Parenting with a partially disabled spouse

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Martin Blank
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Parenting with a partially disabled spouse

Post by Martin Blank » Thu Jan 09, 2020 6:54 pm

I love my wife dearly. We've been together for more than nine years, engaged for eight, married for coming up on seven. We have two beautiful children separated by 16 months, who are generally pretty good kids. They share, they look after each other, they ask where each other is. We do our best to provide for them. Both of us work (me from home with a ~25% travel job, her second shift doing what she did in the Marines), they go to an awesome daycare that happens to be literally across the street from the house (I can sometimes watch them play outside from my office window), and the school they'll probably go to is among the best rated in the state. I love my family dearly and do everything I can for them.

Cat is in the class of people with 20+ migraine days per month. There are times when she can't remember the last day she had without a migraine because it's been that many months since the last migraine-free day. She also has a back injury from the military that, while it gets her complete VA health coverage, isn't easily (or perhaps at all) repairable, and it aggravates her migraines. This means that she has two options to deal with the pain from her head, back, or both: constant medication or sleep. She chooses the latter, but really, the result would be about the same. She's seeing a migraine specialist and they're running her through different medications for a few months at a time to see what of the new CGRP medications might work, but it's a long process.

This leaves me feeling in a very hard position to discuss with others. I've known single parents who struggle to get by, raising one to three kids on their own because the kids' father bailed at some point and took little or no responsibility. I've invited them over, let them crash on my couch or even in my bed while I herded the kids to the park or watched movies with them or something just to give them a break. I've also known a couple of people who had completely disabled spouses, who took care of the kids and the spouse, sometimes to the point of ignoring their own health.

And I'm in between. The single parents would have loved to have someone around even part time to help with the kids and the house. Same thing with those with fully disabled spouses. I have that. It's unpredictable, but I have it. Sometimes she can help for days on end, and then sometimes a migraine hits within a 20-minute span and she's down for a couple of days.

Just before and after our youngest was born, I had to go into a mode where I was sleeping 4-6 hours a day for about two months. I would wake up around 6:30, get the eldest ready for daycare, get him over, come back, get breakfast for Cat, tidy up the house, work out of my home office while taking breaks to care for Cat, get the kid from daycare, make him dinner, get him down, scald the breast milk once the younger was born (Cat has excess lipase in her milk that causes the milk to take on a soapy taste; scalding it stops that); bag the excess for freezing, clean up the kitchen, and go to bed somewhere between midnight and 2:00.

Sounds like hell, but it worked for me. I look back on it fondly because I knew literally from one minute to the next what to expect. I knew when I could shut down and sit on the couch for fifteen minutes to stare at the wall.

Now, with the kids toddlers, everything is unpredictable, and I don't know when I can count on Cat to be there, and even on her good days, she usually doesn't get home before 9:30 at night, after the kids are asleep. I do about 80% of getting them ready in the morning (based on meals prepared and kids changed from pajamas to day clothes) and about that ratio of taking care of them at night even factoring in travel. I get more sleep overall, but when I'm awake, I am always on because I feel like I have to be in case Cat has to duck out. I can't make actual plans for us or the kids, and even work travel makes me feel guilty. It all causes resentment internally on my part, but I don't show it to her because it makes her feel bad and she can't really do anything about it.

We've had three babysitters because of the erratic schedule, only one of whom was reliable but she transferred to another college two hours away. Others just haven't worked out, and we think one who came with excellent references was actually yelling at the kids over minor things (they didn't get "Shut up and go to sleep" from us). We have few friends that are willing to watch the kids on a regular basis, and those that are have their own issues that make it almost impossible to schedule. Family is mostly not local, and the one that is (Cat's mom) was far from being ready to watch the kids. Just as we were agreeing to let her watch them, she got a Labrador puppy and suddenly couldn't babysit them for at least six months (and it's been longer because the dog gets overexcited around the kids because dumb, goofy Labrador puppy doesn't realize what 70 pounds of dog is like to a 25- and 35-pound toddler). Cat and I have had exactly two weekends alone since August 2018, and one of those was forced by family events that necessitated a trip to Wisconsin. Other than that, we get maybe 2-3 hours once a month when daycare has parents' night out and watches the kids for a few hours--for $65 for the two of them.

