Getting Help with Caregiving

ALAN
So how long has it been since Evan came home from rehabilitation?

CULLEN
Gosh, let me think. He was in different hospitals and rehab facilities for a long, long time before he was able to come home, so let’s see… it’s been about three years ago?

ALAN
And he moved in with you and your family? Or does he live independently?

CULLEN
He lives with us.

ALAN
What was it like trying to find adequate help, organizing a homecare team, you know when Evan came home?

CULLEN
Finding people who wanted to help wasn’t that hard at first. Everyone – family, friends, neighbors, coworkers, people at church – they all felt so much compassion for Evan, and for me and Heidi taking on the responsibility as Evan’s caregivers. But when that initial enthusiasm wears off, you figure out who’s in it for the long haul. Who’s willing and able to commit real time. The other hard part was organizing everyone. It wasn’t enough to know who was willing to help – Heidi and I had to designate specific tasks and schedule specific times for everyone. It was almost like running a small business in that way – like personnel management.

ALAN
Did you have to ask for help, or did most people offer assistance without being asked? I know for some people it’s not easy to ask for that kind of help.

CULLEN
It was hard to ask for help outside of the family, for sure. You want to believe you can do it all yourself, or you don’t want to burden other people. But there were people who offered to help, and my wife, again, was really good at making sure I was accepting help when it was offered and asking for help when it wasn’t.

We also had some really good friends at our church who took the time to get the word out to the rest of the congregation. They made up flyers for us, took names and numbers of volunteers. They were great. The only downside of that was that we got some volunteers that we didn’t really know and didn’t really feel comfortable entrusting with Evan’s care. But we were able to find appropriate ways for them to assist, and some of them ended up becoming very good and trusted friends.

ALAN
Your church congregation sounds very supportive, and their willingness to help speaks highly of you and your family as well. What kind of tasks were they able to assume in Evan’s care?

CULLEN
Well, Evan’s care was not the only thing we needed help with. There were a lot of household things that Heidi and I just didn’t have time or energy for – things like cleaning the house, doing laundry, grocery shopping, yard work. We had a huge white board by the front door that we used to schedule each person and their designated task. It was quite the system.

Even then, even with all that help, there were still moments when I felt like I just had too much to do and not enough time or emotional energy to do it. So I had to develop my prioritizing skills. Learn what was urgent, what was not, and delegate what I could.

ALAN
Prioritizing and delegating are both super important. Did Evan have any home healthcare? An aide, a nurse, or maybe a therapist who came into your home to provide care?

CULLEN
Yes. At the beginning, we had a physical therapist, an occupational therapist, and nurses in the house quite often. It was great and convenient to not have to take Evan to multiple appointments for his care, but sometimes I just got so tired of having different people in my house all the time. So a couple times, we used what’s called respite care. We actually arranged for Evan to stay in a residential facility for a couple weeks at a time. We did that two or three times that first year. It was just nice to have a little break from the chaos of having therapists and nurses and volunteers coming in and out of the house every day.

ALAN
It’s good you were able to use that service and enjoy a break from caregiving. It was probably helpful for Evan, too, to have a change of scenery and routine. Did you ever consider more permanent residential care for Evan?

CULLEN
There was a point in those first six months where we thought about it. And that’s when we first used the respite care, almost like a trial to see if residential care was the best option for Evan and for our family. It turned out we just needed a break to recharge.

ALAN
That’s great that you were able to discern that. Thank you again for sharing your insights and your experience with us.

CULLEN
Absolutely.