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.
Friday, March 31, 2006
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.
80% Chance of Craziness
I sat in the living room during the business portion of today's meeting, reading a book, and I could overhear some of the conversation.
My ears perked up when I heard Mom say, "When my mother was at the Chapter House, I made a move that was the worst thing I could do. I brought her to Telluride, at the high altitude, and she died in my arms."
Oh no! Someone must have said something about a local Chapter House, the senior residences owned by P.E.O. for older members.
Mom had taken those words as an opportunity to try to join the conversation by reciting a set speech she has given many times before.
Besides being inappropriate and an interruption to the business, the story was not even true. It was her grandmother who died in her mother's arms in Telluride. Mom's own mother had a stroke one morning while living in the Chapter House in Colorado Springs.
"Yes, Telluride is at 10,000 feet," said someone. "A high altitude."
Someone else murmured appropriate regret at this sad story.
"Does anyone want to make a motion?" Louise continued, as if no one had spoken. "She already paid dues to the other chapter."
And business continued, including the business of making her a member. Thank goodness for their kindness and good sense.
I decided I had made the right decision. If I were sitting next to her in the business meeting, I could hush up any outbursts.
"Should she pay dues to Chapter R too?" asked Louise. "What do the rules say?"
"She can well pay it," said Mom.
"But you may not have to," said Louise, "since you already paid dues to your chapter in Colorado."
"Anne would enjoy it, I'm sure. She's got the money," said Mom.
I wished I were in there to redirect Mom.
They sang "Happy Birthday, dear Evelyn" and to one other member. I told them we would not attend the first meeting in March because I will be out of town.
This morning Mom had insisted on bringing a copy of her autobiography, Adventures of a Telluride Native, to the meeting. I had her sign it "To Chapter R, P.E.O." and they were very gracious about accepting it.
Now I overheard someone saying, "Sign the book out to Dorothy B. Everyone can sign it out when they take it."
"And bring the book back to the next meeting," said Dorothy.
~~~
The meeting ended at 1:30 pm, and Mom was hungry. She didn't have a caregiver arriving until 5 pm, so I took her to my house for lunch.
My goal was to get her back to Ocean View by 3 pm and leave, letting her take a nap in her recliner before dinner. Five and a half hours of care would be enough for one day.
But I didn't get her backto her residence until 4 pm because I helped her sign a couple of notes while she was at my house.
Then at 4 pm the LVN reminded me that Mom needed to have her blood drawn today to check her anti-coagulation.
It had started raining, but off we went by wheelchair to the lab a block away.
Thre, to keep her courage up as the phlebotomist kept trying to find a vein, Mom started singing, to the tune of Jesus Loves Me:
Yes, I love you.
Yes, I love you.
Yes, I love you
When the lights are low.
"It's all because of that crime," she explained. [See earlier blog entry.]
We got back to Ocean View at 4:45 pm, and I took her to the bathroom.
"Turn on the water," she said as usual. She likes it running "to inspire me."
But today she suddenly said, "Turn that off! Water is flooding the bathroom!"
"Okay," I said, surprised. I've never heard her say that before.
"Bring me a pan to put it in," she said next.
I didn't answer her. I finished the toileting and helped her walk to dinner with her walker. Her physical coordination was great.
Eight hours, I thought to myself as I drove home.
How did a P.E.O. meeting turn into eight hours?
But one thing was for sure: I knew I had made the right decision in joining P.E.O. Her thinking and talking was worse today. I can't trust her to sit quietly and behave appropriately during the business meetings.
My ears perked up when I heard Mom say, "When my mother was at the Chapter House, I made a move that was the worst thing I could do. I brought her to Telluride, at the high altitude, and she died in my arms."
Oh no! Someone must have said something about a local Chapter House, the senior residences owned by P.E.O. for older members.
Mom had taken those words as an opportunity to try to join the conversation by reciting a set speech she has given many times before.
Besides being inappropriate and an interruption to the business, the story was not even true. It was her grandmother who died in her mother's arms in Telluride. Mom's own mother had a stroke one morning while living in the Chapter House in Colorado Springs.
"Yes, Telluride is at 10,000 feet," said someone. "A high altitude."
Someone else murmured appropriate regret at this sad story.
"Does anyone want to make a motion?" Louise continued, as if no one had spoken. "She already paid dues to the other chapter."
And business continued, including the business of making her a member. Thank goodness for their kindness and good sense.
I decided I had made the right decision. If I were sitting next to her in the business meeting, I could hush up any outbursts.
"Should she pay dues to Chapter R too?" asked Louise. "What do the rules say?"
"She can well pay it," said Mom.
"But you may not have to," said Louise, "since you already paid dues to your chapter in Colorado."
"Anne would enjoy it, I'm sure. She's got the money," said Mom.
I wished I were in there to redirect Mom.
They sang "Happy Birthday, dear Evelyn" and to one other member. I told them we would not attend the first meeting in March because I will be out of town.
This morning Mom had insisted on bringing a copy of her autobiography, Adventures of a Telluride Native, to the meeting. I had her sign it "To Chapter R, P.E.O." and they were very gracious about accepting it.
Now I overheard someone saying, "Sign the book out to Dorothy B. Everyone can sign it out when they take it."
"And bring the book back to the next meeting," said Dorothy.
~~~
The meeting ended at 1:30 pm, and Mom was hungry. She didn't have a caregiver arriving until 5 pm, so I took her to my house for lunch.
