There is a turning-the-corner thing that seems to be happening, as indicated by:
- a new prospective Indonesia project
- ending a 2-year program of almost-monthly trips across country
- mom in hospice
- a long-time consulting gig coming to a ragged close
- a major change in dietary practices
Along with these obvious (and converging) signals of change, I'm noticing a high level of anger again - almost at the levels I experienced in the summer of 2006 when the reality of my Mom Project hit home.
The places I notice the anger are small incidents with heightened response. Yesterday I was in a Pottery Barn, and found the 2 perfect-size bowls then had to wait too long in line while clerks chatted with friends and other customers grew antsy and annoyed. Finally got to a clerk who said, "Oh, you can't get 2 bowls, these are priced only for 4 bowls". I banged the bowls down on the counter, said that was ridiculous, and walked out the door. I heard Jeffrey say, "Thank you" to the clerk, and wondered what he was thanking her for - being unwilling to divide by two? Signal: anger with a clerk transferred quickly to my husband.
These little rages don't dissipate quickly. That one ended a pleasant shopping trip on a bad note, and I carried it with me for too long. Later, when trying to deal with my new version of Quicken to get my financial records up to date, I blew up again, and this time was seriously disabled - I shut down the computer, couldn't think of what to do, and was unable to have a rational conversation.
Today I'm cleaning up old files from a conference I've been chairing for 10 years, and found a 2006 conference email that said, in part: "Sorry no time to talk yesterday - making lunch for mom. I had to rescue her on Tuesday (I did the Advisory Board call at a roadside stop)." Another message in that same chain said, "I'm so thrown out of the park by the Advisory Board call that I'm looking to find a conference chairperson who can do the job." Excessive negative response.
It's time to take a deep breath again. These little rages are costly. I am going to take a bag of cornbread stuffing over to the little lake here at Mill Run and feed the ducks and geese. I want to stop being an impending Terrible Two Temper Tantrum, and perhaps can accomplish this by re-connecting to a greater world. Something with feathers.
Sunday, November 8, 2009
Tuesday, November 3, 2009
Assisted living
I got out of the pit yesterday in time for a business meeting at 3:30. As I was driving to the meeting, I hoped that the nice man at the coffee shop would be behind the counter. Talking with him always gives me a lift - and he was there! As I placed my coffee-cookie order, he showed me a picture of himself in his Halloween costume (an undershirt and a magnificent cowboy hat) and we laughed at how terrific he looked in such a simple getup.
This little encounter swept away the cobwebs of despond and I was able to be present for the meeting. I don't know this man's name, and he doesn't know mine. We became "friends" when one day I stepped out of our anonymity and commented on his weight loss. He was so happy that his efforts were noticed that we made a nice connection. Now we always share a little something with each other when I come in for a coffee, and our little exchanges create happiness.
The 3:30 meeting went well, but was for the purpose of addressing the dregs of a long-term consulting project - dealing with the dregs, completing details with integrity. The only juice left in it is the bonus of finishing a project well.
Another meeting, this morning - at another coffee shop - was quite a different opening. Different consultants, new commitments, and a fresh opportunity to be part of something wonderful with a lasting benefit to another entire country: Indonesia, a place dear to my heart since I traveled there long ago.
Something is afoot. Something is turning. Perhaps "I" am steering something after all, though not in the familiar ways of planning and implementation. It seems my passion and purpose are creating my future even in unlikely circumstances.
Don't shoot me yet.
This little encounter swept away the cobwebs of despond and I was able to be present for the meeting. I don't know this man's name, and he doesn't know mine. We became "friends" when one day I stepped out of our anonymity and commented on his weight loss. He was so happy that his efforts were noticed that we made a nice connection. Now we always share a little something with each other when I come in for a coffee, and our little exchanges create happiness.
The 3:30 meeting went well, but was for the purpose of addressing the dregs of a long-term consulting project - dealing with the dregs, completing details with integrity. The only juice left in it is the bonus of finishing a project well.
Another meeting, this morning - at another coffee shop - was quite a different opening. Different consultants, new commitments, and a fresh opportunity to be part of something wonderful with a lasting benefit to another entire country: Indonesia, a place dear to my heart since I traveled there long ago.
Something is afoot. Something is turning. Perhaps "I" am steering something after all, though not in the familiar ways of planning and implementation. It seems my passion and purpose are creating my future even in unlikely circumstances.
Don't shoot me yet.
Monday, November 2, 2009
On Being Good
Just returned from another visit. Mom has gained another pound, is eating well, enjoying doing puzzles after lunch, generally cheerful and all the staff love her.
On the way home, I thought I was going to cry. I so want to be free of this responsibility. It takes up so much of my life and there are so many things I want to be free to do. I just want to cry.
What a terrible thing that at the same time, I know I am doing a Good Thing. The Right Thing. And I know that I will not be free until she dies. It has been a full four years since I chose to take on ensuring her end-of-life care. I had no idea it would take such a big bite out of my life. It is an irremediable loss, and I hate facing that. Because I am doing a Good Thing. Screw Good. I want control over my life again, and it seems that is gone forever. All I can do to avoid sinking into a pit of depression.
