The Caregiving Creep

Six years ago my girls were in their second year of college and had, for the most part, moved out of the house. At least one of them came home on the weekends (or for a day here or there) and Richard and I still had our son living at home but he split his time between our house and his mom’s.  It was a slow introduction into our Empty Nest.

Which was fine by me since I loved a household full of kids and their friends with their delightful laughter and energy and love of life.

I wasn’t a fan of the messes but at least two of the three cleaned up after themselves (yes, Christopher, I’m talking to you).

It was also a time I decided to make more of an effort to keep in contact with Robert. He lived with a companion in a city 90 minutes away but I was not very regular with my phone calls or visits. Our dad (who lived in the same town as Robert) would bring Robert and his companion, Judy, to visit for birthday parties or holidays.

I was better at keeping in touch with Other Brother. He and his wife were raising two kids but we kept in touch on a much more regular basis.  It probably had a lot to do with how easy it was to communicate with Other Brother.

Robert didn’t use a computer or a cell phone so a quick email or text was out of the question. Whenever I called him, his television was on so loud he asked me to repeat everything I said. Judy (who also has epilepsy and cognitive impairment) was in the background yelling for Robert to tell me one thing or another.

After the initial greetings and catching up (which took all of five to ten minutes), Robert fell silent and I could tell I was competing with the television for his attention.  Sometimes it was because he had a seizure but most of the time he wanted to watch his shows.

That’s okay. I felt good that I had called.  “Call Robert.”  I could check that off of my list for the week.

When Christopher had a football game in Robert’s town, I thought it was a perfect opportunity to visit with Robert and involve him in his nephew’s activities. I invited Robert and Judy to the football game, arranged a time to pick them up and was excited about multi-tasking: I could see Robert and Christopher’s football game all in one swoop.

Richard and I arrived at Robert and Judy’s house and Judy answered the door with her shirt covered in what I thought was blood.  I immediately assumed one of them had cut themselves during a seizure and there was an enormous amount of blood.  Judy is standing in front of me and doesn’t seem to be woozy from a loss of blood but Robert is nowhere to be seen.

“Is Robert okay?”

“ROBERT  - YOUR SISTER IS HERE!”

Robert comes around the corner with a huge grin and is ready to go. He gives Judy a kiss goodbye and walks out the door.

Um . . . what about all the blood??!!

I look behind Robert and ask Judy if she’s okay and awkwardly ask what happened to her shirt.

“Oh, I was making spaghetti and the sauce spilled on my shirt.” 

Ahhhh.  Well, that’s a relief.  Although, given the track record of these two, I’m not convinced she didn’t spill the sauce on her while it was still hot.  She looks and sounds fine, though, so I ask her if she’s coming with us but she decides to stay home.

While walking to the stadium from the parking lot, I notice Robert has his arm wrapped in a bandage and is pretty wobbly.  I hold on to his arm to help steady him and assume it’s because the parking lot is gravel.

Once we get to the stands, Richard spots an empty space on the bench on the 50 yard line and a few rows back.  Perfect seats.

I follow Richard up the stairs to sit with Robert following behind me and I turn around to see Robert struggling to walk up the stairs (there are no guardrails to hang on to) and then fall forward before I could catch him. Oh goodness!  What is going on with him?

Richard sees what’s going on and we move down a few rows so Robert doesn’t have to maneuver the stairs.  The football game commenced and we screamed and yelled (and may have rang a cowbell or two) and watched Christopher’s team be demolished by boys twice as big as Christopher.  I didn’t realize they were playing a professional football team! (It looked like it anyway).   

That’s okay, we all had a great time.

Robert was just as wobbly going back to the car and I asked about the bandage on his arm. He gave a vague explanation about it being hurt and I didn’t ask any more questions about it.

A couple of months after that football game, my concern for Robert was ramping up. He arrived for Thanksgiving dinner with a black eye.  Other Brother and I took care of that situation and I called County Services to see if Robert qualified for in-home help. (When they showed up, Judy and Robert told them they didn’t need help.) 

By December, Robert had developed a life-threatening infection and I was taking him to doctor’s appointments and he ended up in the hospital then back home again by New Year’s Eve.

Richard and I treated ourselves to dinner and a nice hotel on New Year’s Eve but called Robert to see how he was feeling. He said he was doing great.  I relaxed a bit.

By January, we were going to doctor appointments again about his recurring infection and I was in contact with his UCSF neurologist. “Gosh, I wish we had known about you before now,” they told me. “Robert has been missing doctor appointments here and there for about six months and we’re concerned about him.”

The time to step in and be a caregiver is never crystal clear.  I struggled with guilt over stepping in too late for a long time but now think I stepped in just when I needed to.

Robert had emergency surgery in January to stop an infection that was spreading to his brain. He needed several weeks of antibiotics and his doctor didn’t recommend he return home to independent living. 

There was a Skilled Nursing Facility stay after that, then assisted living and then a Board and Care home.

When I took Robert to that football game, I never imagined Robert would be living with us eventually.  We have a two story home, no bedroom on the first floor and do not have a full bathroom on the first floor either. Richard has his own chronic pain issues. I have a full-time job and we have a houseful of dogs, cats and turtles to care for. 

I never imagined having caregiving supplies or equipment in my house. Now we have a walker, a wheelchair, a transport chair, an oxygen tank and a cabinet full of briefs and bed pads.

I never imagined being able to do some of things I am doing. Now I can converse intelligently with the doctors about blood pressure, pulse and oxygen rate and seizures and cognition. I clean up things I never thought I could without being squeamish. I report on the color and consistency of bodily fluids with the matter-of-fact tone of voice usually only heard in nurses (or caregivers).

Caregiving sometimes is immediate (as with a tragic accident happening to a loved one) and sometimes it creeps up on you.

Robert is back in a Skilled Nursing Facility for now regaining some ability to walk.  I have to admit I don’t know how much longer he will be able to live with us, given his decline and the increased physical demands, but caregiving will always be a part of who I am and what I do for Robert. 

And it’s something that wasn’t even on my checklist.