I got her dressed and straightened up her room and left at 9:30 am, I had decided we couldn't have any plan where some mornings she had a private caregiver and other mornings she depended on the Ocean View staff. It would be too confusing.
I will have to count on Ocean View to get her up, dress her, and take care of her all mornings until 2 pm, except on Sundays, when I dress her and take her to church.
I called the agency to ask Ana to ask Connie, whom I had just fired from her evening shift as of April 1, to keep the evening shift after all, working 2-10 pm Tuesdays and Thursdays and 5 pm-11 pm Mondays and Fridays, and 5 pm to 5 am on Wednesdays (to total 40 hrs. per week).
That way at least Mom's evening routine will stay the same, and I can relax knowing Connie had arrived.
The only worry is what to do with Mom's energy after breakfast, from 9 am to noon, and after lunch if she was not sleepy. The Ocean View staff will try to make her sit in the group activities in the common area, throwing a ball or listening to a story or maybe singing.
But Mom hates that. It reminds her that she is institutionalized with other people, many of whom are even less mentally competent than she is.
I can try to get them to let her go back to her room and sit in her recliner in front of her tv, where she likes to spend most of her day, napping and chatting with a caregiver. But with no caregiver, they will be nervous about leaving her there, thinking she might try to slide out of her chair or do something else unsafe. They also believe she should join in with the others in the group activities, even if she doesn't like them.
Ana called Connie, and Connie agreed to continue to work her normal shift.
I went to see her in the evening to confirm this plan.
The week ends with the third new plan for caregiving work hours.
And with me again scheduled to work tomorrow morning at 6 am, as well as Sunday.
When I got there she was wide awake in bed and had removed her flannel nightgown, lying naked in her bed and wanting to get up.
By the time I got her dressed and straightened up her room and left at 9:30 am, I had decided we couldn't have any plan where some mornings she had a private caregiver and other mornings she depended on the Ocean View staff. It would be too confusing.
I will have to count on Ocean View to get her up, dress her, and take care of her all mornings until 2 pm, except on Sundays, when I dress her and take her to church.
I called the agency to ask Ana to ask Connie, whom I had just fired from her evening shift as of April 1, to keep the evening shift after all, working 2-10 pm Tuesdays and Thursdays and 5 pm-11 pm Mondays and Fridays, and 5 pm to 5 am on Wednesdays (to total 40 hrs. per week).
That way at least Mom's evening routine will stay the same, and I can relax knowing Connie had arrived.
The only worry is what to do with Mom's energy after breakfast, from 9 am to noon, and after lunch if she was not sleepy. The Ocean View staff will try to make her sit in the group activities in the common area, throwing a ball or listening to a story or maybe singing.
But Mom hates that. It reminds her that she is institutionalized with other people, many of whom are even less mentally competent than she is.
I can try to get them to let her go back to her room and sit in her recliner in front of her tv, where she likes to spend most of her day, napping and chatting with a caregiver. But with no caregiver, they will be nervous about leaving her there, thinking she might try to slide out of her chair or do something else unsafe. They also believe she should join in with the others in the group activities, even if she doesn't like them.
Ana called Connie, and Connie agreed to continue to work her normal shift.
I went to see her in the evening to confirm this plan.
The week ends with the third new plan for caregiving work hours.
And with me again scheduled to work tomorrow morning at 6 am, as well as Sunday.
Thursday, March 30, 2006
Crisis: Losing Jona
Ana called from the agency Wednesday evening to say that Jona would not be coming to work today because of a doctor's appointment.
I agreed to work her shift, arriving at 6 am to dress my mother and get her to breakfast.
When I walked into the room, she was sleeping sweetly while Stephen Foster's "Beautiful Dreamer" filled the air. Kim, the night caregiver, had put the Reader's Digest Quiet Music for Quiet Listening into her CD player.
"Beautiful dreamer, wake unto me! Dew drops and roses are waiting for thee...."
I chatted with Kim, then took care of Mom and handed her over to the Ocean View staff at 8 am with suggestions for how to manage her morning, greatful that Connie would be arriving at 2 pm.
But in the evening, Ana called again. I hate seeing her name on the face of my cell phone; it's always bad news, that a caregiver will not be showing up. She said that Jona will not be returning to work until after her baby was born in June. The doctor whom she saw today ordered her not to do any lifting or heavy work--to quit her job.
What a shock! On Monday I had painfully reduced Jona's hours to four per day, on Tuesday she had declined to work such limited hours, and on Wednesday we had arrived at the happy conclusion that she would keep her eight-hour shift until the end of June.
But that afternoon she had gone home and helped her mother, as usual, with the lifting and handling of her 16-year-old brother, who is confined to a wheelchair with cerebral palsy. In doing so, she had strained herself accidentally and caused bleeding, perhaps loosening the baby's placenta. The doctor had ordered no more lifting at all, either with her brother or by working with Mom.
"What do you want me to do for next week?" asked Ana. "Connie can't work the morning shift. Do you want me to hire someone for it? Racquel might be able to do it on Thursday and Friday mornings, and Connie could work on Tuesday and Saturday mornings for eight hours and maybe work two or three evening shifts a week."
"I don't know, " I said for the second time in two days. "Let me think about it."
Thursday evening ends with the prospect of suddenly never seeing Jona again, who has cared for Mom six days a week since October, 2004. Perhaps she will come by after the birth of her baby.
Should I hire someone to replace her? Or should I patch together a plan using Racquel and Connie, Mom's weekend and evening caregivers, for the morning shift? Or should I just hand Mom over the the Ocean View staff for the morning shift?
Jona told me yesterday that the Ocean View staff has its heaviest workload in the morning hours 6-9 am, getting the 31 residents up and dressed and to breakfast. She was saying that it wouldn't be a good idea to ask them to give her a shower then--it would be rushed.
I wish I could get Mom's care settled once and for all.
Meanwhile, I have to be there early tomorrow morning to substitute for Jona.
I agreed to work her shift, arriving at 6 am to dress my mother and get her to breakfast.
When I walked into the room, she was sleeping sweetly while Stephen Foster's "Beautiful Dreamer" filled the air. Kim, the night caregiver, had put the Reader's Digest Quiet Music for Quiet Listening into her CD player.
