Reflections on being a caregiver for your parents, just as you have become a parent yourself
By Gretchen Dimina, via Well Beings Share Your Caregiving Story
It begins right after you’ve had your second child, a baby boy.
And your young mom, who was very much alive yesterday, suddenly is dying.
Stage 4 lung cancer, in a non-smoker. Blindsided.
The ground beneath you disappears, but you spring into action because you know you have to help her fight.
Amidst the flurry of doctors appointments you spend hours in the kitchen making a complex bone broth recipe.
They say cancer patients need extra nutrients and this may help.
You will do anything to help.
In just a couple months she becomes a ghost. Skin and bones, frail and not the vibrant person she was just a season ago.
She is so weak you have to lift her onto a portable toilet in the living room.
Then each day you return to your own home exhausted and change your baby’s diapers.
You take breaks at the playground with your kids and search for other moms who understand what you are dealing with. But there aren’t any.
Her doctors look at you with pity any time you take her to see them.
Not much time passes and suddenly the two of you are sitting on a bench by the Potomac River eating her favorite sandwich. In silence, because you both know the end is near and what really can you say.
And then, she is gone.
Round 2 caregiving begins immediately after this when your father is fighting his own cancer battle.
It won’t kill you, the doctors tell him. And for a long time it doesn’t.
Yet you hold your breath at every scan, waiting on every blood test. Month after month after month.
You fight like hell to get him a covid vaccine as soon as they become available, knowing his weakened immune system can’t fight that virus.
You succeed, and you think you have saved him.
Until something goes suddenly and inexplicably wrong.
His cancer has spread rapidly and you’re plunged into a nightmarish new round of caregiving.
Appointments, tests, surgeries, confusion, all swirling around you while you are still expected to be a parent and an employee, a wife and a friend.
You buy him groceries but he never wants to eat. You worry.
You research how to build a ramp to make his home wheelchair accessible because he can’t walk now. $13,000!
He lands in a skilled nursing facility to rehabilitate after a hospital stay. To prepare for chemo.
Here your caregiving role kicks into its highest gear yet.
Something is not right. No one cares here.
You fight every single day with staff. For medicines – for food – for diaper changes. For anyone to come see how he is doing (not well).
All this fighting, while also writing large checks for these people who are paid to help you.
You finally give up on them and bring an air mattress and white noise machine to his room so that you can stay overnight and take care of him.
He talks deliriously about seeing snakes on the walls. Can you see them too, he asks?
Despite what doctors say, you know he is dying.
No one has trained you for this kind of thing.
You lose your job because the ambitious small business owner you work for cannot find enough compassion to give you a few weeks off to care for your father.
You go to your son’s baseball game, your daughter’s poetry reading. But your mind is not there, just your body.
Then one night you are so exhausted you sleep at home.
When you return to the facility early the next morning he is gone. His body is there in the bed but there is no breath.
And no one has called you to tell you.
You are shocked to find yourself an adult orphan at age 48.
You wonder if you were a good enough caregiver. Could you have saved them?
It haunts you and no one your age can relate. Their parents are still here, alive & well.
You think your journey with caregiving is over.
But then you decide you can’t unsee what you have seen. And you train to become a volunteer ombudsman for long term care facilities.
You spend your days checking on residents, making sure they are ok. Helping their caregivers when they have issues similar to yours and when they feel lost and overwhelmed.
Often you think you are having no impact – why am I doing this?
Then other days you see the look in their eyes. Their eyes are saying thank god. Thank god you are here, because we need help.