On Death, Duty & Dysphoria

On March 17, 2010 my beloved 89-year old grandmother was referred for hospice care. Her dearest wish was die at home surrounded by those who love her. Because she has been living with me for the past few years,
this meant that she would die in my house. On March 21, she got her wish.

I started this blog because I discovered that writing about the situation helped me to process the tide of new
information and swirling emotions that comes with being a hospice caregiver. By documenting my journey,
I hoped it would help me to cope with everything that happened in the days to come. It has.
I continue it now, both as a tribute her remarkable life, and as a means of coming to terms with her loss.

Everyone handles the death of a loved one a little differently. If you are dealing with a similar situation,
or if you are one of the many adult children or grandchildren faced (as I have been) with making end-of-life care choices
for an elderly relative, I hope these posts will help provide some perspective. Perhaps, in some small way,
my experiences will help you cope during your own journey.

Friday, March 19, 2010

One Step Closer (part one)

I don't know how I could think I would actually be able to get some work done today.  In only a few hours, the situation has become more critical, and it's hard to think about anything else.  However, I need to do something to keep from going to pieces, so I am trying to preserve some normalcy by doing laundry, taking the dog out, making coffee, and writing.

I work mostly at home.  That is what makes it possible for me to take on the responsibility of caring for my grandmother.  If I had a regular 9 to 5 job, I couldn't do it.  This is a blessing, but also a curse.  While working at home means I am available to see to Grandma's needs, it also means that 98% of my stress is concentrated in one location (I reserve the other 2% for frustrating clients and driving on the pothole infested streets that have plagued my town following a long, snowy winter).  It's hard for me to get away from the 98%, and when I do, I'm usually coping with the other 2%.

At about 1:30 this morning, I woke up to the sound of Grandma talking (or maybe moaning would be more accurate) in her sleep.  The only thing I understood clearly was the phrase, "Just one more day..."  I went to her room.  Her eyes were closed, but she was moving around restlessly, and I couldn't tell if she was awake or sleeping.  I touched her hand, and her eyes popped open. She said, "I'm okay, I don't need anything.  Turn the light on. Why'd you come in here?"

I should probably mention, Peggy is almost completely deaf.  In middle age, she had tinnitus - when I was a child, I remember her often complaining of "ringing" in her ears.  The hearing loss progressed slowly over the years - hearing aids helped for a while, but eventually even those became useless. Now, if you really shout, she might be able to catch a word or a phrase here and there.  But who wants to shout at your sweet little old grandma?  I know, despite having some theatre vocal training, I can't manage to raise my voice to the level where she can hear me without sounding angry, even if there's no anger in what I'm trying to communicate. So for the last few months, we've been "talking" with Grandma using erasable white boards.  We write everything for her, and she talks back at us.  Actually, she shouts, because she's totally unaware of how loud she is.

So this morning at 1:35 a.m., when she asked why I was there, the conversation went something like this:

Me (writing):  You were talking in your sleep.

Peggy: I was? What did I say?

Me:  I don't know - I couldn't understand.  (erase - blank slate) Do you need anything?

Peggy: No, I'm fine, I don't need a thing.  Where's my water?

She drank some water.

Peggy:  You don't need to keep coming in here.  I'm fine.  You should be sleeping.

Me:  It's okay.  I don't mind.

Peggy:  Just shut my door, then I won't bother you.  I want to go to sleep, I can't get to sleep.

So now it's decision time.  The doctor prescribed a morphine solution, to be given as needed if she was restless or in pain, but not more than every 4 hours.  She hadn't had a dose since 4 that afternoon, as she'd been sleeping pretty peacefully since then.  But this, in my inexperienced judgment, qualified as restless. Time for more meds.

I am not good with medication.  It makes me uncomfortable to give someone drugs.  I'm always afraid I'll make a mistake.  However, for several years I had to deal with giving twice daily subcutaneous injections of insulin to my (now late) great, diabetic cat Petruchio, so I've become a bit less squeamish.  The morphine solution is not given with a needle - you suck it up in a syringe, and then squirt it into the corner of the mouth.  It took several tries for me to get the right dosage in the syringe, as I was sleepy and my hand was shaking ever so slightly, but I managed, and gave her the dose.

Me: This will help you sleep.

Peggy: Good.  Now YOU go back to sleep.

Me: Call if you need something.

Peggy: I'm fine. I don't need anything. Close my door.

Me: (speaking, because I know she can read my lips on this one): I love you.

Peggy: Eyeball to eyeball?

Over the years, as her hearing as failed, this has been our "thing."  When I say I love her, she wants to make sure I am looking her directly in the eye - "eyeball to eyeball."  I know that's because she wants to see me say it, because she doesn't really hear it.  The only time I have ever refused to do this is when she asked me while I was behind the wheel of a car,  Believe it or not, that happened more than once.  It never seemed to occur to her that I should be watching the road, not looking her in the eyeball.

I bend close, our noses almost touching, and say it again.

Me:  Eyeball to eyeball. I love you.

Peggy:  I love you, too.  Now GO!

I shut off the light and walk out of the room.

Peggy: SHUT MY DAMNED DOOR!

I close the door, but leave it open a crack, just in case.

I am writing this down now because I believe it may be the last conversation I will ever have with her, and I want to remember.

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