People with disabilities often rely on their spouses for care, either formally or informally for some or all of their care. In our case, we pay a caregiver to care for my husband during the day on weekdays so that I can work full time, but I am “on duty” for all the rest of the time, meaning all nights and weekends.
But what happens when there is a major catastrophe? For us, two such things happened in the last 10 years. First, about 7 years ago I got a horrendous case of pneumonia. It was so bad that I could not get out of bed; I was so ill that I could not care for myself, much less anyone else, including my husband for 3 weeks. In the second case, I fell down walking the dog and badly broke my foot. I had to keep all pressure off of it for 8 weeks – crutches and no weight bearing at all. Considering that I have to carry everything in this house from Point A to Point B for my husband, it was quite problematic to say the very least. So, what did we do?
Asked for help
Particularly when I had pneumonia for the better part of 3 weeks, I had to hoist the white flag and ask for help. But I had to ask for specific help. I asked my husband’s dad and mom to come down for a few days each (sequentially) to do all of his care from A to Z. Then I had my mom make meals so that I could completely rest. Together then, everything was taken care of so that I was 100% off the hook for everything for at least a few days. Once I had a little bit of strength back, I eased back into doing care, but my parents still pitched in substantially, doing my laundry, cleaning up, cooking, taking out the trash, and a myriad of other helpful tasks for me until I got back on my feet completely.
When I broke my foot, I rented a little roll around thing that you kneel on, called a “knee walker”. It was a huge lifesaver because it allowed me to use my hands, and it had a basket tethered to the front of it so it was doubly useful. I could keep all pressure off my broken foot, not have the incredibly painful constant use of crutches and still get around the house. I zipped all over the place with that little thing. When getting my husband into his wheelchair, I had to learn how to balance on one foot and get him dressed and into the chair. That was not easy and took all the creativity I had in me!
When I was sick and when I had a broken foot, my husband got in his wheelchair a lot less often than he wanted to. In the former, I simply didn’t have the energy to get him up and in the latter, it was just so very difficult to balance and manage. So he spent many days in bed when he would have rather been in his chair, out and about living life. Instead, he watched TV from our bedroom. It was a sacrifice that he made on my behalf.
Let things go
The house became a total disaster zone. My house is normally a bit of a mess in its usual state, but when I was sick and particularly when it was longer term with my broken foot, all hell broke loose. Heaps of laundry appeared and never went away. Dishes piled up and we resorted to paper plates (a pet peeve of mine, I think paper plates are incredibly wasteful). Dust bunnies became dust horses. The floor mopped? Pfffffttt. And I was ok with it. I had to just stop caring. I had to triage what I cared about and the house took last place in what I cared about.
What about hiring help?
Sounds good, right? And like the “well duh” option if you’re reading this and you’re not disabled. But this option is often not feasible because finances often do not allow it. Insurance, in the vast majority of cases (including ours), does not cover aides to help disabled individuals, and so we, like most everyone else, pay out of pocket for the aides that work for us. At the time, we simply could not afford to pay more for more time from our aides to help support what I could no longer do.
In a perfect world, us caregivers would never get sick, never break a bone, and would always be superwomen/supermen for our disabled spouses. But of course that’s not reality and it’s not possible to plan for the emergencies that come up. But perhaps some of these tips will help should an emergency come up in your life.
Photo Credit: Flickr, amslerpix