It seems endless, that long lonely road so many of us walk.  For some it may have started with a sudden shock, a heart attack say, or a stroke.  One minute life was normal, happy, fulfilling.  The next, chaos.  Fear, even terror, strikes hard.  Fear of the untravelled waters of loneliness, the unknown, our own ability to cope.  Fear of isolation, the loss of friends, poverty, being stretched too far too often.  Fear of the “what if”.  Fear of death.  All these litter the road we travel, each and every one contributing to the unremitting stress we bear.

Then there is the fear of the expected, experienced by those caring for someone with a long, ultimately terminal illness.  This, along with all the other fears, makes life unbearably hard.  Harder still when, regardless of the cause, there appears to be no end in sight.  Nor do we want one.

Each and every one of us is committed to the long haul.  Each and every one us  is there to share, to commiserate, to do everything in our power to lighten the load for someone we love.   We are there to love, laugh, cry and console. 

But sometimes, just sometimes, it all becomes too much to bear.  Goes on for far too long. 

For me, the worst nightmare has been the ongoing isolation.  Because I have no family of my own, and am estranged, thank God, from Karl’s, I am truly alone.  I pay the bills, handle the banking, the insurance, work with his medical team, arrange special times for us to share and regular times to just be together.  His clothes need to be cleaned and replaced, his teeth fixed, his eyes looked after.  He needs books from the library, special treats and toiletries.  And every day, several times a day, I am on call.  To calm him down, share a joke or piece of news, console and comfort him, offer constant reassurance of my love.  Yes, a few kind friends have hung in with me, but they have their own lives, their own concerns and I’ve learned, the hard way, that it is all too easy for them to get “Karled” out.  I’m sure that none of this is new to most of you.  As I said at the start, it is a long, lonely road we travel.  How do you cope when there is no-one?  I can’t believe I’m the only one.  Maybe we can ease our isolation a little by talking about it a bit?

We need each other, you and me.  We need a place to vent, to share our  experiences, to meet others buffeted by the same tsunamic waves.  To laugh together and cry together and just “be” together,”  We need someone to walk that long, lonely road with us. 

I have found many “someones” who do just that for me.  Right here.  “Someones” who, like me, are in this for the long haul.

Thank you.

oldbat
 

Dear Long-haulers,

Oldbat, you've said it so well! I started trying to find the beginning of my long haul, and it goes back nearly 15 years to Pablo's diagnosis of CLL. But the real heavy slogging started in 2011, when he fell, broke 9 ribs, and the visible decline began. Still, I tried to live it out as one of hope for a way through for a few years. Last week I tried to count the number of trips to the ER we took at night or on weekends, and it was so discouraging that I gave up.

Now we know that Pablo is going to die, that there isn't really anything to do but keep him comfortable. But we have no idea when this will be--weeks? month"? years? Sometimes the not knowing is the most unbearable of all.

I guess because I live with him, this understanding has come to me more clearer and much before it has to our two daughters (my step daughters). One of them is still fighting this perspective, and shapes her battle as regular battles with me over care decisions.

Until I found you all, I felt totally alone, and most of the time crazy. Now, I am grateful for a place to listen, share, and light candles. I remember you by the names that are not your names, light a candle as I say your names, and reflect on the beauty and grit you share.  Bless you all.

Nouce

A different kind of loss

Grief is usually associated with death.  Of a parent, spouse, child or friend.  But there is a whole other kind of grief.  Grief for the person who’s still there.

I’m talking about the overwhelming sense of loss and despair felt by those who still have the person they love, but have lost them to stroke and/or disease.  Yes, they’re still there.  Except they aren’t.  They may be unable to respond, trapped by illness, in a body that can’t indicate the slightest emotion.  Rage, sorrow, envy, remorse, shame, love, even humour not even mirrored in their eyes.  And yet, who are we to say they aren’t all present, just not accounted for? By the sufferer and the sorrower. 

Then there’s the other kind of loss, where the person you love is also there but, this time, semi-present, thanks to a stroke.   This might be even harder.  Let’s say he’s a man.  One who was once, and still is, greatly loved.  A man who relished company, conversation and companionship.  And still does.  He knows he’s not what he was, but can’t explain just how or why.  He tries and, because speech may be difficult for him, he cries.  When this happens, he can be easily diverted.  A kiss.  A simple “I love you”.  Promise of a treat.  Any and all of these make him, apparently, “forget” what was causing such sadness.  But do they.  Or is he just trying to make things easier for those he loves, too?

But he can’t make anything easier.  He’s now a child.  You’ve acquired a fill-in- the- number-year old son.  One with whom you cannot truly share your thoughts and feelings.  One with whom you will never again share the things you loved to do.  Enjoy a good meal and a glass of wine.  Read and discuss books, movies, theatre, music.  Make love.  Hike, play tennis or ski.Explore different countries, try out different languages, cultures, food.  Share old friends and make new ones.  You can’t even live together.  Life now is a series of visits.

What do you do?  There are some options.  Grief counselling or therapy.  Support groups.  On-line this and that.  But try and find one that deals with this.  They’re all about death.  Death of a parent, spouse, child, friend, even pet.  Social workers, community services, various religious groups are ready and willing, even eager, to embrace your experience of finality.  But this demi-ending, this limbo, seems to go unacknowledged anywhere, by anyone.  And so, you try to endure.  For those of us without family, this means days, weeks and specially week-ends of mourning.  A sorrow so overwhelming can only be shared by a very few, very, very close friends.   Grief takes over just when you think the worst is done.  Out of nowhere, apparently, a thunder storm of tears.  A paroxysm of grief, just to remind you that you must go on.  Must continue to visit, love, console, share what little you can.  All the time with a smile on your face, an encouraging word and hug.  Your reward?  The knowledge that your love is still returned.  A hundred-fold. 

Is that enough?  It has to be. 

Thank you all for reading, sharing and caring.

oldbat

Yesterday Karl and I did public readings from a book I have written on his journey through stroke at a downtown hotel.  I booked an accessible cab for the return trip from his long-term care home.  In spite of the worst snowstorm of the season, his morning ride was great.  Our audience was excellent.  We actually got a standing ovation!  But things went downhill from there. His 3 p.m. ride didn't show up.  I called the cab company at 3:30, and again at 3:40 and was put on hold for 10 minutes each time.  I called again at 4 p.m. and the dispatcher hung up on me.  If it hadn't been for the kindness of the people hosting the session, and the courtesy of the staff at the hotel, who brought us hot chocolate and desserts, we'd probably still be sitting in the lobby.  It was 4:30 by the time the cab arrived, with not an apology from anyone.

I've reported the company to the Licensing Board here, which is going to investigate.  I have also written a letter to the Toronto Star, which may or may not get published!

My question to you all is:  has this ever happened to you?  Not necessarily from a cab company, but from any other  paid "helping"l source?  How did you handle it?  I don 't believe we should simply suffer in silence.  However,  just retaliating the way I did takes so much out of you.  And, obviously, it should simply not be necessary.

old bat

Marigold, members of this community know that posting to this forum is not always easy, so we appreciate the courage and inspiration that helped you do so. That relief to ‘talk’ – even virtually – with others who ‘get it’ is so important. You are not alone. As oldbat said, “We get it. And we care.” 

I hope that you continue to find comfort in this forum.  Please know that you can safely share your struggles and joys here. As a writer once said, “A burden shared, is a burden halved”.

Are there other things that bring you comfort in your ‘long haul’?

Katherine