Lauren Kessler (laurenkessler) Mon 12 Nov 07 18:22
SCOTT...so sorry to have missed you at Wordstock. How did your session for teachers go? Mine was for writers -- billed as "A 12-step program for writers: How to stop self-sabotaging and start writing." Online convos, blogging, etc., btw, come under the category of self-sabotage!
Cynthia Dyer-Bennet (cdb) Mon 12 Nov 07 18:46
>>>Who decides when dementia has become a fate worse than death? > The only person who can make that decision with complete moral > integrity is the one person who is no longer competent to make that > decision. Talk about a terrible bind! I know a woman who died of Alzheimer's recently. I mean, it's not that she had Alzheimer's but it was pneumonia, or a stroke, or cancer that took her away. She died of end-stage Alzheimer's. Like my mother, she did all the right things. Took good care of her health, got plenty of physical exercise, mental exercises, yadda yadda. She was so dang healthy, so strong, that none of the usual suspects came along and killed her. Instead she spent the last year of her life in bed, curled up full fetal, her hands clenched so tight that the flesh of her palms were infested with a fungus. She was essentially insensate, non-responsive, yet she still swallowed. So she was spoonfed some kind of gruel and turned in bed every couple hours so she wouldn't get bedsores. Many of us have made the difficult decision to have a much-loved pet euthanized when it's clear that the pet's quality of life is non-existent and that the animal has no chance of recovery. Yet we cannot offer a human beloved the same grace of a departure from an equally unacceptible existence. Because of the sanctity of life? Then why aren't we honoring those who are nearing the end of theirs by providing well-paid, well-trained people to care for them?
Public persona (jmcarlin) Mon 12 Nov 07 19:34
$8/hr is criminal. I would have to pay $10/hr to hire an illegal immigrant off the street around here to wield a shovel.
Scott MacFarlane (s-macfarlane) Mon 12 Nov 07 20:38
<"A 12-step program for writers: How to stop self-sabotaging and start writing." Online convos, blogging, etc., btw, come under the category of self-sabotage!> OK. Shame on you, Lauren, enticing me away from my writing to engage in some online convo-blogging with you here. (You need to do a future seminar on when to Kevorkianize a story or chapter that rambles and forgets itself and needs to die). On the drive down to Portland, I stopped and saw Mom and had a chance to talk at length with the young woman who is the prime caregiver at the adult home where Mom lives. Our on-line discussion here has helped me focus better on what to ask and look for. For example, I asked her about what they do with group music. She assured me that they do have music sessions as well as regular exercising, etc. It's tough for most of us to spend large chunks of time monitoring whether what is "advertised" is actually what is "delivered." Mostly, I rely on trusting my instincts with regards to the caregivers. The family that owns this home and business (the parents of the young woman I talked with) also take care of their own aging mother/grandmother in this house. The decision on where to place a parent is not unlike finding childcare for our kids. It's hard to ever know what happens in the care facility when we leave. As for the Wordstock Literary Festival, on Friday they held a "Wordstock for Teachers" program. My seminar was on Modeling/Collaboration. I taught primary and secondary teachers how to write a story together with their students, allowing the students to make as many of the authorial decisions as possible. Last summer I published an article in the magazine "Teachers & Writers" about my own experience with this process. Wordstock was a great event and I was able to make some good contacts, see my favorite writing professor (Ron Carlson), and connect with fellow MFA alums from my creative writing program.
Lauren Kessler (laurenkessler) Mon 12 Nov 07 20:47
I'm with you, Cynthia. If we (as a society) truly believed in the sanctity of life, we would do everything we would to honor and care for the elderly. We would also not invade countries and kill their citizens. I think this whole end-of-life thing -- from the quality and variety of eldercare to Death with Dignity, from the difficult philosophical/moral questions to the practical concerns needs our (as in babyboom generation) attention right now. It's not enough to struggle with -- and decry -- what is happening to our parents. We have to become activists for our own sake. You want the right to end your life on your own terms? You want a loving, caring family member to help you exit the world when it's time? (I am talking to anyone out there reading these posts...and I'm talking to myself too, psyching myself up for the task) If this is what we want, then now, while we are active and healthy, full of energy, now is when we make our move. Now is when we join those groups working to change legislation, working to improve eldercare, working to create alternatives to what we currently have. On Wednesday I am going up to Salem, the state capital, to testify at a legislative hearing on the quality of eldercare. We need to be doing stuff like this -- being vocal, making waves.
