One of the ironies of Mom's life is that every six months she has to sign a statement that she has not remarried. If we do not get these pieces of paper sent in, her US military annuitant paychecks stop coming.
Never mind that she is 88 years old, incontinent, afflicted with dementia, and in a wheelchair.
The US military thinks she might remarry. She became a widow in 1993, and it's now 2007, but they're convinced she might still scare up a suitor or two.
Here's the letter they send:
Certificate of Eligibility
We have not received the Certificate of Eligibility (COE) we previously sent you.
We have suspended your annuity until we receive a completed COE.
Please complete, sign, and return this COE to Defense Finance & Accounting Services, US Military Annuitant Pay, PO Box 7131, London, KY 40742-7131.
If you have any questions, call toll free 1-800-321-1080.
Your marital status is required to update your account, please attach a copy of your marriage certificate.
___ I did not marry in the past year.
___ I married in the past year (please attach a copy of your marriage certificate).
Nothing I write to them on these forms can convince them that she is in imminent danger of remarrying and thus becoming disqualified for this pension.
Maybe we should fly to Kentucky and present the evidence.
I don't explain the form to Mom any more, joking that they wonder if she remarried.
It just starts her thinking and talking about the delicious possibility of remarrying.
Saturday, June 16, 2007
An Animated Day
When I arrived at Mom's room at 3:45 pm, I found her telling stories with delight and great animation to two caregivers, Susan and Christina.
She sat in her wheelchair talking and laughing, her pink face full of life and joy.
They stood there watching her and laughing at her tales about her husband.
"So you enjoyed your husband. He was a good man. Here's Anne," they said finally after I watched for a few moments.
"Yes, and she's the product!" Mom exclaimed.
They laughed.
She wanted to go out and get French fries, to do something.
I'd been planning to take her to my house, in case my kids might be around for her to enjoy, but then I decided just to wheel her to the local deli to get French fries, as well as pick up that tube of Calmoseptine I'd reserved at the medical products store.
But as we were going out the door, my daughter Roz called on my cell phone. I wanted to talk to her, so I kept talking while pushing the wheelchair to Wilshire. Whenever I paused and just stood at an intersection talking, Mom demanded to know where we were going and why, so I pushed her to Von's, bought some kitchen waste bin liners, walked to the health store which had closed a half hour earlier, and went to the deli.
I tried to put the cell phone to her ear for her to listen and talk to Roz, but it didn't work. She doesn't hear phones or cell phones well any more.
Finally I ended the conversation, got the fries, and wheeled her back to her residence.
There she was happy to go to dinner and wanted to share her French fries with everyone.
I was able to leave without great angst on her part or mine.
A good day, but when I got home and found that two of my daughters were home, I wished I had brought her here to enjoy talking with them.
She sat in her wheelchair talking and laughing, her pink face full of life and joy.
They stood there watching her and laughing at her tales about her husband.
"So you enjoyed your husband. He was a good man. Here's Anne," they said finally after I watched for a few moments.
"Yes, and she's the product!" Mom exclaimed.
They laughed.
She wanted to go out and get French fries, to do something.
I'd been planning to take her to my house, in case my kids might be around for her to enjoy, but then I decided just to wheel her to the local deli to get French fries, as well as pick up that tube of Calmoseptine I'd reserved at the medical products store.
But as we were going out the door, my daughter Roz called on my cell phone. I wanted to talk to her, so I kept talking while pushing the wheelchair to Wilshire. Whenever I paused and just stood at an intersection talking, Mom demanded to know where we were going and why, so I pushed her to Von's, bought some kitchen waste bin liners, walked to the health store which had closed a half hour earlier, and went to the deli.
I tried to put the cell phone to her ear for her to listen and talk to Roz, but it didn't work. She doesn't hear phones or cell phones well any more.
Finally I ended the conversation, got the fries, and wheeled her back to her residence.
There she was happy to go to dinner and wanted to share her French fries with everyone.
I was able to leave without great angst on her part or mine.
A good day, but when I got home and found that two of my daughters were home, I wished I had brought her here to enjoy talking with them.
Friday, June 15, 2007
A Sleepy Day
Good news: the bacteria causing the UTI is Enterococcus, which is susceptible to Levoquin, but even more to Amoxycillin. So Dr. Rosen will switch her to Amoxycillin and "run the susceptibilities" on the culture just to make sure.
Anyway, she won't have to have an IV, which would necessitate her leaving Sunrise for a week again. That means I can leave for a week, as planned, without having her in the hospital.
With that issue out of the way, I meant to visit Mom at 2 pm and leave for Pasadena at 3:30 pm, to avoid traffic for a dinner date with John and two friends.
But I had other work to do, including writing about Calmoseptine on this blog, so I didn't arrive until 3:45 at her residence.
What if she's talkative, wants to come to my house? I worried.
"She's having a sleepy day," reported Marnie, the head caregiver.
Indeed she was sound asleep in her recliner, unrousable. What a relief that she wasn't going to be demanding and slow me down.
I bustled around setting up a new laundry hamper I'd bought, putting away Depends and Calmoseptine.
Then I tried again to rouse her, and she responded a little. I took her to the bathroom and then asked, "Would you like to go to dinner or go back to your big chair?"
"I want to go to my chair," she answered and I got her all set up therewith pillows, music on the CD player, etc.
"Okay, I'll leave you now," I said, "Unless you want to go to dinner now."
"Oh, I guess I could go to dinner," she said.
So I put her shoes back on, got her in the wheel chair, turned off the music and took her early to dinner.
By then it was 4:40. I ran to the elevator to begin my commute to downtown LA to pick up John and then drive to Pasadena against the traffic for the Dodgers game.
But at least she was happy and had been toileted and had had more stimulation than if I'd left her sitting in the chair.
At least she wasn't sad and whimpering like yesterday. Maybe the antibiotic was working to end the bladder infection.
Anyway, she won't have to have an IV, which would necessitate her leaving Sunrise for a week again. That means I can leave for a week, as planned, without having her in the hospital.
With that issue out of the way, I meant to visit Mom at 2 pm and leave for Pasadena at 3:30 pm, to avoid traffic for a dinner date with John and two friends.
But I had other work to do, including writing about Calmoseptine on this blog, so I didn't arrive until 3:45 at her residence.
What if she's talkative, wants to come to my house? I worried.
"She's having a sleepy day," reported Marnie, the head caregiver.
Indeed she was sound asleep in her recliner, unrousable. What a relief that she wasn't going to be demanding and slow me down.
I bustled around setting up a new laundry hamper I'd bought, putting away Depends and Calmoseptine.
Then I tried again to rouse her, and she responded a little. I took her to the bathroom and then asked, "Would you like to go to dinner or go back to your big chair?"
"I want to go to my chair," she answered and I got her all set up therewith pillows, music on the CD player, etc.
"Okay, I'll leave you now," I said, "Unless you want to go to dinner now."
"Oh, I guess I could go to dinner," she said.
So I put her shoes back on, got her in the wheel chair, turned off the music and took her early to dinner.
By then it was 4:40. I ran to the elevator to begin my commute to downtown LA to pick up John and then drive to Pasadena against the traffic for the Dodgers game.
But at least she was happy and had been toileted and had had more stimulation than if I'd left her sitting in the chair.
At least she wasn't sad and whimpering like yesterday. Maybe the antibiotic was working to end the bladder infection.
Calmoseptine
I feel like I'm about to make a heist as I pull up in front of Long's Drugstore to try to get Calmoseptine.
Will it work? Will I walk out the door with two tubes of the stuff, gloating in victory?
Or will I fail?
These days Calmoseptine is practically a controlled substance. It's not out on the shelf of Rite-Aid or CVS. Why, I don't know. It's not like you could manufacture speed out of it.
I walk in optimistically and find the baby products aisle. Desitin, A & D cream with zinc oxide but no Calmoseptine.
I used to buy the A & D, but when Mom was diagnosed with a stage one bedsore, I learned that Calmoseptine is the best treatment (along with a gel mattress and gel seat for her wheelchair).
So I approach the pharmacists, safely behind their counter.
"Can I help you?" one of them asks.
I contemplate my answer, tempted to reply "That's an interesting question. I hope you can, but I've encountered brick walls at so many other drug stores that I doubt it."
Instead I smile sweetly and say, "Yes, ma'am. Do you have any Calmoseptine?"
"Yes, we do--no, actually we may be out," she answers, checking a shelf behind the counter. "Would you like to order it? We can have it by Monday."
Three days from now I will be in Santa Fe for a conference, so I won't be able to pick it up for ten days. Nevertheless, a tube on order is worth two in some warehouse somewhere.
"Yes," I answer wearily. I've placed orders before at the Rite-Aid I visit on a daily basis. How am I going to remember to pick this up at Long's, where I don't usually shop?
So much for the idea of just walking in and out with Calmoseptine.
"Why isn't the Calmoseptine out on the shelf with the Desitin and other products like that?" I then ask.
"Because there's a cost to us of keeping it out on the shelf," she answers.
I don't know whether she means people will shoplift the stuff or whether it just occupies valuable shelf space where more profitable products could be displayed. I don't ask.
It takes another five minutes to place the order. Then I walk over to the Depends, which I need to buy before my trip, hoping to walk out the door with something anyway and avoid another trip to a drugstore this afternoon when I visit Mom.
The price is $15.49 for a package of 18 refastenables, higher than I've ever seen before. "No!" I say to myself and turn to walk out of the store empty-handed.
But then I'm tempted by the thought of not having to enter another big store today, just visiting Mom and not having to take her shopping.
"My time is worth a couple extra dollars," I decide and take two packages to the check-out counter.
"How are you today? Did you find everything you need?" the checker inquires politely.
"No, actually I didn't," I reply. "You don't have Calmoseptine."
She cheerfully expresses her regret, and I walk out the door with my two $15.49 packages of Depends.
Defeated. Getting into my car to drive off, I realize that I'm upset, close to tears.
Is that crazy or what? Crying because I can't get Calmoseptine?
This morning I'd been reading Psalm 73, which says, "Whom have I in heaven but you? And having you, I desire nothing upon earth."
Except Calmoseptine.
I remember that the Rite-Aid pharmacist said they can't even order Calmoseptine any more; she suggested going to a medical products store.
While driving I call 411 and get the phone number of the store, which is within walking distance of Mom's residence. Maybe I can wheel her there for an outing this afternoon if they have Calmoseptine.
"Yes, we have it," says the clerk after checking the shelf. "Shall I hold it for you?"
"Yes--can I get two tubes?" I ask.
"No, we only have one," she says. "It's $11.95."
"Fine," I answer, my irritation level rising again. This stuff is gold.
I drive on to do other errands: the bank, the dry cleaners, and the small drugstore where I fill my own prescriptions. Why can't these stores keep ten tubes on hand?
Waiting for my prescription of Actonel, I inquire in a low-key way about Calmoseptine. No use getting my hopes up.
"Yes, it's right here," answers the clerk, going to get it off a nearby shelf where the tubes sit with every other skin product, completely accessible to customers.
I'm dumbfounded.
"There are just two tubes," she says. "We need to reorder. It's $7.50."
"Wonderful!" I say, resisting the impulse to hug her and the pharmacist.
Note to myself: buy Calmoseptine here.
And no need to read the front-page story on Newsweek this week, all about the stress of caregiving.
I think I could write it.
Will it work? Will I walk out the door with two tubes of the stuff, gloating in victory?
Or will I fail?
These days Calmoseptine is practically a controlled substance. It's not out on the shelf of Rite-Aid or CVS. Why, I don't know. It's not like you could manufacture speed out of it.
I walk in optimistically and find the baby products aisle. Desitin, A & D cream with zinc oxide but no Calmoseptine.