My goal was to get her back to Ocean View by 3 pm and leave, letting her take a nap in her recliner before dinner. Five and a half hours of care would be enough for one day.
But I didn't get her backto her residence until 4 pm because I helped her sign a couple of notes while she was at my house.
Then at 4 pm the LVN reminded me that Mom needed to have her blood drawn today to check her anti-coagulation.
It had started raining, but off we went by wheelchair to the lab a block away.
Thre, to keep her courage up as the phlebotomist kept trying to find a vein, Mom started singing, to the tune of Jesus Loves Me:
Yes, I love you.
Yes, I love you.
Yes, I love you
When the lights are low.
"It's all because of that crime," she explained. [See earlier blog entry.]
We got back to Ocean View at 4:45 pm, and I took her to the bathroom.
"Turn on the water," she said as usual. She likes it running "to inspire me."
But today she suddenly said, "Turn that off! Water is flooding the bathroom!"
"Okay," I said, surprised. I've never heard her say that before.
"Bring me a pan to put it in," she said next.
I didn't answer her. I finished the toileting and helped her walk to dinner with her walker. Her physical coordination was great.
Eight hours, I thought to myself as I drove home.
How did a P.E.O. meeting turn into eight hours?
But one thing was for sure: I knew I had made the right decision in joining P.E.O. Her thinking and talking was worse today. I can't trust her to sit quietly and behave appropriately during the business meetings.
Joining P.E.O.
A week ago I received a formal note from Chapter R with a gold embossed P.E.O. star centered at the top of the small page:
My dear Anne
It is a pleasure to extend to you the invitation of Chapter R State of California to become a member of the P.E.O. Sisterhood.
The Sisterhood is an international organization devoted to charitable projects and to the support and promotion of educational opportunities for women. Close association of members leads to warm and lasting friendships. A member of Chapter R will be in touch with you soon to give you an opportunity to ask questions you may have.
In your written acceptance of this invitation, you are required to affirm your belief in God and to state that you come voluntarily, with a desire to be of service to the Sisterhood.
We look forward to welcoming you to our chapter.
Lovingly,
Louise Taylor
Corresponding Secretary
I debated the pros and cons.
If I joined, I could sit with Mom during the hour or longer business meeting and prevent her from speaking out of turn or otherwise disrupting the meeting.
I know that it used to be a hugely prestigious thing to be invited to join P.E.O. It meant you had made it to the top social group in your community.
But the last thing I need is another organization requiring volunteer work. I am trying to write a book... This would be another distraction from that task.
My lifelong commitments are to Evangelical & Ecumenical Women's Caucus, to NOW, to WomenChurch and the Women's Ordination Conference, to the Religious Coalition for Abortion Rights, the Modern Language Association, the Conference on Christianity & Literature, and other groups.
I am, however, committed to taking Mom to P.E.O. meetings on two mornings per month. Perhaps it would be rude to continue to use this group for Mom's entertainment while sitting outside during the business portion of the meeting and refusing to join.
These women are so kind to admit Mom to their chapter when she is in an advanced stage of dementia. She can't carry on a conversation appropriately or really get to know them in the way she would have ten years ago.
They are all in their mid 70s to 80s... there are no members my age. If I make a commitment to them, I'll have twenty more mothers to take care of--but I would want to stop attending when Mom dies.
A thought crossed my mind: Grandma would want me to join. I banished the thought. There's no point in making a commitment like that for someone who is deceased.
From day to day I decided not to join, then reconsidered it.
What harm could it do?
Answer: it would put your name on a lot more mailing lists and further increase your inability to keep up with your real mail, not to mention your email.
Today I drove Mom to the meeting determined not to join.
But Ellie was so kind to Mom, sitting by her and helping her with the refreshments. Alva Mae was so friendly. Dorothy B. is such a generous, loving, and courageous person, dealing with her husband's LBD and inviting us to attend this chapter of P.E.O.
When the president, Louise Taylor, asked me if I would be joining, I explained "I would not want to join and then just leave when my mother is no longer able to attend."
"Oh, that's no problem," she said. "You could just become inactive--take a leave of absence."
"Oh!" I said. "Well, then--I guess I should join for now."
"Oh yes, you should join," she said.
And that was that. I will send a written acceptance of the invitation, affirming my belief in God and my desire to be of service to the Sisterhood.
You know, a sisterhood founded in 1869 predates modern use of the word sisterhood by a hundred years.
That's kind of cool--like becoming friends with Elizabeth Cady Stanton and Susan B. Anthony.
I'm a sucker for sisterhood of any kind.
My dear Anne
It is a pleasure to extend to you the invitation of Chapter R State of California to become a member of the P.E.O. Sisterhood.
The Sisterhood is an international organization devoted to charitable projects and to the support and promotion of educational opportunities for women. Close association of members leads to warm and lasting friendships. A member of Chapter R will be in touch with you soon to give you an opportunity to ask questions you may have.
In your written acceptance of this invitation, you are required to affirm your belief in God and to state that you come voluntarily, with a desire to be of service to the Sisterhood.
We look forward to welcoming you to our chapter.
Lovingly,
Louise Taylor
Corresponding Secretary
I debated the pros and cons.
If I joined, I could sit with Mom during the hour or longer business meeting and prevent her from speaking out of turn or otherwise disrupting the meeting.
I know that it used to be a hugely prestigious thing to be invited to join P.E.O. It meant you had made it to the top social group in your community.
But the last thing I need is another organization requiring volunteer work. I am trying to write a book... This would be another distraction from that task.