Lauren Kessler (laurenkessler) Mon 12 Nov 07 20:55
>>>$8/hr is criminal. Alas, no. $8 an hour is almost $3 an hour more than the federal minimum wage. It's what we pay the people employed in eldercare and childcare. $800 an hour is what R.J. Reynolds pays its PR consultants to come up with ways to defeat the cigarette tax in Oregon. (The money was to be spent insuring uninsured children)
Katherine Spinner (spinner) Mon 12 Nov 07 21:16
I have a meeting with the owner of my aunt's adult family home tomorrow.I will frame questions as,"How can I make it easiest for...to happen?" My biggest question,though,is,Why isn't Courtenay getting out for walks on the days when there are 2 caregivers?This is,I realize,a luxury concern. I hope I am never in the position of being spoon-fed gruel and turned regularly,but I would not work for a right to have someone choose my time of death.I can't picture any way to delegate that job and protect people who have no loved one to trust with that decision. I'm also not sure that pushing for specific requirements for eldercare without having the minimum wage be a living wage will result in as much change as the system demands.
Public persona (jmcarlin) Mon 12 Nov 07 22:15
I did not mean "criminal" in the legal sense but the moral sense.
Lisa Harris (lrph) Tue 13 Nov 07 04:17
From an off-Well Reader, Joan Dickey: Thank you for an insightful book. My husband was in a care facility for six months and I was in awe of the overworked, underpaid caregivers. After watching the activity for a month, I decided to time my daily visit in the evening after work. I fed him, brushed his teeth, and helped him change his clothes and I put him to bed. This allowed me to be with him in a caring situation and at the same time, lightened the workload for the paid caregivers. My assitance was appreciated.
Lauren Kessler (laurenkessler) Tue 13 Nov 07 12:30
Excellent point by Joan, the Off-Well Reader. If you visit during a time you can help you 1) have something to do (You are used to sitting and talking...that's not going to work now) 2) you are making sure certain tasks are completed with loving care 3) you are helping caregivers, giving them a few minutes of time to help others who have no loving relatives who visit and help. I always visited my mother at mealtimes.
Lauren Kessler (laurenkessler) Tue 13 Nov 07 12:35
Katherine: Excellent strategy >>I will frame questions as,"How can I make it easiest for...to happen?" Oregon has a very aggressive program to get all people, esp seniors, to complete "Advance directives." If you complete and sign (and have notarized) and advanced directive (you can create the language yourself), you at least have some control over the end of your life. Right now, A.D.s guide the use of extraordinary measures to stay alive (ventilators, feeding tubes, etc.) You say what you want or don't want and those orders have to be followed when you can't speak for yourself. You are not entrusting a relative or a doctor to make the decision. You have made the decision beforehand.
Paulina Borsook (loris) Tue 13 Nov 07 13:39
yeah, but those often dont hold. as i have mentioned elsewhere, my mother signed an advanced directive, and all three of us who had POA over her (me, my sister, my cousin a retired md) --- plus our gcm who had witnessed many conversations with my mother when she was till lucid on these matters --- her wishes were constantly overrided, in terms of things like keeping her on cvd meds and putting her on antiobiotics. and my/her situation is not unique. true, we werent at the feeding tube/ ventilator stage --- but it was so clear how unhappy my mother was, and it had been so clear to all of us charged to carry out her wishes that she wanted to be released (as my cousin roy said, when he saw her 'myra would NEVER have wanted to end up like this!' --- having knonw my mother even longer than i, as he is 12 yrs older than me...) --- but all the legal paperwork didnt help. what it took was changing facilities, and changing docs. <end rant>
Katherine Spinner (spinner) Tue 13 Nov 07 16:42
In Oregon and Washington we are fortunate to have the POLST,Physician Orders for Life-Sustaining Treatment,which *is* legally binding-it has to be where EMS workers can see it,as well as in hospital records.It is specific as to treatment:none,including no antibiotics or hydration;comfort care only,or everything up to and including rescusitation. It does *not* cover the situation of being able to swallow gruel,since spoon-feeding is not an extraordinary measure.For that we still need a revolution in wages and attitudes.
Paulina Borsook (loris) Tue 13 Nov 07 17:39
another enlightened thing about the pnw, POLST! bravo...
