Trust me, I wasn’t always a patient caregiver, but I had “on the job” training.
And like most of you, some of my previous life experiences had unknowingly prepared me for my caregiving role.
My mom had Parkinson’s for about 12 years. Parkinson’s is a neurological disorder that effects the nervous system. Some of the symptoms of this disease include a shaking or trembling (usually in the hands or legs, sometimes head), and an inability to walk well (shuffling, difficulty with changes such as flooring changes (going through doors, carpet to tiles, etc). My mother would come to a door and just freeze. For minutes.
Sometimes, I’d feel impatient, think about my kids, conflicts, my marriage, what I needed to pick up for dinner–how much weight I’d gained over the holidays–I was all over the place. But over time, I learned to just be present.
How did I ever learn to be a patient caregiver?
I think the bottom line is that I had to learn to accept that caregiving was what I was supposed to be doing at the time. (I was only able to achieve this zen state on rare occasions).
I decided I never wanted my mother to feel bad for having Parkinson’s. I never wanted to shame her, or embarrass her. It’s such a hard disease. Michael J. Fox said that “Parkinson’s is the disease that keeps on giving.” She’d sweat, get clammy, start to cry because she just couldn’t move. And I’d talk calm, make a joke, pat her hand and tell her to take all the time she needed. I thought of her “pauses” as sort of a body stuttering, and the best thing I could do was to relax so that she wouldn’t feel my tenseness, and to reassure her that I was there for her.
Patience also comes with being a mom. Pregnancy take patience. Labor is going to happen in its own sweet time. Nursing can’t be rushed. You can take that sacred experience and make yourself miserable by not relaxing and enjoying the moment. You have to just be–you, your baby, all warm, a cuddly chair, a lullybye…life doesn’t get any better. And you can’t rush a toddler. They have no concept of time–nothing more important up ahead. What a life lesson there. A roly poly on the sidewalk of the most fascinating thing in the whole wide world. Getting dressed by “me self” as my middle daughter would say was such a source of pride for her that all I could do was to step back and watch her struggle and triumph.
My lessons in patience continued–doctor appointments, ballet lessons, horseback lessons, homework help, waiting in line at a carpool, teaching a kid fractions, teaching your teen to drive a car–I learned to enjoy the journey, to sit, to wait, to let those I love relish in the life events. I’ve sat through hundreds (not kidding) of ballet practices and recitals. I’ve clapped, bought flowers, a ton of hairspray, bobby pins and tights, and then I’ve driven home way past midnight with a car full of sleepy kids. It’s what moms do. We’re there. We witness lives. I nicknamed myself “Princess Drive and Pay.” I drove kids places (like soccar, karate, acting classes), and then I paid.
So by the time my mom needed my full-time care, I had exercised my patience muscles–but patience with an elder is a tad bit different.
What I Learned on a Slow Day:
- I get to decide what I consider to be of value, and investing in those I love is a good use of my time.
- I learned to entertain myself where ever I am–in the car, in a doctor’s office, in the hospital, standing in a bathroom stall with my mother because she can’t get up and down off the toilet without help. I learned to think, to imagine, to let go of “what’s next.”
- I learned that a sense of humor really helps. When you’re dealing with fussy nurses, a grumpy mom, and hungry kids, you better figure out that getting everybody to sing a car song is better than fighting–or complimenting a nurse might actually win you a few brownie points and get you seen before closing time.
- I learned not to belittle someone I love because they can’t hurry along. I learned that being encouraging, and even being firm (so that we eventually did get moving) is part of caregiving.
- I learned that I wanted her to maintain her sense of dignity. While in many ways I did have to mother my mother, I didn’t have to strip her of honor.
- I learned to smile as others whizzed past us. Now that my mom’s gone, I so miss having my buddy at my side.
I wrote this after my mom had passed, it’s in my book, Mothering Mother, I hope it explains best
When I Miss Her
I miss Mother when I go to the grocery store. Since I’m no longer eligible to park in the parking spaces for the handicapped, I must walk by the light blue and white lines as I head across the parking lot that no longer takes me ten minutes to cross. I see Mother grip the handle of the grocery cart and remember the freedom this rolling walker gave her. I still see her curved spine dipping, her stockings slowly sagging from above her knees and eventually bunching around her ankles.
