Wednesday, August 31, 2005

Dealing with it, Part 2: The Big Empty

There must be a word for it. There's Caregiver's Burnout, Empty Nest Syndrome, Survivor's Guilt. What is the term for the feeling that you experience when the person you've been caring for, been scheduling your life around, been putting off everything else for, is suddenly gone?
It's not the first time I've felt it. My grandmother first entered a nursing home in early 1996. For the next two years my mother and I took shifts spending time with her - my mom went there after work every day, and I was there nearly every day after work from about 6:30 to about 9:00. A handful of other relatives spent some time there, and my late uncle spent a few hours each week with her. When she died in December 1998 there was suddenly a huge opening in my schedule. I could do my own thing now, live for myself. I didn't.
Little things set me off. We kept my grandmother's room well-stocked with incidentals, and kept it decorated for the seasons. In the first weeks of December, just before she died, I had started to transform her room's decorations from Autumn and Thanksgiving to Christmas. I strung up some garland, hung up some pictures, and realized she was running out of masking tape to hang up the rest of the Christmas decorations. I made a mental note to get a new roll for her room.
Masking tape.
I wept for months afterwards every time I saw a roll of tape and thought "Babki needs masking tape. I should take that to her."
Her roommate cried when I took down the Christmas decorations. Not because the room would be undecorated - her family took good care of her. No, because when the decorations were gone, it would mean that my grandmother was truly gone.
I had a lot of free time that Christmas, and in the years that followed. Empty spaces in my life that she used to occupy.
I warned a friend about it when his mother died of cancer three years ago: the hardest part will be dealing with all the free time you'll suddenly have. I warned my cousin about it when her father died of cancer three months ago. I felt it again when Haley died. I tried to fill the space, to keep up the morning walks, walking alone. I couldn't. I kept it up until I had seen everyone that we routinely ran into on our walks and told them that Haley had died. And then I stopped. I sleep later these days.
I tried to tell a friend of mine at work about it. Her mother died in the beginning of August. I think I was discussing with another friend how I could bring up that topic a few hours before my father died.
I would sometimes go on "dates" with my father, to get him out of the house on the weekend and give my mother a few hours of peace. I would take him to the barber's with me when I got a haircut, and he would get a haircut too. Afterwards I would take him on a country ramble, and then we would stop at a store and then get something for lunch. I took him out to see Revenge of the Sith on June 5th. It seemed right. He had taken me to see Star Wars 28 years earlier.
On those occasions when my mom was able to get him into the VA - the Veteran's Hospital - for "respite" care (which is defined as a respite for the caregiver, not necessarily the veteran) I would visit him every day, sometimes just for a few minutes, sometimes for much longer. When he was in the hospital in late July - or was it early August? - because of his mini-seizures, I sometimes spent hours just sitting with him.
I didn't spend much time with my father when he was in the nursing home. Maybe less than I should have, but as much as I could stand. Usually 15 minutes at a time, sometime between 6:00 and 8:00. Sometimes he was fast asleep. Sometimes he didn't know who I was. Sometimes he would call me by his brother's name. Sometimes he would ask me to help him get out of his chair. Once I took one of our cats down to him, his favorite of the four. He seemed to recognize the cat at first, but then began to ignore him and finally became annoyed with his presence. I think it was maybe the same with me. Maybe 15 minutes was all he could stand, too.
I spent more time with him after the accident. From 6:00 to 10:00 or so Friday night, the night of the accident. A few hours in the early afternoon and a few hours in the early evening the next day. A couple of hours on Sunday. From about 6:30 to 8:30 on Monday. From 6:30 to 8:00 on Tuesday.
He died on Wednesday.
Done, now. Free time in the evenings. Went grocery shopping yesterday. Went to Target and Barnes & Noble today.
Empty spaces. The Big Empty. Masking tape. Free time.
Thanks for listening.


rimalicious said...

very touching and true, thanks for sharing

Katie said...

Harold, I am glad to see you are getting your emotions down on paper here. You have been holding up so well at work that I was afraid you were "squashing" your feelings.
You need to greive in whatever way works for you.
This blog was beautiful, touching.
I am going to forward it to our pshycologist friend...she will love it.