Reflections on Caregiving

On a recent trip to North Carolina to care for my dad before and after surgery, I got a glimpse of what full-time caregivers go through every day. It’s an understatement to say that caregiving takes a lot of emotional and physical energy.

I arrived in Canton on Monday, April 11, having decided after talking with my stepsister, to accompany Daddy to his appointment with the urologist on Tuesday. Supposedly it would be a decision-making meeting, but the doctor had already decided what procedure he would perform on my dad: a button TURP (transurethral resection of the prostate) to remedy his BPH (enlarged prostate). Daddy sat quietly (perhaps cowed) during the discussion; I asked a few questions, having done my homework–I read up on the procedure and other prostate procedures on the Mayo Clinic and Cornell University websites.

The urologist mentioned that he hoped the button TURP would correct my dad’s problem, but that it might not–part of the problem might be his bladder not emptying properly. He said Daddy’s bladder walls were thickened, and the bladder wasn’t as elastic as it used to be, so urine could pool in his bladder. At that point I decided we’d heard enough; we needed to focus on getting through this surgery instead of talking about what-ifs down the road. So Daddy signed the consent forms for his surgery, and we were off to the drugstore to get an antibiotic for him to take before surgery (the doctor said he already had a urinary tract infection from wearing a catheter for two weeks).

We went to the drugstore and grocery store, and by the time we got home, Daddy was pretty tired. His arthritis affects his legs, and he can’t stand for long periods of time without hurting. I started cooking, my cure-all for stressful times. I particularly enjoy cooking for Daddy, because he’s such an appreciative audience. When I tell my husband, John, what I’ve cooked for dinner on my trips to NC, he says, “Boy, he’s eating like a king!” rather jokingly, as I do cook some of the same dishes at home when I have time.

On Wednesday we went to the hospital for Daddy’s preop bloodwork and EKG. It was a challenge to get there by 9:30 (old, arthritic bones move slowly in the morning, but we made it on time and were done by 10:00. Amazing.

Then came Thursday, the day of Daddy’s surgery. That morning he wanted to talk about where important papers were and what he wanted at his funeral. We’d sort of talked about his funeral before back when he had a quadruple bypass at age 80, but we hadn’t talked in quite as much detail. I kind of gulped a bit, thinking about the real possibility of Daddy dying.

As they wheeled him out of the hospital room toward surgery, I said, “I’ll be waiting here for you when you get back from surgery.” I wanted to hug and kiss him and tell him I loved him, but I didn’t want him to think I was entertaining the thought that he might not make it. (Besides, I tell him I love him all the time. I just squeezed his hand.)

After what seemed like forever (the surgery was scheduled for 2:45, and Daddy was brought back to the room around 4:45), the nurse and assistants wheeled him in his bed back to the hospital room. Daddy was looking around trying to make sense of it all. He didn’t say anything for a bit, and then finally he said, “I didn’t get to see the doctor. Did I really have surgery? I remember everything they said while I was waiting.”  Before long, he asked when he would get to eat (a very good sign). And he ate every bit of the meal that was brought a few minutes later.

On Friday we went home from the hospital. Daddy had not walked in the hospital except to go from his bed to the bathroom with the nurse’s help. I began to get a little panicky at the thought of getting him inside his house, which has steps leading up to the kitchen. We got out “Mr. Walker,” who became my dad’s best friend for the next several days. Daddy got  inside the house okay; I walked behind him to be sure he didn’t lose his balance and topple backward as he climbed the steps. We got him settled in his chair in the living room, and then it was time for medications. I started a list of meds and times given; it wasn’t quite as hard as after his bypass surgery, when he had more medications to keep up with. Soon after that, I went to lie down for a nap. I was exhausted after the stress of the day of surgery, then rushing to the hospital on Friday to meet with the doctor while he was on rounds (thankfully not until 8:30). I think I slept for about an hour and a half. Daddy also rested during this time.

Well, I stayed with him until Monday, and by Monday, when I felt a flash of irritation over my dad’s particularness about having things put in a certain place, I realized it was time for me to go home. (And I was very glad I’d made a point of giving myself a fun break on Wednesday, Saturday, and Sunday while I was there. One day I had “retail therapy” at my favorite store, Mast General Store in Waynesville; on Saturday I drove to a shoe outlet…had no luck but found a free wine tasting and an art gallery, so I enjoyed that; on Sunday I drove into Asheville, went to a concert by street musicians in Asheville Park, and walked around downtown a bit. I spent a grand total of $3.50 on coffee that day.)

As I drove home to Nashville, I reflected on the week of caregiving and how I’d cooked and washed dishes more than ever before…and how I’d learned to change from a leg catheter to a Foley (regular hospital size) catheter…and how tired I suddenly was. Then I realized that so many people taking care of loved ones  don’t get a break, and some care tirelessly (or not) for people who aren’t so vocal in their thanks as my dad was.

Daddy had actually said to me at one point, “Oh, I don’t deserve to be taken care of like this.” I replied, “Yes, Daddy, you deserve every bit of care that you get, because you’ve taken such good care of Mommy and Helen.” My dad has been in the challenging position of being caregiver to two spouses.

I feel grateful that I had the privilege of helping my dad. I also am grateful that my stepsister Juanita, who lives next door to my dad, checks on him every day and, along with her brother, has taken him to countless doctor visits and taken care of many little emergencies that have arisen with him over the years.

It’s really hard living 5 1/2 hours away from Daddy. I’m the only child in our family, and I wish he were here. Maybe someday he’ll get to move to Nashville. Right now Helen is in a nursing home; she turned 93 the day Daddy came home from the hospital. True to his usual habit of remembering birthdays, he’d arranged for a cake to be served in her honor at the nursing home.

So I’ve rambled long enough…I’m just very grateful that Daddy dodged the bullet this time. I think he still has a few more years left in him. As the nurse who took him to surgery remarked, “He’s a World War II veteran.” “They” just don’t make tough people like that anymore.

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