When Relief Equates to Grief

It is a hard road to walk, and a harder hand to hold, when relief equates to grief.

After 11 months of being the constant primary caregiver, I was utterly exhausted.

The last two months or so were spent moving her body day and night. Even with the sheepskin, she had to be repositioned every two hours, so she did not get bedsores.

There was always a task, changing her, cleaning her, brushing her hair or teeth. Giving her atropine every two hours so she would not choke on her own mucus. Giving her morphine for the pain.

Spoon feeding her until she could no longer swallow and refused the food and water.

Even though I knew it was coming, the harsh reality set in when she refused the food and water. When she no longer wanted either, the end was getting near.

One by one I watched brain cancer slowly take every ability she ever had.

She became confused when she tried to think or to remember a word. She could not read anymore.

First her right arm stopped working, she became top-heavy, falling down, later her right leg stopped working.

For a moment early in that year, I thought this is what she must have been like as a toddler.

She was always independent; she prided herself on it. She hated having to rely on others for everything. She felt horrible about how I had to care for her.

I tried to reassure her, “turnabout is fair play mama, you wiped my ass now I will wipe yours.”

A bumper sticker for the commode, “shit happens.”

There was a beauty in it, though, in taking care of her. It was my honor.

A beauty in loving someone so much that I would happily sacrifice myself for her comfort. I would give up whatever I could just to give her a sliver of peace.

I was happy to be everything she needed, and I would not have had it any other way.

Being a caregiver is hard. Probably the hardest thing I have ever done.

It takes every ounce of you, every minute of your time. You are exhausted by the constant caring; there is not a second that you are not doing something.

I was one of the lucky caregivers though. People would come and help, her many siblings, her good friend Debbie.

People took shifts. They helped when I went to work (to keep my insurance) two days a week, the occasional weekend.

But at the end of the day, they leave.

They have an escape, they can rest.

The caregiver, the one that lives it and lives there, has no escape, no reprieve.

Caregiving does not stop at night. People have needs at night, they need medication, changing, to be repositioned, or company at the end of a chaotic day, hell, you might even have to put out a fire.

Being the primary caregiver is 24 hours a day. There is no 8-hour break for sleep.

You having a job or other responsibilities does not stop your night shift.

You always have to be aware, and you cannot show that stress. You become composed for your loved one; they are the one going through cancer, they are the one who knows their death is near.

Showing them love, patience, and kindness matters.

What is far less acknowledged is what the caregiver goes through, the loss of their identity, their freedom.

It is physically hard, mentally hard, and heartbreaking to witness.

It was absolutely devastating to watch my mom suffer and struggle.

Watch the most independent woman I have known lose every last ounce of that independence.

She hated it, hated being dependent on those around her.

All this time she is still alive.

You are caring for her, but the grieving begins the very moment you hear “palliative care,” “hospice,” “keeping her comfortable.”

When you are the caregiver, your relief equates to grief.

There is an end in sight, but it is not the end you want.

It is incomprehensible.

On one hand, you are beyond exhaustion, but you are also acutely aware that the end of that exhaustion means you lose someone you love.

Despite all the fight she had, despite everything I did, I could not save her.

The prognosis stayed the same.

I learned the truest meaning of the word hopeless.

I do not use that word so lightly anymore.