JOAN’S BLOG – MONDAY, NOVEMBER 10, 2008 – ANOTHER NEUROLOGY VISIT/HOLIDAY CAREGIVER TIP #2- PLANNING AHEAD

In spite of the fact that Elan dropped Sid from the BAP III infusion trial, due to an abnormality noted on the last MRI, we accepted their offer to monitor him with blood work, cognitive testing, and MRI scans just as if he were still in the trial. It is a precaution on their part, because they are concerned about the risk of bleeding into the brain, and a bonus for us to receive all this extra free medical monitoring. Today is our first “non-infusion” appointment for his testing. I have no idea what type of testing will be administered, but I intend to ask that I receive a copy of the results. There is not much sense in going every 6 weeks if we’re not kept informed of his progress or lack of it.

I will be taking a list, garnered from information you provided, on other trials. Perhaps Sid will be eligible for one of them. While in the trial, he harbored hope that he could be helped. He felt good about himself and his future. Once he was dropped, I do believe the loss of that hope fueled the current resurfacing of his depression and anger (over the driving issue, of course).

Be assured that I will update you on however this visit turns out, and maybe I will have information on more new trials for you.

In the meantime, since Thanksgiving is rushing towards us, I am posting the next installment of my Holiday Tip Series. See below for #2 – Planning Ahead. This series relates to ALL of the holidays in this season, not just Thanksgiving.

Holiday Caregiver Tip #2 is to PLAN AHEAD. Decide in advance how much and what type of company your spouse can handle. Remember – if your spouse has a miserable holiday, is agitated, upset, and out of control, YOU will also have a miserable holiday.

KEEP TO YOUR AD SPOUSE’S ROUTINE AS MUCH AS POSSIBLE - If having the kids and grandkids stay overnight is too much of a break in routine – too many people running around; too much noise; too confusing for your spouse -TELL THEM. They may not understand, but you can’t worry about it. We have friends who have so many children and grandchildren, I can’t keep track of all of them, and some of them are coming to visit for Thanksgiving. My friend told them that they had to stay in a hotel – it was just impossible for Daddy to handle all the commotion in the house. If your kids can’t afford a hotel, and you are able to help with the funds, it’s well worth it for your sanity.

If you are having company just for the day, you have to decide on the amount of people your spouse (and you) can handle, and for how much time.

In the case of the December holidays, you have to be creative. If you have a big family, you may want to divide Christmas up into two or three different days. You may decide it would be better to have a very small group for the holiday, and take your spouse to visit someone else’s house for an hour or two on another day.

Since there are 8 days in Chanukah and 7 days in Kwanzaa, those holidays lend themselves quite well to this approach.

In my research, I found a suggestion that I definitely disagreed with, but it may work for you. It was suggested that you have an Open House, with various people coming and going at different times during the day. It seemed to me that would prolong the day beyond what either you or your spouse could handle, and it would severely interrupt his/her routine. But that is for you to decide.

Whatever you decide, you know what is best for both of you. Stick to your guns, and don’t let family complaining wear you down into hosting an event that will stress both you and your spouse to the breaking point.

©Copyright 2008 Joan Gershman         

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