Moderated by Robin Ketelle, RN, UCSF MAC
For Leslie Wolf:
Q: How do you stay positive?
A: You just have to, have a great support network, keep going.
Q: Do you have any daily practices?
A: No, but I hide it well too, you just keep going. Grit.
Q: Leslie what kind of meds do you take?
A: I take Nodoz, antidepressant, heartburn, and Cinnamet/Carbidoba. Didn’t work for her at first, but now it does and she needs it. She now goes to see someone just to regulate her meds.
Q: What is your best hack/tip to function daily?
A: Best tip is to “do it now” and ask for help
For Phil Myers:
Q: What kinds of things would you record in the binder that you mentioned?
A: different reports that you’d get from your doctor, symptoms, what they said, how you should treat them. Get copies of tests. You don’t know what might be a factor. You get a lot of information; keep taking it to each doctor.
A (Leslie): I take notes on excel or word – when was the last time you got tests, dates, shots, etc. Saves you a lot of time if you can just hand your doctors a piece of paper.
Q: Did your children agree with advance care decisions made by your wife?
A: Yes, we had a good faith. We were a catholic family, brought all of our four kids together.
Q: Did you talk about it just the two of your first?
A: Yes, reached the decisions what she wanted, and then got the family together and told them.
For Dr. Jeanette Brown:
Q: Do you have swallowing problems?
A: I don’t, yet. I’m sure I will at some point.
Q: Exercise – what forms are best and how intense
(Jeanette Brown): I exercise every day. I joined a senior center in which I do a class. Combination of aerobics and non-aerobics for about an hour a day.
(Donna Schempp): For caregivers, anything that moves your body works
(Phil Myers): as intense as you can make it (break a sweat for your heart) it’s the moving of all the different parts that’s important. Whatever you think you might not want to use in the future.
Q: When do you decide to tell family members/other people about what’s going on?
Phil Myers: It’s an individual thing, it’s very important. And the main thing is to think about it, and remember that when you tell people, it’s going to be emotional.
Jeanette Brown: I’ve told everybody and they’re fully aware, and it is very individual
Donna Schempp: The longer you’re a caregiver, the more people disappear. You’re not available, diagnosis scares people, you really have to cultivate staying connected. You may have to be the one that does the initial outreach.
Leslie Wolf: Only one of my coworkers knows fully. It’s very hard not to tell. Tries to push it off as a back problem.
Q: Does anyone want to say anything about his or her groups?
Jeanette Brown: We’ve had a couple of meetings and I really enjoy them. Anyone who wants to join in, please do. I was surprised there wasn’t one in San Francisco. One person brings her caregiver; otherwise I don’t think its necessary to bring caregiver.
Donna Schempp: It’s good to separate groups, so everyone can feel like they are speaking their minds and wont hurt anyone’s feelings
Leslie Wolf: Coming to these meetings just helps me see where I’m going to be at and lets me know what to expect and when, and it is so important.
Q for the mothers: How do you talk to your children, what’s your approach?
Jeanette Brown: I don’t discuss it very much with my son. He’s definitely aware of it, and I think that this will make me talk with him more.
Leslie Wolf: Try to explain it, but for mine its not as obvious. Until things get really bad, I don’t think it’s going to come to reality for them.
Q: PSP, first word is progressive. Saw it on one of the slides and part of the progression. How do you deal with the isolation that can come to you with this and how do you still bring meaning to your life?
Jeanette Brown: I deal with it with my friends. I continue to go out to dinner and lunch and all of that, and that’s’ very helpful. But my guess is that they’ll tire up eventually.
Leslie Wolf: They tell you to reduce the stress, and that’s a joke. I’ve tried to give up a little. Giving in to having help and divvy up responsibilities. You figure out how to divide up, ask for help, and use all the resources you have available.
Jeanette Brown: Asking for help is very important, and that’s what I do with my friends. I ask them to take me to dinner/lunch and all of that.
Donna Schempp: You have to grieve. Just allow yourself to be aware of yourself and your grief.