A few years back, I wrote an article about Hudson Deacon Tom Kroll and how he did so many extra dutiful tasks, his living out the Gospels tirelessly, when his wife was ill, in addition to his regular job. I was inspired at the time to pen this, about my own lovely, disabled wife — we were separated briefly but now back together with our 40th anniversary this month, as wholehearted caregiving has many strains — and how an atypical view of standard roles, out of necessity, made things work, as far as our approach to work and home that’s full joint caregiving, going both ways, with one of us now having a leg missing.
But this needn’t keep one or the other of us from being at a kitchen window admiring the other’s strained handiwork, such as it was — or now withstanding even the ability to stand.
It isn’t often that a wife in either her walker or scooter, as time progressed over the years, would shovel snow, while her husband reluctantly convalesced inside and did what he could at the moment, like make the night’s dinner with the help of the microwave. She did her levelheaded best to understand.
All this leapt up a notch when wife Jeannie recently underwent multiple surgeries and in spring had her left leg amputated. I then decided that as a tribute to her and the compromises she made, I would actually submit this article, as now it is even more appropo, as she learns to walk again, with the good knee still paining her, so she can carry out her ministries anew.
— On the times I could make it outside, and pushed the snow along gingerly, then rested for a moment, and then did it again, I sometimes could see Jeannie at that same window herself, taking in the activity and getting a tad bit emotional that I was finally doing something specifically “manly.” —
Many of the care-giving scenarios I encountered in writing about Kroll were things I well understood. But there are other facets that I don’t feel I ever will have to wrestle with, and for those graces I am now, and will always be, fortunate.
So I will state this now, as a teaching tool to men out there, with Father’s Day coming up. There can be a need to take traditional roles, especially for men, and roll them back, or carry them out with the trash completely, the bag he is always manditorarily supposed to take out.
Communication about these roles is the key. And be more tolerant. I know she tries with me, when I don’t get a spot out.
Do what needs doing, regardless of self, not what society tells you that you should be doing. Maybe just as simple as to keep on the house lights for her on another day. Isn’t that what the Gospels would demand?
The past written story underscored something concerning multiple medical challenges — every care-giving situation is different and requires a unique understanding by those involved, peripherally or directly.
In this case between myself and my wife, what has been atypical is that the caregiving has gone both directions, and has hit a majority of the household fronts, required some creativity to make it work. That meant, in part, that Jeannie was freed up despite more than one tough disabling condition to pour her all into the work for the church that she loves, and I in turn can write as a freelancer for various publications, some of them Catholic like her faith choice, with whatever off-usual-work-schedule time I can scrounge up that is pain-free. We help each other out as best we can.
I have Tourette Syndrome and ADHD and a bit of OCD. Jeannie also has these symptomologies, and in both our cases the mix of which is the strongest varies, by person. Jeannie, unfortunately, has a number of other health problems affecting all parts of her body, almost equally, electric shock, asthma, chronic bronchitis, edema, pheripheral neuropathy, etc. As our abilities to cope grow lessened by age, some of the needs for care-giving increased.
People at early support group meetings said that it must be cool to have a partner with the same medical needs, who understands. While that was a blessing, there also can be symptom-based drawbacks, as some difficulties may hit close to home. This affected virtually all aspects of our lives, including the spiritual.
I have made this comparison, to show the continual time bind such medical circumstances create. What if someone is to have say, ten less hours a week available for things that need doing in life, but still have to get just as much done.
So my church attendance was always spotty, as it was just one more thing to try to fit into an already packed schedule. Jeannie, bless her, reluctantly understood.
I’ve always been grateful that Jeannie was accommodating to my needs, and it may be a bit ironic that a time we always made extra sure to attend was the Easter vigil, usually the longest service of the year, and because I knew it meant so much to Jeannie, it also meant even more to me. But why does it have to be so tedious, although church music is starting to wave a feather at hard rock and metal for upping the tempo.
Something that made such things work more smoothly was that so-called traditional roles were tweaked, based on which of us had a strength, just to get things done that could not wait. Bring whatever you can to the plate to be helpful. For me in particular, my energy level was often quite low and it was well known that between Sunday night and Wednesday morning each week, a newspaper had to be put out, then collapse into bed from near exhaustion. On the other end of the week too, tasks were more doable, but at times only to a degree, if there was something like a significant snowfall, but not too deep. Jeannie had often been gracious enough to shelve her own disability, characterized in part by a lack of mobility, and take that mantle of a task onto herself, and possibly even risking a fall if leaning from her walker too far. I never told her enough how much I appreciated the extra effort she gave. I’d happen to make my way to the kitchen window and wish I could be out there with her, but felt like I first just needed an hour, or maybe two, to gather myself and summon the pain free energy. I would glance at the clock frequently.
On the times I could make it out, and pushed the snow along gingerly, then rested for a moment, and then did it again, I sometimes could see Jeannie at that same window herself, taking in the activity and getting a little emotional that I was finally doing something specifically “manly.”
I in turn would take something less taxing, such as the cooking or the laundry, and call it my regular chore. I would merely rinse dishes, then Jeannie later sat on her scooter and took over with a more thorough washing and drying. For me, simply standing in a same spot for a time while doing such things was more doable, though barely, than shoveling snow around.
In addition to saying Come Lord Jesus at the table, it would sometimes be done from a reclining chair, as much of the reason I would be the one making dinner in the first place was the pain it took Jeannie, to walk across the edge of the living room and part of a hall to get to the dining area, not just my own aches. I was at times criticized for taking on this less traditional role for a man, and serving his wife a plate, but how often was the shoe indeed on the other foot for her — in the form of a snow boot. In both cases a labor of love. The reward of a big hug chest-level, and snuggle on the cheek, made it all, speaking for myself, worthwhile.
When Jeannie and I finally got home from our day jobs — as the medical slowed our work progress and pace, but we picked up energy as the day progressed — it would be about the same time. We both flowed well with this somewhat unusual set of schedules, but this is the takeaway for purposes of care-giving: Sometimes you really have to be creative to use all this in a way that allows things to get done, and a few concessions are the last layer that enables that to happen.
Sometimes small things in care-giving add up and the sum-total becomes even more overtaxing, especially when the needs are in many different categories. In latter years, Jeannie has been a volunteer catechist and since we were down to using one car, I would pick her up after classes. I appreciated the fact that she would let me keep the car prior to that time, but if the timing was off when her stint ended and she’d be waiting alone briefly, there at times was tension, usually from my part.
A large part of the dynamic was tweaked because Jeannie had to be in her scooter just inside the door, by herself. And then that scooter needed to be loaded up into the trunk, with time often in short supply, aided because I might have been ill myself. In which case I let her toss it in, to strengthen her upper body with the exercise, while I waited in the wings. Again, a normally easy to manage situation was made worse because of multiple care-giving needs, again going both ways.
Now on one leg, Jeanie is facing that scooter situation even moreso.
But anyway, Happy Anniversary Jeannie!