My lifelong commitments are to Evangelical & Ecumenical Women's Caucus, to NOW, to WomenChurch and the Women's Ordination Conference, to the Religious Coalition for Abortion Rights, the Modern Language Association, the Conference on Christianity & Literature, and other groups.
I am, however, committed to taking Mom to P.E.O. meetings on two mornings per month. Perhaps it would be rude to continue to use this group for Mom's entertainment while sitting outside during the business portion of the meeting and refusing to join.
These women are so kind to admit Mom to their chapter when she is in an advanced stage of dementia. She can't carry on a conversation appropriately or really get to know them in the way she would have ten years ago.
They are all in their mid 70s to 80s... there are no members my age. If I make a commitment to them, I'll have twenty more mothers to take care of--but I would want to stop attending when Mom dies.
A thought crossed my mind: Grandma would want me to join. I banished the thought. There's no point in making a commitment like that for someone who is deceased.
From day to day I decided not to join, then reconsidered it.
What harm could it do?
Answer: it would put your name on a lot more mailing lists and further increase your inability to keep up with your real mail, not to mention your email.
Today I drove Mom to the meeting determined not to join.
But Ellie was so kind to Mom, sitting by her and helping her with the refreshments. Alva Mae was so friendly. Dorothy B. is such a generous, loving, and courageous person, dealing with her husband's LBD and inviting us to attend this chapter of P.E.O.
When the president, Louise Taylor, asked me if I would be joining, I explained "I would not want to join and then just leave when my mother is no longer able to attend."
"Oh, that's no problem," she said. "You could just become inactive--take a leave of absence."
"Oh!" I said. "Well, then--I guess I should join for now."
"Oh yes, you should join," she said.
And that was that. I will send a written acceptance of the invitation, affirming my belief in God and my desire to be of service to the Sisterhood.
You know, a sisterhood founded in 1869 predates modern use of the word sisterhood by a hundred years.
That's kind of cool--like becoming friends with Elizabeth Cady Stanton and Susan B. Anthony.
I'm a sucker for sisterhood of any kind.
Thursday, February 16, 2006
Nose over Toes
"Nose over Toes is coming today," Mom told her caregiver this morning.
She is losing touch with the names of people, including her children.
Sometimes she calls me "Mother," especially if some event involves pain.
A few days ago when she had removed her new lower plate because it was hurting her gum, I said, "Let's just put it in and see what the problem is."
"No, Mother, don't make me do it!" she cried, out of some deep reflexive part of her brain.
Today my sister, Emily, came to visit her in the afternoon. Emily is a registered physical therapist and has worked with Mom on her walking over the last few years, often saying "Nose over toes!"
She brought a box of chocolates and two Valentine balloons tied to a weight to hold them down. Mom was sure that the weight, which looked like two bright red hearts, could be opened to reveal more candy.
There was a "Sweetheart Dance" at Ocean View Assisted Living tonight. At first I had to laugh at the thought of a dance with most of the residents using walkers or in wheelchairs.
"We'll skip this one," I thought.
But then I realized that the event was probably just a Valentine's Day party with live music. Mom might enjoy going, watching, and having some refreshments. I made a reservation for Mom and her evening caregiver, who both enjoyed it, but I didn't go.
~~~
Our brothers Bill in Washington state and Jim in Colorado are blending together in Mom's mind, along with my husband John and her three brothers. She doesn't often use the names of Bill or Jim, and when she does, she might be talking about her brothers.
Names are fading, but gender is still firmly entrenched. She never uses a male relative's name to talk about a female relative (or vice versa).
~~~
[Today was my day off, so today's events are compiled from a call to the caregiver to see how things were going.]
She is losing touch with the names of people, including her children.
Sometimes she calls me "Mother," especially if some event involves pain.
A few days ago when she had removed her new lower plate because it was hurting her gum, I said, "Let's just put it in and see what the problem is."
"No, Mother, don't make me do it!" she cried, out of some deep reflexive part of her brain.
Today my sister, Emily, came to visit her in the afternoon. Emily is a registered physical therapist and has worked with Mom on her walking over the last few years, often saying "Nose over toes!"
She brought a box of chocolates and two Valentine balloons tied to a weight to hold them down. Mom was sure that the weight, which looked like two bright red hearts, could be opened to reveal more candy.
There was a "Sweetheart Dance" at Ocean View Assisted Living tonight. At first I had to laugh at the thought of a dance with most of the residents using walkers or in wheelchairs.
"We'll skip this one," I thought.
But then I realized that the event was probably just a Valentine's Day party with live music. Mom might enjoy going, watching, and having some refreshments. I made a reservation for Mom and her evening caregiver, who both enjoyed it, but I didn't go.
~~~
Our brothers Bill in Washington state and Jim in Colorado are blending together in Mom's mind, along with my husband John and her three brothers. She doesn't often use the names of Bill or Jim, and when she does, she might be talking about her brothers.
Names are fading, but gender is still firmly entrenched. She never uses a male relative's name to talk about a female relative (or vice versa).
~~~
[Today was my day off, so today's events are compiled from a call to the caregiver to see how things were going.]
Wednesday, February 15, 2006
Sadness and Decisions
There's a hush over the Reminiscence Neighborhood when I arrive today at 2:30 pm. A caregiver walks past with a tear-stained face.
"Lulu died an hour ago," another caregiver tells me. "They took her body away on a stretcher."
"Oh, poor darling," I answer. "She was such a sweet person."
