Month: July 2018

“Make sure to take care of yourself,” well-meaning friends say.  Self-care is important, the caregiver blogs say.  “Are you taking care of yourself?” my doctor asks.

I keep wondering what is self-care, anyway?  I mean beyond the obvious basics of annual physicals, dentist appointments, etc..  On Google, there are over one million answers to a search on self-care.  The first one came up with 45 simple practices.  HA!  Who has time for 45?

I don’t need a list to tell me other obvious ones like eating right, which is not so easy when I’m focused on Larry’s food and I hate to cook, and I’ve taken to stress eating (Oreos or potato chips).  And exercise is always on the self-care list.  It requires creativity and motivation to get exercise when I don’t feel comfortable leaving Larry alone for long.

A very caring and wise person in my life suggested that self-care is making sure you are “filling your well.”  It’s what restores your energy, rather than depleting it, she said.  That makes sense.  Healthy eating restores my energy and a half pack of Oreo’s doesn’t.  Taking a long walk restores my energy, but an  aerobics class with a loud instructor doesn’t.  But what else is self-care?

As I muse on what it is for me, I guess a starting point is just figuring that out.  Self-care is knowing more granularly what fills your well.  That’s hard to notice when so much of my attention and energy goes to filling Larry’s well, one way or another.   I start thinking of a few activities that don’t qualify as self-care for me:  gardening, cooking, television, golf, or reading the news.

After a lot of thought about things I’ve done and how they’ve made me feel, I made a list:

• Quiet time alone
• Being in nature – especially expansive views, big views like oceans and mountains
• Reading
• Playing at painting and drawing, including doodling, zentangles, and coloring books (rather than trying to create art)
• Staying away from social media
• Friends in small groups, not large gatherings
• Humor – Larry gave me an Amazon Echo and I love asking Alexa for a joke and smiling while groaning at the corny offerings – “How many alligators does it take to change a lightbulb?”  “One – for him, it’s a snap.”
• Meditation – this is one we can do together.  I just bring up free guided sessions online, some focused on breathing, some focused on relaxing, others on self compassion  – usually about 20 minutes.  He finds it relaxing, as do I.

Wait!  All these are good activities but I’m thinking maybe real self-care is deeper.  It’s about allowing myself to care about me, that I matter.  When we had a normal relationship, care went both ways.  There was a balance and taking care of me wasn’t taking anything away from him, because he did that.

Not that doing any of those things on my list above would take anything away from him.  Oh, darn.  I’m confused about what I’m trying to say.  It goes back to an earlier post about where’s the me in all of this caregiving?  I know it’s my choice to be a caregiver.  So that’s me.

I need to think about this some more.  To paraphrase the poet Rilke, I may not have the answers but I can hold the questions.

 

“Be patient toward all that is unsolved in your heart and try to love the questions themselves, like locked rooms and like books that are now written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer.” Rainer Maria Rilke

It’s all too easy to lose yourself to caregiving.  It’s an insidious process.

The needs and responsibilities mount up over time, almost without your noticing.   You start giving a little help here, a little help there.  Maybe you hardly notice.

I didn’t think of myself as a caregiver two or three years ago when we moved down here, although I was.  I made the doctors appointments, helped with buttons, and socks, and cutting food, that’s all, not much.

As his symptoms increased, so, too, did my caregiver tasks.  Each one takes time, energy, some little, some big.  I didn’t really notice that as you add something to your day something else falls away.

The other day I asked Larry what would he say to caregivers.  “You don’t realize how hard it is,”  he said.

“You mean I should tell other caregivers they don’t realize how hard it is?” I asked.

“No. YOU don’t realized how hard it is,” he said, looking at me.

Sometimes it isn’t very hard.  Like now.  I’m sitting outside with my feet up on a cushion, and a hot cup of coffee beside me.

Course, I’m listening for him.

I do take care of myself,  although I make his doctors’ appointments first.  But I’ve had my annual physical, and seen the dentist and all the other stuff you have to do to know you are healthy.  I shouldn’t gloss over this because health is a real caregiver risk.  The statistics are pretty awful about how many caregivers die before the person they are caring for die.  Stress takes its toll.

It’s not just the tasks, the time that caregiving takes, even the physical strength to get this 200 pound, 6’2″ tall man from chair to walker to wheelchair to bed.   It’s the fact that I want to make him happy.  He has limited time.  I want him to be happy, want him to have his choices.

I’m always asking what do you want to do?  What do you want to eat?  Where do you want to go?  What do you want to watch on TV?

In the process I start to forget to think about what I want.  Or what I need. And then I start to not even know what I want.

Sometimes I wake up in the morning and get up knowing I’ll have an hour to myself before he wakes up.  I don’t even know what to do with myself.  There’s always chores, of course.  But what do I WANT to do???

When we first had someone come to stay with him for 3 hours a week so I could get out to do things, I did errands.  Got groceries, my bone density test.  Those things are important but when I ran out of errands I didn’t know what to do.

It’s only recently that I’ve started to say no to him, in little and big ways, when I think it will take too much out of me.  I realize I have to conserve my energy.

The other night I had already eaten and the kitchen was clean.  He’d eaten early and so now he was hungry.   I asked what he wanted.  “A burger,” he suggested.    “Grilled cheese?”  No I’m not making a burger or grilled cheese.  I don’t want to wash pans.  I’m tired.  We settled on toasted cheese.  No pans.  I felt a sudden wash of guilt.

The biggest request I said no to was spending time up in Massachusetts, where we came from two and a half years ago.  We have important family and friends there.  I agonized night after sleepless night.  We’d gone the last two summers and it was exhausting and his symptoms all increased.  And his needs were less, then.

I considered one way, then another, for too many sleepless hours.

Driving, flying.  Flying and having someone drive our car.  What to do with the power wheelchair.  How to find the appropriate accommodations.  I went back and forth.  Go, not go.  A month.  No!  Maybe a week in a handicap accessible timeshare.  Flying.  Borrowing a wheelchair.

It didn’t help when I read one of the online discussion groups answering someone’s question about taking their loved one on a trip.  GO, go, go, many of the answers said.  Don’t deprive them of this.  You can make it happen.  There was nothing about the emotional and physical cost to the caregiver.

Finally we decided not to go.  He didn’t want to go without his power chair.  He wanted his comfort, he said.

I realize as I write this, that it’s not a good example of me saying no.  He was the one who finally said no.  Well, I guess I said no to driving up the 1500 miles in the wheelchair van.  Darn.  I knew right from the start that it would be too much for me no matter how we went.  But I didn’t say no.

It’s hard to remember that I matter, too.