A Caregiver’s Guide

    • Anonymous
      March 1, 2008 at 11:57 am

      in a couple of weeks Carol will start commuting to Denver again every other week to help our daughter with her two children, Sydney (3 years) and Sawyer (2 months). This time I will not be able to come along anymore. My symptoms have deteriorated to the point that I no longer feel safe in their very small house. Three weeks ago I got a power chair which helps a lot. I don’t think there would be a way to use it there.

      Carol is terribly worried to leave me alone in the house. Volunteers of America will send a volunteer on one of the days for 2 hours. In addition, she contacted the county Office on Aging who will be giving her a small grant for respite care, $300 every six months. She hired Jill , an 18-year-old neighbor girl to come over during that time for 20 minutes each day to check up on me and help out with whatever needs to be done. Carol has written a wonderful guide for caregivers I would like to share here. Here is a link to download the file in PDF format.


    • Anonymous
      March 2, 2008 at 3:45 am

      [FONT=”Comic Sans MS”][SIZE=”2″]Norb,
      sorry you won’t be able to go along with Carol, does your daughter maybe have a web cam so that you all can at least chat in real time every day?
      I have never used one, but i hear they are pretty inexpensive, and it would sure beat phone calls.
      I found this web site when i first came home from hospital last August, recovering from GBS. Downloaded and poured over all the archives of newsletters but never really looked at the forums. Then i relapsed and went back to hosp. for another round of ivig, but when i came home the second time it hadn’t worked so well and i went into a slow steady decline mixed with depression, had gotten to the point of having to “butt bump” my way up and down stairs again.
      Then i rediscovered the web site and ‘found’ the forums and i have to tell you, Norb that it was your story at our blue marble that gave me the butt kick i needed to call my doctor and get back on track. he put me on a two week course of PP and this time (with the new dx of CIDP) i not only got better but have been steadilly improving to the point where i’ll be going back to work this month, Yay.:D
      My point is that there are Caregivers and there are Inspiration givers and i thank you for being mine.
      When i found The Tavern i started reading from the beginning, and though it took two days, i read straight thru, and my cheeks hurt from grinning so much, you guys are hysterical! They say laughter is the best medicine, and i’ll have to agree, it sure did the trick for me! Come on over and i’ll buy you a drink.[/SIZE][/FONT]

    • Anonymous
      March 2, 2008 at 1:04 pm

      Hi Veronica,
      a web cam would be a good idea but using the phone has worked in the past when I was alone here.

      I am glad my website has helped you giving you the motivation you needed. Great that you’re going back to work. It is difficult to stay at home and remain productive. So far I usually find something to do and avoid getting depressed. There are times, however, I do get bored.

      It was a beautiful day yesterday and we decided to out for an adventure. We went to a shopping strip about 2 miles away, me in my power chair. Was a bit nervous maneuvering on the sidewalks. Whenever I concentrated too much I was swaying back and forth scared to go off the side. My hands don’t work so good even with the game joystick I added to the too short power chair knob. But when I relaxed I was doing okay. Reminded me of Star Wars with Luke Skywalker (?) flying the airplane and Obi-Wan Kenobi telling him to let the FORCE take over. (noticed the “force” in your sig 😀 )

      Take care

    • Anonymous
      March 3, 2008 at 11:29 am

      [FONT=”Comic Sans MS”][SIZE=”2″]So, it’s kinda like learning to drive with Dad sitting in the passenger seat holding on to the ‘jesus strap’ for dear life while you try to pilot the old VW down a deserted road?:o I think Dad may have closed his eyes and let the Foce take over 😉
      isn’t it strange how when you concentrate on something, like your breathing for instance, what came naturally just moments before, becomes rather difficult? Or when someone is watching over your shoulder, you suddenly mess up something you’ve been doing right a hundred times over.
      Glad to see you still have your sense of humor, I’ll bet in no time you’ll be parking next to that pink T-Bird in front of the tavern and not putting a scratch on it! Go Luke!:D [/SIZE][/FONT]

    • Anonymous
      June 20, 2008 at 9:20 pm


      I just looked at your caregivers guide. What a Godsend for the next time I have to go out of town for work. Normally one of our kids check’s on dad while I’m gone, but this would be good even for them

      Thank you