My mother and the other residents have been protected from knowing about her death.
Lois G. and her husband Arthur arrived less than a year ago. His room was on another floor of Ocean View Assisted Living; hers was on the floor for Alzheimer's and other forms of dementia, where Mom lives. He was wheel-chair bound but took the elevator up to visit her daily, zipping around the building in his motorized wheelchair. Earlier he had been a state senator in Minnesota. Now he was working on a book and keeping up with the newspapers daily.
She was cheerful and good-natured but completely lost. Her speech did not come out in recognizable words but in babbled syllables--only the intonation sounded right.
She sat at meals eating with her hands and talking cheerfully with others at her table--until her husband died.
This happened a few months ago, the result of a heart attack, I believe.
Lois, known as Lulu, understood that he was gone. She grieved for him.
A day and a half ago a hospice caregiver asked me to help him transfer Lois from the wheelchair to her bed. Her room was near Mom's, and no real staff member was handy. New to the building, he thought I was a PT. (Remind me not to wear jeans, a t-shirt, and a lanyard with keys on it around my neck.)
I helped him and realized that Lois was failing fast. She wasn't talking or alert.
"She can't swallow," he said. "She's on hospice."
So that was why I'd seen two of her daughters hovering around the floor in the last few days. They knew she was dying.
They had made the tough decision about what to do when a loved one whose brain is deteriorating gets to the point that he or she is unable to swallow.
~~~
The choices are intubation--feeding by a tube inserted into the stomach--or the natural consequences of not eating and drinking.
This decision lies ahead for us. My sister, Emily, wants the four of us to talk and decide what to do before the moment of crisis comes.
Should the death be "natural" and come fairly soon after Mom loses the ability to swallow?
Or should her life be lengthened by the use of a feeding tube? A few years ago Mom signed a statement saying she doesn't want extraordinary measures like this, but if we asked her now, she might want to do anything necessary to keep living.
Emily points out that once you insert a feeding tube, you may later be faced with the decision of whether to remove it, after the patient's health has declined. It may be easier not to insert it.
Another possibility is that the person who was dementia and a feeding tube might fiddle with it and try to pull it out.
~~~
"What a hard job you have," I always tell Marnie, one of my favorite caregivers. "It's not like caring for babies or children. You grow to love the residents, and then they die."
"Yes," she says, today with tears in her eyes.
It's a calling for the saints, the Mother Teresas of this world--to care for elderly people afflicted with dementia, trying to keep them happy, safe, and comfortable in their last months and years.
"Lulu died an hour ago," another caregiver tells me. "They took her body away on a stretcher."
"Oh, poor darling," I answer. "She was such a sweet person."
My mother and the other residents have been protected from knowing about her death.
Lois G. and her husband Arthur arrived less than a year ago. His room was on another floor of Ocean View Assisted Living; hers was on the floor for Alzheimer's and other forms of dementia, where Mom lives. He was wheel-chair bound but took the elevator up to visit her daily, zipping around the building in his motorized wheelchair. Earlier he had been a state senator in Minnesota. Now he was working on a book and keeping up with the newspapers daily.
She was cheerful and good-natured but completely lost. Her speech did not come out in recognizable words but in babbled syllables--only the intonation sounded right.
She sat at meals eating with her hands and talking cheerfully with others at her table--until her husband died.
This happened a few months ago, the result of a heart attack, I believe.
Lois, known as Lulu, understood that he was gone. She grieved for him.
A day and a half ago a hospice caregiver asked me to help him transfer Lois from the wheelchair to her bed. Her room was near Mom's, and no real staff member was handy. New to the building, he thought I was a PT. (Remind me not to wear jeans, a t-shirt, and a lanyard with keys on it around my neck.)
I helped him and realized that Lois was failing fast. She wasn't talking or alert.
"She can't swallow," he said. "She's on hospice."
So that was why I'd seen two of her daughters hovering around the floor in the last few days. They knew she was dying.
They had made the tough decision about what to do when a loved one whose brain is deteriorating gets to the point that he or she is unable to swallow.
~~~
The choices are intubation--feeding by a tube inserted into the stomach--or the natural consequences of not eating and drinking.
This decision lies ahead for us. My sister, Emily, wants the four of us to talk and decide what to do before the moment of crisis comes.
Should the death be "natural" and come fairly soon after Mom loses the ability to swallow?
Or should her life be lengthened by the use of a feeding tube? A few years ago Mom signed a statement saying she doesn't want extraordinary measures like this, but if we asked her now, she might want to do anything necessary to keep living.
Emily points out that once you insert a feeding tube, you may later be faced with the decision of whether to remove it, after the patient's health has declined. It may be easier not to insert it.
Another possibility is that the person who was dementia and a feeding tube might fiddle with it and try to pull it out.
~~~
"What a hard job you have," I always tell Marnie, one of my favorite caregivers. "It's not like caring for babies or children. You grow to love the residents, and then they die."
"Yes," she says, today with tears in her eyes.
It's a calling for the saints, the Mother Teresas of this world--to care for elderly people afflicted with dementia, trying to keep them happy, safe, and comfortable in their last months and years.
Genetic Risk or Not?
Most reports say that children of LBD patients do not have a clear genetic risk for the disease.
But the children of Alzheimer's patients do have a risk factor.
"Q & A: Late-onset Alzheimer's" in USA Today, 2/14/06, reports that a study of twins shows a definite genetic risk for this illness.
