Lump (17)

This is not about her.

This is all about her.

This is all about me.  And therefor it is all about you.

Yesterday was a bad day.  Yesterday I spent most of the day in bed.  I was not a good or attentive care provider.  She had to get her own drinks.  She had to make her own food.  No one else was there to provide either.  Nobody did the dishes.  Nobody cleaned the living room or straightened the kitchen.  My contribution to the day consisted entirely of one refill of her cup, and giving the cats their medicine.

The reasons for my bad day are complex, and I could probably spend an entire entry writing about them and explaining them and analyzing them so that next time the conditions come about I would be able to do better.  But I am not going to write about that.  I am guessing that there will be plenty of time and opportunity.

Bad days are going to happen.  She has lots of bad days, of course – getting injected periodically with toxic chemicals in an attempt to prevent your body from murdering you will do that.  Who wouldn’t have bad days in a situation like that?  What is amazing, and a testament to her strength and resilience, is that she has GOOD days.  She has wonderful, happy, fun days where she laughs and enjoys time with friends and plays games and writes her blog and plans for the future.

That is a miracle.  That is beautiful.  That is the glory of life.  And that is her glory.

But the point is, she has bad days too.  And so do I.  I am more prone to bad days than most, but even the best out there have them.

It’s OK.  It’s going to happen.

There are three takeaways from this.

  1.  Accept that bad days will happen.  The worst thing you can do is have a bad day and then beat yourself up over it endlessly.  That just leads to more bad days.  It rapidly turns into a cycle that it difficult if not impossible to break.
  2. Be prepared.  If you accept that you are going to have bad days, think about how to prepare for them.  She was smart enough to suggest this to me early on.  Now I have drinks set up in the fridge, two freezer cups so she can keep her fluids cold, soup stockpiled in the cupboard, ramen noodles and pasta, and some frozen beef and broccoli.  Our friends K & S have also helped us to be prepared for the bad days by giving us a stockpile of frozen meals that can be popped in the microwave for the days when nobody can cook.  This is a great thing to do for friends, and I really recommend it.
  3. Have someone you can call.  When friends offer assistance, it’s OK to take them up on it if you need to.  Maybe I will never have a bad day so bad that I can’t get my ass out of bed to take her to a doctor appointment or handle an emergency.  But I am not counting on that, and I know who to call if things go south for me and stuff needs to get done.  If you are a caregiver, know who YOUR caregiver will be.  It’s important, both for your own health and the health of the person you are caring for.
  4. Have someone you can talk to other than the patient (or, if you are the patient, other than your caregiver).  You NEED a pipeline to release pressure, to talk about things.  Your friends who offered help?  Find one of them if you can.  This one will probably be either very easy or very hard – if you already have a friend you can talk to about other things it’s a simple matter to talk to them about these struggles as well.  If you don’t, you may have difficulty because now may not be a time that you feel comfortable opening up to someone you haven’t opened up to before.  But even if you have to talk to your cat, or the seagulls at the beach, or God,. or Mr. Bing Bong your imaginary friend, let it out.

Bad days are going to come.  It’s particularly important to prepare for them at times like this.  I must take care of me in order to take care of her.  Heroic sacrifice is great when necessary, but the thing about heroic sacrifice is that it doesn’t last very long.  Cancer is not a heroic sacrifice situation – it’s a lifestyle, and it goes on forever.  To fight it effectively caregivers and patients and friends and family all need resources – every day, every hour.  No one person can provide all those resources – not the patient, not the caregiver, not the friends, not the family.  There are days when my ability to provide support is going to be high, there are days when it is going to be low, and there are days when it is going to be all but nonexistent (as much as I wish it were not so).  But the need for support is always going to be there.  And for those times when my ability to provide that support is limited, we need a plan, both for her sake and for mine.


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