Category: Caregiver Emotions

Time is weighing heavily.  We have minutes and hours and days to measure the distances the passage of time.  The measures are failing me.

I don’t know how to use my time, how to feel about my time in any given day.  I’m both bored with too much time on my hands and stressed with too little time – AT THE SAME TIME!  How is that?

My time is out of my control.  My time is unpredictable.  My time is non-rythmic (is that a word?).

I generally think of time as linear – if you visualize it the past is on the left, then the present, the future on the right.  I believe that Asian cultures who read right to left see their timeline reversed, with the past on the right, the future on the left.  When I worked in Alaska I was told that many of the Alaska native tribes envision time as a circle with the past, the present, and the future always around you.

I see only the present.  No future.  No past in a way.  Neither is relevant to our present.   How much time do we have left together?  A day?  A week?  Many months?  He wants the hospice doctor to tell him.  I want to have enough left in my reserve tank to help him through.   How much time?

In any given day, I know I will wake up around 7:15 (because if I don’t the dog jumps up on my side of the bed and bats me with his paw.)  I know Larry will wake as I get dressed and will want help with his catheter.  Then I feed and walk the dog.

After that, who knows?  Larry might need a breathing treatment in bed.  He might want to go back to sleep right away.  This Tuesday the hospice CNA called at 8:13 and said she’d be here at 9:00 (though I’d asked for a late morning shower for Larry as he sometimes doesn’t wake up again until 11.)

I treasure that quiet time alone before he gets up. I’ve always treasured that early quiet. I make a cup of coffee.  I meditate, write, look out the window at the early sun and the long shadows.  Now that he’s so weak, I dread getting him up – NOT having him up.  It’s the heavy wrestling to get him from the bed to his wheelchair, get clean clothes on him, etc.  Once he’s up the hard work is over.  It’s just little things that come unpredictably, whether a glass of water or a new symptom.

I can’t really leave for any length of time or start anything that can’t be left.  I do some chores, empty the dishwasher.  He wants the bathroom.  I keep checking to see if he’s done.  I get his pills ready, his coffee ready.

Finally I can help him clean up and get dressed.  And the day for us starts.

I know I should do my back exercises but I don’t have the energy to make myself get down on the floor.  I do a little painting, but have to stop to help him wipe his hands after he finishes breakfast.  My painting is awful.  Where’s my coffee? Where are my glasses?  Did I take my pills? Where’s my phone?

Then he needs nothing for hours, so what do I do with myself? I didn’t know I’d have this time.

Then I have something I need to do and I can’t find the time.

Okay, I’m sick of complaining.  How much worse it all is for him.   And he never complains.

I’m going to work on gratitude.  Ten things:

1. I’m grateful that the mornings are almost always sunny.
2. I’m grateful that I get to have mini-visits with neighbors who are out when I walk the dog and they are all very caring and give me hugs.
3. I’m grateful we have the dog so I have to get out of the house for at least two walks a day and two other quick outings.
4. I’m grateful we live in a beautiful neighborhood with wonderful people who are making dinners for us every other night.
5. I’m grateful we have three fabulous kids who love us and check in regularly, caring family, along with many many friends.
6. I’m grateful we don’t even notice the heat because we have air-conditioning that works well since we replaced it two months ago.
7. I’m grateful my brother-in-law has been here to help for a month (he leaves on Wednesday.)
8. I’m grateful I am healthy.
9. I’m grateful that except for his Multiple System Atrophy, Larry doesn’t have any other health problems or any dementia.
10. I’m grateful I have a book to read next to my bed that I haven’t read before.

I think I just realized that funeral choices are all about our beliefs about death.  Duh?

Larry and I have been talking about his funeral.  Not that it’s imminent, mind you, but we have to tell hospice who to call.  It hasn’t been the maudlin, sad discussion you might imagine.

It’s been an argument.  Well, if I am brutally honest, not really an argument – more me trying to talk him out of his wishes.  Sounds mean, doesn’t it?  What can I say?  We feel very differently!!!  I want a balance between what we want, and he wants it his way.  Of course he does …. it is his funeral, isn’t it?

I’ve never given funeral choices much thought. I am working to get a perspective to help myself feel more comfortable with his choices, so I am trying to contemplate how we differ in our views of life, God, and what might or might not come after.

I’ve also looked further afield (more Google research) at how others resolve funeral choice differences. Often it comes up as children disagreeing with one another about their parent’s funeral.  I also read about one couple where the husband wanted to be cremated but the wife was a post-Holocaust Jew and the idea of cremation was horrific to her, as you can easily understand.