"...genetic factors accounted for 58% to 79% of the risk of developing late-onset Alzheimer's."
Factors such as lifestyle and other diseases made up the rest of the risk.
"According to the Alzheimer's Association, the risk is two or three times higher than for someone who does not have a family history of the disease." http://www.alz.org
Dr. Margaret Gatz of the University of Southern California is interviewed by the USA Today reporter, following a study published in February in Archives of General Psychiatry.
~~~
In Time Magazine's special issue "The Year in Medicine from A to Z" (Dec. 5, 2005), a short notice on Alzheimer's lists one of the factors that can cause the disease:
"...inflammation caused by lost or loose teeth, and the resulting infection, can quadruple the risk of developing Alzheimer's. Treating those inflammatory episodes could help stave off the disease" p. 63.
Mom replaced the teeth in her upper jaw and four teeth in her lower jaw when she was in her early forties. I wonder if there was infection present and whether it affected her brain.
But the children of Alzheimer's patients do have a risk factor.
"Q & A: Late-onset Alzheimer's" in USA Today, 2/14/06, reports that a study of twins shows a definite genetic risk for this illness.
"...genetic factors accounted for 58% to 79% of the risk of developing late-onset Alzheimer's."
Factors such as lifestyle and other diseases made up the rest of the risk.
"According to the Alzheimer's Association, the risk is two or three times higher than for someone who does not have a family history of the disease." http://www.alz.org
Dr. Margaret Gatz of the University of Southern California is interviewed by the USA Today reporter, following a study published in February in Archives of General Psychiatry.
~~~
In Time Magazine's special issue "The Year in Medicine from A to Z" (Dec. 5, 2005), a short notice on Alzheimer's lists one of the factors that can cause the disease:
"...inflammation caused by lost or loose teeth, and the resulting infection, can quadruple the risk of developing Alzheimer's. Treating those inflammatory episodes could help stave off the disease" p. 63.
Mom replaced the teeth in her upper jaw and four teeth in her lower jaw when she was in her early forties. I wonder if there was infection present and whether it affected her brain.
Tuesday, February 14, 2006
Mystery Solved
The noises on Sunday night that Mom reported with agitation on Monday afternoon were real, but they were not her Posey alarm.
I went to Ocean View last night at 11 pm to find out what was happening, and it turned out to be her Motorola walkie-talkie.
First I checked on her and all was well, so I talked with the two caregivers on duty and reviewed various events in her care at night in the last ten days.
"Did anything happen last night? Is there anything written in the log book about her?" I asked.
"Sometimes there are things that I don't want to write down, that I need to discuss with you personally," Rose began.
I didn't get it until she said, "Masturbation."
After several months free of that problem, the behavior has turned up again in the last week, as Jona mentioned to me a few days ago. So Rose and I discussed it and the Posey alarm, and I went to check on Mom one last time before going back home.
When I walked into the room, the walkie-talkie on her bedside table was beeping and emitting short bursts of static, followed by a man's voice speaking.
So that's what the noise was. No wonder she was exasperated and hadn't been able to sleep last night, though she was sleeping deeply at this point.
Someone else was using the same radio frequency, Channel 1. It wasn't anyone on her floor of Ocean View, so I figured it could be anyone in the adjoining buildings.
It took me a while to find the instructions and figure out how to change the channel. I tried channel 3, and it seemed to be free of any other conversations, for the moment.
I gave a Valentine's bag of Hershey's kisses to the caregivers and went home, relieved that I had been able to find the problem and maybe even solve it.
I went to Ocean View last night at 11 pm to find out what was happening, and it turned out to be her Motorola walkie-talkie.
First I checked on her and all was well, so I talked with the two caregivers on duty and reviewed various events in her care at night in the last ten days.
"Did anything happen last night? Is there anything written in the log book about her?" I asked.
"Sometimes there are things that I don't want to write down, that I need to discuss with you personally," Rose began.
I didn't get it until she said, "Masturbation."
After several months free of that problem, the behavior has turned up again in the last week, as Jona mentioned to me a few days ago. So Rose and I discussed it and the Posey alarm, and I went to check on Mom one last time before going back home.
When I walked into the room, the walkie-talkie on her bedside table was beeping and emitting short bursts of static, followed by a man's voice speaking.
So that's what the noise was. No wonder she was exasperated and hadn't been able to sleep last night, though she was sleeping deeply at this point.
Someone else was using the same radio frequency, Channel 1. It wasn't anyone on her floor of Ocean View, so I figured it could be anyone in the adjoining buildings.
It took me a while to find the instructions and figure out how to change the channel. I tried channel 3, and it seemed to be free of any other conversations, for the moment.
I gave a Valentine's bag of Hershey's kisses to the caregivers and went home, relieved that I had been able to find the problem and maybe even solve it.
Monday, February 13, 2006
Drugs and Dementia
The Health section in today's Los Angeles Times (2/13/06) features a helpful article, "Turmoil in life's final chapter," about the use of drugs in treating dementia-related disorders.
You can access it at http://www.latimes.com/features/health/la-he-geriatric13feb13,1,4337121.story?coll=la-headlines-health.
"It's not the grown child's name forgotten or the pill not taken or the suddenly lost sense of place that drives the elderly from homes to institutions, but the unmanageable aggression, the uncontrolled paranoia, the inappropriate sexual behavior that ultimately afflict 90% of those who suffer from dementia," the article by Marianne Szegedy-Mazak begins.
