How I (debatably) kept my sanity through 18 years as a family caregiver: lessons on managing multiple constant demands on my attention

 

At the time of year when a lot of people are ramping up their activities, I’m called to share the useful stuff from dozens of books, hundreds of articles, at least twenty weekend retreats, and hours of audio programs on the topics of time management, organization, mental health and self-improvement along with my twenty years of experience running a household and care-giving.

  • Self-Tracking

In 2014, after well over a decade of care-giving, I found myself in a place with very inadequate formal supports for people with disabilities, the job we had just moved for my husband to take having evaporated and with no savings.  Needless to say I didn’t know anyone near me for informal supports to really be happening either, other than from me to my daughter.  My daughter still had cerebral palsy and epilepsy with a great amount of support needs.  Sobbing daily, I was a wreck.  I would have climbed into a ditch to stay there if I didn’t know my family would find me and drag me out anyway.  I knew that I needed to pull myself together.  I knew that when life felt a lot better in the past, I had been doing more exercise and creative projects.  I had some other ideas of how to help myself: find some friends in my new home or at least maintain phone contact with those who were distant, engage my mental capacities, get enough sleep, eat well…I also knew that I was unlikely to accomplish a particular healthy activity purely for myself on a consistent daily basis, yet alone a half dozen or more.  So I made a chart with the various activity categories down one side and the days along the top.   I adapted this idea for myself from reading Dr. Lissa Rankin’s ideas about the Whole Health Cairn. My non-negotiable commitment was simply to mark the activities I had engaged in each day.   There was no further requirement or way to gain any gold stars.  I knew it was not going to be helpful to beat myself up over whether I did or did not do something and that I could handle marking a paper.  But the chart worked! It was so motivating to correlate my best days with having more boxes checked, usually for a few days in a row, and my worst days with having few to no boxes!  Healthy activities undeniably led to my feeling closer to the way I wanted to, so I did them more often with much less finding excuses to skip them.  This kind of self care is radically different than the kind that involves paying more money I don’t have on beauty treatments, carb heavy meals and movies, or even trips to lovely places.

  • Index cards!

Yes, you read right.  Those deceptively simple little rectangles of heavy paper make a big difference to me.  I learned this trick from The Organized Mind by Daniel Levitin.  I keep some near me always.  There are some on my bedside table, some in a basket on my kitchen counter and some blank ones in a cupon filing folder in my purse.  When a task or an idea to follow through on later occurs to me, I write it on an index card.  One.single.idea per card.  Ideally, these would be sorted daily, but mine often sit much longer.  By “sort” I mean that some tasks are scheduled for a particular time on a calendar, some lead to scheduling time for research, and some are tossed with a conscious decision they are not actually a priority.  Ideally none would be kept, but I have a stack of about 50 neatly tucked into the cupon folder.  No biggie.  An example:  When I needed a new shelf for my daughter’s closet storage system, I took the measurements immediately, then stashed them on an index card in my file until I had some other items I also wanted at the hardware store.  The cards are sorted in my folder and I am pretty good at ignoring them most of the time.  An interesting thing happens with this system.  I believe there is some magic in writing the things down on paper.  When I sort my index card file, I end up tossing 90% of the cards because I accomplished the tasks without stressing.  I find myself more present to any given moment once my nagging “to do list” is safely stored on (corralled, not straying to all corners of my house and car nor running into many pages of half scratched out lists) paper, which is the result Levitin claims people usually get.  It works!

  • Keeping the calendar the right amount full of the right stuff

On days when I am directly responsible for my daughter twelve waking hours, we usually plan on one outing.  One.  More than this, and we end up at some point hungry, tired, or otherwise uncomfortable with the yelling to get us moving between activities, the forgotten oh so critical item, the stained shirt at the physical therapist’s office…..    It’s totally doable to handle all life’s little stink bombs when the day is not otherwise fully scheduled.  If the dog throws up, I realize I neglected to do laundry so my daughter has to wear that one outfit that ought to have been thrown out six months ago, and then we finally get in the car to see the tire pressure light is on, but I started the getting us approximately acceptable for public consumption process early and only have to be one place before I can go to the tire store and hang out there as long as necessary, no stress.  The tire store around here even has popcorn!  Obviously some pre-planning is necessary to coordinate with others and I’ve found days with absolutely nothing scheduled to be sticky sink holes (also necessary rarely for more rest).  Now I schedule in the stink bombs even before I know which ones will detonate on any given day.  They go off, and I still move along with my day.  On days when everything is fabulous and I have more energy, I can always do something fun spontaneously or knock off a chore that was scheduled in the future.

To accomplish the empty space on the calendar, it’s often necessary to ask for what I really want from others.  In the past, I would make desperate accommodations to my friends’ first suggestion of get together times, so it was easier for them to say ‘yes’ to hanging out with me.  I would accept the first suggestion from any doctor’s scheduler.  Now I’ll actually look at my own calendar and say something like “Thursday at 10am is ideal”.  If my preferred time isn’t available, I’m usually willing to wait another week or two until I can schedule in a way that honestly works well for me.  Very rarely do I resort to planning a day that is overly full.  Then I know it’s coming, and because it is rare, it is tolerable.   Besides unscheduled time, I also schedule time for myself now.  Those activities I mentioned on the chart earlier such as yoga or art class, a date with a friend I really like talking to, as well as my own Dr’s appointments and haircuts do have to fit in there somehow.  They’re just as important as my daughter’s therapies, doctor visits and grooming.  Having a time blocked out, including any preparation and travel time, makes my self care 100 times more likely to actually happen.  There are a lot of things I don’t make time for anymore, and I really don’t miss them.  I do not organize binders with my daughter’s medical records (though it’s all in a heap I could root through if I really needed to).  Laundry is often in baskets on the floor in my house (though everyone always has at least one seasonally appropriate outfit clean).  I have never and will never be the class room mother (though all power to women for whom this is joyful service!) or a scout troop leader. I am ok with that.

I used to expend a lot of energy volunteering for others’ needs outside my household. I wanted to earn friendship or future assistance.  Now there are a very small handful of friends for whom I will very occasionally bring a meal during a difficult time, or drive to the airport or watch their kid, or even call up to continue connection.  Once I realized that there was no way I could do a very teeny tiny fraction of the good deeds that beg to be done in this world, or even just this household, life got a little bit better.  I just need to do the sub set of things which are properly mine to do. I still fall into martyr mode, but can usually pull myself back again these days.

I can’t talk about scheduling without also saying how much I love google calendars!  It is so easy to communicate events to anyone else using a shared calendar or ‘invites’, I can set up separate calendars for different family members and my daughter’s employees but view them all together.  I can have in-depth planning sessions from my laptop with a keyboard yet enter a new appointment at the Dr’s office with my smart phone.  It’s never going to be irretrievably lost or damaged. And it’s free!

A few more words on scheduling and time:  When the kids were very young and I didn’t have the above tools I already began the lesson to slow.down.  No matter how many fires demand my attention, I have exactly one bucket of water in any moment.  I accomplish nothing by splashing it all over in a panic.   There’s always twenty seconds (usually all the time I want, really) to close my eyes, feel a breath move through my lungs as fully as possible and deeply sense the appropriate action to take.  In fact, if I ignore this noticing step, I tend to make the situation much worse. As with playing martyr, I still fall to bad habits of rushing often, but life is good when I can slow.down.

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