Dr. Bobs Adventure

We've created this blog for several reasons. First is to keep family and friends(including Bobs' pts.)informed of Bobs' condition while he undergoes treatment for Acute Myelogenous Leukemia(AML) at HUP. You may also write to Bob by posting a comment, which I'll print for him to read. Please feel free to pass this blog site on to anyone you think may want to join us.Instructions to blog are listed under day 12, and bobs' address etc are under day 14. Click on April Archives to find both.

Wednesday, February 06, 2013

A little help from our friends

Hi all,

Just writing to a few folks who have said in the past, "if I can help, let me know". What is it they say? Be careful what you wish for? Well, here we are.
 Bob has lost some ground and over the last few days has been weaker and not getting around as well. He's had a few falls, though no injuries, thank goodness. We've switched from our Bayada home care program to a program with HUP called "The Caring Way". It's supposed to function as a bridge between regular home care and hospice. We had broached the subject of hospice with Dr. Luger, mostly b/c more help is available. Unfortunately in hospice, things like PT, OT, lab draws and possibly even his anti-rejection meds are not allowed, since they're not considered palliative, and Bob right away said "no way, not doing that yet".
So we switched to the Caring Way which has started to provide us with a HHA(home health aide) 5 days a week for 2 hrs.a day...which is great. Unfortunately, I work 5 to 10 hour shifts, depending on which job I'm at and generally work about 3 days a week. I'm looking into private pay aides but so far the rates I've found are 20-22 dollars/hour, which would mean that I'm running my tuchus off for less than $10/hr., when the bulk of the time here with Bob will be spent sitting. Bob needs assistance to walk to the BR. He walks with the walker, but is having a tendency to list and lean, so I just shadow him. The aide that's coming will have him bathed and dressed...sigh, sometimes I find it hard to believe that I'm writing about my husband. Anyway, he'll be clean and dressed. He will most likely need help getting meals. He can feed himself. We have a stair lift and he's stable and confident using that, but when he comes downstairs there is one step from a landing that I always spot him at.

Well, I started this e-mail 2 hours ago and am just coming back to it. Have been spending lots of time on the phone(which I detest)trying to get a plan. But I need to go, so I guess to sum up, I'm asking if anyone would come to sit with Bob while I'm at work. I'm not trying to pressure anyone or make anyone feel obligated, but I know Bob has touched a lot of lives and means a lot to many people and if you want to help it would certainly be welcome and appreciated. Please bear in mind this is not an easy thing for me to ask either....like most nurses I know, I think I should be Superwoman, able to do it all in a single bound. Ha!

 I'd also to like to ask for input with hiring home care or if anyone knows someone reliable who does this for a lower rate, please let me know. Well, that about wraps it up. Gonna post this on the blog too, just to try and get as much feedback as I can. Thank you all. And please don't feel worried or embarrassed if you aren't able to help, cuz I know I'm sending this to people who work or are already taking care of their own relatives, but I'm including them to pick their brains. Alright, enough!
All our love,
Bob and Mo

The above is an e-mail that I just sent out to family and friends. I decided to include it here on the blog b/c I know there are people who read this who can possibly give me some insight or help. Thank you in advance for any input you can provide.

2 Comments:

Anonymous Anonymous said...

boy. i sure would volunteer if i was closer! He and i could watch reruns of real housewives.. ( probably drive him crazy!).. but seriously.. could you post something at a jc around there or nursing school where maybe a student might want to get some experience also? Good luck mo. .prayers and thoughts go out to both of you!.. love.. mdf

February 06, 2013 9:21 PM  
Blogger mo said...

Is jc junior college? In Scranton jc means Jewish Center! Seriously May Day, thank you for those suggestions. I know some people who teach nursing at a jc so I can kill 2 birds with one stone. Love you girl, Mo

February 06, 2013 11:05 PM  

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