Poem – Guilt and expected death

There’s a guilty feeling the caregiver has
when their loved one dies.
Be it spouse, parent, child,
you’ve taken care of them
for a long time
and they have finally
passed on.

Nobody talks about this.
They talk about how hard it is
to take care of
someone you love
for a long time,
someone who is terminally ill.
Someone who isn’t going
to get better,
and the only cure
is the grave.

Your life is finally back
to being yours.
Your time is yours.

You should feel bad if you
didn’t
give your time
to help them
– but you did, and now it is over.

There shouldn’t be guilt
about surviving,
guilt about feeling relieved
that it is over,
guilt about being glad
your duty is done.
But there is.

You are glad for them
that they are no longer suffering,
but also glad for yourself
that you can do
what you want to do
again.

You aren’t so crass as to say
you’re glad
they are dead,
but you are.

It is a weird feeling,
made weirder
by the mixture of grief,
the exhaustion of being
an unpaid,
untrained nurse,
there 24/7.

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What hospice is and isn’t

I like the idea of hospice. They are trained for care, not cure. They help a person die a natural death, rather than unnecessarily prolonging life. They don’t do assisted suicide, but they don’t do feeding tubes and ventilators either.

But I don’t like it in a way. I don’t like that there has to be a division between them and the rest of the medical profession.

I have a friend who trained to be a nurse. She learned nothing about what the dying process is – what the signs are, what is normal, what to do. She’s asking me what the signs are, what happens.

There is also a misunderstanding about what hospice does. When my Mom was dying, I assumed that the very infrequent visits from the hospice team were because we were on Tenncare. I was used to us getting the short end of the stick, the last of the loaf. I was used to having to sit in clinics for hours for treatment for everything. So seeing a nurse for about thirty minutes every day seemed par for the course. Having a “bank” of time for a sitter seemed normal too. There was a total of 20 hours I could use, so I had to be careful how I budgeted it.

Turns out that is the way it goes. From reading up more, and from the stories from my mother-in-law having hospice care, we weren’t unusual.

When you call hospice, they are there to help, but the family members are the primary caregivers. They are drafted into service, shanghaied even. They do most of it. The nurses come by to change medicine if necessary. The rest of everything? That is on you.

They don’t sit with the patient 24 hours a day until they die. They don’t check them into a specialized hospital and care for them. It is on the family to do the heavy lifting, literally and metaphorically.

They might provide a handbook that helps. If you are lucky, all the pages are there. Sometimes they aren’t. Fortunately, these days, you can look up “Signs of death” online and get a lot of helpful advice.

Ideally, all nurses and doctors would understand that death isn’t something to be feared. It is a natural part of life. It is only scary if it is unknown – like everything else. Fear comes from ignorance – learn as much as you can and you’ll not be afraid.