• Anonymous
      December 10, 2007 at 10:21 am

      [SIZE=”2″][/SIZE]:) What suggestions do you all have to aide the caregivers.
      We are jsut starting to accept my “NEW ME” and the limitations it is imposing.
      My husband is wonderful and has became a 24/7 caregiver, but I can see at times it gets to him. I formerly was highly independent.
      Three times a week he will be taking me to PT/OT and wait around as it is too far to drive back and forth. Then they MD appointments. Then house, food, etc.
      How have some of you managed the household duties, etc.
      ANy and all help will be appreciated.

    • Anonymous
      December 10, 2007 at 12:08 pm

      We included the kids in the care of everything. My 14 yr old daughter took over laundry and my son the lawn. Fortunately for us, we have a cleaning service that comes every 2 weeks so we were able to afford that. The most important lesson we learned is ask for help. Don’t try to do it all alone. For instance my sister would come for the weekend and do some grocery shopping and make up meals that could be just put in the oven and warmed up. She helped my daughter sort laundry and taught the kids how to make some simple meals. Its amazing what the kids can do when there is a need. After I was home from the hospital I sat at the counter and told them how to cook something. I took over some of the meal planning to relieve my husband. I would direct my kids to do little jobs that would again releive some of the things my husband had been doing. Even getting someone to drive you to therapy and Dr. appts would free him up to do other things to keep the household running. Hope this helps. This is what we did.

    • Anonymous
      December 10, 2007 at 2:05 pm

      I just care for my daughter, who thankfully is completely mobile & self sufficient at 6 yrs old.

      There have been times when the dr’s appointments & tests & house work & paying bills, etc have really gotten to me. I decided that when I start to feel overwhelmed I have to take a step back, refocus & then I can proceed. I think having your husband take some time to himself to do what he likes would be good for him. Tell him to start up poker night with his friends or to continue whatever his hobby was before this disease.

      Put a support system in place for him. Ask friends or family to engage him in activities that are centered around him. Have those same people let him know that they are there for him if he needs a break or some help.

      Let him know that the house doesn’t have to be perfect & the clothes don’t need to be folded & put away immediately. Carry out dinners with paper plates & plastic cups have come in handy a few times for our family.

      Is it possible to get an aid for yourself? I know you can get someone to take you to appointments or to sit with you while he goes out, if need be. Even if you can’t afford it to be an all the time thing maybe doing it every few months to give him some alone time would be nice.

      And finally just thank him & let him know that you appreciate him.

      Good luck,

    • Anonymous
      December 10, 2007 at 2:53 pm

      [FONT=Palatino Linotype][SIZE=4][COLOR=purple]Your husband is going to be facing a challenge, as I know I did. I took care of my wife Debra for 6 1/2 yrs, sometimes my nerves almost gave out. I had more than one time I had to go sit outside on the front steps, trying to get my composure back. Some how or another I always managed to get the things like the housework done, but not on a very timely schedule. I just took everything one day at a time, your husband has my respect for being able to take on this responsibility.[/COLOR][/SIZE][/FONT]

    • Anonymous
      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!

    • Anonymous
      December 10, 2007 at 5:37 pm

      thanks to all for all of the great info. we were just not prepared for this in any way. but God will see us through it and people on this forum sure help

    • Anonymous
      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.

    • Anonymous
      December 11, 2007 at 8:17 am

      My thoughts would be to combine the trips. When you have pt/ot can he go to a park and get some alone time? or while you are doing your therapy can he do the grocery shopping? or bill paying? Afterwards can he get away for a few hours and do whatever he likes to do? Ask other family members to do one or 2 chores around the house for him, not an everyday thing just a once a week or two type of thing. Are you involved in a church? if so, they would be more than happy to help take you to therapy appts or just get you out of the house once or twice a month to allow your hubby to do as he wishes. It sounds like you have a Wonderful Husband!:) Take Care.