I used to buy the A & D, but when Mom was diagnosed with a stage one bedsore, I learned that Calmoseptine is the best treatment (along with a gel mattress and gel seat for her wheelchair).
So I approach the pharmacists, safely behind their counter.
"Can I help you?" one of them asks.
I contemplate my answer, tempted to reply "That's an interesting question. I hope you can, but I've encountered brick walls at so many other drug stores that I doubt it."
Instead I smile sweetly and say, "Yes, ma'am. Do you have any Calmoseptine?"
"Yes, we do--no, actually we may be out," she answers, checking a shelf behind the counter. "Would you like to order it? We can have it by Monday."
Three days from now I will be in Santa Fe for a conference, so I won't be able to pick it up for ten days. Nevertheless, a tube on order is worth two in some warehouse somewhere.
"Yes," I answer wearily. I've placed orders before at the Rite-Aid I visit on a daily basis. How am I going to remember to pick this up at Long's, where I don't usually shop?
So much for the idea of just walking in and out with Calmoseptine.
"Why isn't the Calmoseptine out on the shelf with the Desitin and other products like that?" I then ask.
"Because there's a cost to us of keeping it out on the shelf," she answers.
I don't know whether she means people will shoplift the stuff or whether it just occupies valuable shelf space where more profitable products could be displayed. I don't ask.
It takes another five minutes to place the order. Then I walk over to the Depends, which I need to buy before my trip, hoping to walk out the door with something anyway and avoid another trip to a drugstore this afternoon when I visit Mom.
The price is $15.49 for a package of 18 refastenables, higher than I've ever seen before. "No!" I say to myself and turn to walk out of the store empty-handed.
But then I'm tempted by the thought of not having to enter another big store today, just visiting Mom and not having to take her shopping.
"My time is worth a couple extra dollars," I decide and take two packages to the check-out counter.
"How are you today? Did you find everything you need?" the checker inquires politely.
"No, actually I didn't," I reply. "You don't have Calmoseptine."
She cheerfully expresses her regret, and I walk out the door with my two $15.49 packages of Depends.
Defeated. Getting into my car to drive off, I realize that I'm upset, close to tears.
Is that crazy or what? Crying because I can't get Calmoseptine?
This morning I'd been reading Psalm 73, which says, "Whom have I in heaven but you? And having you, I desire nothing upon earth."
Except Calmoseptine.
I remember that the Rite-Aid pharmacist said they can't even order Calmoseptine any more; she suggested going to a medical products store.
While driving I call 411 and get the phone number of the store, which is within walking distance of Mom's residence. Maybe I can wheel her there for an outing this afternoon if they have Calmoseptine.
"Yes, we have it," says the clerk after checking the shelf. "Shall I hold it for you?"
"Yes--can I get two tubes?" I ask.
"No, we only have one," she says. "It's $11.95."
"Fine," I answer, my irritation level rising again. This stuff is gold.
I drive on to do other errands: the bank, the dry cleaners, and the small drugstore where I fill my own prescriptions. Why can't these stores keep ten tubes on hand?
Waiting for my prescription of Actonel, I inquire in a low-key way about Calmoseptine. No use getting my hopes up.
"Yes, it's right here," answers the clerk, going to get it off a nearby shelf where the tubes sit with every other skin product, completely accessible to customers.
I'm dumbfounded.
"There are just two tubes," she says. "We need to reorder. It's $7.50."
"Wonderful!" I say, resisting the impulse to hug her and the pharmacist.
Note to myself: buy Calmoseptine here.
And no need to read the front-page story on Newsweek this week, all about the stress of caregiving.
I think I could write it.
Thursday, June 14, 2007
A Light Day
I only saw Mom briefly today from 12:30 to 1:15 pm.
I knew her private caregiver would come at 2 pm, so I took the day off. I took the Depends and other things I had bought, toileted her, talked to her briefly, and left her in her recliner with '40s music on.
What a relief that two days a week I still pay a caregiver to be with her for eight hours.
I left a note about her bladder infection and rushed off to my own 2 pm therapy appointment.
I knew her private caregiver would come at 2 pm, so I took the day off. I took the Depends and other things I had bought, toileted her, talked to her briefly, and left her in her recliner with '40s music on.
What a relief that two days a week I still pay a caregiver to be with her for eight hours.
I left a note about her bladder infection and rushed off to my own 2 pm therapy appointment.
Wednesday, June 13, 2007
The Missing Rings
It's a great day: no doctor appointments or PT for Mom, just PT for me at 3 pm. But I have the news that she has a serious urinary tract infection.
I arrive at 2:30 pm to take her down for the music program, every Wednesday at 3 pm. Usually they don't take her to that--after all, they have 28 people they could bring to the first floor for it, and she likes to sleep in her recliner in the afternoon.
When I find her and bring her down for it, I immediately notice that her opal ring, usually on the ring finger of her right hand, is missing. In its place are the silver diamond ring and wedding band from her left hand. Her three-pearl ring is on the wrong hand too.
"Where are your rings?" I ask her.
"Take my rings off," she says with agitation. "They're going to steal them. I want to give them to my granddaughters."
I'm confused: did she removed the rings, or did some member of the staff steal them?
I leave a note in the Reminiscence Neighborhood office asking about this, and very quickly Elisa comes to talk to me: "She was agitated today. She take her rings off. I look in her bed, find this one. I can't find the other one."
"Oh, thanks for telling me," I say. "I'll take her bed apart and look for the opal ring."
There it was, on the floor between the bed and the wall. I put it on my hand to take home.
I also took the three-pearl ring, her original engagement ring, worn all her life. No use letting that get lost. Now her only rings are her wedding band with diamond and the other gold band that went with the pearl ring.
After leaving her at the music, I went to PT.
Then I came back at 4:15 pm to check on her. She was exhausted from sitting downstairs for the music since 2:30 pm. Actually, she was too sleeply for dinner.
"I don't want any dinner," she said. "I want to sit in my chair."
I felt that she had to go to dinner, so after toileting I took her into the dining room, even though she was saying, "No, no. I don't want to go to dinner. I want to go to your house."
"Not today," I said, but I was feeling guilty. I really hadn't spent any time with her, and she has a serious bladder infection.
She continued to whimper and to say, "Don't leave me here! I want to go with you. I don't want to eat dinner."
Marnie, the head caregiver, came up to her and said, "I have soup. You like your soup, Evelyn."
"Yes," she agreed.
"I'll give you some soup," she said.
"Okay," Mom said.
"Enjoy your dinner," I said. "I'll see you tomorrow."
"Can't you stay with me?" she asked.
"No, I have to cook dinner," I said. "Marie's waiting for me."
I slipped out of the dining room and off to the elevator to punch in the code that enables my escape from her demands, from the Reminiscence Neighborhood.
But my heart sank with sympathy for her demands as I walked off: she is sick with an infection, confused, just wants to be with me or at my house.
Spending time there caring for her or taking her to appointments is difficult, but leaving is difficult too.
Always I have the feeling that I have not done enough, that she would like me to stay longer.
She's miserable, and I leave feeling miserable about abandoning her.
There's no respite from that sadness. There's only the conviction that I need to take care of myself and accomplish some of my own goals in any given day.
But it's so hard.
I arrive at 2:30 pm to take her down for the music program, every Wednesday at 3 pm. Usually they don't take her to that--after all, they have 28 people they could bring to the first floor for it, and she likes to sleep in her recliner in the afternoon.
When I find her and bring her down for it, I immediately notice that her opal ring, usually on the ring finger of her right hand, is missing. In its place are the silver diamond ring and wedding band from her left hand. Her three-pearl ring is on the wrong hand too.
"Where are your rings?" I ask her.
"Take my rings off," she says with agitation. "They're going to steal them. I want to give them to my granddaughters."
I'm confused: did she removed the rings, or did some member of the staff steal them?
I leave a note in the Reminiscence Neighborhood office asking about this, and very quickly Elisa comes to talk to me: "She was agitated today. She take her rings off. I look in her bed, find this one. I can't find the other one."
"Oh, thanks for telling me," I say. "I'll take her bed apart and look for the opal ring."
There it was, on the floor between the bed and the wall. I put it on my hand to take home.
I also took the three-pearl ring, her original engagement ring, worn all her life. No use letting that get lost. Now her only rings are her wedding band with diamond and the other gold band that went with the pearl ring.
After leaving her at the music, I went to PT.
Then I came back at 4:15 pm to check on her. She was exhausted from sitting downstairs for the music since 2:30 pm. Actually, she was too sleeply for dinner.
"I don't want any dinner," she said. "I want to sit in my chair."
I felt that she had to go to dinner, so after toileting I took her into the dining room, even though she was saying, "No, no. I don't want to go to dinner. I want to go to your house."
"Not today," I said, but I was feeling guilty. I really hadn't spent any time with her, and she has a serious bladder infection.
She continued to whimper and to say, "Don't leave me here! I want to go with you. I don't want to eat dinner."
Marnie, the head caregiver, came up to her and said, "I have soup. You like your soup, Evelyn."
"Yes," she agreed.
"I'll give you some soup," she said.
"Okay," Mom said.
"Enjoy your dinner," I said. "I'll see you tomorrow."
"Can't you stay with me?" she asked.
"No, I have to cook dinner," I said. "Marie's waiting for me."
I slipped out of the dining room and off to the elevator to punch in the code that enables my escape from her demands, from the Reminiscence Neighborhood.
But my heart sank with sympathy for her demands as I walked off: she is sick with an infection, confused, just wants to be with me or at my house.
Spending time there caring for her or taking her to appointments is difficult, but leaving is difficult too.
Always I have the feeling that I have not done enough, that she would like me to stay longer.
She's miserable, and I leave feeling miserable about abandoning her.
There's no respite from that sadness. There's only the conviction that I need to take care of myself and accomplish some of my own goals in any given day.
But it's so hard.
Really Bad UTI
"You were right," said Dr. Rosen when I answered my cell phone. "She has a really bad UTI."
"It was just a wild guess, really," I said. "Because when we were at physical therapy Monday she said 'My bottom hurts.' She'd said that the Thursday before too, when the PT asked her if the range-of-movement exercises were hurting her. We didn't know if it was arthritis in her hips or pelvis from previous fractures or if it was a bladder infection."
"Well, you know your mother," Dr. Rosen insisted. "You know how to interpret what she says. I'm going to start her on Levoquin and when I get the results of the culture we can see where to go from there."
I put down the cell phone and reflected: all that effort yesterday to get the urine sample, and it turns out to have been very important.
She could have had it for weeks without anyone knowing or treating it. Perhaps she did have it for weeks. There's no way to know until she makes some kind of vague statement or becomes really angry and combative.
It's a complete guessing game, and it's up to me. If I am not alert enough to the cues, she will continue to have an infection.
Will this UTI be treatable by antibiotics taken by mouth? Or will she be ordered onto medication by IV again? In that case, she will have to go to skilled nursing or the hospital in order to have the IV.
She has been on Macrodantin (nitrofurantoin), 50 mg at bedtime, for a month in order to prevent bladder infections, but I guess it doesn't combat whatever bacteria she got this time.
If she has a BM in her Depend and sits in it for a while, perhaps there's no antibiotic that can prevent an infection. This occurred on Monday and Tuesday of this week. On Monday when I toileted her after physical therapy, I found a bowel movement in her Depend, and yesterday when she insisted on using the bathroom just before her catheterization, there was a smaller one.
Usually she demands to use the toilet for a BM, but if I don't take the time to invite her to the toilet after lunch, I guess it just happens.
I don't know what to do about this constant threat of bladder infections.
Perhaps in a nursing home they could do catheterizations more often, discovering and treating them sooner. But our try at a nursing home in March was a disaster.
Next week I plan to be out of town, so I'm just grateful we got started on treating this before I fly to Santa Fe.