A sampling of statistics, which she takes from the Alzheimer's Association, www.alz.org:
Dementia "affects one person in 20 over age 65 and one person in five over age 65."
Alzheimer's disease "accounts for 55% of all cases of dementia."
(Lewy Body Disease is not mentioned, but it has been estimated as the second leading cause of dementia.)
Seniors make up 13% of the population and account for 34% of all presciptions dispensed, according to Families USA, a consumer health organization.
The article discusses older antipsychotic medicines and their sometimes-serious side effects, contrasting them with the newer "atypical" antipsychotics.
In a side bar, the writer lists non-drug means of preventing or calming agitation, such as exercise, a distraction such as snacks or a video, or a soothing repetitive activity such as massage, hair brushing, or manicure.
Drugs that have not worked well with my mother include:
Ambien (zolpidem)--It was addictive and increased her confusion. In 2002 she was taking one at bedtime, one in the middle of the night, and one in the afternoon before we discovered and stopped it.
Restoril (temazepam, a benzodiazepine)--It's a sedative, given to her in May 2004, when she was hospitalized for ten days "for observation" after agitated behavior. It knocked her out. She was unrousable, could hardly sit up. There was no behavior left to observe. My sister and I had it discontinued as soon as we realized what was happening.
Ativan (lorazepam, a benzodiazepine)--This sedative was given to her in June 2005 when she was hospitalized after being without oxygen briefly because of angioedema (swelling) of the throat and tongue. It had her so sedated that she was unrousable and unresponsive--could not open her eyes or move her hand on command. Because of this medication, used partly to rest her brain and prevent seizures, she appeared to have more brain damage from the lack of oxygen than she actually did.
Drugs that seem okay so far:
Mom was also given Dilantin (phenytoin) , an anti-seizure medication, during this hospitalization because she had seizures when her brain was deprived of oxygen. Afterward she was given Keppra (levetiracetam), another anti-seizure medication, for six months. The Keppra made her sleepy, so her dose was reduced; otherwise she tolerated it pretty well.
She took Seroquel (an antipsychotic and antihallucinogen) briefly in June 2004 without any bad effects, as well as Desyrel (trazodone), an antidepressant and SSRI.
She took Celexa (citalopram), an SSRI, for almost two years before it was discontinued when she had the unexplained allergic reaction in June 2005.
Warning:
Mom's neurologist, Dr. Claudia Kawas, said Lewy Body patients should avoid antipsychotics like Haldol and Rispirdal. Dr. K also discontinued the Darvocet (propoxyphene) Mom was taking as a painkiller when Dr. K first saw her in April 2004.
"The patient's apparent intolerance of antipsychotics could also point to Lewy body etiology... Given Mrs. Eggebroten's intolerance of neuroleptics, it might also be expected that she would have difficulty tolerating seizure medications as well" wrote Dr. K (1/5/05).
She suggested using tricyclic antidepressants (TCAs) because they suppress dreams as well as lifting depression.
Current medications:
Mom now takes Remeron (mirtazapine), a tetracyclic antidepressant; she also takes Exelon to slow the deterioration of her brain. She has also taken Namenda, similar to Exelon, in the past.
Currently her health is well stabilized by her various medications, which include Coumadin and others for ills unrelated to her brain.
You can access it at http://www.latimes.com/features/health/la-he-geriatric13feb13,1,4337121.story?coll=la-headlines-health.
"It's not the grown child's name forgotten or the pill not taken or the suddenly lost sense of place that drives the elderly from homes to institutions, but the unmanageable aggression, the uncontrolled paranoia, the inappropriate sexual behavior that ultimately afflict 90% of those who suffer from dementia," the article by Marianne Szegedy-Mazak begins.
A sampling of statistics, which she takes from the Alzheimer's Association, www.alz.org:
Dementia "affects one person in 20 over age 65 and one person in five over age 65."
Alzheimer's disease "accounts for 55% of all cases of dementia."
(Lewy Body Disease is not mentioned, but it has been estimated as the second leading cause of dementia.)
Seniors make up 13% of the population and account for 34% of all presciptions dispensed, according to Families USA, a consumer health organization.
The article discusses older antipsychotic medicines and their sometimes-serious side effects, contrasting them with the newer "atypical" antipsychotics.
In a side bar, the writer lists non-drug means of preventing or calming agitation, such as exercise, a distraction such as snacks or a video, or a soothing repetitive activity such as massage, hair brushing, or manicure.
Drugs that have not worked well with my mother include:
Ambien (zolpidem)--It was addictive and increased her confusion. In 2002 she was taking one at bedtime, one in the middle of the night, and one in the afternoon before we discovered and stopped it.
Restoril (temazepam, a benzodiazepine)--It's a sedative, given to her in May 2004, when she was hospitalized for ten days "for observation" after agitated behavior. It knocked her out. She was unrousable, could hardly sit up. There was no behavior left to observe. My sister and I had it discontinued as soon as we realized what was happening.
Ativan (lorazepam, a benzodiazepine)--This sedative was given to her in June 2005 when she was hospitalized after being without oxygen briefly because of angioedema (swelling) of the throat and tongue. It had her so sedated that she was unrousable and unresponsive--could not open her eyes or move her hand on command. Because of this medication, used partly to rest her brain and prevent seizures, she appeared to have more brain damage from the lack of oxygen than she actually did.
