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| This is an original piece of artwork done some years back by my youngest sister. |
Sometimes we
are able to get used to the fact someone we love won’t be with us on Earth for much
longer, but that still doesn’t necessarily make their passing easy for them or
for us. Other times, death comes suddenly,
and is a jarring shock to all involved.
The truth is
we don’t know how long we have left here.
I’ve found honesty and a willingness to be vulnerable go a long way
towards connecting with others on a deeper level. When my dad was in a great deal of pain
physically or was struggling in mind or spirit, I wanted him to feel safe
enough to tell me that.
I remember
assuring him time and again I’d rather know the truth than have him expend
extra energy pretending everything was fine when it wasn’t. There were days when he was hurting too much
to pretend, though he wanted to. It was difficult
seeing my dad so weak and fragile.
The anguish
he experienced pierced my heart as well, because, although I wanted very much
to alleviate his suffering, there was only so much I could do. I took courage in knowing the whole time that
my family and I weren’t alone in all of this.
In addition to his doctors and medical professionals, we now had
additional experts who were there for my dad as well as our family.
Fortunately,
my dad didn’t lose his sense of humor throughout the whole ordeal. He referred to his nebulizer as his “peace
pipe,” and joked about getting a wig with dreadlocks for when his brothers came
to visit.
He really
freaked out the social worker on his hospice team when he asked how much it would
cost for him to be cremated. Given the
estimated expense, which if my memory serves me correctly was somewhere in the
$1000+ range, my dad suggested we just put him on a huge barbecue spit/grill
sort of thing outside of his place once he died and have the Eagles (one of his
favorite bands) playing in the background.
His hospice
nurse knew my dad’s twisted sense of humor after just a couple of her weekly
visits, but the poor social worker was stopping in to see him for the first
time. She was rather unprepared for such
a gruesome proposal. Alarmed and unsure
if she should take him seriously, she had to go back to the office and write a
very in-depth report.
My direct
experience with hospice care has thus far included each of Kevin’s parents, my
father, and maternal grandmother. These are some helpful things I’ve learned
along the way.
1. Ask
questions, express concerns, and feel whatever you’re feeling in front of these
health care professionals. This group of
people can handle whatever comes up and has probably been through at least some
of it before.
2. If
you as a hospice patient or the family member of someone in hospice care are
worried that you might no longer qualify for hospice services, talk with your
team about these concerns right away. Under
no circumstances should you start rationing your medicine for fear that you
will be kicked out of hospice care. This
includes breathing treatments as well as pain medication. It is too hard on the individual as a
patient, the hospice team as well as the family.
There
are many organizations and resources for help with medical costs, including
prescriptions. Part of what the hospice
team is helping to do is ensure your comfort and quality of life. Don’t undermine your health and doctor’s
orders by not following the prescribed regimen.
3. Is
it possible to be “kicked out” of hospice care? Yes, sort of. My maternal grandmother got well enough that
she was out of her room playing cards and visiting with people several times in
a row when the hospice nurses came to see her, so they figured she probably no
longer needed their services. My
grandma, mom, and the nursing staff at Little Sisters of the Poor all agreed on
this. (If you’re going to stop
qualifying for hospice care, this is a great way to get out of it in my
opinion.)