"It was just a wild guess, really," I said. "Because when we were at physical therapy Monday she said 'My bottom hurts.' She'd said that the Thursday before too, when the PT asked her if the range-of-movement exercises were hurting her. We didn't know if it was arthritis in her hips or pelvis from previous fractures or if it was a bladder infection."
"Well, you know your mother," Dr. Rosen insisted. "You know how to interpret what she says. I'm going to start her on Levoquin and when I get the results of the culture we can see where to go from there."
I put down the cell phone and reflected: all that effort yesterday to get the urine sample, and it turns out to have been very important.
She could have had it for weeks without anyone knowing or treating it. Perhaps she did have it for weeks. There's no way to know until she makes some kind of vague statement or becomes really angry and combative.
It's a complete guessing game, and it's up to me. If I am not alert enough to the cues, she will continue to have an infection.
Will this UTI be treatable by antibiotics taken by mouth? Or will she be ordered onto medication by IV again? In that case, she will have to go to skilled nursing or the hospital in order to have the IV.
She has been on Macrodantin (nitrofurantoin), 50 mg at bedtime, for a month in order to prevent bladder infections, but I guess it doesn't combat whatever bacteria she got this time.
If she has a BM in her Depend and sits in it for a while, perhaps there's no antibiotic that can prevent an infection. This occurred on Monday and Tuesday of this week. On Monday when I toileted her after physical therapy, I found a bowel movement in her Depend, and yesterday when she insisted on using the bathroom just before her catheterization, there was a smaller one.
Usually she demands to use the toilet for a BM, but if I don't take the time to invite her to the toilet after lunch, I guess it just happens.
I don't know what to do about this constant threat of bladder infections.
Perhaps in a nursing home they could do catheterizations more often, discovering and treating them sooner. But our try at a nursing home in March was a disaster.
Next week I plan to be out of town, so I'm just grateful we got started on treating this before I fly to Santa Fe.
Tuesday, June 12, 2007
Not a Fun Day
Background
In February and March Mom was refusing her meds and scratching her caregivers, so her doctor recommended seeing a geriatric psychiatrist.
I delayed in making this appointment but finally called and couldn't get an appointment with the UCLA-recommended person, Dr. Stephen Chen, until May1. He takes Medicare, so there's no cost.
We needed help sooner than that, so I called a private doctor, David Trader, and took her to see him on April 4. He spent an hour with Mom and charged $295, but it was worth it.
After reviewing her meds, he added Namenda to the list and also ordered that she get a urine test just in case her misbehavior was being caused by a urinary tract infection.
The test showed a very serious UTI with bacteria that required an IV to administer the antibiotic. Thus the hospital visit, attempt to move her to a SNF, decision to move her back to assisted living, etc. (See April entries of this blog.)
Anyway, when May 1 finally rolled around, I took Mom to UCLA Medical Center to see Dr. Chen, so that her subsequent psychiatric visits would be paid for by Medicare.
But on that day I arrived late to pick her up, she insisted on a bathroom trip first (10 min. minimum), traffic was heavy, parking and finding his office was slow, and we arrived at 2:15 for a 2 pm appointment.
"You'll have to reschedule," the receptionist said.
So two hours were wasted without even seeing the doctor.
The rescheduled appointment was for June 12.
Getting to the Shrink on Time
Today I was determined to get to Dr. Chen on time, having been trying to get to him since March. But I still begrudged the time I had to put into this project, and I left the computer later than I should have.
When I arrived Ocean View Assisted Living at 1:15 to pick Mom up, I found her in the beauty shop under a hair dryer with her head full of rollers. I touched her hair: wet.
"She only needs five more minutes," the hairdresser informed me.
I tried to keep my cool, going up to her room to get her purse, sunglasses, and foot supports for her wheelchair. Then I sat down outside the shop and filled out the medical and psychological history forms (three pages) that I'd procrastinated on doing. I noticed she was wearing red velour slacks and pink striped socks with red SAS laced shoes--strange outfit. No nylon panty hose. Some caregiver other than Elisa must have been working today.
By 1:30 pm she was done and I had her in the wheelchair, heading for the elevator and the car. By 1:40 I was speeding down Wilshire Boulevard, competing for every foot of advantage in heavy traffic. At 1:55 I drove into the underground parking garage, found a space, and loaded Mom into the wheelchair. It was a miracle! We had a chance of being only a few minutes late.
Soon I was pushing her at a jog through the crowded halls headed toward 200 Medical Plaza, Room 2200.
"I'm going to fall out!" Mom exclaimed fearfully.
"No, you're not. You're fine," I panted.
When we arrived at the receptionist's desk, the clock said 2:04 pm. My watch said 2:07, so I was glad hers was a little behind.
I wanted to shout "Hallelujah!" but I was still nervous that she might declare us too late and make us reschedule.
Instead she started giving us papers to sign.
"Can she sign them?" the receptionist asked.
I glared at her.
Mom sat there in her wheelchair with her eyes closed.
Are you crazy?! I wanted to ask. Can't you tell she's 88 and has dementia? It will take fifteen minutes of coaxing to get her to sign her name five times.
"Okay," I finally said sarcastically, turning to Mom. "Okay, she can sign them."
"Well, do you have power of attorney?" asked the receptionist. "Because if you have the papers on you, you can sign them."
NO! I brought the heavy file of her last nine months of medical history but not the POA papers. Dammit!
"Yes, I have POA, but no, I don't have the papers with me," I said, trying to keep an even tone.
But then it occurred to me that they might be in the file somewhere. I pulled it out of my bag, opened it, and started shuffling through all the papers.
Eureka!
"Yes, I do have the POA documents with me," I told her with relief.
She photocopied them while I signed all the forms.
By this time it was 2:09 pm. Is she going to announce that we've missed the appointment? My anxiety level was still sky high.
I pushed Mom into the waiting area and collapsed into a chair for 30 seconds before Dr. Chen came out to bring us into his office.
"Would you like a mint?" I asked Mom, opening a packaged Lifesaver for her.
I'm more agitated than she is, I thought, pushing her in and trying to smile politely. He's going to wonder who's the patient here, her or me.
Talking with the Geriatric Psychiatrist
"Hello, Mrs. Eggebroten. I'm Dr. Chen," he said, extending his hand to her.
"Hello," she said, opening her eyes.
"I'm a psychiatrist," he explained. "I talk to people who might be feeling anxious or fearful or depressed. Do have any of those feelings?"
"Put your feet flat," she told him. She tells me and anyone else not to sit slumped with their legs crossed.
"Why?" he asked.
"Because it's better that way," she said.
"So do you have any of those feelings?" he asked.
"I don't want to think about being dead," she answered.
"Well, no one wants to die," he said. "Do you think about that?"
"Yes, I already died. I talk to my mother all the time."
"You feel you are dead?"
"No, not now. I'm just getting ready to be. I've got lots of dolls, and I'm going to take them with me."
"So you have a doll collection. Besides dying, is there anything else that makes you feel anxious?"
"Yes, my father told me I wasn't going to be a virgin any more. He told me to go spread-eagled, and I thought he was going to give me a piece of candy or something, but he didn't. That's why I want your feet on the ground."
"Oh," he said, uncrossing his legs. "Is that why you feel like you're dead?"
"I feel like I'm dead already, but I know I'm not because I have these good mints," she said, sliding the remains of the Lifesaver around in her mouth.
"What do you enjoy doing?" he asked.
"Playing with all my dolls," she said. "But the bad man steals them."
"The bad man?"
"The bad man has a collection too. He goes in my old room and sits there and steals my candy and spends my money."
"Who steals your candy?"
"The bad man."
"Every day? Do you mean your father?"
"He had just finished taking a shower and got finished shaving."
"Is this bad man mistreating you?"
"No, I won't let him."
"So you've been feeling agitated lately?" Dr. Chen asked, reading the medical history I had given him and looking at me.
"Several times in the last week she's been agitated, trying to get out of her chair or out of bed in the night," I explained. "Yesterday she took her rings off and lost them in her bed."
"They said I was already dead," Mom explained. "So I thought I should get my rings off so they wouldn't saw them off. They ought to be free so they could go to my daughters-in-law. And then I saw them walking around with them."
"Can you raise your arms for me?" he asked. "You know Lewy Body is related to Parkinson's?"
At this point Dr. Chen stopped interviewing her and discussed her medications with me. During most of the conversation her eyes had been closed.
"Her white blood cell count is low," he noted, looking at her records on line. "For her depression I think we should increase her Remeron to 45 mg. We won't add Namenda just yet. We can keep it as an option for later. There's another one that not an antipsychotic, Depacote, that we could use later to reduce aggression. She's probably on Exelon, not Aricept, becauses Aricept can cause vivid dreams."
"I want to leave now," she interrupted.
"She thinks her dreams are real," I said to him. "We don't want her dreams to be any more vivid."
"I want to leave!"
"We'll leave in just a minute," I said.
"We could also consider Razadyne," he said. "That helps with Alzheimer's. She's also at risk for Alzheimer's in addition to the Lewy Body."
"I want to leave! I want to leave!"
"We'll also consider slowly decreasing the Exelon in case it's causing her vivid dreams. It has gastrointestinal side-effects."
"I want to leave right now!"
"Okay, Mom. We'll get a banana split or something in just a minute."
"My diagnosis is severe dementia with Parkinsonism," he concluded. "At least it's that, whether or not she has Lewy Body."
"Okay, we'll go now. Thanks a lot," I said, wheeling her out.
And Now, for a Treat...
We arrived in the lobby of the building near the gift shop, and I noticed the chest full of ice cream.
"Would you like a Nestle's Crunch?" I asked Mom.
"Yes," she said.
I put one in her hand, taking off the paper, and bought an ice cream sandwich for myself. We both deserved a treat.
But the ordeal wasn't over.
Yesterday Dr. Rosen had told us to go get a catheterization done because of her possible bladder infection. She had called UCLA to tell the nurse we would be coming sometime today.
First a visit to the psychiatrist, then a catheterization, I thought. What a day.
I pushed her to 300 Medical Plaza and we went to the fourth floor.
"Hi, we're here for a catheterization," I announced, handing the receptionist the orange sheet Dr. Rosen had given to me yesterday.
He looked puzzled and went to consult his supervisor.
We waited twenty minutes.
Then a nurse came out and said, "I don't know if they told you, but you need to make an appointment. You can't be seen without an appointment."
"Oh, okay, fine. We can make an appointment," I said. Actually that's a relief, I thought, if she can't have a catheterization done today. It just means that I lose tomorrow morning to another trip over here.
I opened my appointment book and waited to make an appointment, but then the nurse reappeared.
"You know what, we'll go ahead and do it today," she said. "But you need to make an appointment for next time."
"Oh thank you!" I said, trying to look grateful for the renewed prospect of a catheterization.
We sat down to wait again.
"I have to go to the bathroom," Mom demanded.
"No, let's just wait for the nurse," I said, fearful that a trip to the bathroom might empty her bladder, rendering the catheterization pointless. That happened last April.
"Take me to the bathroom," Mom insisted. "I have to go to the bathroom."
Then it hit me: what if she had a BM in her Depend? I didn't want the nurse to take us in for the gift of this procedure and then find a diaper full of mess.
We went to the bathroom, where indeed she had some BM in her Depend. I cleaned her up and put a new disposable on her, returning to the lobby.
Suddenly I realized that that orange form I had given them wasn't an order for a catheterization. It was just the check-out form that I should have given to Dr. Rosen's appointment clerk yesterday.
If I had waited to check out properly, they probably would have called to make the appointment for today and would have given me the right paperwork to have this catheterization done. Instead I had rushed out to get to my own physical therapy appointment.
Oh well. Soon we were called for the procedure.
