Sylvia's Journal

2. Patient Advocacy: This includes things like:
Precription filling/picking up
Appointment making/rides to appointments
Calls to MSH HR and BCBSMA to figure out when paid benefits from their health insurance starts to stop (VNA), and possibly what other types of services are included in their coverage (accupuncture/alternative healing/massage therapy etc ???)
Nutrition – we need to begin to think about what the best type of food is during the recovery time – my guess is that they are going to need to eat certain types of food more than others so that tey are getting the right nutrients/vitamins in their systems (especially since they are not moving around much). I think we’d rather have them eating spinach, for example, instead of taking vitamins/pills for Iron defficiency (I don’t know a thing about this stuff).
Occupational Therapy/Physical Therapy (knowledge of what the people who come here to do with them do, and what we can do to keep Axel and Sylvia working towards goals set by the O/T and P/T folks when they are not here)
Therapy – this comes in the guise of ‘professional’ therapy with Paul, but also includes therapy with friends. There is going to be a real need to talk through a lot of what has happened, and Paul has already been a great asset, but talking to friends is very important too. When they are ready, a nice quiet afternoon sitting by the ocean and listening might be a nice gift that any of you can offer.
Other advice (medical, emotional, etc) Some of you have already offered this, and we may take you up on this soon. Joe, for instance, has a lot of experience to share in going through crisis – and in fact this helpful list was brought to life with his help). This is a bit of a vague area, but as we all know, knowledge sharing is good. I’ll leave it at that for now.
In the interest of not making this a 90 page entry, I’ll move on to category 3.
3. Counseling/Coaching This has already been addressed a bit, but the whole moving forward piece is going to be quite important. We have included Career Counseling and Transition Managemet in this category. How do we move forward, what affect will all this have on our careers/schooling. What pieces of our lives do we pick up and resume and what parts of our lives need adjusting. This event has been and will continue to be a life changing event, so how do we deal with this/what are the implications of all this? I think this will get tied into the Therapy piece, but this may also be another set of conversations that needs to happen at some point. I know that my mother has been already a bit overwhelmed by people asking her when she is going to come to work, and if she can do this project and that – and it’s just too early. This recovery is going to take a long time, and any rushing forward to get into the old swing of things just isn’t a good idea right now.
4. Caregiver Support This is a category that many of you have already helped out in, which includes:
Respite for Tessa, Steve, Sita, Jim and anyone else who comes to stay to look after Axel and Sylvia and take care of the house. We all need a break sometimes, and if people want to come and spend the night sometime, or take over for the day, or drive mum/dad to appointment – that would be great. Just call and let us know when you want to come (or we will post dates that need to be filled – which I will begin doing after I post this long novel of an entry). This also includes Filling in for me when I’m off working. I currently have some work coming up in Dallas and will be gone from the eve of August 20 (Monday I think) until midnight on August 25 (Saturday?). Tessa and Steve will still be here, and Jim will be here (but probably working during the day – we still have to sort out where (some of you should expect a phone call next week)) – but we will probably need some extra help that week. Please let us know when/if you are available to come for the day/night. I also have accepted some work in Shanghai for September. As many of you know, Tessa and Steve will be gone as of August 31st. She has to start school again in London, Ontario shortly thereafter. So, I will in general be needing a lot more help after that, but I will be gone for about a week (the week of the 17th I think? The dates aren’t nailed down quite yet) in September and will need someone/various folks to take turns spending the night/day. It is very possible that my mother’s sister from Holland may be coming to visit suring this time, but nothing is ironed out yet.
Moving on…