Drugs that seem okay so far:
Mom was also given Dilantin (phenytoin) , an anti-seizure medication, during this hospitalization because she had seizures when her brain was deprived of oxygen. Afterward she was given Keppra (levetiracetam), another anti-seizure medication, for six months. The Keppra made her sleepy, so her dose was reduced; otherwise she tolerated it pretty well.
She took Seroquel (an antipsychotic and antihallucinogen) briefly in June 2004 without any bad effects, as well as Desyrel (trazodone), an antidepressant and SSRI.
She took Celexa (citalopram), an SSRI, for almost two years before it was discontinued when she had the unexplained allergic reaction in June 2005.
Warning:
Mom's neurologist, Dr. Claudia Kawas, said Lewy Body patients should avoid antipsychotics like Haldol and Rispirdal. Dr. K also discontinued the Darvocet (propoxyphene) Mom was taking as a painkiller when Dr. K first saw her in April 2004.
"The patient's apparent intolerance of antipsychotics could also point to Lewy body etiology... Given Mrs. Eggebroten's intolerance of neuroleptics, it might also be expected that she would have difficulty tolerating seizure medications as well" wrote Dr. K (1/5/05).
She suggested using tricyclic antidepressants (TCAs) because they suppress dreams as well as lifting depression.
Current medications:
Mom now takes Remeron (mirtazapine), a tetracyclic antidepressant; she also takes Exelon to slow the deterioration of her brain. She has also taken Namenda, similar to Exelon, in the past.
Currently her health is well stabilized by her various medications, which include Coumadin and others for ills unrelated to her brain.
Snookered Again
I was planning to see Mom for just an hour and a half today, but when I arrived she had four emergencies to tell me about. It turned into three and a half hours.
Her early morning caregiver, Jona, leaves at 2 pm, and her afternoon caregiver doesn't arrive until 5 pm on Monday, Wednesday, and Friday.
My plan was to arrive at 2:30, take her to pick up her opal ring, and leave her in the common room at 4 pm waiting for dinner.
But she was awake and agitated when I walked into the room.
"Oh Anne, I didn't sleep all night. The phone kept ringing and someone was talking. I won't sleep in that bed another night. I'll have to go to a motel or sleep at your house."
I mumbled a few inquiries and wondered if the ringing was the Posey alarm. I had taken the whole bed apart yesterday to reposition the alarm and keep it from going off when she just shifts her weight in the bed.
"And that new plate is terribly painful. I can't wear it. I told the girl I will not have it."
Wow--all those trips to the dentist, and now four days after getting the new plate, it hurts her jaw?
"But you didn't have any trouble eating the Kentucky Fried Chicken with it yesterday," I argued. "Here, show me your mouth. Let's put the new plate in and see where it hurts."
She screamed when I tried to do this. "No, I'm not going to have that in my mouth!"
"I see you got your hair done," I countered.
"I nearly fell out of the chair at the beauty shop, and she had to yell at that girl and tell her to get out of her chair and help me."
"Well, that's good that she helped you. What are you watching on television?"
"Love potions are really true. The man who owns this whole place had a love potion. He wants to screw me all the time, and there's nothing I can do but accept it."
By this time my can-do attitude had dissolved nearly into tears. The Posey alarm was not working right, the lower partial plate was not fitting, some scene had taken place in the residence beauty shop, and she was having Valentine's Day hallucinations.
I had come to make a brief visit, but now I had to start problem solving. The first problem was to figure out whether any of these stories had any basis in reality.
I went to ask the staff if any notes had been written up last night on her not sleeping or a problem with her Posey alarm. No problems had been recorded or reported to the day staff. Maybe it was all in her head--but I resolved to come back at 11 pm and check in with the night staff. I hadn't made a night visit lately.
There were two options with the partial lower plate: put it in a drawer and forget it, or make another dentist appointment. I really really didn't want to go see him again. She has swallowed a tooth, lost a lower plate, and sat in the dental chair with bm in her Depend. Just walking in the door is embarrassing.
But the alternative was letting $1750 go down the drain. I called his office.
"Oh, come right over," Xuje invited. "He can take a look at it this afternoon."
I accepted and took Mom to the bathroom eliminate any surprises in that department.
Dr. Feder was cheerful and kind. I thought Mom might refuse to let him put the plate in, as she had done with me, but she cooperated.
"Mmmm--Ah! Mm-da-eeeeeh-aaaaaahh," she said, making a running nonverbal commentary as he poked around. It was the kind of sounds you might hear from someone walking a tightrope--not quite what you might hear from someone riding a rollercoaster.
"Mom, shh! Don't talk! Just be quiet while he works on you," I pleaded.
"Oh, it's all right," he said. "I don't mind her singing."
He claimed to have found one edge to be a little sharper than the other and went to grind it down. When he came back and popped it in her mouth, she didn't complain.
"Oh, thank you!" I exclaimed, completely amazed.
"No problem--come back any time," he said with a smile.
"We'll try not to," I said grimly.
"No, really," he insisted. "It's always a pleasure to see you, Evelyn."
Somehow we got out of there. I swear I will never enter that door again for six months.
Next stop: picking up the opal ring, which we had left yesterday to be soldered onto a gold band to keep it from slipping around into her palm.
Maybe the only thing more embarrassing than daily crisis-related trips to the dentist's office is arriving at Whitehall Jewellers and having all four sales clerks extend a warm greeting like next-door neighbors.
We've bought two or three rings there, plus Christmas gifts; had a ring sized larger when her hand was swollen and sized down when the hand recovered; bought a gold band to hold the opal in place, and now had the opal and band welded together.