In the examination room, I lifted her up onto the examining table and the nurses and I proceeded to peel off her slacks and Depend. They swiped her pelvic area with iodine, noting that a catheterization poorly done could introduce bacteria and cause a bladder infection. I didn't want to hear that.
Mom whimpered and yelped with pain but they managed to get the plastic tube in and obtain a bag full of urine.
"It looks cloudy," the nurse said. Sure enough, the urine was too dark a yellow/orange and also opaque. She probably had a UTI.
They completed their work, I dressed her and got her back in the wheelchair. Exhausted, I took her back to the car, buying a raspberry iced tea for each of us on the way.
She was late for dinner. Fortunately, Connie, her private caregiver, was there to take over. I'd forgotten that she comes on Tuesday and Thursday.
That meant I had to go to the bank and get cash to pay her for this week; that way I wouldn't have to do it on Thursday.
I trudged off to the bank and back to Ocean View, finally getting home at 6 pm.
It was a doozy of a day.
In February and March Mom was refusing her meds and scratching her caregivers, so her doctor recommended seeing a geriatric psychiatrist.
I delayed in making this appointment but finally called and couldn't get an appointment with the UCLA-recommended person, Dr. Stephen Chen, until May1. He takes Medicare, so there's no cost.
We needed help sooner than that, so I called a private doctor, David Trader, and took her to see him on April 4. He spent an hour with Mom and charged $295, but it was worth it.
After reviewing her meds, he added Namenda to the list and also ordered that she get a urine test just in case her misbehavior was being caused by a urinary tract infection.
The test showed a very serious UTI with bacteria that required an IV to administer the antibiotic. Thus the hospital visit, attempt to move her to a SNF, decision to move her back to assisted living, etc. (See April entries of this blog.)
Anyway, when May 1 finally rolled around, I took Mom to UCLA Medical Center to see Dr. Chen, so that her subsequent psychiatric visits would be paid for by Medicare.
But on that day I arrived late to pick her up, she insisted on a bathroom trip first (10 min. minimum), traffic was heavy, parking and finding his office was slow, and we arrived at 2:15 for a 2 pm appointment.
"You'll have to reschedule," the receptionist said.
So two hours were wasted without even seeing the doctor.
The rescheduled appointment was for June 12.
Getting to the Shrink on Time
Today I was determined to get to Dr. Chen on time, having been trying to get to him since March. But I still begrudged the time I had to put into this project, and I left the computer later than I should have.
When I arrived Ocean View Assisted Living at 1:15 to pick Mom up, I found her in the beauty shop under a hair dryer with her head full of rollers. I touched her hair: wet.
"She only needs five more minutes," the hairdresser informed me.
I tried to keep my cool, going up to her room to get her purse, sunglasses, and foot supports for her wheelchair. Then I sat down outside the shop and filled out the medical and psychological history forms (three pages) that I'd procrastinated on doing. I noticed she was wearing red velour slacks and pink striped socks with red SAS laced shoes--strange outfit. No nylon panty hose. Some caregiver other than Elisa must have been working today.
By 1:30 pm she was done and I had her in the wheelchair, heading for the elevator and the car. By 1:40 I was speeding down Wilshire Boulevard, competing for every foot of advantage in heavy traffic. At 1:55 I drove into the underground parking garage, found a space, and loaded Mom into the wheelchair. It was a miracle! We had a chance of being only a few minutes late.
Soon I was pushing her at a jog through the crowded halls headed toward 200 Medical Plaza, Room 2200.
"I'm going to fall out!" Mom exclaimed fearfully.
"No, you're not. You're fine," I panted.
When we arrived at the receptionist's desk, the clock said 2:04 pm. My watch said 2:07, so I was glad hers was a little behind.
I wanted to shout "Hallelujah!" but I was still nervous that she might declare us too late and make us reschedule.
Instead she started giving us papers to sign.
"Can she sign them?" the receptionist asked.
I glared at her.
Mom sat there in her wheelchair with her eyes closed.
Are you crazy?! I wanted to ask. Can't you tell she's 88 and has dementia? It will take fifteen minutes of coaxing to get her to sign her name five times.
"Okay," I finally said sarcastically, turning to Mom. "Okay, she can sign them."
"Well, do you have power of attorney?" asked the receptionist. "Because if you have the papers on you, you can sign them."
NO! I brought the heavy file of her last nine months of medical history but not the POA papers. Dammit!
"Yes, I have POA, but no, I don't have the papers with me," I said, trying to keep an even tone.
But then it occurred to me that they might be in the file somewhere. I pulled it out of my bag, opened it, and started shuffling through all the papers.
Eureka!
"Yes, I do have the POA documents with me," I told her with relief.
She photocopied them while I signed all the forms.
By this time it was 2:09 pm. Is she going to announce that we've missed the appointment? My anxiety level was still sky high.
I pushed Mom into the waiting area and collapsed into a chair for 30 seconds before Dr. Chen came out to bring us into his office.
"Would you like a mint?" I asked Mom, opening a packaged Lifesaver for her.
I'm more agitated than she is, I thought, pushing her in and trying to smile politely. He's going to wonder who's the patient here, her or me.
Talking with the Geriatric Psychiatrist
"Hello, Mrs. Eggebroten. I'm Dr. Chen," he said, extending his hand to her.
"Hello," she said, opening her eyes.
"I'm a psychiatrist," he explained. "I talk to people who might be feeling anxious or fearful or depressed. Do have any of those feelings?"
"Put your feet flat," she told him. She tells me and anyone else not to sit slumped with their legs crossed.
"Why?" he asked.
"Because it's better that way," she said.
"So do you have any of those feelings?" he asked.
"I don't want to think about being dead," she answered.
"Well, no one wants to die," he said. "Do you think about that?"
"Yes, I already died. I talk to my mother all the time."
"You feel you are dead?"
"No, not now. I'm just getting ready to be. I've got lots of dolls, and I'm going to take them with me."
"So you have a doll collection. Besides dying, is there anything else that makes you feel anxious?"
"Yes, my father told me I wasn't going to be a virgin any more. He told me to go spread-eagled, and I thought he was going to give me a piece of candy or something, but he didn't. That's why I want your feet on the ground."
"Oh," he said, uncrossing his legs. "Is that why you feel like you're dead?"
"I feel like I'm dead already, but I know I'm not because I have these good mints," she said, sliding the remains of the Lifesaver around in her mouth.
"What do you enjoy doing?" he asked.
"Playing with all my dolls," she said. "But the bad man steals them."
"The bad man?"
"The bad man has a collection too. He goes in my old room and sits there and steals my candy and spends my money."
"Who steals your candy?"
"The bad man."
"Every day? Do you mean your father?"
"He had just finished taking a shower and got finished shaving."
"Is this bad man mistreating you?"
"No, I won't let him."
"So you've been feeling agitated lately?" Dr. Chen asked, reading the medical history I had given him and looking at me.
"Several times in the last week she's been agitated, trying to get out of her chair or out of bed in the night," I explained. "Yesterday she took her rings off and lost them in her bed."
"They said I was already dead," Mom explained. "So I thought I should get my rings off so they wouldn't saw them off. They ought to be free so they could go to my daughters-in-law. And then I saw them walking around with them."
"Can you raise your arms for me?" he asked. "You know Lewy Body is related to Parkinson's?"
At this point Dr. Chen stopped interviewing her and discussed her medications with me. During most of the conversation her eyes had been closed.
"Her white blood cell count is low," he noted, looking at her records on line. "For her depression I think we should increase her Remeron to 45 mg. We won't add Namenda just yet. We can keep it as an option for later. There's another one that not an antipsychotic, Depacote, that we could use later to reduce aggression. She's probably on Exelon, not Aricept, becauses Aricept can cause vivid dreams."
"I want to leave now," she interrupted.
"She thinks her dreams are real," I said to him. "We don't want her dreams to be any more vivid."
"I want to leave!"
"We'll leave in just a minute," I said.
"We could also consider Razadyne," he said. "That helps with Alzheimer's. She's also at risk for Alzheimer's in addition to the Lewy Body."
"I want to leave! I want to leave!"
"We'll also consider slowly decreasing the Exelon in case it's causing her vivid dreams. It has gastrointestinal side-effects."
"I want to leave right now!"
"Okay, Mom. We'll get a banana split or something in just a minute."
"My diagnosis is severe dementia with Parkinsonism," he concluded. "At least it's that, whether or not she has Lewy Body."
"Okay, we'll go now. Thanks a lot," I said, wheeling her out.
And Now, for a Treat...
We arrived in the lobby of the building near the gift shop, and I noticed the chest full of ice cream.
"Would you like a Nestle's Crunch?" I asked Mom.
"Yes," she said.
I put one in her hand, taking off the paper, and bought an ice cream sandwich for myself. We both deserved a treat.
But the ordeal wasn't over.
Yesterday Dr. Rosen had told us to go get a catheterization done because of her possible bladder infection. She had called UCLA to tell the nurse we would be coming sometime today.
First a visit to the psychiatrist, then a catheterization, I thought. What a day.
I pushed her to 300 Medical Plaza and we went to the fourth floor.
"Hi, we're here for a catheterization," I announced, handing the receptionist the orange sheet Dr. Rosen had given to me yesterday.
He looked puzzled and went to consult his supervisor.
We waited twenty minutes.
Then a nurse came out and said, "I don't know if they told you, but you need to make an appointment. You can't be seen without an appointment."
"Oh, okay, fine. We can make an appointment," I said. Actually that's a relief, I thought, if she can't have a catheterization done today. It just means that I lose tomorrow morning to another trip over here.
I opened my appointment book and waited to make an appointment, but then the nurse reappeared.
"You know what, we'll go ahead and do it today," she said. "But you need to make an appointment for next time."
"Oh thank you!" I said, trying to look grateful for the renewed prospect of a catheterization.
We sat down to wait again.
"I have to go to the bathroom," Mom demanded.
"No, let's just wait for the nurse," I said, fearful that a trip to the bathroom might empty her bladder, rendering the catheterization pointless. That happened last April.
"Take me to the bathroom," Mom insisted. "I have to go to the bathroom."
Then it hit me: what if she had a BM in her Depend? I didn't want the nurse to take us in for the gift of this procedure and then find a diaper full of mess.
We went to the bathroom, where indeed she had some BM in her Depend. I cleaned her up and put a new disposable on her, returning to the lobby.
Suddenly I realized that that orange form I had given them wasn't an order for a catheterization. It was just the check-out form that I should have given to Dr. Rosen's appointment clerk yesterday.
If I had waited to check out properly, they probably would have called to make the appointment for today and would have given me the right paperwork to have this catheterization done. Instead I had rushed out to get to my own physical therapy appointment.
Oh well. Soon we were called for the procedure.
In the examination room, I lifted her up onto the examining table and the nurses and I proceeded to peel off her slacks and Depend. They swiped her pelvic area with iodine, noting that a catheterization poorly done could introduce bacteria and cause a bladder infection. I didn't want to hear that.
Mom whimpered and yelped with pain but they managed to get the plastic tube in and obtain a bag full of urine.
"It looks cloudy," the nurse said. Sure enough, the urine was too dark a yellow/orange and also opaque. She probably had a UTI.
They completed their work, I dressed her and got her back in the wheelchair. Exhausted, I took her back to the car, buying a raspberry iced tea for each of us on the way.
She was late for dinner. Fortunately, Connie, her private caregiver, was there to take over. I'd forgotten that she comes on Tuesday and Thursday.
That meant I had to go to the bank and get cash to pay her for this week; that way I wouldn't have to do it on Thursday.
I trudged off to the bank and back to Ocean View, finally getting home at 6 pm.
It was a doozy of a day.
Monday, June 11, 2007
'Unseen, Unsung'
There's a feature in the LA Times today, June 11, about caregivers and the mental and physical effects of caregiving.