I see her silhouette, complete with a bright blue nylon cap and its hundreds of petal-shaped pieces that made her head look like a massive flower. Some people loved her hat, others made fun of it, snickered about it behind our backs, but there were a few who found her and her blue hat endearing.
I miss her as I pass by the bananas. She said they gave her potassium and ate one a day. I had to buy seven a week—not six, not eight—though I often cheated, hoping to tide her over a day or two. Sometimes I get the urge to eat one in case I, too, am low on potassium. Any fruit she ate had to be peeled, cored and washed until it practically no longer resembled anything that ever lived. Apples were pale and tinged brown, grapes looked naked and embarrassed without their skins.
I miss her when I pass the Little Debbie display. Her face would light up at the sound of me opening the cellophane wrapper of an oatmeal pie.
I miss not picking up her half gallon of milk, her apple juice and her frozen dinners. I knew which ones she liked—the meatloaf, beef tips and flounder, nothing with pasta, very little chicken. Ice-cream bars remind me of her dying, not living. I can’t bring myself to eat one, or even buy them anymore.
I miss her small talk with the cashier, the slightly condescending way she treated the help, and the times she surprised me with genuine kindness and humor. As time went on, she took forever to get out her wallet, and two forevers to pull out her credit cards. She could no longer differentiate a Visa card from a debit card, from a license. She’d just let them pick, holding the plastic squares out innocently like a hand of playing cards. I always tried to catch her before she let strangers rifle through her entire wallet and checkbook.
By then, some of her prejudices had diminished and she chitchatted with anyone who caught her eye, regardless of race, which was a pleasant change, though unreliable. She insisted the baggers carry our groceries to the car, no matter how few we had, and she saw no need to tip them. I’d slip them a dollar or two after buckling her in. Tipping never was her thing.
Now I just go to the store like anyone else. No one to slow me down, no one to check on, no bananas to count, no Little Debbies to hide so she won’t eat them all in two days. It’s just ordinary, and what once seemed a bother, is now missed.
What To Do If You’re Having a Difficult Time Being Patient:
- Accept that you’re supposed to be caregiving right now.
- Accept that ironically, there’s something that this time in your life has to teach you.
- Accept that while it’s stressful at times, that you choose not to add to your stress by being miserable.
- Find ways to occupy your time or your mind while you wait. A vibrant “inner” life is a cultivated skill. Practice memorizing a poem, always have a paperback book in your purse, update your blackberry, or take up drawing whatever is in front of you–the point is to not feel that your time is wasted.
- Enjoy your loved one’s company–as exhausting and challenging as it is, you’ll miss them. Trust me on this one.
- See this as a season. Caregiving isn’t forever.
- Imagine that your children or someone you respect is watching you on a tv monitor–do you have a pleasant look on your face? Are you proud of your role? Are you passing a spirit of joy on to those around you? If you saw yourself on that tv monitor, how would you feel?
- Let go of what you’re not doing at the time. Forget what’s for dinner or that bank deposit you didn’t make.
- Put on music or hum a tune. Music is an amazing mood changer. Do it even if you don’t feel like it.
- The great secret is that while you’re caregiving, you’re learning, changing and growing. Something you’re doing today is a skill you’ll need for tomorrow. There really is something in it–for you.
I remember this incredible line from the movie, Evan Almighty. God, played by Morgan Freeman says, (and I’m paraphrasing),
“You know, people pray all the time to be more kind, more forgiving more patient..as if it’s an object, a box I can just hand them.
What they don’t understand is that when they pray for more patience, I have to give them a situation in which they will learn to be more patient.”
That knocked me back. Somewhere and at some time (I surely don’t remember), I must have prayed for patience because boy, did I get a lesson in that fruit of the spirit.
I botched at the whole patience virtue concept most of the time. While outwardly I might have held it together, most of the time I felt like running.
Looking back, I wouldn’t want to see myself up on that tv screen, but I also think I got it right a few times. And that’s what matters. A few times, every once in a while, I found myself enjoying that slower pace. Crossing the parking lot, walking quietly and languidly beside my mother is now some of my most precious memories.
For the most part, becoming a patient caregiver isn’t something you have to aspire to–it’ll just happen.
Most days, you have to just get by. I really don’t think we’re supposed to over-analyze everything we do. When you get your heart–and your head right, when you choose to be present, choose to encourage, all the rest will just fall in place. What you learn on a slow day of caregiving are gems you’ll carry with you for life.