"Beautiful dreamer, wake unto me! Dew drops and roses are waiting for thee...."
I chatted with Kim, then took care of Mom and handed her over to the Ocean View staff at 8 am with suggestions for how to manage her morning, greatful that Connie would be arriving at 2 pm.
But in the evening, Ana called again. I hate seeing her name on the face of my cell phone; it's always bad news, that a caregiver will not be showing up. She said that Jona will not be returning to work until after her baby was born in June. The doctor whom she saw today ordered her not to do any lifting or heavy work--to quit her job.
What a shock! On Monday I had painfully reduced Jona's hours to four per day, on Tuesday she had declined to work such limited hours, and on Wednesday we had arrived at the happy conclusion that she would keep her eight-hour shift until the end of June.
But that afternoon she had gone home and helped her mother, as usual, with the lifting and handling of her 16-year-old brother, who is confined to a wheelchair with cerebral palsy. In doing so, she had strained herself accidentally and caused bleeding, perhaps loosening the baby's placenta. The doctor had ordered no more lifting at all, either with her brother or by working with Mom.
"What do you want me to do for next week?" asked Ana. "Connie can't work the morning shift. Do you want me to hire someone for it? Racquel might be able to do it on Thursday and Friday mornings, and Connie could work on Tuesday and Saturday mornings for eight hours and maybe work two or three evening shifts a week."
"I don't know, " I said for the second time in two days. "Let me think about it."
Thursday evening ends with the prospect of suddenly never seeing Jona again, who has cared for Mom six days a week since October, 2004. Perhaps she will come by after the birth of her baby.
Should I hire someone to replace her? Or should I patch together a plan using Racquel and Connie, Mom's weekend and evening caregivers, for the morning shift? Or should I just hand Mom over the the Ocean View staff for the morning shift?
Jona told me yesterday that the Ocean View staff has its heaviest workload in the morning hours 6-9 am, getting the 31 residents up and dressed and to breakfast. She was saying that it wouldn't be a good idea to ask them to give her a shower then--it would be rushed.
I wish I could get Mom's care settled once and for all.
Meanwhile, I have to be there early tomorrow morning to substitute for Jona.
Wednesday, March 29, 2006
Compromise Solution
In the morning I was clear on one thing: we could not cut Mom's private caregiver hours from 16 hours a day to zero in one big jump.
I called the agency and said we would like to keep one of the caregivers for eight hours per day and lay off the other caregiver. I thought I could fill in the cracks around giving up one caregiver.
My preference was to keep the evening caregiver so that her daily bath and bed routine would continue to be given by a person she knew well. But I felt that Connie, the evening person, could get another job easily, whereas the morning caregiver, Jona, is six months pregnant and could not easily find another job with as little lifting and hard work as this one.
In addition, Mom has more energy and needs more direction and companionship in the morning. She is more likely to sleep in the afternoon and early evening, so she may be able to get along without a private caregiver in those hours, except that her bath and bed routine will be disturbed. Ocean View offers a maximum of four showers per week, and these might end up being done by different people every day, including by men. Mom would not like that.
I asked the agency to retain Jona (the morning caregiver) and reassign Connie.
Ana at the agency called to tell me that Jona had accepted this plan.
I was happy when I saw Jona at 1 pm because things are resolved favorably. I like Jona a lot. She is so kind and caring with my mother, and I had promised her she would be able to work up until her baby's birth.
Now I can keep that promise and perhaps transition to having no private caregiver when she takes time off for the birth of her baby at the end of June.
I called the agency and said we would like to keep one of the caregivers for eight hours per day and lay off the other caregiver. I thought I could fill in the cracks around giving up one caregiver.
My preference was to keep the evening caregiver so that her daily bath and bed routine would continue to be given by a person she knew well. But I felt that Connie, the evening person, could get another job easily, whereas the morning caregiver, Jona, is six months pregnant and could not easily find another job with as little lifting and hard work as this one.
In addition, Mom has more energy and needs more direction and companionship in the morning. She is more likely to sleep in the afternoon and early evening, so she may be able to get along without a private caregiver in those hours, except that her bath and bed routine will be disturbed. Ocean View offers a maximum of four showers per week, and these might end up being done by different people every day, including by men. Mom would not like that.
I asked the agency to retain Jona (the morning caregiver) and reassign Connie.
Ana at the agency called to tell me that Jona had accepted this plan.
I was happy when I saw Jona at 1 pm because things are resolved favorably. I like Jona a lot. She is so kind and caring with my mother, and I had promised her she would be able to work up until her baby's birth.
Now I can keep that promise and perhaps transition to having no private caregiver when she takes time off for the birth of her baby at the end of June.
Tuesday, March 28, 2006
Just Saying No
It was difficult to break the news to Jona and Connie that I needed to cut back their hours to four hours each. During many months of 2005 they had each worked twelve hours per day, but I had cut it to eight hours and now to four hours.
Jona, the morning caregiver, had said she would not be able to work only four hours; she would ask the agency for a different assignment.
Connie, who works evenings, said she would be able to work only four hours because she has another job nearby for 8 hours on Mondays, Wednesdays, and Fridays. With the two jobs, she could make ends meet.
So I went to bed hopeful that I would be able to retain at least Connie, perhaps both of them.
But today I got a call from the agency: neither Connie nor Jona will continue to work with my mother for only four hours per day, and Racquel, the weekend caregiver, will not be able to work daily during the week because she has another job.
"Do you want us to look for someone else for the job?" asked Ana at the agency.
What a scary prospect: hire two new people working four hrs. per day each (if anyone can be found to show up reliably for those hours), train them, and bond with them--at a time when I need to cut back on private caregiver hours.
Or cut back from sixteen private caregiver hours per week to zero hours, cold turkey. That would mean training Ocean View caregivers to get Mom up in the morning and dress her, care for her during the day, and bathe her at night.
It would help her financial picture greatly, but it would also entail me doing a lot more hours of caregiving as she adjusted from having a full-time personal caregiver to having only the overworked staff of Ocean View. More hours for me was really scary.