It mentions a useful organization, Caregiver Resource Centers. There are 11 of them in California, serving about 14,000 of the 3.2 million caregivers in the state. To contact one of these centers, go to http://www.californiacrc.org/californiacrc/jsp/home.jsp.
Nationwide, there are probably 46 million caregivers.
Getting help can cut the high level of depression among caregivers by 50%.
See "Unseen, unsung" by Melissa Healy at this web address:
http://www.latimes.com/features/health/la-he-caregivers11jun11,1,4022150.story
See also the cover story of Newsweek, June 18, 2007: "Caregiving & Alzheimer's: In a wrenching role reversal, adult children are struggling to help their ailing parents. The toll on families--and how to cope."
It mentions a useful organization, Caregiver Resource Centers. There are 11 of them in California, serving about 14,000 of the 3.2 million caregivers in the state. To contact one of these centers, go to http://www.californiacrc.org/californiacrc/jsp/home.jsp.
Nationwide, there are probably 46 million caregivers.
Getting help can cut the high level of depression among caregivers by 50%.
See "Unseen, unsung" by Melissa Healy at this web address:
http://www.latimes.com/features/health/la-he-caregivers11jun11,1,4022150.story
See also the cover story of Newsweek, June 18, 2007: "Caregiving & Alzheimer's: In a wrenching role reversal, adult children are struggling to help their ailing parents. The toll on families--and how to cope."
'My Bottom Hurts'
I try to work at the computer in the morning and do medical visits, mother care in the afternoon, but today Mom had a physical therapy appointment at 11 am.
Then at 2 pm she had a monthly check-up with her doctor, and I had a physical therapy appointment at 3 pm for a recent whiplash injury (rear-ended at a stoplight).
The scheduling was a bit tight, but there was nothing I could do about it.
PT appointment
Mom did her range-of-movement exercises with Cindy, the PT, her eyes closed all the while. I coached her to cooperate with the therapy, begging her to open her eyes now and then.
At the end, Cindy asked, "Okay, Evelyn, how do you feel? Do you hurt anywhere?"
"My bottom hurts," Mom answered.
What an odd statement: only her arms had been involved in the exercise, and she had given the same answer last Thursday at her first appointment for this round of physical therapy.
I got worried: those words were exactly what she'd said in April when she'd been diagnosed with a bladder infection. Since then she's been on an antibiotic daily to prevent UTIs, but who knows? She might have one again.
Mental note: report this to her doctor at our 2 pm appointment.
Doctor appointment
At 12:30 took Mom back for lunch and waited, then took her to the bathroom and made sure to arrive a little early for her doctor's appointment, so I'd have a better chance of getting to my 3 pm PT.
Once we were seen, I went down the list of topics to discuss with Dr. Rosen:
1) Conjunctivitis--seen by ophthalmologist and treated.
2) Spreading rash under both breasts--not responding to Neosporin. The doctor said it was a fungal infection and prescribed a cream.
3) Range of motion exercises being done per Dr. Motamedi. Thoracic support brace not yet bought.
4) TIAs? After one morning when she was very agitated and tried to get out of bed at 6:30 am, she reported that "The lights went out." That was similar to what she said in 1995 when some kind of event like a transient ischemic attack took place.
5) Possible UTI? Even though she's on Macrodantin?
Dr. Rosen said we should get a catheterization done, even though we'd agreed on our last visit not to do any more of those, instead to depend on the Macrodantin.
"It will have to be done by Home Health at her residence," I said. "I don't want to take her to the UCLA med center."
"Okay, I understand," said Dr. Rosen.
But then we debated whether reactivating the Home Health contract would mean that her outpatient physical therapy had to end.
"Oh, I guess I'll just take her to UCLA," I concluded.
"Okay, I'll call them and make sure they are expecting you tomorrow," she offered.
Then she told us her news: she's 4 1/2 months pregnant with her second child. She'll be off for three months Oct. 1 through Jan. 1. It was just a year ago that we started with Dr. Rosen after Dr. Charette had to take time off for her pregnancy with twins.
I hauled Mom up on the examination table so Dr. Rosen could check her perineum for bed sores, and yes, she still has a stage one bed sore on her backside.
Then I dressed her again and went to the checkout desk.
My PT appointment
Suddenly I realized that it was 1:40 pm and I still had to get Mom back to her residence before driving to my own physical therapy appointment at 2 pm.
But at the checkout desk another elderly patient was involved in some tedious discussion with the clerk, who was checking records on line.
I waited for two minutes, then just walked out the door, telling myself that all I needed was the next appointment in a month. I could call later for that.
I forgot that I needed the paperwork for the catheterization. I thought the orange piece of paper I was holding would suffice, but it was just a record of today's appointment and results to be given to the doctor's own clerk.
I jogged back to Ocean View, pushing Mom in her wheelchair at a breakneck speed.
I toileted her and got her situated in her recliner.
Then I negotiated the two elevators to the underground parking and drove to my own appointment. (There are two elevators and code pads to punch in so that no one on the memory care floor can escape.)
I was only five minutes late, and the therapist didn't seem to mind.
Then at 2 pm she had a monthly check-up with her doctor, and I had a physical therapy appointment at 3 pm for a recent whiplash injury (rear-ended at a stoplight).
The scheduling was a bit tight, but there was nothing I could do about it.
PT appointment
Mom did her range-of-movement exercises with Cindy, the PT, her eyes closed all the while. I coached her to cooperate with the therapy, begging her to open her eyes now and then.
At the end, Cindy asked, "Okay, Evelyn, how do you feel? Do you hurt anywhere?"
"My bottom hurts," Mom answered.
What an odd statement: only her arms had been involved in the exercise, and she had given the same answer last Thursday at her first appointment for this round of physical therapy.
I got worried: those words were exactly what she'd said in April when she'd been diagnosed with a bladder infection. Since then she's been on an antibiotic daily to prevent UTIs, but who knows? She might have one again.
Mental note: report this to her doctor at our 2 pm appointment.
Doctor appointment
At 12:30 took Mom back for lunch and waited, then took her to the bathroom and made sure to arrive a little early for her doctor's appointment, so I'd have a better chance of getting to my 3 pm PT.
Once we were seen, I went down the list of topics to discuss with Dr. Rosen:
1) Conjunctivitis--seen by ophthalmologist and treated.
2) Spreading rash under both breasts--not responding to Neosporin. The doctor said it was a fungal infection and prescribed a cream.
3) Range of motion exercises being done per Dr. Motamedi. Thoracic support brace not yet bought.
4) TIAs? After one morning when she was very agitated and tried to get out of bed at 6:30 am, she reported that "The lights went out." That was similar to what she said in 1995 when some kind of event like a transient ischemic attack took place.
5) Possible UTI? Even though she's on Macrodantin?
Dr. Rosen said we should get a catheterization done, even though we'd agreed on our last visit not to do any more of those, instead to depend on the Macrodantin.
"It will have to be done by Home Health at her residence," I said. "I don't want to take her to the UCLA med center."
"Okay, I understand," said Dr. Rosen.
But then we debated whether reactivating the Home Health contract would mean that her outpatient physical therapy had to end.
"Oh, I guess I'll just take her to UCLA," I concluded.
"Okay, I'll call them and make sure they are expecting you tomorrow," she offered.
Then she told us her news: she's 4 1/2 months pregnant with her second child. She'll be off for three months Oct. 1 through Jan. 1. It was just a year ago that we started with Dr. Rosen after Dr. Charette had to take time off for her pregnancy with twins.
I hauled Mom up on the examination table so Dr. Rosen could check her perineum for bed sores, and yes, she still has a stage one bed sore on her backside.
Then I dressed her again and went to the checkout desk.
My PT appointment
Suddenly I realized that it was 1:40 pm and I still had to get Mom back to her residence before driving to my own physical therapy appointment at 2 pm.
But at the checkout desk another elderly patient was involved in some tedious discussion with the clerk, who was checking records on line.
I waited for two minutes, then just walked out the door, telling myself that all I needed was the next appointment in a month. I could call later for that.
I forgot that I needed the paperwork for the catheterization. I thought the orange piece of paper I was holding would suffice, but it was just a record of today's appointment and results to be given to the doctor's own clerk.
I jogged back to Ocean View, pushing Mom in her wheelchair at a breakneck speed.
I toileted her and got her situated in her recliner.
Then I negotiated the two elevators to the underground parking and drove to my own appointment. (There are two elevators and code pads to punch in so that no one on the memory care floor can escape.)
I was only five minutes late, and the therapist didn't seem to mind.
Monday, June 04, 2007
Singing "My Generation"
Hilarious video--seniors sing "Talkin' 'Bout My Generation."
The Zimmers Live on Graham Norton
via You Tube
Go to: > http://youtube.com/watch?v=zqfFrCUrEbY
The Zimmers Live on Graham Norton
via You Tube
Go to: > http://youtube.com/watch?v=zqfFrCUrEbY
Tuesday, May 15, 2007
Heaven and Hell
I arrive at Mom's residence to take her to an appointment with her orthopedist.
She's talking about bougainvillea again. I'm amazed at how this word sticks.
"That's my bougainvillea," We had it in Bakersfield," she says.
"Yes, we did," I say, saying to myself She remembers the oleander.
"Wasn't it nice to see Bill?" I ask, to remind her that he was here.
"It's time," she says.
"Time for what?" I ask.
"I think I should get the hell out of here and go to heaven," she answers. "It's more peaceful there."
"Yes, it is," I say weakly. I never know what she is going to say next.
As I wheel her to the orthopedist, she's still talking a blue streak.
"What does it mean when they say that your house is not an option? I thought it was all fixed up for me."
I remember that Bill and I were discussing in her presence where to place her when she can no longer stay in assisted living. The skilled nursing facility was a disaster, and I told him that I sometimes think of having her live at my house because it might be better and less expensive than a SNF, but that really it's not an option. John and my kids would not tolerate it, even if I could arrange for a caregiver to stay with her 24/7.
"Yes, the bathroom is all fixed up for you with bars and things, but I don't think you'd like to sleep at my house," I say, thinking frantically of how to answer this one. "Usually you want to go back to your place."
"But here the bad man comes in all night and hassles me," she says.
I know she means rape.
I don't know why this "bad man" thought keeps coming in her mind. Every time she sees a male, especially dark-skinned, it's the "bad man."
The conversation moves to management the bad men out there, and she forgets about wanting to know why she can't live with me. Whew.
The orthopedist orders physical therapy for her, range of movement exercises. He wants her to do outpatient but I tell him it has to be Home Health Services. I will not take her to PT 2-3 times per week, and Rehabnet didn't think she was worth their attention the last time I took her there. They saw no progress in four weeks and discharged her.
He's also concerned about her kyphosis (bent over back). He gives us a prescription for a back brace to hold her up straighter, but I don't know if I will fill it.
I just don't know if she can stand to have a back brace.
She's talking about bougainvillea again. I'm amazed at how this word sticks.
"That's my bougainvillea," We had it in Bakersfield," she says.
"Yes, we did," I say, saying to myself She remembers the oleander.
"Wasn't it nice to see Bill?" I ask, to remind her that he was here.
"It's time," she says.
"Time for what?" I ask.
"I think I should get the hell out of here and go to heaven," she answers. "It's more peaceful there."
"Yes, it is," I say weakly. I never know what she is going to say next.
As I wheel her to the orthopedist, she's still talking a blue streak.
"What does it mean when they say that your house is not an option? I thought it was all fixed up for me."
I remember that Bill and I were discussing in her presence where to place her when she can no longer stay in assisted living. The skilled nursing facility was a disaster, and I told him that I sometimes think of having her live at my house because it might be better and less expensive than a SNF, but that really it's not an option. John and my kids would not tolerate it, even if I could arrange for a caregiver to stay with her 24/7.