I never aspired to be a Good Person. Always thought that was a highly overrated position. Now I know I was right about that. Being Good Sucks. Shoot me.
On the way home, I thought I was going to cry. I so want to be free of this responsibility. It takes up so much of my life and there are so many things I want to be free to do. I just want to cry.
What a terrible thing that at the same time, I know I am doing a Good Thing. The Right Thing. And I know that I will not be free until she dies. It has been a full four years since I chose to take on ensuring her end-of-life care. I had no idea it would take such a big bite out of my life. It is an irremediable loss, and I hate facing that. Because I am doing a Good Thing. Screw Good. I want control over my life again, and it seems that is gone forever. All I can do to avoid sinking into a pit of depression.
I never aspired to be a Good Person. Always thought that was a highly overrated position. Now I know I was right about that. Being Good Sucks. Shoot me.
Saturday, October 31, 2009
Tango on? I don't think so.
From an article in the New York Times: http://health.nytimes.com/ref/health/healthguide/esn-alzheimers-ess.html
Alzheimer’s is roaring down — a train wreck to come — on societies all over the world. People in this country spend more than a $1 billion a year on prescription drugs marketed to treat it, but for most patients the pills have only marginal effects, if any, on symptoms and do nothing to stop the underlying disease process that eats away at the brain. Pressed for answers, most researchers say no breakthrough is around the corner, and it could easily be a decade or more before anything comes along that makes a real difference for patients.
Meanwhile, the numbers are staggering: 4.5 million people in the United States have Alzheimer’s, 1 in 10 over 65 and nearly half of those over 85. Taking care of them costs $100 billion a year, and the number of patients is expected to reach 11 million to 16 million by 2050. Experts say the disease will swamp the health system.
The advice is painfully and ironically reminiscent of the 1960s and ’70s: go with the flow.
- If a patient asks for her mother, for instance, instead of pointing out that her mother has been dead for 40 years, it is better to say something like, “I wish your mother were here, too,” and then maybe redirect the conversation to something else, like what’s for lunch.
- If Dad wants to polish off the duck sauce in a Chinese restaurant like it’s a bowl of soup, why not?
- If Grandma wants to help out by washing the dishes but makes a mess of it, leave her to it and just rewash them later when she’s not looking.
Pull out old family pictures to give the patient something to talk about. Learn the art of fragmented, irrational conversation and follow the patient’s lead instead of trying to control the dialogue. Basically, just tango on. And hope somebody will do the same for you when your time comes.
From me to this advice: Tango on, my ass. You presume I am a caregiver, and aspire to being a more effective caregiver. Not so. I want a legally enforceable Condition Of Life Agreement available to every American. And death panels to stop pouring resources into disastrous and terminal end-of-life situations.
Alzheimer’s is roaring down — a train wreck to come — on societies all over the world. People in this country spend more than a $1 billion a year on prescription drugs marketed to treat it, but for most patients the pills have only marginal effects, if any, on symptoms and do nothing to stop the underlying disease process that eats away at the brain. Pressed for answers, most researchers say no breakthrough is around the corner, and it could easily be a decade or more before anything comes along that makes a real difference for patients.
Meanwhile, the numbers are staggering: 4.5 million people in the United States have Alzheimer’s, 1 in 10 over 65 and nearly half of those over 85. Taking care of them costs $100 billion a year, and the number of patients is expected to reach 11 million to 16 million by 2050. Experts say the disease will swamp the health system.
The advice is painfully and ironically reminiscent of the 1960s and ’70s: go with the flow.
- If a patient asks for her mother, for instance, instead of pointing out that her mother has been dead for 40 years, it is better to say something like, “I wish your mother were here, too,” and then maybe redirect the conversation to something else, like what’s for lunch.
- If Dad wants to polish off the duck sauce in a Chinese restaurant like it’s a bowl of soup, why not?
- If Grandma wants to help out by washing the dishes but makes a mess of it, leave her to it and just rewash them later when she’s not looking.
Pull out old family pictures to give the patient something to talk about. Learn the art of fragmented, irrational conversation and follow the patient’s lead instead of trying to control the dialogue. Basically, just tango on. And hope somebody will do the same for you when your time comes.
From me to this advice: Tango on, my ass. You presume I am a caregiver, and aspire to being a more effective caregiver. Not so. I want a legally enforceable Condition Of Life Agreement available to every American. And death panels to stop pouring resources into disastrous and terminal end-of-life situations.
Friday, October 30, 2009
Doggie distractions
Mom in quiet good spirits today. She is receiving her mail again, and there was a cute post card (picture of a momma duck with baby duck) from Wende and a long letter in a card from Donna. We talked a bit, mostly about the postcard and letter, but also about trees turning red and gold.
In the social circle, mom couldn't pull her attention away from the letter. I don't know how much she understood, but she was totally absorbed in the typewritten page for a very long time. I shared the picture with the other ladies, one at a time - I hold it up in front of them, then watch their face change as the sweet photo registers in their mind. They all melt when they see these wonderful animal pictures Wende has found on postcards.