I didn't know what to do. I told the agency I would call them back in the morning.
Jona, the morning caregiver, had said she would not be able to work only four hours; she would ask the agency for a different assignment.
Connie, who works evenings, said she would be able to work only four hours because she has another job nearby for 8 hours on Mondays, Wednesdays, and Fridays. With the two jobs, she could make ends meet.
So I went to bed hopeful that I would be able to retain at least Connie, perhaps both of them.
But today I got a call from the agency: neither Connie nor Jona will continue to work with my mother for only four hours per day, and Racquel, the weekend caregiver, will not be able to work daily during the week because she has another job.
"Do you want us to look for someone else for the job?" asked Ana at the agency.
What a scary prospect: hire two new people working four hrs. per day each (if anyone can be found to show up reliably for those hours), train them, and bond with them--at a time when I need to cut back on private caregiver hours.
Or cut back from sixteen private caregiver hours per week to zero hours, cold turkey. That would mean training Ocean View caregivers to get Mom up in the morning and dress her, care for her during the day, and bathe her at night.
It would help her financial picture greatly, but it would also entail me doing a lot more hours of caregiving as she adjusted from having a full-time personal caregiver to having only the overworked staff of Ocean View. More hours for me was really scary.
I didn't know what to do. I told the agency I would call them back in the morning.
Monday, March 27, 2006
Financial Reality
Background
When Mom sold her house for $450,000 early in 2002 at age 83, I figured she was set for life financially, with that amount in CDs and her monthly retirement income of $4,700. And I figured each of her four children would inherit a nice amount.
But my brother Bill said, "She will go through it in medical bills before she dies. Most people do." He's a surgeon, and in following elderly patients, he has seen it happen.
Nevertheless, my siblings and I set her up in a nice residence, first for independent living, later for assisted living, and now for assisted living for the mentally impaired because of her dementia.
She didn't use much of her capital until she fell and broke her hip in August, 2004, and even then the cost of her care in a skilled nursing facility approximately equaled her income.
The cost went up when we decided to move her out of the grim SNF with its hospital-like atmosphere into a much nicer assisted living residence. That was about $7,000 per month for the maximum level of care, which she needed--incontinence care, bathing, dressing and undressing, being taken to meals and put to bed.
But when I realized that she was getting out of her chair or bed and falling, I learned that assisted living facilties are not licensed to use any form of restraint. The only way to keep her in that residence safely was to hire a private caregiver to attend her and verbally restrain her. That's when the costs skyrocketed.
We paid $14 per hour, at first during the daytime hours (8 hrs. supplemented by a 2-4 hr. visit from me or my sister), then also 6 pm to 6 am, finally 24 hrs. per day.
The alternative was to put her back into a SNF, where she would be strapped into a chair during the day and strapped into a hospital bed at night (or kept in a bed with full-length bars raised instead of a restraint over her waist. (Assisted living facilities are not licensed to use any form of restraint.)
All this care kept her safe--and it even saved her life when she had an allergic reaction at 1 am in June, 2005, and the caregiver was able to respond and call 911 when her swollen tongue and throat had blocked her breathing.
Cutting back on care
In January I reduced her care to 16 hours per day in order to slow the drain on her financial resources. I counted on her being less able to climb out of bed at night than she had been over a year ago and also on her understanding the rules of her life by now--that she can't get out of bed in the night alone.
But still she was angry with me--she was used to having someone at her side to respond to her fears and dreams during the night, as well as to give her a sip of orange juice, put soothing music on the CD player, and change her Depends.
She told anyone who would listen, "Anne's trying to kill me." That was her explanation for why I had removed the night caregivers.
Financial Review of 2005
During this past week in order to gather Mom's financial records to send to the kind CPA who does her taxes, I entered her income and expenses into Quicken.
The results were shocking. Her income was excellent--$83,000. But we had paid $85,000 for her room, board and care in assisted living. And we had paid $105,000 on top of that for the private caregivers.
All this because of her dementia--to keep her from getting out of her chair or bed and falling, and to give her someone to dress her, tend to her, and talk with her. This one-on-one relationship is excellent for her mental health--it keeps her depression, anxiety, and hallucinations in check.
But at this rate her money will last only one more year, and it looks as if her health may last several more years.
Life Expectancy--A Guessing Game
When she had her broken hip, Bill said that 50% of those her age who break a hip die within a year. Based on that statistic, we spent money freely to give her the best possible arrangements for her last year or two.
But now her health has stabilized, with all this excellent care. Her doctor says that at age 87 one's life expectancy is four years. How Lewy Body Dementia will affect that time period is anyone's guess.
At any rate, we now need to make sure her remaining $200,000 will last for several more years.
Further reductions in caregiver hours
My conclusion is that we have to give up the private caregivers, gradually. She now has 16 hours of care per day: one caregiver 6 am to 2 pm, and one 2 pm to 10 pm. I decided to tell each of them that we have to cut back to four hours in the morning and four hours in the evening.
That would mean that she would still be dressed and started in the morning by a private caregiver, 6 am to 10 am, and she would still have her evening routine including daily bath unchanged, 6 pm to 10 pm.
I broke this news to each of her caregivers, and I also told them that I would understand if they decided they could not work only four hours. After all, they only get paid $12 per hour after the agency takes $2 per hour, so that means they commute and work 8 hours for only $96. Commuting and working 4 hours for only $48 might not be worth their time, but I hope they each will continue with her. She knows them and is used to their care.
When Mom sold her house for $450,000 early in 2002 at age 83, I figured she was set for life financially, with that amount in CDs and her monthly retirement income of $4,700. And I figured each of her four children would inherit a nice amount.
But my brother Bill said, "She will go through it in medical bills before she dies. Most people do." He's a surgeon, and in following elderly patients, he has seen it happen.
Nevertheless, my siblings and I set her up in a nice residence, first for independent living, later for assisted living, and now for assisted living for the mentally impaired because of her dementia.
She didn't use much of her capital until she fell and broke her hip in August, 2004, and even then the cost of her care in a skilled nursing facility approximately equaled her income.
