I’m not a whiner, really I’m not. But I am soooooo tired all the time. I’m doing all the heavy lifting when it comes to Eric’s care, and I just wish I could lay down the load sometimes. I get the occasional break, when my stepdaughter looks after the boys for a while, but that’s just in terms of doing the blood glucose testing and programming carbs into the pump. No one else has anything to do with the really tough parts - the site changes, the insulin calculations, the pump programming, the middle-of-the-night ketone testing when I suspect a site failure. It’s wearing. It’s tiring. And I know I’m doing everything a good mother should, but it’s still burdensome. What keeps me going is knowing that everything I’m doing will mean a longer, healthier life for my treasured little boy. But even that is hard, sometimes, to use as motivation… it’s an intangible, not something I can hold in my hand. SIGH
I agree it does suck. I don’t know what to tell but to pray for strength I know I do.
It does get the best out of us sometimes…hugs.
Indeed try to find your motivation…intangible and not. Or probably reward yourself once in awhile. Talking to someone like a family or friend helps too. Pray for strength…you can do it.
All caregivers, regardless of type of care receiver, need a periodic respite. Is there some way you could train a backup person so that you could take a whole day off, maybe once a month or even every other month? If you don’t get some “down time” it may begin to affect your health and then your frustration will be bad for both you and Eric. You could train the person and supervise him/her until you are comfortable leaving Eric with the person. And you could be a cell phone call away until you can relax and have some “me” time on your day off. This site is aimed primarily but not exclusively to caregivers of adults but it has some good tips and information that may be useful to you: http://www.caregiver.org. There are also other caregiver orgs, just google the term.
It is never ending both for you and your son.
Soon the burden will all be on Eric, so it will never get easier as he will have those same feelings.
I don’t have any answers as all that has changed for me is the way I receive my insulin and that IS NOT A CURE.
My mother said she use to cry at night when I was not around and that was in the days of no meters, pumps, or A1C tests.
Just remember you are doing a great job and that we understand the never ending of it all.
I can only imagine how exhausting it is for you. A hard enough job being a mom to begin with. I’m worn out some days just taking care of myself.
It’s 24/7 worrying & doing with a little diabetic one. Whatever you can do to carve out time for yourself even if it’s just a couple of hours, do it regularly & do it without guilt. You have to have a break for your well-being & for Eric.
I have two nephews with cystic fibrosis. They’re less than two years apart in age. My sister-in-law nearly had a meltdown when they were young from the constant care involved. They took tons of meds & had to have poundings 3-4 times a day (this was before the machines that now do this), which was time consuming & physically demanding. She rarely slept listening for signs they couldn’t breathe. She found a couple of nursing students, whom she trained. Wasn’t easy for her to trust anyone with their care at first.
I agree about the back up. What will happen if you get ill? You don’t mention a spouse so I will assume you are a single parent. If “times” were any better, you might be able to get involved with a respite organization although most of them don’t do medical care, more like well trained sitters/entertainers.
Regardless, yeah, I can imagine you are exhausted, mentally and physically. Cargiver.org is a wonderful site with lots of information. You cannot take care of Eric if you don’t take care of yourself, first.
I remember being where you are…and there are days when it still gets me…I think the best thing I have ever done for my kids is let them know that it’s tiring, overwhelming at times…but we keep plugging through it and looking ahead. I caught myself complaining quite a bit when my first one was dxd at a very young age and realised that she was paying attention to how I was handling it. It made me sit up and say, uh oh…this is a lifetime experience for her…I have to stay real, but stay positive. I agree with the others, you have to find someone to help even if it’s just for one afternoon a month. And find ways to reward yourself. Most of all teach him that it’s tough and sometimes a HUGE PITA, but you keep moving forward.
I empathize with the rough spot you’re going through right now. I don’t think it’s too soon to have caregiver burnout. I also have it myself every so often, after having cared for Elisabeth’s diabetes over 3 years now. I also do the majority of care giving and we don’t have a lot of babysitting help nor grandparents near by, so it’s tough. When I feel frazzled, I try to sleep early when the kids go to bed, getting up later to do a BG check if I need to. I also try to read or veg out in front of a movie to just relax or exercise. I also find a good talk with a girlfriend really helps me and sometimes a good cry. Feel free to PM me if you want to talk further, or just to vent. You’re doing a great job and you’re a great mother…but we still get tired and that’s ok. I agree with Renata re: not complaining in front of the child. I found myself talking about the stress of diabetes in front of my daughter to my Dad because I felt like she’s not paying attention, but then I realized I can’t do that any more as she’s growing older and I don’t want her to feel she’s a burden. So many things to try to balance, right? I hope you can have some times of refreshment and get some good rest. Take care! let us know how you’re doing.
whine all you want… let it out!!! I am a single parent of a type 1 dx @ age 2 now he is almost 5. I need the ocasional emotional melt down to let it out and carry on. I also find great help in my sons D care team, yeah the’re not the one’s doing the grunt work but I keep my now scalled back to once a year appt with his d educater, just to unload, find other single parents of D kids around the area and of couse anything that may have come out on the market that may make my son and my life just a touch more simple! You are not alone there are a lot of us out there!!! Hang in though the bad days cause there will be good. I guess what I’m saying it’s never healthy to keep those feelings bottled up, i just let mine out after the kiddo is asleep!
Elizabeth, perhaps you’ve already thought of this but if not…
Assuming you have health insurance covering Eric’s needs, might one of the benefits be respite care?
I hadn’t thought of respite care, actually. Good suggestions!
@Tom, he is in the middle of his own health crisis right now - an acute back injury caused by one of our horses that has affected every aspect of his life. Even if he had the energy to help, I’m not sure I’d trust him to do it right - the few occasions he has taken on some of the tasks because I wasn’t able to, he forgot important steps… like not doing the fixed prime when changing the pump site, for instance (if I hadn’t caught the mistake within the following hour, we’d have had a serious high BG and ketones to deal with). If it were just that he didn’t want to do it, he’d have my foot up his ■■■, but at this point he’s simply not able to do it. The pain meds he takes fog his brain somewhat. He did most of the heavy lifting when we were using syringes, going over to the daycare every time Eric needed insulin, so I know he’s willing… just right now he’s not able. But, he’s working with a good specialist and in time, maybe that will change. BUt “in time” doesn’t help me right now.