Wednesday, February 27, 2013

Caregiver Retreat

It's been a while since I've written....things have just been all over the place. Some   days we are "in a groove" and it just feels like groundhogs day over and over and what is there to write about on those days?  Then other days it's me crying for silly things or me mad over dumb things....Dean yelling at dumb things or Dean apologizing for our life which breaks my heart!

We had been on a house hunt and found out that we need to put it on hold for a little longer. We are both trying to have faith that God will take care of us and lead us to the home that is meant for us. Dean has trouble with keeping this faith and trusting God. He thinks he's done something wrong to deserve this and that God is punishing him. I have to help keep his spirits up daily.

The other big thing in my life right now is an upcoming Caregiver Retreat in South Carolina put on by Independence Fund (Gary Sinise's organization). I am so beyond excited to go because it sounds like they really made this retreat about pampering us wives!!! At the same time I'm terrified to have something nice! I can't explain that one???  I guess I suffer from a similar "I don't deserve anything good" syndrome that Dean does? Those emotions coupled with such anxiety just preparing for this! I really wish my family was on board. I wish they took a more active part in having compassion for Dean's injuries. Instead I have a paid respite provider coming out to put in 20 hours of work in 3 days time not including nighttime, my step-daughter being paid to come out to pick up the other 2 1/2 days, and my MOMS group saving babysitter Nicole who will be taking care of Little Dean by taking him to school and feeding him dinner and letting him play at her house so he doesn't exhaust daddy while I'm gone.

All this planning makes a caregiver realize how much she needs a break!!! For a caregiver to go through THIS MUCH just to have a break, it HAS TO be necessary!

I am worried about nighttime. I am the kind of person that has to be prepared for the worst. Let's say daddy puts little Dean to bed and then he snacks on some popcorn which he does every night...but then he chokes. What if he chokes so badly that he needs an ambulance but little Dean is sleeping....then I have to think that the next morning Caroline will be here and will knock at the door and when nobody answers she'll call 911. It's a horrible thought, I admit, but I have to make sure that little Dean is safe! This horrible scenario can really only happen on Thursday night, Sunday night, or Monday there are a couple nights where someone will be here. I have to just realize that I have a cell phone and it's not like I'm going to be out of contact for 5 days. I'm a little upset that upon hearing that I was going on a retreat for 5 days my dad's response was that it's "not a good idea". Rather than asking how he could help, it's just not a good idea??? I think that really feeds my "I don't deserve this" thinking and feeds my doom thinking. Like it something horrible happened it would forever be my fault because I shouldn't have gone. Such a war going on inside me :(

On the flip side, I always tend to worry this much before I do anything happy for myself and then after I'm done it was NOT NEARLY as bad as I thought it would be. So I always get confirmation that it was a good thing for me to have the happy thing.

(I'm listening to a zebra rap about an hexagon....hahaha.)

Well, I'm cried out and need to get things done. I leave in TWO DAYS!!!!


  1. Thank you for sharing yourself in these blogs. I recently connected with the Independence Fund and voila! my son James and I are going on the South Carolina retreat with them in 4 days. My son has an anoxic brain injury, is in a wheelchair but can walk assisted and is on a feeding tube. Balance, coordination, articulation, and swallowing are challenges but he is cognitively sound. Main obstacle for him that I've been desperately trying to find a solution for is his unrelenting painfully cold hands and feet.

    I can relate to so much of what you write. James, too, spends most of his time in bed with me and caregivers streaming through. When we go out, too much stimulation as well as idleness drives him back to bed. If you are going to the retreat next week, I would love to meet you!

  2. Aww...your welcome! I'm glad you found something you can relate to. That was so important to me and to all the caregivers I know, to find someone who seems to understand what life is like now.

    I'm so happy that you've connected with Independence Fund and that you are going on the retreat coming up! Unfortunately, I'm not going to be there. My husband just couldn't handle the concert aspect of it so soon after flying across the country :( I do know a LOT of caregivers who are going! They are all looking forward to it!