The cost went up when we decided to move her out of the grim SNF with its hospital-like atmosphere into a much nicer assisted living residence. That was about $7,000 per month for the maximum level of care, which she needed--incontinence care, bathing, dressing and undressing, being taken to meals and put to bed.
But when I realized that she was getting out of her chair or bed and falling, I learned that assisted living facilties are not licensed to use any form of restraint. The only way to keep her in that residence safely was to hire a private caregiver to attend her and verbally restrain her. That's when the costs skyrocketed.
We paid $14 per hour, at first during the daytime hours (8 hrs. supplemented by a 2-4 hr. visit from me or my sister), then also 6 pm to 6 am, finally 24 hrs. per day.
The alternative was to put her back into a SNF, where she would be strapped into a chair during the day and strapped into a hospital bed at night (or kept in a bed with full-length bars raised instead of a restraint over her waist. (Assisted living facilities are not licensed to use any form of restraint.)
All this care kept her safe--and it even saved her life when she had an allergic reaction at 1 am in June, 2005, and the caregiver was able to respond and call 911 when her swollen tongue and throat had blocked her breathing.
Cutting back on care
In January I reduced her care to 16 hours per day in order to slow the drain on her financial resources. I counted on her being less able to climb out of bed at night than she had been over a year ago and also on her understanding the rules of her life by now--that she can't get out of bed in the night alone.
But still she was angry with me--she was used to having someone at her side to respond to her fears and dreams during the night, as well as to give her a sip of orange juice, put soothing music on the CD player, and change her Depends.
She told anyone who would listen, "Anne's trying to kill me." That was her explanation for why I had removed the night caregivers.
Financial Review of 2005
During this past week in order to gather Mom's financial records to send to the kind CPA who does her taxes, I entered her income and expenses into Quicken.
The results were shocking. Her income was excellent--$83,000. But we had paid $85,000 for her room, board and care in assisted living. And we had paid $105,000 on top of that for the private caregivers.
All this because of her dementia--to keep her from getting out of her chair or bed and falling, and to give her someone to dress her, tend to her, and talk with her. This one-on-one relationship is excellent for her mental health--it keeps her depression, anxiety, and hallucinations in check.
But at this rate her money will last only one more year, and it looks as if her health may last several more years.
Life Expectancy--A Guessing Game
When she had her broken hip, Bill said that 50% of those her age who break a hip die within a year. Based on that statistic, we spent money freely to give her the best possible arrangements for her last year or two.
But now her health has stabilized, with all this excellent care. Her doctor says that at age 87 one's life expectancy is four years. How Lewy Body Dementia will affect that time period is anyone's guess.
At any rate, we now need to make sure her remaining $200,000 will last for several more years.
Further reductions in caregiver hours
My conclusion is that we have to give up the private caregivers, gradually. She now has 16 hours of care per day: one caregiver 6 am to 2 pm, and one 2 pm to 10 pm. I decided to tell each of them that we have to cut back to four hours in the morning and four hours in the evening.
That would mean that she would still be dressed and started in the morning by a private caregiver, 6 am to 10 am, and she would still have her evening routine including daily bath unchanged, 6 pm to 10 pm.
I broke this news to each of her caregivers, and I also told them that I would understand if they decided they could not work only four hours. After all, they only get paid $12 per hour after the agency takes $2 per hour, so that means they commute and work 8 hours for only $96. Commuting and working 4 hours for only $48 might not be worth their time, but I hope they each will continue with her. She knows them and is used to their care.
Thursday, March 16, 2006
A Day of Neglect
Mom had a tough day today. Her afternoon caregiver, Connie, was scheduled to work 2 pm to 10 pm but had an emergency with her 13-year-old daughter and couldn't come.
When I got the call at 1:30 pm, I didn't ask for a replacement. Instead I decided that Ocean View staff members could look after Mom until I arrived at about 7 pm to give her a shower.
I knew there was a St. Patrick's Day party 2-4 pm, then dinner. I called Ocean View to let the staff know that Mom was in their care 2-7 pm.
At 2:30 pm I almost went over to check on Mom, but then I stopped myself. Instead I prepared for the 4:30 pm community meeting I attended today.
At 6:30 pm I got a call from Bethlhem, the lead caregiver, asking whether I was coming and whether she could take Mom back to her room and leave her. She didn't say that Mom was so frustrated with not being allowed to return to her room after dinner that she was crying, but Mom reported that later.
When I arrived at 7:15 pm, Mom was in a hysterical state of anxiety. Her cheeks were flushed, her look bewildered. Her breathing was heavy wheezing. She said she had been expecting me all day, but I didn't come.
Then she launched into a tale about how mean "she" is. Mom can no longer tell her caregivers apart; they blend together in her mind.
"She wouldn't let me go back to my room. 'I don't give a damn' she said."
"She shouldn't say that!" I answered. "If she does that, I may have to fire her."
Mom liked that idea.
After listening to her tale of woe (caused by my decision not to call in a substitute), I gave her a shower and dressed her for bedtime. Then I found the musical "Annie" on television and set her up to watch it on tv until the Ocean View staff came to put her to bed.
When I left, she was cozy and content. However, this episode demonstrated how valuable the caregivers are. She thrives on having them with her to converse and to attend her needs.
As soon as I try to save money by not having the caregivers with her, she panics. Their absence causes a change in her schedule, and that creates more panic.
Note: It would be better to have no private caregivers than intermittent caregivers. One day full care, the next just partial is too confusing for her.
When I got the call at 1:30 pm, I didn't ask for a replacement. Instead I decided that Ocean View staff members could look after Mom until I arrived at about 7 pm to give her a shower.
I knew there was a St. Patrick's Day party 2-4 pm, then dinner. I called Ocean View to let the staff know that Mom was in their care 2-7 pm.
At 2:30 pm I almost went over to check on Mom, but then I stopped myself. Instead I prepared for the 4:30 pm community meeting I attended today.
At 6:30 pm I got a call from Bethlhem, the lead caregiver, asking whether I was coming and whether she could take Mom back to her room and leave her. She didn't say that Mom was so frustrated with not being allowed to return to her room after dinner that she was crying, but Mom reported that later.