Then the dogs came in. Little tiny dogs, two of them, bouncing for joy and touching each lady on the leg or foot, testing to see if they are welcome. All the ladies are fascinated, watching every move. Except mom - she's reading the letter. Finally a dog came up to sit on her lap, and she turned over the letter to me to focus on the dog.
Notice I keep referring to the ladies. Bill, the only male member of the group for the last several months, is gone and now his room has been cleaned and emptied. Over 100 years old, he held on until his family could be with him. The Activity Ladies were very involved in his dying, but the ladies around the circle seem unaware of such changes in the group's makeup. Doggie distractions assist this, as does loss of memory.
In the social circle, mom couldn't pull her attention away from the letter. I don't know how much she understood, but she was totally absorbed in the typewritten page for a very long time. I shared the picture with the other ladies, one at a time - I hold it up in front of them, then watch their face change as the sweet photo registers in their mind. They all melt when they see these wonderful animal pictures Wende has found on postcards.
Then the dogs came in. Little tiny dogs, two of them, bouncing for joy and touching each lady on the leg or foot, testing to see if they are welcome. All the ladies are fascinated, watching every move. Except mom - she's reading the letter. Finally a dog came up to sit on her lap, and she turned over the letter to me to focus on the dog.
Notice I keep referring to the ladies. Bill, the only male member of the group for the last several months, is gone and now his room has been cleaned and emptied. Over 100 years old, he held on until his family could be with him. The Activity Ladies were very involved in his dying, but the ladies around the circle seem unaware of such changes in the group's makeup. Doggie distractions assist this, as does loss of memory.
Sunday, October 25, 2009
Incarceration follow-up + Going Postal
Interesting both comments on the "Incarceration" post assumed it was a "her". In fact, it was a guy. His whole quote in his first email to me was, "Can I ask you a question... this whole memory ward thing... why couldn't you do this at home? Why is it necessary to incarcerate and drug your mother?"
Whew. I crafted a response and we had quite an email dialogue for the whole day. I haven't heard back after that day's volley of communications. Perhaps I should share the whole thing I wrote back to him? It really gave me pause - I wanted to be rip-roaring mad, but I just wasn't. It seemed a genuine question. So I told him why I don't have her here at home.
Wende's postcards have not been arriving. She's sending, but now I'm finding them in mom's room - cards I have never seen. Nobody knows how they got there. Wende has notified the Post Office - they even gave her a case number. And they're going to get back to her this week. We're hoping nobody goes postal, but we're also kind of bothered that these cards, which give me a way to talk about Wende and whatever the picture on the card is about, when I'm visiting mom. Keep you posted.
Whew. I crafted a response and we had quite an email dialogue for the whole day. I haven't heard back after that day's volley of communications. Perhaps I should share the whole thing I wrote back to him? It really gave me pause - I wanted to be rip-roaring mad, but I just wasn't. It seemed a genuine question. So I told him why I don't have her here at home.
Wende's postcards have not been arriving. She's sending, but now I'm finding them in mom's room - cards I have never seen. Nobody knows how they got there. Wende has notified the Post Office - they even gave her a case number. And they're going to get back to her this week. We're hoping nobody goes postal, but we're also kind of bothered that these cards, which give me a way to talk about Wende and whatever the picture on the card is about, when I'm visiting mom. Keep you posted.
Tuesday, October 20, 2009
Incarceration
It's the season when my clients realize the end of the year is nigh and they have some serious results to produce. So I'm busy.
And our book is high on the list of business books again this month, and there are programs to develop and market. So I'm busy.
And the conference I chair every May in San Francisco is gearing up with 15 team leaders and all their documents and planning to coordinate. So I'm busy.
This made sitting in mom's community circle today almost painful. I lugged a bunch of dirty laundry out of her closet, then sat with her and the ladies for as long as I could stand it. The old man (101 years) is apparently dying in the room right off the social circle - the Activities Lady put on some music in his room so we didn't hear his gaspy noises (she said she hopes his daughter, who will arrive from CA tomorrow, gets there in time).
Mom was drifting in and out of sleep while I was there, but I didn't want to leave and have the Activities Lady know what a creep I am for not spending more time with my mother. I made it to 25 minutes then bolted.
Someone asked me last week why I "incarcerated" my mother and didn't keep her at home. Yipes. Shoot me first.
And our book is high on the list of business books again this month, and there are programs to develop and market. So I'm busy.
And the conference I chair every May in San Francisco is gearing up with 15 team leaders and all their documents and planning to coordinate. So I'm busy.
This made sitting in mom's community circle today almost painful. I lugged a bunch of dirty laundry out of her closet, then sat with her and the ladies for as long as I could stand it. The old man (101 years) is apparently dying in the room right off the social circle - the Activities Lady put on some music in his room so we didn't hear his gaspy noises (she said she hopes his daughter, who will arrive from CA tomorrow, gets there in time).
Mom was drifting in and out of sleep while I was there, but I didn't want to leave and have the Activities Lady know what a creep I am for not spending more time with my mother. I made it to 25 minutes then bolted.
Someone asked me last week why I "incarcerated" my mother and didn't keep her at home. Yipes. Shoot me first.
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