December 10, 2007 at 11:24 pm

If finances are not an issue, use a homecare agency to take you out once or twice a month. My homecare agency charges me $15.00 an hour with a minimum of 3 hours, plus .55 cents mileage. If you can do that it will ease a little of the traveling off your husband and you’ll probably find a new friend.


December 10, 2007 at 4:20 pm

We were almost at the point of empty nest, so we couldn’t get too much help for my husband from our children. When I was at my worst, he did have to take 3 months off of work to care for me, then my mother moved in for 9 months. She helped to cook the dinners & he did the dishes. But my doctor appt. infusions, running errands, grocery shopping, laundry, etc. were overwhelming for him at times I know.

First off, after 6 months we got a cleaning woman who came every two weeks, & at $10 an hour it was worth every penny. We did ask my middle child to take me to my chemo infusions, as he was on his way back from lunch anyways. Then my husband would come after work to pick me up. Our youngest moved back home after college to take care of me during the day, as he works afternoons. My daughter would come home some weekends to allow my husband to go to the hunting shack or snowmobiling with my son, just to give him a break.

But I began at some point to really question how necessary each doctor appt was, especially my rehab appt. If they are just exercising you, try to do the exercises at home. Overall, I felt both my inpatient rehab, as well as my outpatient rehab was mostly a waste. After awhile I figured out that my brain would tell me what I could & could not do. Also, simple little things around the house, such as folding laundry, emptying the dishwasher, trying to vacuum, etc. were all PT. But I could not do any of these things for the first 2 1/2 years after I got CIDP. Slowly I have once again been able to take over the bill paying, the dishes, most of the cooking, etc. But we definitely kept the cleaning woman!


October 27, 2007 at 9:57 am

From my heart I understand. I have been caregiver to my mom ever since my father died in 2000. I was severely damaged by CIDP (I have my own caregiver for some things) and each year it gets worse with my mother. If you need someone to talk to PLEASE email me, maybe two heads can help each other.