"Yes, the bathroom is all fixed up for you with bars and things, but I don't think you'd like to sleep at my house," I say, thinking frantically of how to answer this one. "Usually you want to go back to your place."
"But here the bad man comes in all night and hassles me," she says.
I know she means rape.
I don't know why this "bad man" thought keeps coming in her mind. Every time she sees a male, especially dark-skinned, it's the "bad man."
The conversation moves to management the bad men out there, and she forgets about wanting to know why she can't live with me. Whew.
The orthopedist orders physical therapy for her, range of movement exercises. He wants her to do outpatient but I tell him it has to be Home Health Services. I will not take her to PT 2-3 times per week, and Rehabnet didn't think she was worth their attention the last time I took her there. They saw no progress in four weeks and discharged her.
He's also concerned about her kyphosis (bent over back). He gives us a prescription for a back brace to hold her up straighter, but I don't know if I will fill it.
I just don't know if she can stand to have a back brace.
Monday, May 14, 2007
D/C Coumadin
Mom and I return to her regular doctor for her first check-up since my disastrous attempt to move her to skilled nursing.
I explain that it just didn't work out at Country Villa Mar Vista. The caregivers had too many patients and she even went through three meals without her false teeth.
Because it was a UTI that prompted the whole episode, I tell Dr. Rosen that my brother recommends just putting Mom on a prophylactic antibiotic to prevent bladder infections.
She's happy to order Macrodantin, 50 mg per day, which will kill most bacteria that cause chronic urinary tract infections.
"But the bacteria that caused this last infection was Klepsiel," she reminds me. "That one's not susceptible to Macrodantin."
"I understand," I say. "As long as it kills most of them."
"We're still not ready for hospice," I say. "But we do want to avoid medical procedures that cause her discomfort, like blood draws and catheterization. We want to take her off Coumadin so she doesn't have to have her blood drawn every week, sometimes twice a week. She refuses her meds sometimes, so that throws off the effort to stabilize her anticoagulation levels, and she doesn't eat meals on a sleepy day, so that throws it off too."
"No future straight caths," the doctor writes in her chart.
"We could reduce the Coumadin to a low dose, 1 mg, and stop checking her Pro-thrombin times, or we could d/c it altogether," Dr. Rosen offers.
"Let's stop it completely," I say. "My brother says she could have Plavix or aspirin instead."
"No, Plavix is for the heart," she says. "But I can order her 325 mg of Aspirin per day. The question is, do we treat a pulmonary embolism if it occurs? Because she had one in September, 2005, and it could happen again."
"Well, I guess not, if she's dying. But if she's just uncomfortable..."
"We have to ask, 'What are the goals of care? We want to keep her comfortable, but what are we willing to treat?' I think we treat a UTI, pneumonia, PE. But we don't want to treat, then withdraw treatment; treat, withdraw."
"No, that doesn't make sense," I agree.
Then I explain that Mom's thirty-year old bed with the lifting function for the head and feet was pronounced worn out by the repairman from Wishing Well, and that he said Medicare would pay for a new bed if the doctor ordered it.
She writes an order.
We also discuss bed sores, so she orders a gel mattress for the bed.
I wheel Mom out, grateful for having accomplished so much on this visit to the doctor.
~ ~ ~
I don't tell her that an hour earlier I got a call from my daughter's rehab place with the news that Ellen is missing. Apparently she was taken to a movie with several other patients, asked to go to the restroom, and escaped.
She has been AWOL, using cocaine and methamphetamine at a "tweaking pad" since last night. They didn't call us until this morning, just before I left for this doctor's appointment.
Ellen has called in and promised to return as soon as she can get her nerve up to do that--but meanwhile all I can do is worry.
I don't tell the doctor that really I don't care about my mother and her Coumadin, Macrodantin, etc. I just care about my daughter.
I explain that it just didn't work out at Country Villa Mar Vista. The caregivers had too many patients and she even went through three meals without her false teeth.
Because it was a UTI that prompted the whole episode, I tell Dr. Rosen that my brother recommends just putting Mom on a prophylactic antibiotic to prevent bladder infections.
She's happy to order Macrodantin, 50 mg per day, which will kill most bacteria that cause chronic urinary tract infections.
"But the bacteria that caused this last infection was Klepsiel," she reminds me. "That one's not susceptible to Macrodantin."
"I understand," I say. "As long as it kills most of them."
"We're still not ready for hospice," I say. "But we do want to avoid medical procedures that cause her discomfort, like blood draws and catheterization. We want to take her off Coumadin so she doesn't have to have her blood drawn every week, sometimes twice a week. She refuses her meds sometimes, so that throws off the effort to stabilize her anticoagulation levels, and she doesn't eat meals on a sleepy day, so that throws it off too."
"No future straight caths," the doctor writes in her chart.
"We could reduce the Coumadin to a low dose, 1 mg, and stop checking her Pro-thrombin times, or we could d/c it altogether," Dr. Rosen offers.
"Let's stop it completely," I say. "My brother says she could have Plavix or aspirin instead."
"No, Plavix is for the heart," she says. "But I can order her 325 mg of Aspirin per day. The question is, do we treat a pulmonary embolism if it occurs? Because she had one in September, 2005, and it could happen again."
"Well, I guess not, if she's dying. But if she's just uncomfortable..."
"We have to ask, 'What are the goals of care? We want to keep her comfortable, but what are we willing to treat?' I think we treat a UTI, pneumonia, PE. But we don't want to treat, then withdraw treatment; treat, withdraw."
"No, that doesn't make sense," I agree.
Then I explain that Mom's thirty-year old bed with the lifting function for the head and feet was pronounced worn out by the repairman from Wishing Well, and that he said Medicare would pay for a new bed if the doctor ordered it.
She writes an order.
We also discuss bed sores, so she orders a gel mattress for the bed.
I wheel Mom out, grateful for having accomplished so much on this visit to the doctor.
~ ~ ~
I don't tell her that an hour earlier I got a call from my daughter's rehab place with the news that Ellen is missing. Apparently she was taken to a movie with several other patients, asked to go to the restroom, and escaped.
She has been AWOL, using cocaine and methamphetamine at a "tweaking pad" since last night. They didn't call us until this morning, just before I left for this doctor's appointment.
Ellen has called in and promised to return as soon as she can get her nerve up to do that--but meanwhile all I can do is worry.
I don't tell the doctor that really I don't care about my mother and her Coumadin, Macrodantin, etc. I just care about my daughter.
Bougainvillea
"Did you have a nice time yesterday?" I ask Mom. "Remember? Bill visited you for Mother's Day and we went to church and then to the beach."
"Yes," she says. "Bill was here."
"And I had that bougainvillea," she says, stunning me into silence.
~ ~ ~
How did she remember this word? There's so much she can't remember, especially short-term memory, and I've never mentioned this flower to her before. How did the word stick?
That afternoon I called Bill where he works at Ft. Lewis in Washington state.
"Bill, that flower they gave Mom at church yesterday, that bright pink flower--do you remember its name?"
"No," he said. "It was an interesting flower, but why?"
"First just think for a minute and tell me if you can remember the name."
"Okay--well, jacaranda?"
"No."
"I give up."
"Well, I was reminding Mom today what a nice day we had yesterday, with you visiting and all, and she said something about the flower, bougainvillea. I couldn't believe it."
He burst out laughing.
"So you better watch out--in this case, her memory was better than yours. Pretty scary."
"Yup, it is," he agreed.
"Yes," she says. "Bill was here."
"And I had that bougainvillea," she says, stunning me into silence.
~ ~ ~
How did she remember this word? There's so much she can't remember, especially short-term memory, and I've never mentioned this flower to her before. How did the word stick?
That afternoon I called Bill where he works at Ft. Lewis in Washington state.
"Bill, that flower they gave Mom at church yesterday, that bright pink flower--do you remember its name?"
"No," he said. "It was an interesting flower, but why?"
"First just think for a minute and tell me if you can remember the name."
"Okay--well, jacaranda?"
"No."
"I give up."
"Well, I was reminding Mom today what a nice day we had yesterday, with you visiting and all, and she said something about the flower, bougainvillea. I couldn't believe it."
He burst out laughing.
"So you better watch out--in this case, her memory was better than yours. Pretty scary."
"Yup, it is," he agreed.
Tuesday, May 08, 2007
Life in the Rem
Today, driving to visit Mom at 4:45 pm, I got a phone call with the news that my daughter in recovery from cocaine addiction had relapsed but is okay, safely back in rehab as an inpatient.
By the time I dealt with that, I didn't show up in the Reminiscence Neighborhood until 6 pm.
When I appeared, Mom was sitting in a crowd of residents "watching" The Sound of Music, angry that I had not come sooner.
[Note: a few watch, most sit there sleeping or staring blankly.]
She beckoned to me to lean down and whispered something about how terrible and mean the staff had been to her today.
I wheeled her back to her room to do a toilet stop before pushing her in her wheelchair out in the evening air, still warm after another hot day.
But the door was locked and her suite-mate was pounding on it from the inside and yelling.
Caregivers came running, and it turned out that Frances had fallen. She was lying on the carpet striking the door with her cane, furious that no one had responded sooner to her cries for help.
During the Holocaust, Frances spent 2-3 years in a concentration camp, so she has some issues when her legitimate needs are not met.
As Esther tended to Frances, I grabbed Mom's hat and sunglasses and left the scene. We wheeled to Rite-Aid, where I bought us each a one-scoop ice cream cone.
Take care of yourself, says Al-Anon.
Then we went to Von's where I bought cooked shrimp for dinner, in case John gets home hungry.
Back in the Rem, I changed Mom to her nightgown, removed and cleaned her teeth, and set her up in the recliner.
Just another day in the Reminiscence Neighborhood.
By the time I dealt with that, I didn't show up in the Reminiscence Neighborhood until 6 pm.
When I appeared, Mom was sitting in a crowd of residents "watching" The Sound of Music, angry that I had not come sooner.
[Note: a few watch, most sit there sleeping or staring blankly.]
She beckoned to me to lean down and whispered something about how terrible and mean the staff had been to her today.
I wheeled her back to her room to do a toilet stop before pushing her in her wheelchair out in the evening air, still warm after another hot day.
But the door was locked and her suite-mate was pounding on it from the inside and yelling.
Caregivers came running, and it turned out that Frances had fallen. She was lying on the carpet striking the door with her cane, furious that no one had responded sooner to her cries for help.
During the Holocaust, Frances spent 2-3 years in a concentration camp, so she has some issues when her legitimate needs are not met.
As Esther tended to Frances, I grabbed Mom's hat and sunglasses and left the scene. We wheeled to Rite-Aid, where I bought us each a one-scoop ice cream cone.
Take care of yourself, says Al-Anon.
Then we went to Von's where I bought cooked shrimp for dinner, in case John gets home hungry.
Back in the Rem, I changed Mom to her nightgown, removed and cleaned her teeth, and set her up in the recliner.
Just another day in the Reminiscence Neighborhood.
Monday, May 07, 2007
Double Duty
A week ago I was calling moving companies to move my mother's furniture back to her assisted living residence, and then actually accomplishing the move in one day.
I'm so grateful not to be doing that today!
So this afternoon I was hoping to spend an hour or two visiting her but no more.
As it turned out, I spent four hours on her.
First I went to Wishing Well Medical Products to buy a rolling table that adjusts up and down and can swing over a bed or chair. This replaces the end table by her chair.
While there, I asked for a repairman to make a house call and repair her electric bed. After being moved twice in one week, the bed lost a couple of pins, and the head would no longer raise up.
Then I delivered the table to Mom's room, where she was sleeping deeply in her chair.