When I arrived at 7:15 pm, Mom was in a hysterical state of anxiety. Her cheeks were flushed, her look bewildered. Her breathing was heavy wheezing. She said she had been expecting me all day, but I didn't come.
Then she launched into a tale about how mean "she" is. Mom can no longer tell her caregivers apart; they blend together in her mind.
"She wouldn't let me go back to my room. 'I don't give a damn' she said."
"She shouldn't say that!" I answered. "If she does that, I may have to fire her."
Mom liked that idea.
After listening to her tale of woe (caused by my decision not to call in a substitute), I gave her a shower and dressed her for bedtime. Then I found the musical "Annie" on television and set her up to watch it on tv until the Ocean View staff came to put her to bed.
When I left, she was cozy and content. However, this episode demonstrated how valuable the caregivers are. She thrives on having them with her to converse and to attend her needs.
As soon as I try to save money by not having the caregivers with her, she panics. Their absence causes a change in her schedule, and that creates more panic.
Note: It would be better to have no private caregivers than intermittent caregivers. One day full care, the next just partial is too confusing for her.
Wednesday, March 15, 2006
Not Funny
I'm not usually tempted to crawl into bed and pull the covers over my head at 5 pm, but it happened today.
It wasn't a bad day really--just a doctor's appointment for Mom and a birthday luncheon for her and my daughter Roz, with a few other errands tucked in the edges.
As we were finishing lunch, Roz ran outside to put more quarters in the parking meter for her car. That left Mom and me and Roz's friend Malina, who is visiting southern California while on spring break from college in New York City with Roz.
Mom was dressed elegantly and her hair had been done on Monday--all in all, a suitable family matriarch, to all appearances.
As we were talking, she mumbled something about a sweet little kitty, I thought. I didn't quite hear it.
"What did you say?" I asked.
"They're afraid I'll show them my sweet little titty," she repeated.
Silence. There we were at the nice seafood restaurant, Mom and I and Roz's nice new friend from Barnard College.
"Disinhibition," I said, finally. "That's an example of what I was telling you about." Fortunately the subject of Lewy Body Dementia and disinhibited speech had come up before in my conversations with Roz's friends over the last six days.
"Oh, I understand. It's not a problem," Malina said.
"I guess I shouldn't have said that," Mom then commented, noticing that something was wrong.
"No, you shouldn't have," I said.
The moment passed. Roz returned, but I didn't mention it to her. She had been so brave, trying to engage her grandmother in conversation.
"How are things at Ocean View?" she had asked. "How are your friends doing?"
"Oh, same old thing--boring," Mom had said. A pretty good answer. But she didn't have much to say to the second question.
I could have explained: she doesn't have any friends. She is surrounded by the same people every day, but none of them has a real capacity for friendship. That would require several abilities: to listen, to retain what someone has said, and to focus their attention on another person's words and feelings.
When lunch was over, I drove Mom back to Ocean View, but I was rethinking her future.
I can tolerate things like wiping her mouth and chin in public or fielding random comments when she tries to participate in a conversation, but I reached my limit today. She is no longer fit for polite company.
From now on, she will be confined either to the floor she lives on or to the immediate family. I'm not sure that grandchildren (except for my own) will be included in that category.
One of the tragedies of Lewy Body is that the patient's mental condition varies from day to day and sometimes moment to moment. Lucid to looney. Unlike persons with Alzheimer's, who talk less and less, LBD people talk as much as ever. They just don't have a functioning frontal temporal lobe, which screens speech and behavior for social acceptibility.
Up until today, my general plan has been to keep her life as normal as possible. I take her out to attend church, to dine at restaurants, to share family parties, and even to attend social events such as P.E.O. I introduce her to my friends and my children's friends.
But I need to cut back. I need to protect myself. I need to recognize that she belongs in an environment where dementia is expected and understood.
The biggest hazard I see on the horizon is taking her to P.E.O. meetings. Because I've already committed to taking her to them, I will give her one more chance, but I will watch her like a hawk. If she makes any mistake like the one today, that will be her last P.E.O. meeting.
It wasn't a bad day really--just a doctor's appointment for Mom and a birthday luncheon for her and my daughter Roz, with a few other errands tucked in the edges.
As we were finishing lunch, Roz ran outside to put more quarters in the parking meter for her car. That left Mom and me and Roz's friend Malina, who is visiting southern California while on spring break from college in New York City with Roz.
Mom was dressed elegantly and her hair had been done on Monday--all in all, a suitable family matriarch, to all appearances.
As we were talking, she mumbled something about a sweet little kitty, I thought. I didn't quite hear it.
"What did you say?" I asked.
"They're afraid I'll show them my sweet little titty," she repeated.
Silence. There we were at the nice seafood restaurant, Mom and I and Roz's nice new friend from Barnard College.
"Disinhibition," I said, finally. "That's an example of what I was telling you about." Fortunately the subject of Lewy Body Dementia and disinhibited speech had come up before in my conversations with Roz's friends over the last six days.
"Oh, I understand. It's not a problem," Malina said.
"I guess I shouldn't have said that," Mom then commented, noticing that something was wrong.
"No, you shouldn't have," I said.
The moment passed. Roz returned, but I didn't mention it to her. She had been so brave, trying to engage her grandmother in conversation.
"How are things at Ocean View?" she had asked. "How are your friends doing?"
"Oh, same old thing--boring," Mom had said. A pretty good answer. But she didn't have much to say to the second question.
I could have explained: she doesn't have any friends. She is surrounded by the same people every day, but none of them has a real capacity for friendship. That would require several abilities: to listen, to retain what someone has said, and to focus their attention on another person's words and feelings.
When lunch was over, I drove Mom back to Ocean View, but I was rethinking her future.
I can tolerate things like wiping her mouth and chin in public or fielding random comments when she tries to participate in a conversation, but I reached my limit today. She is no longer fit for polite company.
From now on, she will be confined either to the floor she lives on or to the immediate family. I'm not sure that grandchildren (except for my own) will be included in that category.
One of the tragedies of Lewy Body is that the patient's mental condition varies from day to day and sometimes moment to moment. Lucid to looney. Unlike persons with Alzheimer's, who talk less and less, LBD people talk as much as ever. They just don't have a functioning frontal temporal lobe, which screens speech and behavior for social acceptibility.