"Hi! Good to see you! What a nice outfit you have her in today," they began.
But it turned out the ring, promised for 3 pm, was not ready. I had not called to check on it before bringing Mom to the mall.
"He's had a high volume of work with Valentine's Day," they reported. "But he'll get to it right now. Could you come back in forty-five minutes or an hour?"
Gee, why not? So Mom got a little spin around the mall, finding an ice cream shop and getting a butter pecan cone, of course.
With half an hour still to kill, I decided to head up the street to the Borders bookstore. I deserved a treat too.
Somehow we dawdled until after 5 pm, got the ring, and arrived back at Ocean View. I handed her over to her 5 pm to 11 pm caregiver, explaining about the alleged noise at night.
Now all I have to do is go back at 11:30 or so and figure out why she had a wild story about last night.
Her early morning caregiver, Jona, leaves at 2 pm, and her afternoon caregiver doesn't arrive until 5 pm on Monday, Wednesday, and Friday.
My plan was to arrive at 2:30, take her to pick up her opal ring, and leave her in the common room at 4 pm waiting for dinner.
But she was awake and agitated when I walked into the room.
"Oh Anne, I didn't sleep all night. The phone kept ringing and someone was talking. I won't sleep in that bed another night. I'll have to go to a motel or sleep at your house."
I mumbled a few inquiries and wondered if the ringing was the Posey alarm. I had taken the whole bed apart yesterday to reposition the alarm and keep it from going off when she just shifts her weight in the bed.
"And that new plate is terribly painful. I can't wear it. I told the girl I will not have it."
Wow--all those trips to the dentist, and now four days after getting the new plate, it hurts her jaw?
"But you didn't have any trouble eating the Kentucky Fried Chicken with it yesterday," I argued. "Here, show me your mouth. Let's put the new plate in and see where it hurts."
She screamed when I tried to do this. "No, I'm not going to have that in my mouth!"
"I see you got your hair done," I countered.
"I nearly fell out of the chair at the beauty shop, and she had to yell at that girl and tell her to get out of her chair and help me."
"Well, that's good that she helped you. What are you watching on television?"
"Love potions are really true. The man who owns this whole place had a love potion. He wants to screw me all the time, and there's nothing I can do but accept it."
By this time my can-do attitude had dissolved nearly into tears. The Posey alarm was not working right, the lower partial plate was not fitting, some scene had taken place in the residence beauty shop, and she was having Valentine's Day hallucinations.
I had come to make a brief visit, but now I had to start problem solving. The first problem was to figure out whether any of these stories had any basis in reality.
I went to ask the staff if any notes had been written up last night on her not sleeping or a problem with her Posey alarm. No problems had been recorded or reported to the day staff. Maybe it was all in her head--but I resolved to come back at 11 pm and check in with the night staff. I hadn't made a night visit lately.
There were two options with the partial lower plate: put it in a drawer and forget it, or make another dentist appointment. I really really didn't want to go see him again. She has swallowed a tooth, lost a lower plate, and sat in the dental chair with bm in her Depend. Just walking in the door is embarrassing.
But the alternative was letting $1750 go down the drain. I called his office.
"Oh, come right over," Xuje invited. "He can take a look at it this afternoon."
I accepted and took Mom to the bathroom eliminate any surprises in that department.
Dr. Feder was cheerful and kind. I thought Mom might refuse to let him put the plate in, as she had done with me, but she cooperated.
"Mmmm--Ah! Mm-da-eeeeeh-aaaaaahh," she said, making a running nonverbal commentary as he poked around. It was the kind of sounds you might hear from someone walking a tightrope--not quite what you might hear from someone riding a rollercoaster.
"Mom, shh! Don't talk! Just be quiet while he works on you," I pleaded.
"Oh, it's all right," he said. "I don't mind her singing."
He claimed to have found one edge to be a little sharper than the other and went to grind it down. When he came back and popped it in her mouth, she didn't complain.
"Oh, thank you!" I exclaimed, completely amazed.
"No problem--come back any time," he said with a smile.
"We'll try not to," I said grimly.
"No, really," he insisted. "It's always a pleasure to see you, Evelyn."
Somehow we got out of there. I swear I will never enter that door again for six months.
Next stop: picking up the opal ring, which we had left yesterday to be soldered onto a gold band to keep it from slipping around into her palm.
Maybe the only thing more embarrassing than daily crisis-related trips to the dentist's office is arriving at Whitehall Jewellers and having all four sales clerks extend a warm greeting like next-door neighbors.
We've bought two or three rings there, plus Christmas gifts; had a ring sized larger when her hand was swollen and sized down when the hand recovered; bought a gold band to hold the opal in place, and now had the opal and band welded together.
"Hi! Good to see you! What a nice outfit you have her in today," they began.
But it turned out the ring, promised for 3 pm, was not ready. I had not called to check on it before bringing Mom to the mall.
"He's had a high volume of work with Valentine's Day," they reported. "But he'll get to it right now. Could you come back in forty-five minutes or an hour?"
Gee, why not? So Mom got a little spin around the mall, finding an ice cream shop and getting a butter pecan cone, of course.
With half an hour still to kill, I decided to head up the street to the Borders bookstore. I deserved a treat too.
Somehow we dawdled until after 5 pm, got the ring, and arrived back at Ocean View. I handed her over to her 5 pm to 11 pm caregiver, explaining about the alleged noise at night.
Now all I have to do is go back at 11:30 or so and figure out why she had a wild story about last night.
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