Chat @ Care-giving: H is Also for Horrible

A few months ago I blogged about how relieved I was that hospice had been recommended for my Aunt Edie. I’d felt so alone and unprepared to deal with her worsening health situation. I’d watched others slip out of this world and into the next with the help of hospice personnel and assumed that what I’d seen before was what my family would experience.

They told us that, at first, someone would just be dropping by once a week or when they were called to check on my aunt.  That was OK.  She was an independent sort and her pain was well under control.    Just knowing someone medical would be checking on her made me feel better about leaving her to return home to Dallas, three hours away, where I provide care to my mom and my dad.

I called her daily and some days that would be a pleasant experience.  Other times I would get off the phone wondering whether her hospice care takers were really taking very good care of her.  My cousin and I would email back and forth, speculating on whether we were doing everything we should.

As the situation escalated we were informed that we needed to be at Aunt Edie’s side more often.  We questioned what hospice would be doing.  Well, the nurse would come by more frequently and an aide would come by a few times a week to bathe Aunt Edie.  Anything else we’d have to provide ourselves, either personally or by payment.  No other agencies could apply for funds for someone under this hospice plan.  I began to wonder what hospice plan.

I have no complaint about the caregivers who were provided, but about the sparsity of their visits.  Each person who came to see my aunt was gentle, knowledgeable, capable and compassionate.  They just weren’t there very often.   Other people I’d known on hospice had a hospice representative with them around the clock.  Sometimes it had been an aide and at others it was a nurse, but the families never had to face the situation alone.  When they told me hospice, I’d coveted those bedside companions.

For a while we hired a woman to come sit with her five hours a day and to provide meals.  My very frugal aunt would stare at the woman who was costing us $15 an hour and fret.  The fretting was more damaging than the solitude.  Aunt Edie pointed out she was merely sleeping most of the time anyway.

Finally, it became clear there was no threshold at which hospice would suddenly provide more assistance.  Aunt Edie had no spouse and no children.  In fact, she lived in a town where she had no other relatives.  She had a lot of friends who wished they could help, but most of her friends were near her age and had no business caring for someone as seriously ill as my aunt; or they worked full time; or they had family members of their own who needed their attention.  So my cousins and I divided up the coming weeks.  In the last days it was too much for one person alone.  My cousin Brenda and I spent the last week of Edith’s life standing by, administering pain killers and wondering every moment whether we were doing the right thing or not.

I’m telling you this because I want you to know that not all hospice is created equal.  If someone you love goes under the care of a hospice team, ask more questions than we did.  When they tell you that they’ll be with you every step of the way, ask what that means.  Ask specifically whether there will be someone there to assist the family
AROUND THE CLOCK in the last days.  Not whether someone will be a phone call away, which we were assured we’d have.  Even when we called, we were merely told that we were doing the right things and admonished to call if we needed anything else.  When we said we needed help, we were told we could have twelve hours of respite care.  We didn’t want respite care – we wanted help.  Our aunt was dying.  We didn’t want to go bowling.  We wanted someone who knew more about this than we did to guide us through this.

We didn’t get it.  After Aunt Edie died…I can’t say passed away; there was nothing passive about it…hospice called the funeral home, removed the medical devices and took the sheets off the bed.  They left a folder for us.  It had a workbook for us to use to labor through our grief.  We threw the workbook away.  We’d made it through Aunt Edie’s death virtually on our own.  We doubted the workbook had much to offer.

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