Caregiver

I have never given much thought to what it takes to be a caregiver. My mother and her three sisters have been providing around-the-clock care for my Gram for a little over two solid months. At first, it seemed like it wasn't too bad- making her meals, keeping her house clean, making sure she takes her medications. But Gram is quickly deteriorating. None of her "nurses" are professionals, yet they never considered full time help. The hospice workers have been helpful, but they are part-time at best.

When I visited over the Christmas holiday, I did a two day shift of "caregiving". With big three hour breaks in the middle of the day so I could attend conference calls for work. So it wasn't even a full two days.

It was exhausting.

I am twenty years younger than her other nurses. But I felt drained, sad, lethargic at the end of my "shift". It's not the physical work- it's the worry. The responsibility. During my shift, my Gram was experiencing hallucinations which were very scary to her. At night, I did not sleep a wink as I kept the baby monitor up against my ear, listening for her breathing.

She was instructed to not attempt to get from point A to point B without the use of her walker and one of us walking with her. This was because some of the meds were causing dizziness and she had recently fallen (twice) and dislocated her finger resulting in a midnight run to the emergency room.

However, in spite of her physical deterioration, there is still a kernel of her stubbornness and sense of independence left. Twice I caught her walking to the bathroom in the middle of the night without calling me, once without her walker.

"Why didn't you call me?"

"I didn't want to wake you."

"Gram, it's OK, that's why I'm here...I'm already awake. I don't want you to fall again."

"I'm sorry I disappointed you." She says in a faint voice as I tuck her back into bed.

Ouch. Talk about a knife in the gut. "Oh...you're not disappointing me. I just want to be sure you're OK."

The next day in the middle of the afternoon I walk into the living room to find her standing at the opposite side of the room without her walker- attempting to close the window blinds. I begin to walk towards her and as she heads back towards her chair, she falls.

I try to help her up, and find it's very difficult, in spite of the fact that she now weighs less than 100 pounds. "Let me get myself up" she pleads.

"Don't tell your mother" she asks.

Of course I tell my mother. All of the "caregivers" keep a diary so we know what's happening during the changing of the guards. Meal times, meds taken, sleep patterns, etc.

I was deeply relieved when my two days was over.

Now, her caregivers are having a much tougher time. Gram can't shower or bath herself. She doesn't always make it to the bathroom in time. She's much weaker. You can't understand what she's saying.

She is absolutely hating this loss of independence. Of dignity. I can tell it's actually pissing her off a bit.

On top of the grief involved, this experience has me thinking about the future. I'm not sure I have it in me to care for my own parents to such a degree if/when the time comes. And I don't have three sisters to share the burden (oddly, in my family at least, it's only the women who are helping out.) I can't imagine bathing my mother, let alone cleaning up after her if she has bathroom accidents. And who will take care of me when it's my turn? Even if I manage to set myself up financially in such a way that I can go to a home, I'm told that unless a person has a strong advocate, that person often does not get the best care.

Why is it that at the end of a good life...when it seems you have truly "earned" the right for grace and dignity...does your exit have to be so humiliating and painful?