Good question.  If, like me, you are an “only”, someone who has to do it all, with no help of any kind, then you’re probably too tired/scared/depressed/angry to cope with anything other than the daily routine of looking after the person you love.  And fielding those, often contradictory, emotions leaves you with little or no time/energy/willpower to even think about yourself.  You’re too busy doing the very best you can for your charge.  Your best?  Are you sure?

Oh, we’ve all heard the warnings:  “Take care of yourself first.”; “You’re no good to him/her if you’re not on top of your game.”  Right.  So in between the in-home care-giving, the visits to the hospital or nursing home, the management of money, medicine, information, appointments, the cooking, cleaning, running errands, the whole apparatus of living for two, who may or may not be living together, you might manage to find time to read a chapter or two; watch part of a t.v. show you’ve always enjoyed before nodding off; think about a swim or a walk or even spending time with a friend, only to realize that there is something so much more important to be done for someone who certainly is not you.

I lived like that for the better part of three years, after my charming, intelligent husband, the great love of my life, suffered a catastrophic stroke that turned him into, essentially, my six year old son.  He couldn’t walk, talk, feed or care for himself, respond to anyone, was essentially comatose for several months.  And  that was the easy part.  All he really needed was for me to be there beside him, loving him, talking to him, holding his hand, aware that somewhere deep inside him he knew.  Knew that, as long as I was there, he was going to be o.k.  He told me this much later, when he had made what everyone considered to be a “miraculous” recovery.  It certainly was no miracle.  It was something we both worked at - hard – over the next few months.  It was a recovery, of sorts.  He’s still paralyzed down one side, so we watch sports instead of playing them; still struggles with his speech, so we seize every opportunity to engage socially, not just with each other, but everyone he meets; and he’s still brain-damaged, which means that I have got used to being called “Frenchy”!  Or even, occasionally, by his first wife’s name!  That’s led to some interesting conversations!

You all know just how much emotional and physical energy you invest into doing this.  I’m handicapped, and not able to lift him, so he has had to move into long-term care.  He comes home a couple of afternoons a week, and we talk to each other on the phone many times every day.  I deal with his doctors, nurses, physiotherapists and p.s.w.s.  And take him to all his appointments. I advocate for every single benefit I have been able to find for him and hate, hate, hate living without him.

So, where are the friends and family?  Well, friends suffer from empathy burn-out when things just keep going on and on.  Family?  I have none.  He has two daughters, who probably visit him a few times a year, on birthdays, Christmas, special occasions.  They have never offered to do as much as take me grocery shopping.  I call this the second-wife syndrome, one I’m sure some of you are also familiar with. 

I have been hospitalized for exhaustion twice over the past three years and have finally, what took me so long, realized that I simply couldn’t go on like this any more.  I have become a pretty good advocate for him, but who would do it for me?

I did!  Over the past summer, I deluged the local social service centre with requests, pleas, threats, you name it.  What I got was – the run-around.  You know the one:  you call the first place, they refer you to the second and by your fifth or sixth call you are actually allowed to leave a message.  Which never gets returned.  Sometimes I got lucky.  Someone at one of these agencies would actually speak to me, and even give me the name of the person/people who would be calling me back. And, of course, never did.  I started this at the beginning of May and, by the end of August was feeling pretty desperate.  Desperation often leads to depression, for me anyway, so I smacked myself smartly on the side of the head and told myself “well, talking doesn’t work, I’m a writer, so why don’t I just do that.” On Friday, I wrote the head office of all those agencies-from-hell an e-mail, outlining exactly what I’d been going through, for how long and asking what had happened to that much-touted government program “Aging in Place, Gracefully.”  Pointed out that there was nothing graceful about what was happening to me or my husband. 

It worked.  I got a call on SATURDAY MORNING!  From a senior CIVIL SERVANT.  Within a week I had a support worker who comes in once a week to help me with the cleaning,, laundry and shopping.  And next week a case manager is coming to see me to see what else they could help me with.  I have a list!

I know from reading all your posts that many of you have similar stories to tell.  Do tell them.  Muster up every bit of courage/strength/energy you possess and remind those agencies that they are in the social “services” business, and you’re still waiting.  But, I guarantee, if you do, you will get the help you need.  It shouldn’t be this way.  But it is.  So, go get ‘em.  You have nothing to lose but depression, anxiety and a truly hideous way of life.

As for my six-year-old son, he’s now aging in place, gracefully.  Just as the government said he would!

ADDENDUM:  If anyone would like a copy of the e-mail that got the action, just let me know.  I’ll be only too happy to share.