Lauren Kessler (laurenkessler) Tue 13 Nov 07 17:49
Thanks for jumping in there with a clarification, Katherine. It is INCREDIBLY important that people look at what Oregon and Washington have done and replicate it in their states. It is true that POLST does not (now) cover some of the conditions associated with end-stage Alzheimer's, but that doesn't mean it couldn't, over time, evolve in include such situations. Death with dignity is the goal. I'm telling you all, this is worth going to the streets for.
Cynthia Dyer-Bennet (cdb) Tue 13 Nov 07 19:57
Absolutely! Lauren, I have a couple more questions for you. 1) With Christmas coming up, I wanted to give individual small gifts for the caregivers who tend my mother. If you were buying presents for 8 caregivers, without a deep knowledge and understanding of their personal tastes and preferences, what would you think to get them? 2) And on a totally different subject, now that "Dancing with Rose" is out there in the universe, what's your next project? Do you have another book in the works that you can tell us about?
Paula Span (pspan) Wed 14 Nov 07 11:21
And has somebody bought the film/TV rights? I think that $8/hr wage is fairly standard for cna's and personal care attendants. Yet Robt Wood Johnson did a big survey that showed that facilities actually pay about $2500 each time a worker leaves and a new one must be hired and (sort of) trained. And of course, in some places 100 percent of that workforce turns over in a year. It would be more cost- effective to invest in some real training, in enough workers to do the job well, in oppties for advancement -- even if the wages didn't rise much. And of course, it would be so much better for the residents, too.
Cynthia Dyer-Bennet (cdb) Wed 14 Nov 07 11:43
BTW, though federal minimum wage is lower, California minimum wage is currently $7.50 an hour, and it goes up to $8 an hour on January 1. These eldercare chains in California that have been claiming they pay "above" minimum wage are going to have to either increase their pay scale for caregivers or quit acting like they're financially magnamous to their employees. I'm sorry to interrupt while we still have several questions (a couple of them mine!) still on the table, but I wanted to acknowledge that we've reached the two-week mark of this two-week conversation with Lauren Kessler. Lauren, I hope you'll be able to respond to what we've asked, and since this topic will remain open indefinitely I also hope you can stick around longer. However, it may be that other things are demanding your time and attention, Lauren, In that case, I want to say that this has been a wonderful discussion and I thank you for joining us. Thanks, also, to Katherine Spinner for leading the interview so ably.
Scott MacFarlane (s-macfarlane) Wed 14 Nov 07 12:44
Yes, thank you, Lauren, for this enlightening discussion on a most difficult subject. It was definitely helpful for me. Good luck with this book and your future writings!
mother of my eyelid (frako) Wed 14 Nov 07 13:30
I came in a little late, but this has been really informative for me. Thanks for taking the time to ask and answer!
Katherine Spinner (spinner) Wed 14 Nov 07 13:35
Lauren,it has been a privelege to be here with you.I hope to meet you in Seattle one of these days (I am so disappointed that I didn't know when you were here with "Rose").Thank you for taking time out from your current project to join us on the Well.
Paula Span (pspan) Wed 14 Nov 07 14:46
My thanks as well.
Lauren Kessler (laurenkessler) Wed 14 Nov 07 17:28
>> about individual small gifts for the caregivers. Before I was one, I would have said something like lovely soaps or moisturizers or bath gell. Now I think: Starbucks or Target gift cards...even $5. And HOW WONDERFUL that you are thinking about the caregivers. Even if you gave each only a card, you can't imagine how meaningful that would be.
Lauren Kessler (laurenkessler) Wed 14 Nov 07 17:31
>>what's your next project? Thanks for asking! I am in the midst of a book about the emotionally complex, high-drama, vital relationship between mothers and their tween/ teenage daughters. I have been immersing myself in teen girl culture -- and specifically in my own 13-yr-old daughter's life -- for the past year. And...contrary to what you might think...this work has brought us closer. Workingn title, courtesy of my favorite Green Day song, "Something Unpredictable."
Lauren Kessler (laurenkessler) Wed 14 Nov 07 17:35
>>California minimum wage is currently $7.50 an hour. Oregon's was $7.50, now up to $7.75. That's about $16,000 pre-tax for a 40-hour work week, 50 weeks of the year. OMG.
Members: Enter the conference to participate