Being a caregiver is never easy, even with the best of patients. There is always work to be done for that person. Meals to be prepared (in our case, takeout to pickup), extra cleaning to do, medication organization, companionship, & so much more. Personal time for yourself as a caregiver is often fleeting. Ugh, I never thought I would feel the way I currently feel on a continual basis. I’ve been through some hardships lately, not only with Jack either. Some things that have changed me & not for the better I don’t think. I’ve always tried to live my life on the lighter side, finding funny moments in almost every situation, even funerals at times (I know, I’m terrible). I am so not the person you want to be sitting beside in church or anywhere a straight face is required & expected, just ask my Mama & sister, they’ve been privy to my hysterics more than once at a funeral or during a church service. Once, Coleman was in a Christmas play where he played a very country bumpkin part. He got so tickled during the play while saying his lines & started laughing hysterically & so did I. I couldn’t even get a straight face long enough to give him the evil eye to straighten up! The whole church was rolling by the time Coleman & I got to laughing-they were laughing at us & I wasn’t even in the play! When you have someone you take care of daily, particularly your child, life can get rough. You all know the demons we deal with caring for Jack. The trouble he has been known to get into online, his medical issues, violent outbursts, & his fierce lack of compliance with going to the doctor, & some of these issues have been going on for nearly 20 years. Couple that with the other issues I’ve had outside of Jack & that equals a recipe for the dreaded “d” word-depression. This has literally taken everything good & fun out of me. I don’t like feeling this way. I’ve felt it before, but never for this long. When Jack was younger & dealing with so many seizures & other health problems, I could get over things quicker because I had two other small kids to tend to. Now, Coleman is gone, Ava is older & does for herself, so the only two things I have to worry about tending to is Jack & our business, oh, & where Mama & I are going to eat. Things settle in my mind & stay there now, often replaying in my head way too many times a day. There are no tiny little feet puttering around to keep my mind busy & active. There is Teddy the dog, but as fun as he can be, he’s also annoying because he is still a puppy & puppy’s are into everything which only makes me irritable when I’m trying to do other things around the house. I think way too much. I hurt way too much. Things I would normally laugh & smile over are no longer thoughts I have. I don’t even order from QVC or HSN any more! Some people lose weight when depressed or overly stressed, why can’t that be me?
As Jack’s medical needs have increased, I spend more time with him than ever. I also spend a lot of time trying to find remedies for his ailments since he refuses to go see a doctor. I reach out to friends on Facebook in the Dravet forum often to get advice. If it’s not his medical needs taking priority, it’s his behavioral needs. I am spent, mentally tired, drained, broken even. I don’t like physically talking about my feelings, I don’t even like writing about them, but for some reason this was laid on my heart to do so. Maybe to explain why I’m different now. I understand the life of a real writer, when something pops into your mind, you have to get it out there. I’m no real writer, but I’m the pencil behind a absolute tiring, no holds barred reality story that I think people need to hear about. We all go through moments of sadness, grief, depression in our lives. Perhaps talking about it can make someone else feel more normal. Really, the stress of Jack’s situation is getting to me. Makes me ill as a hornet because every single day, he has a new demand. Examples of this past weeks demands:
Monday: Wants me to order a piece for his guitar. Also demands to go bowling but they are closed. Questions me to death about the bowling alley as if he worked for the FBI!
Tuesday: Wants me to buy a $30 Amazon card. Calls Lee at 3:30 & tells Lee he is showering to come home & help him. Interrupts Lee’s farming activities.
Wednesday: Demands for me to go to the post office at 12:30 to retrieve his package but they are closed for lunch. So he calls the post office relentlessly until they answer while they are on their lunch break, talks with the post master & convinces her to let me have his package even while they are closed. That’s after I’ve already made it to Rockingham by the way to get supplies for the Berry Patch for the week.
Thursday: Refuses to take medications because he threw them up the day before. Have to find a creative way for him to take them now because he thinks the meds are making him puke (when it’s actually acid reflux). I also get his nurse case manager involved to talk to him about the importance of taking his meds.
Friday: Demands to go eat at Taco Loco for supper. All the while he has a ton of food in the fridge from various restaurants that he has yet to touch all week. Sits down to order like he’s Hugh Hefner with all the money in the world & eats nothing, plus places several to go orders.
Saturday: Calls a young lady that he went to church with to see if she’ll come visit with him that he’s not seen in 10 years. Then calls me while I’m working demanding to go bowling, again. When I told him I was unable to take him today, he told me he was upset with me & hung up on me. Now I’m worried about repercussions of not taking him. Told him I would on Sunday. He’s also demanding his allowance two days early & he does nothing to earn one, oh & asking for a raise in his allowance.
Sunday: I’ve made a promise to go bowling. It’s Saturday as I type this so there is no telling what the day will bring. He will be interested in throwing a few balls down the lane but will gravitate to all the games & want more money.
This is one of the larger reasons of my stresses. The demands are relentless, ongoing, & outrageous. I want to stand in the middle of the street & scream until I can’t speak any more. He has zero regard for our time, our finances, our patience. It is so frustrating to deal with this day in & day out, day after day. Not to mention his sleeping issues, potential for violence, seizures, & general poor health. I’m tired. Don’t alert mental health officials, they won’t do nothing any way, been there with Jack but make me fill out a bunch of papers, or tell my Mama, she knows. I’m not dangerous, only venting. Once the Berry Patch gets up & running & busy, things will get better. Summertime is my favorite season. Hopefully, it will be just what the doctor ordered. In the meanwhile, if you hear or see me screaming in the street, it’s okay, I’m only having a moment.