Strangely, what was particularly helpful to me was reading about how different cultures treat death and funerals.  Like the eastern Indonesians that save up years for a lavish funeral and in the meantime keep their dead loved one in their home, symbolically feeding them.  Or the Malagasy people of Madagascar who dig their loved one’s bones up every 5 or so years to visit with them and get their blessings.  Even colors of death are different – sometimes black, but also white, or even green(in South America).

I particularly liked the idea of some Vajrayana Buddhists who believe that in death the soul moves on while the body becomes just an empty vessel, so they chop it up and put it on a mountaintop for the elements (including vultures).  It’s called a Sky Burial and apparently the majority of Tibetans still choose it.  While it may sound a little ghoulish to some, think of how ecologically sound it is – there are no chemicals used, no land to set aside for cemeteries.  In South Korea, because of dwindling graveyard space, you have to dig up a loved one’s grave after 60 years.

I don’t believe in the classic God figure, heaven, or an afterlife.  I kinda wish I could because it would be very comforting, but you can’t make yourself believe in something.  I believe in universal energy and when I die I just go back to being part of that energy.  So when I’m dead, I’m gone and there is no longer any separate me.

Therefore, the funeral isn’t for me – it’s for the living , whatever they want and need.  Have a New Orleans Jazz Funeral, throw my ashes in the sea, put my body on a mountaintop, or turn me into compressed beads, like some South Koreans who don’t want to have to dig up their loved one in 60 years.  Okay, I do hope they don’t keep my body in their living room for years, even though in our family I remember my mother talking about her grandfather being “layed out” in the living room.

My brother-in-law, Jimmy, who is staying with us for a few weeks to help with Larry, hates the idea of no burial location, no gravestone.  He wants ensuing generations to have an actual place to go to see their ancestors and loves old cemeteries.

I have a friend who wants a Green Burial.

Reading and thinking about such extreme differences in beliefs and in funeral choices actually makes the distance between Larry’s view and my view become so much smaller.  He believes in a traditional God, Heaven, and an afterlife.  He wants to preserve his body for that, say goodbye to his son and friends in the location he spent most of his life in, and be buried alongside his family in the family plot in York, Maine where he was born.  That makes sense to me now, given his beliefs.  I can go with it.

I’ve just realized the funeral has become a brief moment of time that is a concrete location for my angst to fall. The cost brings up my irrational but lifelong “bag lady syndrome” fears about money, and the thought of sitting by his open coffin  brings up my porcupine-like prickly way of protecting myself from pain.

I remember being pregnant with my first child and concerned that so much focus of the pre-natal courses we were taking were about labor and delivery.  After all, no matter how painful the birth was, it was likely going to be over in 4-48 hours.  Creating a new life with this new infant was really going to be the hard work.   How would I manage?

No matter how painful the funeral, it will be over in 4-48 hours.  It’s creating a new life without Larry that will be the excrutiatingly painful hard work.  That’s really what I want to protect myself from.  How will I manage?

I had coffee with a grief counselor yesterday and asked her what to do with  hope that comes unbidden when Larry has had a good night or two (or four as of today!!!)

She has many years of experience as a grief counselor and also as a full time caregiver to her husband in his late stages of Parkinson’s Disease and she is very wise.  She asked “what are you hoping for?”

I thought about it.  “More comfort for Larry.  Less gasping for air, less throat spasms.  Maybe even a reprieve from this pulmonary crisis for awhile, you know –  more good days.”

She smiled and gave me the best answer.

“Don’t try to manage it.  We all need hope.  Where would the human race be without hope?  You need hope – just to get through the days.”

She reassured me that my hopes were reasonable, tied to reality.  I wasn’t hoping for him to recover from his Multiple System Atrophy.  I wasn’t hoping for a cure.

I’ve been worried about my hope, my momentary relief and joy, when we have good hours, good nights.  That I was fooling myself.  That I was wanting the impossible.  That I needed to TAMP IT DOWN!

She said I needed hope to keep going.  But that the days would be up and down, up and down.  I had to take my sleep and my hope when I could get it and not expect things to be normal for a long time.  Not even a new normal.

I guess I worry that hope makes despair all the more painful.  That hope will inevitably cause disappointment.    Of course, disappointment will be the least of the pain I feel.  It’s just another shade of grief.  Perhaps hope is the space in between those moments of grief.

I asked Larry how much time he thought he had.  He shrugged.  “A day?  Two years?”  I asked if his body felt like he had two years and he said no.  “Maybe 6 months.”

“What is it that makes a day worthwhile?” I asked him.  “You, family,” he answered.”

So my hope is that his days are worthwhile.  That our days are worthwhile.  That we can find the moments in the hard days that are worthwhile.   That I don’t have to do anything with my hope – we can live with hope, and cope with whatever reality brings us.