Up until today, my general plan has been to keep her life as normal as possible. I take her out to attend church, to dine at restaurants, to share family parties, and even to attend social events such as P.E.O. I introduce her to my friends and my children's friends.
But I need to cut back. I need to protect myself. I need to recognize that she belongs in an environment where dementia is expected and understood.
The biggest hazard I see on the horizon is taking her to P.E.O. meetings. Because I've already committed to taking her to them, I will give her one more chance, but I will watch her like a hawk. If she makes any mistake like the one today, that will be her last P.E.O. meeting.
Tuesday, March 14, 2006
Sleepy Day
Today when I arrived at 2 pm, Mom was sound asleep in her recliner and unrousable.
I talked with her caregiver for a few minutes, but Mom never said a thing.
Then I asked Mom to wake up to sign her name on three birthday cards. She talked to me but did not open her eyes.
"Open your eyes, Mom, if you are talking to me," I said.
She answered but did not open her eyes. Somehow we got the cards signed in a wide, loopy version of her signature.
I told her I was leaving and said goodby.
Thank goodness for a few sleepy days interspersed with the challenging days.
I talked with her caregiver for a few minutes, but Mom never said a thing.
Then I asked Mom to wake up to sign her name on three birthday cards. She talked to me but did not open her eyes.
"Open your eyes, Mom, if you are talking to me," I said.
She answered but did not open her eyes. Somehow we got the cards signed in a wide, loopy version of her signature.
I told her I was leaving and said goodby.
Thank goodness for a few sleepy days interspersed with the challenging days.
Monday, March 13, 2006
Overdose of Caregiving
I couldn't drag myself over to Ocean View Assisted Living today.
On Mondays, Wednesdays, and Fridays I try to cover the 2-5 pm period when Mom has no private caregiver. I usually arrive about 2:30 pm, figuring she will sleep in her chair for a while after Jona has left.
But today I didn't get there until 3:30 pm. Nothing in particular delayed me, except the thousand and one things I need to get done, things that didn't get done while I was out of town for a week and while my college kids have been home for spring break.
I arrived to find that Mom had wriggled down in her recliner with her back on the seat of the chair and her legs hanging off the footrest, but she was okay.
I took her to the toilet, mainly to change her Depend, which was sodden. She didn't want to walk there using her walker--the wheelchair is easier--but I insisted, and she laughed.
"Things are always funny when we are together," she said, remembering the hysterical laughter last night.
Nothing seemed funny to me, though. I was focused on getting to Sav-On to buy more Depends and other products, then getting her back so I could leave as soon as possible, maybe by 4:30.
Every simple activity seemed to take so long: I couldn't slow down to the snail's pace of life at Ocean View.
"You didn't put powder in," she said, as I pulled up her Depend. Today this complaint was not funny.
After I parked the car at Sav-On, I said what I always say: "I'll be right back."
Mom said what she always says: "I'll time you." Today she added, "It will probably be an hour."
Somehow this didn't turn into good-humored banter. It just felt like another complaint. I can get in and out of Sav-On in ten minutes on a good day, and I usually don't mind the shopping.
But today my mood was low. Instead of offering any kind of gratitude, Mom times me on how fast I can do the shopping.
Actually there was another factor weighing me down. Earlier today I had agreed to take time on Thursday morning to drive a wheelchair-bound older friend to Fantastic Sam's to get a haircut. I should have said no when she called with this request, but she had never asked any favor before and, taken by surprise, I didn't know how to refuse her.
After hanging up the phone, I told myself, "Great, Anne. Why don't you make a career of this? Driving older people on their errands. While all your other work doesn't get done, you agree to do things like this. You do elder care for free while your husband goes to work and earns money. Congratulations, stupid."
"You took 25 minutes," Mom reported when I got back to the car. I threw some of the items into the car angrily and drove back to Ocean View, where I unloaded Mom from the car to the wheelchair, hung all the plastic bags off the handles and piled two of them on her lap. We went up the first elevator, around the U-shaped building, up the second elevator, and to her room.
I didn't offer Mom a bathroom trip. Instead, after unloading the items, I started her on walking to the dining hall with her walker. She did well, and I left.
Diagnosis: overdose of caregiving.
All the books--like The 36-Hour Day--say to take care of yourself. Don't get too worn out.
Instead I put in 15 hours yesterday and agreed to drive to Fantastic Sam's on Thursday.
The result is not good.
Resource: The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss Later in Life by Nancy L. Mace and Peter V. Rabins (New York: Warner, 1981).
On Mondays, Wednesdays, and Fridays I try to cover the 2-5 pm period when Mom has no private caregiver. I usually arrive about 2:30 pm, figuring she will sleep in her chair for a while after Jona has left.
But today I didn't get there until 3:30 pm. Nothing in particular delayed me, except the thousand and one things I need to get done, things that didn't get done while I was out of town for a week and while my college kids have been home for spring break.
I arrived to find that Mom had wriggled down in her recliner with her back on the seat of the chair and her legs hanging off the footrest, but she was okay.
I took her to the toilet, mainly to change her Depend, which was sodden. She didn't want to walk there using her walker--the wheelchair is easier--but I insisted, and she laughed.
"Things are always funny when we are together," she said, remembering the hysterical laughter last night.
Nothing seemed funny to me, though. I was focused on getting to Sav-On to buy more Depends and other products, then getting her back so I could leave as soon as possible, maybe by 4:30.
Every simple activity seemed to take so long: I couldn't slow down to the snail's pace of life at Ocean View.
"You didn't put powder in," she said, as I pulled up her Depend. Today this complaint was not funny.
After I parked the car at Sav-On, I said what I always say: "I'll be right back."
Mom said what she always says: "I'll time you." Today she added, "It will probably be an hour."
Somehow this didn't turn into good-humored banter. It just felt like another complaint. I can get in and out of Sav-On in ten minutes on a good day, and I usually don't mind the shopping.
But today my mood was low. Instead of offering any kind of gratitude, Mom times me on how fast I can do the shopping.
