The difficult side of caregiving: Finishing the hard, sad way

(Video shot by my sister-in-law Darlene and posted on Facebook. Dad received a military funeral at Riverside National Cemetery.)


Nut graf: When a caregiver’s job ends, it’s always because of something sad. Especially when your care recipient dies. It’s even worse when it’s a family member.


Dad went from skilled nursing straight into hospice care, then lasted another five days. He passed away March 2 at 89 years of age.

The last couple of days I sat with him in his room, monitoring his breathing, trying to make sense out of what he was saying, trying to keep him comfortable. Some days I’d sit on a stool next to the bed, my laptop close by, munching on cheese while talking to him a mile a minute. Our last lucid conversation was when I followed a nearby plane crash on Twitter. It hit some houses a mile away from where we lived, and he seemed almost with it.

But that was an anomaly, and I knew that. For the caregiver, everyone shifts from fighting to letting go. I pureed his food in a processor (gross) and thickened his beverages in a martini shaker to minimize choking. When he could no longer handle that, decisions had to be made. Family wishes made that pretty plain – no feeding tubes, no extraordinary means of keeping him alive.

Which meant time to let go.

On March 1, he slipped into a coma. I continued talking to him. I don’t know if a person in a coma really hears you, but I was playing it like he does. Dad stayed comatose for about 20 hours, then died at 5 p.m. I had my cousins at the house, and he slipped away while we chatted for a few minutes in another room.


For the family caregiver, the work does not stop there. It shifts into another gear. Getting hold of hospice. A call to my older brother. Phone calls and emails to notify friends. Texts with my support team in South Carolina. A call to the caregiving agency I’d just hired to help out, telling them to forget tomorrow’s appointment. Cussing out a phone solicitor who had the gall to call the house minutes after Dad died. Funeral arrangements. Putting together a tribute at the next caregivers/care recipients party at the local senior center. Dealing with lawyers and estate things.

As I write this, I’m packing to go home to South Carolina. We’ve hooked on with a Realtor, and hopefully it won’t take long to find a buyer for the house. I still have not had time to process all this or deal with the grief that’s sure to come. Busy-ness is a great deflector. I think the closest I’ve come to that was when I called the classical radio station to cancel Dad’s sustaining membership. Told them why, and thanked them for helping to keep him so happy. And dropping off some unused season tickets to the community theater so a drama student can use them. Oh yeah, and rattling around in this big house by myself gets to a guy after a while.


The caregiving experience will always be a part of me.
You’d think it’s a whole lot different for a hired caregiver, but it’s still really tough. A former girlfriend worked as a nursing home CNA, and she tended to get attached to her patients. When one died, another piece of her would also die. Finally she got to where she couldn’t work any more. She ended up driving a taxi.

What to do after caregiving? It’s really up in the air. I’ll be home in South Carolina next month, but the past three years will always be a part of me. It’s very possible more caregiving will be in my future. For sure I will continue this blog, though it won’t have the up-to-the-minute journal entries. But I learned a lot from this experience, and I’ll be glad to talk about it.