Hello, Cheryl here and I want to talk about Beth’s most recent post on Screw Bronze.
Beth did an amazing thing for someone who is fiercely independent and has always sacrificed herself for others. She is asking for help. That simple act of making herself vulnerable took an incredible amount of courage. She doesn’t ask lightly but she wants to live and she needs help to do that.
I know that many of you are hesitant to commit to one of the “chores” Beth has outlined because you are afraid of letting her down. I understand. I fear letting her down too. I look at how much she has gone through in her life and I don’t ever want to be in the group of people who caused her any pain and suffering. I just refuse to let that fear keep me from acting.
Abi suggested using a network system where a group of people agree to do a chore and then there is someone to cover when one person is unable to keep the commitment on occasion they can ask a member of their network to fill in for that time. I think it is a brilliant idea and will help people not over use their spoons or energy crystal lines.
Beth truly needs the help to change her habits. She keeps pushing herself at the same levels she did 3 months ago. Truth is she doesn’t have the reserves to do that. She doesn’t have the reserves to push herself at the levels of 3 days ago. She is rapidly weakening. I hope the Seattle doctors and some other referrals we are working on will get her some treatment to improve her quality of life and help with energy levels and pain management. We will keep you posted on that but Beth needs help NOW.
Yesterday Beth had a collapse. She required high flow oxygen from a non-rebreather mask (gets more pure oxygen into the patient) and I had to use the ambibag to breathe for her for a while. What concerned me was that her pulse was slowing and getting rapidly weaker. I was planning scenarios in case we had to do CPR while the ambulance came. I was wondering if this was going to be the end and praying that it wasn’t. Happily, getting the high oxygen concentration into her blood allowed her body to recover. Her heart rate is back to her normal for now. What brought on the collapse? We had a conversation. The simple act of talking for 20 minutes depleted her oxygen levels to the point where her body shut down and she was on low flow supplemental oxygen at the time.
I know we are going to lose Beth. I know it is going to be sooner than I am ready for. I know this loss is coming and I ultimately can’t stop it. That doesn’t stop me from doing what is necessary to let Beth live and LIVE as long as possible. Towards that end I keep trying to stack the deck in my favor. By having you help take on the tasks and make the commitments Beth has asked for, I can do a lot to stack that deck.
Here’s a video by Train that I think fits the situation. Listen, read Beth’s blog, search your heart and help as you can.
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9 comments:
Cheryl, thanks much for speaking up for Beth. I am sure that lots of people are like me, and need some time to figure out what they can successfully do to help, and that they will help. I already told Beth what I would do. I hope it will indeed get her to rest up.
Hey guys, thanks for your explanation of what's going on as you understand it, Cheryl.
I have said that I am not sure of my ability to do and sustain something on my own owing to my own fluctuating issues, and it would be bad to let someone down, but I will very very willingly be part of a network or communal arrangement. I like Abi's suggestion; I could work with something like that.
Just for reference, I can't offer a *lot* in the way of financial support (major), but I will continue to send snail mail as much as I can as well. And I will see if I can do something from the Amazon list. Feel free to make other suggestions to me though.
I really respect someone who opens up the way Elizabeth has about this sort of thing (and also people who care for them and keep going!). So I will try to show that respect however is the best way to do it.
I think I'm more of a financial advantage than an active commitment type of guy.
I think, like Thea, I could be part of a network, though.
You've got my information, so let me know.
I have come up with a Cunning Plan - I hope I am not stepping on anyone's toes... If you want to help Elizabeth, especially by sending e-mails, please have a look at the suggestion on my blog. Please do this even if you don't think that you would be able to keep a commitment up on your own. I welcome your comments; I would like to do something which works as well as possible for as many people as possible.
Anyway, details can be found here: http://optistatic.blogspot.com/2009/01/supporting-elizabeth.html
Wow, we are getting great response for what I have come to think of as “Project Beth”. That is fantastic! I do want to address some concerns though.
I feel it is very important that we not overwhelm Beth. She is very weak at the moment and was unable to get out of bed yesterday. Beth asked me to work on coordinating this effort so she can conserve her energy for now.
Abi has had a brilliant idea and found a calendar where we can coordinate the tasks and make sure they are covered. That lets you all have a back up system in place in case you are ill or unable to email on time. For information on Abi’s plan and the system in question go to
http://optistatic.blogspot.com/2009/01/supporting-elizabeth.html
The tasks we need covered are to send emails a few times a week asking…
- Have you spent time away from the computer? What did you do?
- Have you been taking time to read? What have you read?
- How are you doing on postcard and sticker sorting?
- How is the project to sort the brain box and do thank you notes coming?
- Have you been drinking your Gatorade?
- Have you taken any time just for you?
- Have you been resting?
These days Beth is easily overwhelmed by outside stimuli, especially when she is having a day with poor cognitive levels. To avoid that I have some recommendations.
Only email about a specific task and at most once a day. Only ask about one thing such as reading or drinking gatorade. Getting multiple questions on multiple topics is very difficult for Beth. Keep the email short and light. If you want to have a deeper conversation email her separately. You may not always get a reply as that depends on how Beth is doing.
For those that are planning to send regular mail I recommend emailing Beth once it is posted so she can begin building anticipation.
For those of you offering financial assistance please email me at rangergrrlkio at juno dot com I will be mailing those of you that Beth told me about.
Thank you again for your efforts and understanding.
Cheryl
I emailed Beth about sending a surprise every week, which I will be doing-- I'm putting an automatic alert on my calendar to pick out a surprise for Beth every Monday and have it posted by Tuesday. I will email her each time.
This week's surprise was ordered and hopefully will arrive by the weekend.
Abis Idea is great, but, Hm....to me the scheme takes a lot of time to go through, is it possible for me to send e-mails anyway. When and about what would be helpful. According to the time zone (thanks again Abi) I think it's about 12, am, in BC when I usually access my computer. (Can't do it on working hours.)Would e-mails about anything at that time be helpful. Or regurarely e-mails on weekends?
thanks
Hi, is this OK:
if I mail elizabeth 22.00 CT, which I think is 12.00 in victoria. Monday-thursday. Asking her if she has been drinking liquid, and reminding her to pee. and thanking her for something like postcards, blogs etc.
I haven't read enough in the last few weeks to know what's going on, but skimming through this and seeing a video by Train mentioned made me perk up. They're my favorite band ever, and now I'm definitely going to read that post thoroughly and comment before the end of the day. I hope it helped out, too!
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