Actually there was another factor weighing me down. Earlier today I had agreed to take time on Thursday morning to drive a wheelchair-bound older friend to Fantastic Sam's to get a haircut. I should have said no when she called with this request, but she had never asked any favor before and, taken by surprise, I didn't know how to refuse her.
After hanging up the phone, I told myself, "Great, Anne. Why don't you make a career of this? Driving older people on their errands. While all your other work doesn't get done, you agree to do things like this. You do elder care for free while your husband goes to work and earns money. Congratulations, stupid."
"You took 25 minutes," Mom reported when I got back to the car. I threw some of the items into the car angrily and drove back to Ocean View, where I unloaded Mom from the car to the wheelchair, hung all the plastic bags off the handles and piled two of them on her lap. We went up the first elevator, around the U-shaped building, up the second elevator, and to her room.
I didn't offer Mom a bathroom trip. Instead, after unloading the items, I started her on walking to the dining hall with her walker. She did well, and I left.
Diagnosis: overdose of caregiving.
All the books--like The 36-Hour Day--say to take care of yourself. Don't get too worn out.
Instead I put in 15 hours yesterday and agreed to drive to Fantastic Sam's on Thursday.
The result is not good.
Resource: The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss Later in Life by Nancy L. Mace and Peter V. Rabins (New York: Warner, 1981).
Sunday, March 12, 2006
Birthday Giddy
Because today is Mom's 87th birthday, we had lots of plans. In addition, her weekend 2-10 pm caregiver, Racquel, had a sister visiting from the Philippines and took the weekend off.
As it turned out, I was with Mom constantly from 6:30 am to 9:30 pm. By the end we were both giddy.
Power struggles, role reversal--everything was funny.
For example, brushing teeth.
"Do you brush them or do I?" I asked, not remembering caregiver details.
"You do," she giggled.
"Oh yeah? I think you can just brush them yourself," I said, trying not to laugh.
"You're making me pee in my diaper," she warned helplessly. "Now we have to change it again."
"Oh, all right," I said, the complaint in my voice setting her off again.
"You didn't put any powder in," she complained, knowing she was being demanding.
"You don't need any more," I countered.
"I always make them put it in. What if they say 'Why should I, if your own daughter doesn't?'"
"Well, that's just tough," I answered. "I'm not putting in any powder." And my refusal sent us both into hysterics again.
"Okay, time to go to bed," I said, trying to recover the voice of authority.
"I'm not ready for bed," she said. "I usually sit in the chair and watch tv."
"It's 9 0'clock," I said. "The time when you always go to bed."
"But I was planning to stay up until 10," she countered, giggling at herself for sounding like a six-year-old.
"Well, I'm going to go home and go to bed, so you should be in bed before I leave," I argued. "You'll just fall asleep in your chair, and then someone will have to get you into your bed."
"Oh, all right. At least it's not a raggedy nightgown tonight."
"Oh yeah, poor you. But we got rid of those ragged gowns. We bought two new ones today."
"Yes," she admitted.
"You've had a nice day. You went to church, out to lunch, home for your birthday cake, opened presents. And everyone at church sang Happy Birthday to you."
"It was embarrassing."
"Not grateful, are you?" I commented sarcastically, as we both started laughing again.
"No--you told them I was 87."
"It's a big deal to be 87. Most people don't make it that far."
"I suppose...."
Somehow she ended up in bed, tucked in, and I ended up running for the exit door to the secure floor, punching in the code to leave.
We made it through the big birthday with enough fun and attention to last until next year, I hope.
As it turned out, I was with Mom constantly from 6:30 am to 9:30 pm. By the end we were both giddy.
Power struggles, role reversal--everything was funny.
For example, brushing teeth.
"Do you brush them or do I?" I asked, not remembering caregiver details.
"You do," she giggled.
"Oh yeah? I think you can just brush them yourself," I said, trying not to laugh.
"You're making me pee in my diaper," she warned helplessly. "Now we have to change it again."
"Oh, all right," I said, the complaint in my voice setting her off again.
"You didn't put any powder in," she complained, knowing she was being demanding.
"You don't need any more," I countered.
"I always make them put it in. What if they say 'Why should I, if your own daughter doesn't?'"
"Well, that's just tough," I answered. "I'm not putting in any powder." And my refusal sent us both into hysterics again.
"Okay, time to go to bed," I said, trying to recover the voice of authority.
"I'm not ready for bed," she said. "I usually sit in the chair and watch tv."
"It's 9 0'clock," I said. "The time when you always go to bed."
"But I was planning to stay up until 10," she countered, giggling at herself for sounding like a six-year-old.
"Well, I'm going to go home and go to bed, so you should be in bed before I leave," I argued. "You'll just fall asleep in your chair, and then someone will have to get you into your bed."
"Oh, all right. At least it's not a raggedy nightgown tonight."
"Oh yeah, poor you. But we got rid of those ragged gowns. We bought two new ones today."
"Yes," she admitted.
"You've had a nice day. You went to church, out to lunch, home for your birthday cake, opened presents. And everyone at church sang Happy Birthday to you."
"It was embarrassing."
"Not grateful, are you?" I commented sarcastically, as we both started laughing again.
"No--you told them I was 87."
"It's a big deal to be 87. Most people don't make it that far."
"I suppose...."
Somehow she ended up in bed, tucked in, and I ended up running for the exit door to the secure floor, punching in the code to leave.
We made it through the big birthday with enough fun and attention to last until next year, I hope.
Tuesday, February 28, 2006
LBD and Otis Chandler
Otis Chandler, long-term publisher of the Los Angeles Times, died on Monday, February 27, as a result of Lewy Body Disease. He was 78 years old.
For more information, go to www.latimes.com/news and then use the search tool by entering his name.
Chandler was publisher from 1960-1980. He guided major changes in the newspaper's scope and outlook, making it one of the leading daily papers in the US.
A vigorous athlete, he was diagnosed about a year ago and declined swiftly in the last week.
In fact, his dementia began several years ago. For his 75th birthday, his family had been planning a big party, but they decided to cancel their plans when it became apparent that he might say or do inappropriate things. LBD patients lose normal inhibitions controlling speech and behavior, but they retain the ability to talk and to initiate behavior.