I didn't try to wake her up--just spent an hour or so sorting and organizing the pile of things by her chair, setting up her Apple laptop on the new table, trying to restore her room to the order it had before the move.
At 3 pm I left--but soon I got a call from the repairman I had requested. He promised to show up at 5 pm, so I had to go back there and bring cash to pay him.
When he and I arrived, it turned out someone from Ocean View had already repaired the bed. The head moved up and down well, but a few days earlier it wasn't working.
Thus the repair call was in vain, though the guy installed one pin that had fallen out.
He pointed out that the mattress was shot and the frame itself was 20-30 years old, a bit of a hazard. It was bought for my father, sometime between 1978 and 1990.
By this time Mom had been wheeled in from the dining room, and she was angry that I hadn't visited her today.
"You didn't come to me today!"
"Mom, I was here for two hours but you were asleep," I pointed out.
She still felt neglected, so I took her out in the car to the Santa Irena pier.
It was a balmy evening after a scorching day. I wanted to push her in the chair around the pier, but she refused.
"I'm afraid," she said. "I might fall in."
Back at the room, I decided to give her a shower. She had refused a shower in the morning, and I think she had not had one since Thursday because I have cut back her private care to only two days.
Susan had told me they were short-staffed--someone hadn't come in--so I wanted to make this contribution.
It was, however, a disastrous shower. I hadn't done one for about six months, none in the bathroom of this two-room suite she has been living in since Dec. 1, 2006.
It was hard to transfer her to the bath chair, soap and rinse her, and get her back in the wheelchair.
"The water's too hot! You're too rough! That's enough now, I'm done," she protested as soon as I started.
Cleaning and then rinsing sufficiently under her pendant breasts and in her perianaeal area was difficult.
By the end she was in tears, just as she had been at Country Villa Mar Vista. I had new respect for the efforts of the caregivers there, whereas a week ago I took her tears after the shower as evidence that she had been showered roughly and impersonally.
Oh well.
I brushed her teeth, dried and powdered her, and left her sitting in her Lanz flannel nightgown in her extended recliner.
And I rushed off to an Al-Anon meeting to confess that I'm overly involved in her care, too quick to succumb to her demands.
I'm so grateful not to be doing that today!
So this afternoon I was hoping to spend an hour or two visiting her but no more.
As it turned out, I spent four hours on her.
First I went to Wishing Well Medical Products to buy a rolling table that adjusts up and down and can swing over a bed or chair. This replaces the end table by her chair.
While there, I asked for a repairman to make a house call and repair her electric bed. After being moved twice in one week, the bed lost a couple of pins, and the head would no longer raise up.
Then I delivered the table to Mom's room, where she was sleeping deeply in her chair.
I didn't try to wake her up--just spent an hour or so sorting and organizing the pile of things by her chair, setting up her Apple laptop on the new table, trying to restore her room to the order it had before the move.
At 3 pm I left--but soon I got a call from the repairman I had requested. He promised to show up at 5 pm, so I had to go back there and bring cash to pay him.
When he and I arrived, it turned out someone from Ocean View had already repaired the bed. The head moved up and down well, but a few days earlier it wasn't working.
Thus the repair call was in vain, though the guy installed one pin that had fallen out.
He pointed out that the mattress was shot and the frame itself was 20-30 years old, a bit of a hazard. It was bought for my father, sometime between 1978 and 1990.
By this time Mom had been wheeled in from the dining room, and she was angry that I hadn't visited her today.
"You didn't come to me today!"
"Mom, I was here for two hours but you were asleep," I pointed out.
She still felt neglected, so I took her out in the car to the Santa Irena pier.
It was a balmy evening after a scorching day. I wanted to push her in the chair around the pier, but she refused.
"I'm afraid," she said. "I might fall in."
Back at the room, I decided to give her a shower. She had refused a shower in the morning, and I think she had not had one since Thursday because I have cut back her private care to only two days.
Susan had told me they were short-staffed--someone hadn't come in--so I wanted to make this contribution.
It was, however, a disastrous shower. I hadn't done one for about six months, none in the bathroom of this two-room suite she has been living in since Dec. 1, 2006.
It was hard to transfer her to the bath chair, soap and rinse her, and get her back in the wheelchair.
"The water's too hot! You're too rough! That's enough now, I'm done," she protested as soon as I started.
Cleaning and then rinsing sufficiently under her pendant breasts and in her perianaeal area was difficult.
By the end she was in tears, just as she had been at Country Villa Mar Vista. I had new respect for the efforts of the caregivers there, whereas a week ago I took her tears after the shower as evidence that she had been showered roughly and impersonally.
Oh well.
I brushed her teeth, dried and powdered her, and left her sitting in her Lanz flannel nightgown in her extended recliner.
And I rushed off to an Al-Anon meeting to confess that I'm overly involved in her care, too quick to succumb to her demands.
Sunday, May 06, 2007
Planning for Next Time
What a relief to have Mom back at Ocean View Assisted Living. She really likes it, and I have peace of mind when I am not with her.
I hope she can live peacefully there until the end, perhaps with hospice, but just in case I am researching alternatives:
1) my brother's home near Tacoma with round the clock attendants
2) various small home-style residences sprinkled throughout Santa Irena with with 5-10 patients each. These vary tremendously, some good and some not so good. I have visited some before and rejected them---not as elegant as Ocean View--but for her last month if she is in a coma and needs nursing care, IV, etc., one of these may be necessary.
3) two residences in the Sunrise chain that have a floor for skilled nursing and may have a good care ratio (1 caregiver having 5-6 residents), unlike most nursing homes (SNFs).
4) any other nursing homes that have a 1/5 care ratio
5) the PEO chapter house in Alhambra (east of LA), which has a skilled nursing wing I think.
So I'm researching these alternatives so that next time, when she gets to the point where she has medical needs that can't be met at Ocean View, I will make a better decision.
I hope she can live peacefully there until the end, perhaps with hospice, but just in case I am researching alternatives:
1) my brother's home near Tacoma with round the clock attendants
2) various small home-style residences sprinkled throughout Santa Irena with with 5-10 patients each. These vary tremendously, some good and some not so good. I have visited some before and rejected them---not as elegant as Ocean View--but for her last month if she is in a coma and needs nursing care, IV, etc., one of these may be necessary.
3) two residences in the Sunrise chain that have a floor for skilled nursing and may have a good care ratio (1 caregiver having 5-6 residents), unlike most nursing homes (SNFs).
4) any other nursing homes that have a 1/5 care ratio
5) the PEO chapter house in Alhambra (east of LA), which has a skilled nursing wing I think.
So I'm researching these alternatives so that next time, when she gets to the point where she has medical needs that can't be met at Ocean View, I will make a better decision.
Classic Lewy Body Dementia
A highly animated or agitated day, followed by a deeply sleepy day--that's classic Lewy Body Dementia.
Mom has these about once a week now. A year or two ago they were less frequent.
The other five days of the week she is pretty normal: talkative, perhaps napping a couple of hours in the morning or afternoon (or both) but able to wake up and eat her meals, to calm down and go to sleep at night.
I feel like a researcher, observing her from day to day.
I just wish I were as detached as a scientist. Instead, I get upset by her refusal to take her meds or by her insistence that someone is a killer, that the Filipino caregiver for the Scotsman John across the hall is a "bad boy" who steals her money and comes into her room at night with evil intentions.
Occasionally I succumb to the temptation to argue with her. The only thing more crazy than arguing with someone who's drunk is arguing with a person who has dementia.
~~~
Last night I realized that her agitation was probably going to be followed by a sleepy day when it would be pointless to take her to church.
Nevertheless, I got up today and went to pick her up and take her to church anyway. When a people are in a coma-like state, you just don't know how much of their surroundings they are perceiving. A bit of movement and stimulation probably can't hurt.
Sure enough, she was sitting in her wheelchair with her head dropped to one side, barely responding to my greeting, not opening her eyes.
The staff reported that she had been too sleepy to eat breakfast, her favorite meal. At least she had drunk orange juice and V-8.
I went to get her purse and sunhat, then wheeled her off to the car. Usually she holds onto the car door frame and supports her weight a little as I put her into the car, but today I had to lift her, all 105 pounds.
I didn't try to make conversation in the car because she was so out of it, but I did turn on classical music.
"Would you like any Acapulco nuts?" I then tried asking her.
"Yes, I would" she mumbled, so I opened the can of Planter's cashews and put it in her lap. She ate them as we drove.
Pistachio nuts are what she really likes, but she can never remember their name and asks for Acapulco nuts. Cashews are easier to find and soft like pistachios, so sometimes she has to make do with them. I don't give her peanuts or almonds or anything hard to chew.
"We'll go to church and then go to the store to buy a few things and then go to my house," I said
"Got to buy toilet paper," she said.
Wow! I would have forgotten, but she remembered that her bathroom was low on toilet paper and that yesterday we had agreed to buy more today. She was reminding me. I was impressed with what her brain could do even in this sleepy state.
When I got Mom out of the car, I found partly chewed cashews in her lips and front teeth, falling out of her mouth. I wiped her mouth.
In church she sat motionless in her wheelchair, not talking.
When I tried to press the offering envelope into her hand, she couldn't hold onto it or drop it in the offering plate, usually a high point of the service for her.
Unfortunately, it was Communion Sunday. I wasn't going to take her up, but I had to move her wheelchair so others could return to their seats after Communion. When I moved her to clear the aisle, however, she kind of woke up, so I decided to take her anyway.
At the altar I took a bit of bread, dipped it in grape juice and offered it to her, but she clamped her mouth shut at the first taste of it. It dropped into her lap, and I picked it up with a tissue.
0 for 2.
After church I did errands to a bookstore, the bank and Walgreen's. She slept peacefully, slouched to one side in the front seat.
Thinking perhaps I should just take her back to her residence and let her sleep in her recliner, I asked her, "Would you like to go to my house?"
"Yes, I want to go to your house," she said without opening her eyes.
Once there, she continued to sleep in the front seat while I unloaded the car, set the wheelchair next to the front seat and open door, and went to talk to neighbors for15 minutes.
Finally I took her into my house and set a cup of orange juice and a plate of grapes in front of her. She ate them with closed eyes.
I made her cinnamon toast, and she ate it too with a small glass of milk.
"I want one of those pears!" she suddenly demanded.
"They're bananas," I said. "Would you like one?"
"Yes, half of one," she said.
I brought both canned pears and half a banana, but then a close friend called. I talked for forty minutes with her while Mom sat slumped at the table, occasionally demanding to go home. She ate the banana but none of the pears.
"So you want to go back to Sunrise?" I asked her when the conversation ended.
"Yes, take me back!" she insisted.
I drove her back, took her to the toilet, and set her up in her recliner with her feet raised. In her lap I put the church bulletin and the funny section from today's LA Times. She never opened her eyes or mouth during any of this.
Then while I was tidying the room before leaving, she mumbled something. (On a sleepy day she doesn't talk clearly.)
"What did you say?" I asked.
"I want to go to your house," she said without opening her eyes.
"You were just at my house for three hours!" I reminded her.
"I want to go again," she said.
"I have to leave now to go cook dinner for John," I lied. "See you tomorrow."
I fled to a 5 pm Al-Anon meeting before the argument got any worse, determined not to engage in debate with dementia.
Mom has these about once a week now. A year or two ago they were less frequent.
The other five days of the week she is pretty normal: talkative, perhaps napping a couple of hours in the morning or afternoon (or both) but able to wake up and eat her meals, to calm down and go to sleep at night.
I feel like a researcher, observing her from day to day.
I just wish I were as detached as a scientist. Instead, I get upset by her refusal to take her meds or by her insistence that someone is a killer, that the Filipino caregiver for the Scotsman John across the hall is a "bad boy" who steals her money and comes into her room at night with evil intentions.