(BTW, this also affects work, as I don't have time like my industry compatriots have to do a lot of research. I have to do that during actual work time, but we're almost always slammed with work and there's little time to do that.)

And yet... I don't feel like I can bring this up to most people. When I do, I get stupid aphorisms from a lot of people like, "Nobody said having kids was easy!" And for the single parents and disabled partners, I feel like I'm making a bigger deal out of this than it is. But I'm exhausted. I have a therapist, but 1) that's expensive (she's out of network) and 2) I only get an hour a week with her because see point 1. And I have other things to untangle. I'm exhausted and want to shut off for a couple of days and let someone else deal with it, but I feel like I can't.

Ever.
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raptor9k
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Re: Parenting with a partially disabled spouse

Post by raptor9k » Thu Jan 09, 2020 8:47 pm

As the kids get a little older they'll be quite a bit more self sufficient, but it only makes certain things easier. My son is 6 and fully dresses/bathes/grooms/feeds himself minus me putting food on a plate for him. He can pretty well entertain himself for those times we have to handle other business but he still wants more attention than we can usually give him.

Your frustrations are absolutely valid. It's never fun when one half of a couple shoulders a majority of any specific burden, especially if there isn't a reliable way to balance it out. I work from home and my wife works a school schedule (7a-4p) but devotes most of her time at home to our son if he's awake. Thankfully she's able to drop off and pick up our son at school, but she ends up doing a fair amount of paperwork at home in the evenings. The domestic side of things usually falls on me because I have a little free time during the day and I'm always here. It causes some friction in our marriage at times because there's an imbalance that isn't easy to address. I willingly took on the domestic work to help my wife out, but most of the extra work she does in the evenings is due to her desire to work the same hours our son goes to school. It saves us money on after school daycare but there's always a cost. We also suck at self care. I rarely hang out with friends and most of our 'date nights' devolve into working on stuff we've put off around the house. We have our issues but we regularly talk about them to make sure everyone's on the same page. There isn't always a solution but talking about it definitely makes you feel a little better and gets the other person working on the problem from their side.

Keep looking for more friends with kids the same age. When my son was in daycare we befriended most of his classmates' parents. Several of them still arrange playdates despite going to different elementary schools now that they're older. Playdates are an excellent way to catch a break for a few hours (and the extra kid or 2 that's over when you reciprocate usually makes it easier for us to catch up on things or rest oddly enough). If you're into working out or just walking on a track find a gym with free child care. Let the kids play and get some exercise and a sanity break. Talk to your daycare staff about babysitting on the side. Most of them aren't highly paid and are glad for the extra cash here and there. If at all possible try to arrange one or two 'me' days where Cat's mother comes over without the pup to watch the kids while Cat is home. She can be the safety net in the event of a migraine and you can deuce out and go sit on a park bench staring at some geese or hit the local shooting range and take your frustrations out on the paper target of your choice.

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FirebirdNC
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Re: Parenting with a partially disabled spouse

Post by FirebirdNC » Fri Jan 10, 2020 11:36 pm

That must be so frustrating to you. You seem like a very structured person and having things up in the air so much must be very difficult. I had a situation with my husband where he was drinking heavily for several years (2.5 years sober!) and just the uncertainty of what I was going to come home too or what phone call I was going to get just ate me up inside. At one point I said " I don't like the asshole you make me become". You are absolutely entitled to all of the feelings you are having. I'm sure Cat is feeling a lot of frustration and guilt as well that she isn't able to shoulder as much as you are. Your kids are so lucky to have you being a constant for them. You are not a robot but a mere human with needs and feelings why should you feel bad about that?

Raptor has some really great suggestions for ways to get a little relief and me time. As I am sure you are discovering you had a baby who is now a toddler and the time really does whip by. Does that help when you are in the moment about to fall apart from the pressure and lack of sleep? Not a damn bit :). I am so sorry you are struggling and I wish I knew some way to help. You are a great dad and it will all be worth it in the end. You know you can vent to us anytime.
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