Speakers at Chandler's memorial service included his wife, Bettina, who described a moving Lewy Body moment, as reported in the LA Times, March 7, p. B1:
Bettina Chandler brought tears to many in the church when she told a story about Chandler that included a reference to his firstborn son, Norman, who died of a brain tumor in 2002. Otis, she said, woke up recently, when disease was claiming his reasoning powers, and announced to her: "I have to pack."
"Where are you going?" she asked.
"I don't know," Chandler replied, "but Norman's coming for me."
For more information, go to www.latimes.com/news and then use the search tool by entering his name.
Chandler was publisher from 1960-1980. He guided major changes in the newspaper's scope and outlook, making it one of the leading daily papers in the US.
A vigorous athlete, he was diagnosed about a year ago and declined swiftly in the last week.
In fact, his dementia began several years ago. For his 75th birthday, his family had been planning a big party, but they decided to cancel their plans when it became apparent that he might say or do inappropriate things. LBD patients lose normal inhibitions controlling speech and behavior, but they retain the ability to talk and to initiate behavior.
Speakers at Chandler's memorial service included his wife, Bettina, who described a moving Lewy Body moment, as reported in the LA Times, March 7, p. B1:
Bettina Chandler brought tears to many in the church when she told a story about Chandler that included a reference to his firstborn son, Norman, who died of a brain tumor in 2002. Otis, she said, woke up recently, when disease was claiming his reasoning powers, and announced to her: "I have to pack."
"Where are you going?" she asked.
"I don't know," Chandler replied, "but Norman's coming for me."
Friday, February 17, 2006
Playing DAISY
We played DAISY at the P.E.O. meeting today. It's like BINGO, but about twenty times harder.
Each person has a printed sheet with five columns and five rows, as in a Bingo game.
But in each square there is a sentence of 8-27 words or a phrase such as "One of the seven founders: Alice Coffin."
The president pulls a slip of paper out of a container and reads aloud each sentence, announcing that it is in column D or perhaps column S. Each person looks to see if she has that sentence.
Since there are seven founders, finding a square that begins "One of the seven founders" is not good enough. You have to distinguish it from the other six squares that begin that way.
Likewise, if the president reads, "Suela Pearson used a large wooden crochet hook as a gavel," you have to make sure you don't cross off a square just because it begins with "Suele Pearson...." Suela did five or six other things that each earns a different square.
This is fine if you are just managing one sheet of paper, but I was trying to monitor Mom's paper as well as mine.
She was listening and eagerly crossing off a square each time anything was said. I didn't want her to cry "Daisy!" long before anyone else and then argue over whether her sheet actually warranted her claim, so I was checking her sheet and putting my mark in any square that could legitimately be crossed off.
If she actually got a Daisy, I thought I would know, but in fact I couldn't keep track of her sheet and mine and my Xs vs. her Xs on her sheet.
To add to the confusion, several times the president pulled out a piece of paper and started reading it: "Suela Pearson was--" or "Alice Bird wrote--" but then discarded it, announcing "We already had that one."
There were a few cries of "Are you sure? Are there duplicates in that box?"
I was pretty sure these only seemed to be duplicates. I wanted to hear the rest of the sentence in order to get a Daisy, but not at the cost of challenging the president's competence.
At one point Mom claimed, "We've got a Daisy--that's a Daisy," but I was able to convince her we hadn't actually won.
Finally one P.E.O. got a Daisy, and then another, until there were four winners (each earning a pencil).
With relief, I stopped searching and began to enjoy some of the interesting facts on the sheet:
* P.E.O. started on Jan. 21, 1869.
* One girl didn't get to be invited to a Sorority, so she founded P.E.O.
* The founders got in trouble with the president of Iowa Wesleyan College for wearing pins.
* Self-improvement is a form of education and thus must be called P.E.O.'s first project.
* Mary Allen shared 57 years of ministry with her husband.
Each person has a printed sheet with five columns and five rows, as in a Bingo game.
But in each square there is a sentence of 8-27 words or a phrase such as "One of the seven founders: Alice Coffin."
The president pulls a slip of paper out of a container and reads aloud each sentence, announcing that it is in column D or perhaps column S. Each person looks to see if she has that sentence.
Since there are seven founders, finding a square that begins "One of the seven founders" is not good enough. You have to distinguish it from the other six squares that begin that way.
Likewise, if the president reads, "Suela Pearson used a large wooden crochet hook as a gavel," you have to make sure you don't cross off a square just because it begins with "Suele Pearson...." Suela did five or six other things that each earns a different square.
This is fine if you are just managing one sheet of paper, but I was trying to monitor Mom's paper as well as mine.
She was listening and eagerly crossing off a square each time anything was said. I didn't want her to cry "Daisy!" long before anyone else and then argue over whether her sheet actually warranted her claim, so I was checking her sheet and putting my mark in any square that could legitimately be crossed off.
If she actually got a Daisy, I thought I would know, but in fact I couldn't keep track of her sheet and mine and my Xs vs. her Xs on her sheet.
To add to the confusion, several times the president pulled out a piece of paper and started reading it: "Suela Pearson was--" or "Alice Bird wrote--" but then discarded it, announcing "We already had that one."
There were a few cries of "Are you sure? Are there duplicates in that box?"
I was pretty sure these only seemed to be duplicates. I wanted to hear the rest of the sentence in order to get a Daisy, but not at the cost of challenging the president's competence.
At one point Mom claimed, "We've got a Daisy--that's a Daisy," but I was able to convince her we hadn't actually won.
Finally one P.E.O. got a Daisy, and then another, until there were four winners (each earning a pencil).
With relief, I stopped searching and began to enjoy some of the interesting facts on the sheet:
* P.E.O. started on Jan. 21, 1869.
* One girl didn't get to be invited to a Sorority, so she founded P.E.O.
* The founders got in trouble with the president of Iowa Wesleyan College for wearing pins.
* Self-improvement is a form of education and thus must be called P.E.O.'s first project.
* Mary Allen shared 57 years of ministry with her husband.
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