Occasionally I succumb to the temptation to argue with her. The only thing more crazy than arguing with someone who's drunk is arguing with a person who has dementia.
~~~
Last night I realized that her agitation was probably going to be followed by a sleepy day when it would be pointless to take her to church.
Nevertheless, I got up today and went to pick her up and take her to church anyway. When a people are in a coma-like state, you just don't know how much of their surroundings they are perceiving. A bit of movement and stimulation probably can't hurt.
Sure enough, she was sitting in her wheelchair with her head dropped to one side, barely responding to my greeting, not opening her eyes.
The staff reported that she had been too sleepy to eat breakfast, her favorite meal. At least she had drunk orange juice and V-8.
I went to get her purse and sunhat, then wheeled her off to the car. Usually she holds onto the car door frame and supports her weight a little as I put her into the car, but today I had to lift her, all 105 pounds.
I didn't try to make conversation in the car because she was so out of it, but I did turn on classical music.
"Would you like any Acapulco nuts?" I then tried asking her.
"Yes, I would" she mumbled, so I opened the can of Planter's cashews and put it in her lap. She ate them as we drove.
Pistachio nuts are what she really likes, but she can never remember their name and asks for Acapulco nuts. Cashews are easier to find and soft like pistachios, so sometimes she has to make do with them. I don't give her peanuts or almonds or anything hard to chew.
"We'll go to church and then go to the store to buy a few things and then go to my house," I said
"Got to buy toilet paper," she said.
Wow! I would have forgotten, but she remembered that her bathroom was low on toilet paper and that yesterday we had agreed to buy more today. She was reminding me. I was impressed with what her brain could do even in this sleepy state.
When I got Mom out of the car, I found partly chewed cashews in her lips and front teeth, falling out of her mouth. I wiped her mouth.
In church she sat motionless in her wheelchair, not talking.
When I tried to press the offering envelope into her hand, she couldn't hold onto it or drop it in the offering plate, usually a high point of the service for her.
Unfortunately, it was Communion Sunday. I wasn't going to take her up, but I had to move her wheelchair so others could return to their seats after Communion. When I moved her to clear the aisle, however, she kind of woke up, so I decided to take her anyway.
At the altar I took a bit of bread, dipped it in grape juice and offered it to her, but she clamped her mouth shut at the first taste of it. It dropped into her lap, and I picked it up with a tissue.
0 for 2.
After church I did errands to a bookstore, the bank and Walgreen's. She slept peacefully, slouched to one side in the front seat.
Thinking perhaps I should just take her back to her residence and let her sleep in her recliner, I asked her, "Would you like to go to my house?"
"Yes, I want to go to your house," she said without opening her eyes.
Once there, she continued to sleep in the front seat while I unloaded the car, set the wheelchair next to the front seat and open door, and went to talk to neighbors for15 minutes.
Finally I took her into my house and set a cup of orange juice and a plate of grapes in front of her. She ate them with closed eyes.
I made her cinnamon toast, and she ate it too with a small glass of milk.
"I want one of those pears!" she suddenly demanded.
"They're bananas," I said. "Would you like one?"
"Yes, half of one," she said.
I brought both canned pears and half a banana, but then a close friend called. I talked for forty minutes with her while Mom sat slumped at the table, occasionally demanding to go home. She ate the banana but none of the pears.
"So you want to go back to Sunrise?" I asked her when the conversation ended.
"Yes, take me back!" she insisted.
I drove her back, took her to the toilet, and set her up in her recliner with her feet raised. In her lap I put the church bulletin and the funny section from today's LA Times. She never opened her eyes or mouth during any of this.
Then while I was tidying the room before leaving, she mumbled something. (On a sleepy day she doesn't talk clearly.)
"What did you say?" I asked.
"I want to go to your house," she said without opening her eyes.
"You were just at my house for three hours!" I reminded her.
"I want to go again," she said.
"I have to leave now to go cook dinner for John," I lied. "See you tomorrow."
I fled to a 5 pm Al-Anon meeting before the argument got any worse, determined not to engage in debate with dementia.
Lewy Body Moment
I pull into the driveway
and park facing the sign that says
Warning: Bad Dog.
Usually it delights her.
"We're here at my house," I say
but she does not answer.
Her hand, resting with fingers in
the can of cashews,
does not stir.
She remains bent over to her left,
humming lightly,
her elbow on the arm rest,
her eyes closed behind sunglasses.
What an elegance she presents:
pleated white wool skirt,
yellow-checked blouse with appliques
(daffodils and butterflies)
open over a yellow turtleneck,
pearls, green earrings,
straw hat tied 'round her neck with a scarf.
She snores now and her hand stirs.
Dr. Lewy would understand:
it's a sleepy day.
and park facing the sign that says
Warning: Bad Dog.
Usually it delights her.
"We're here at my house," I say
but she does not answer.
Her hand, resting with fingers in
the can of cashews,
does not stir.
She remains bent over to her left,
humming lightly,
her elbow on the arm rest,
her eyes closed behind sunglasses.
What an elegance she presents:
pleated white wool skirt,
yellow-checked blouse with appliques
(daffodils and butterflies)
open over a yellow turtleneck,
pearls, green earrings,
straw hat tied 'round her neck with a scarf.
She snores now and her hand stirs.
Dr. Lewy would understand:
it's a sleepy day.
Saturday, May 05, 2007
Midnight Mania
Just got a call from Susan, a caregiver at Sunrise, at 9:40 pm still trying to get Mom to take her 9 pm meds, which include Coumadin.
She thought that I could get Mom to take them if I talked to her.
I told her that recently even I can't get her to take them--even in person.
After reassuring Susan that it's okay if she can't get Mom to take the meds, I talked to Mom. She was raving about a man across the hall killing people, along with other distractions from the subject of taking her meds.
"This woman's husband shot a guy," she said. "He's a dope and--"
"No, Susan's husband did not kill anyone," I argued, falling into the trap. "That's not your business. Your job is to take your medicines and get a good night's sleep so you can go to church tomorrow."
"You don't understand what's going on here!" she insisted.
"I won't take you to church tomorrow if you don't take your meds and get a good night's sleep! "
"But they are killing people!"
Soon I was yelling at her over the phone: "No one is killing anyone! If you don't take the meds, fine. You can stay home in bed and not go to church. That's your choice! I'm going to hang up now."
I guess the Time magazine that arrived today contained something about the murders at Virginia Tech. I need to make sure she doesn't get hold of anything like that.
When I visited her this afternoon at 3 pm, she was about as sharp-witted as she can be--but now that I think of it, she was on the high edge of sharp (a little manic).
I took her to the grocery store and to my home, where we waited in vain for one of my two daughters or my husband to appear. It turned out they had been at the house earlier but had all three left to get a hamburger.
After an hour of cinnamon raisin toast, grapes, strawberries, a banana,and waiting, I made a few phone calls, learned that they weren't going to be around, took Mom back to Ocean View, and spent an hour organizing her room and toileting her.
Now she is agitated, refusing meds, hard to manage.
Such a quandry, what to do about her. I should just let the staff deal with it until the director of her residence decides she's too much of a psych case and kicks her out.
~~~
After calming down from the phone call, I decided to go over to encourage the staff and to instruct them in how to deal with her. I did not let her know that I had come; I definitely don't want to reinforce bad behavior by rushing over to see her whenever she throws a fit.
This is a transition week when she no longer has the private caregivers she has had every night for 2 1/2 years. I am keeping Connie Tuesday and Thursday evening only--the other five nights the Ocean View staff has to learn to cope with her.
I went to support the Ocean View caregivers, to thank them for their patience in dealing with her, and to demonstrate that I can be there in five minutes if they have a real emergency.
I need to cut back on the private caregivers, since she has only $100,000 left, but she needs a person experienced in dealing with her. On her agitated days she is hard to manage; on her sleepy days she is hard to lift.
I told them:
--Respect her wish not to take her meds. Just give up on the meds. Often she will take them after the fun of fighting ends.
--She has hallucinations: she sees things.
"Oh yes, she says there's a man in the room and points 'Right there!'" Tracy, one of the night caregivers reported. She was interested to hear these behaviors identified as hallucinations.
--She also has delusions, often rooted in nightmares that are real events to her. The Virginia Tech murders are right here; the murderer is a man across the hall.
--She often has an extremely sleepy day after an agitated evening like this. Her computer just doesn't boot up.
--All these behaviors are her Lewy Body dementia, very different from Alzheimer's.
--I am five minutes away. You can call me at any time and I can be there in five minutes if there is a real emergency.
--Thank you for dealing with her.
What a handful she is. I expect that she will have a sleepy day tomorrow and not even realize she is being taken to church.
She thought that I could get Mom to take them if I talked to her.
I told her that recently even I can't get her to take them--even in person.
After reassuring Susan that it's okay if she can't get Mom to take the meds, I talked to Mom. She was raving about a man across the hall killing people, along with other distractions from the subject of taking her meds.
"This woman's husband shot a guy," she said. "He's a dope and--"
"No, Susan's husband did not kill anyone," I argued, falling into the trap. "That's not your business. Your job is to take your medicines and get a good night's sleep so you can go to church tomorrow."
"You don't understand what's going on here!" she insisted.
"I won't take you to church tomorrow if you don't take your meds and get a good night's sleep! "
"But they are killing people!"
Soon I was yelling at her over the phone: "No one is killing anyone! If you don't take the meds, fine. You can stay home in bed and not go to church. That's your choice! I'm going to hang up now."
I guess the Time magazine that arrived today contained something about the murders at Virginia Tech. I need to make sure she doesn't get hold of anything like that.
When I visited her this afternoon at 3 pm, she was about as sharp-witted as she can be--but now that I think of it, she was on the high edge of sharp (a little manic).
I took her to the grocery store and to my home, where we waited in vain for one of my two daughters or my husband to appear. It turned out they had been at the house earlier but had all three left to get a hamburger.
After an hour of cinnamon raisin toast, grapes, strawberries, a banana,and waiting, I made a few phone calls, learned that they weren't going to be around, took Mom back to Ocean View, and spent an hour organizing her room and toileting her.
Now she is agitated, refusing meds, hard to manage.
Such a quandry, what to do about her. I should just let the staff deal with it until the director of her residence decides she's too much of a psych case and kicks her out.
~~~
After calming down from the phone call, I decided to go over to encourage the staff and to instruct them in how to deal with her. I did not let her know that I had come; I definitely don't want to reinforce bad behavior by rushing over to see her whenever she throws a fit.
This is a transition week when she no longer has the private caregivers she has had every night for 2 1/2 years. I am keeping Connie Tuesday and Thursday evening only--the other five nights the Ocean View staff has to learn to cope with her.
I went to support the Ocean View caregivers, to thank them for their patience in dealing with her, and to demonstrate that I can be there in five minutes if they have a real emergency.
I need to cut back on the private caregivers, since she has only $100,000 left, but she needs a person experienced in dealing with her. On her agitated days she is hard to manage; on her sleepy days she is hard to lift.
I told them:
--Respect her wish not to take her meds. Just give up on the meds. Often she will take them after the fun of fighting ends.
--She has hallucinations: she sees things.
"Oh yes, she says there's a man in the room and points 'Right there!'" Tracy, one of the night caregivers reported. She was interested to hear these behaviors identified as hallucinations.
--She also has delusions, often rooted in nightmares that are real events to her. The Virginia Tech murders are right here; the murderer is a man across the hall.
--She often has an extremely sleepy day after an agitated evening like this. Her computer just doesn't boot up.
--All these behaviors are her Lewy Body dementia, very different from Alzheimer's.
--I am five minutes away. You can call me at any time and I can be there in five minutes if there is a real emergency.
--Thank you for dealing with her.
What a handful she is. I expect that she will have a sleepy day tomorrow and not even realize she is being taken to church.
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