Paperwork? Exhausted Caregivers Battle Bureaucrats For Rights…

Like it or not paperwork is a huge part of being a caregiver.

There are prescriptions, prescription adjustments, forms to fill out for medical plans, for Red Cross equipment loans, and at doctor’s appointments (why do we have to fill out the same four page forms every time we go to the heart clinic?).

There are forms to pin on the fridge for the ambulance crew, bills to pay, rates to negotiate and battles that must be fought.

All of this when you are already exhausted, overwrought and all but ready to give in.

Don’t give in.

If the paperwork is getting you down, just put it aside for a day or two.  Let it sit.

And don’t let the agencies bully you.

You need to know when to fight and when to give in graciously.  If you can.  Sometimes we’re just too worn out to know how to be gracious.

For me the major battle was over the declaration of palliative care.

Where I live, Palliative Care means that his meds (which were costing us $500 a month in spite of the provincial medical plan) and the relief care were to be covered by the province.

In other words, I was not supposed to have to pay anything after the hospital cardiologist in Vancouver declared Chris palliative in writing on the approved form and sent it to all the proper authorities.  That happened on February 6th.

Agents from the health authority phoned me almost immediately and told me I could have the additional care the cardiologist recommended and it would begin the next day.

However, the worker came only for his usual hour.  When I phoned the agency, a different clerk said Chris would not be deemed palliative in their system until their nurse had visited and confirmed the declaration.

Even though I repeatedly phoned for an appointment, the health authority didn’t get a nurse out until the end of February.

In the meantime, the more I thought about the situation, the less it made sense to me.

Why did a nurse have to approve a cardiologist’s diagnosis?  Chris was declared palliative on February 6th in writing (I had a copy of the signed form), and that should have been sufficient.

But their inability to get a nurse out to us was their justification for billing us for all of February.  By now Chris had been ill a long time and our resources were extremely low.

I fought this.  Chris fought this.  His daughter fought this.  But they insisted I pay until the end of February.  I finally agreed to this just to settle him down, but it was too late.

In spite of our efforts to steer him away from the topic, Chris argued with the nurse in the late afternoon about this issue.

That night, he had to be taken by ambulance to the hospital with a severe heart attack.

I couldn’t help feeling the health authority was wrong on this one.

So during Chris’ hospital stay, I composed a letter to the health authority, copied it to our local MLA and the cardiologist.

In the letter I stated our case in the most logical terms possible. Enclosing a copy of the palliative care declaration form, I mailed the three letters.

After several days in the hospital, Chris returned home.  He died only days later.

I didn’t hear anything regarding the letter.  I thought afterward it was a foolish thing to argue.  It seemed inconsequential in light of Chris’ passing.

Then, some days after the funeral a man phoned from the health authority head office back east.  He said they had received my letter, reviewed the file and would refund the monies I had paid for February 6 to 28th.

It felt odd, something previously so important now seemed almost irrelevant.

But I knew Chris would have liked to have known that we got our money back.  He hated to ever feel that we’d been taken advantage of.  Especially when you’re dying.

Miss you, Babe.

Margaret Jean.

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