It’s been a year since I brought Gus home to live with me and to take care of him until he took his last breath.
On Saturday I went into his room and did my usual brief pause, patted the bed, and slowly walked out, shutting the door. Exhaling, I wondered when I would not feel this way anymore. It is my custom a few times a week to briefly go in and stare at the spot where he lay as we had hundreds of hours of talks, listened to music together, and said everything we could squeeze in with the window of time that God allowed us to have. I can’t help but flash back to certain moments, imagining the sound of his voice, him calling my name, asking for hot cheese, black toast, cherries, or his favorite thing — my company.
His room is not wholly untouched as many people seem to keep their loved ones’ rooms after they pass away. A few days after he passed, I gathered up everything in the room that could help others…the things like wound care pillows. I had spared no expense in keeping him comfortable and happy. It seemed silly and borderlining on sinful to let these items sit there when they could help others who so desperately needed them and may not be able to afford them. At the same time, all the keepsakes are still exactly in their place. It’s like they call out to me from their familiar place to remember the moments. As if I could forget.
I’ll never forget.
A quilt made with all his t-shirts adorns the bed. The 300-plus birthday cards and the books we use to read together are in the same spot, and someday I will touch them, but today is not that day.
On some days it feels almost as if I’m getting “back to myself,” whatever that is…and other days still feel off-kilter. I was recently doing an exercise dance video. I love to dance and would never be qualified to do it professionally like Gus, but for fun, it’s unparalleled. Even though I was dancing, I wasn’t thinking of Gus at the moment. At the close of the last dance, the instructor said, “Stretch! Reach up! Release everything and let it go!” I did so, reaching for the ceiling and simultaneously burst out crying. I didn’t even realize my tears under the surface had reached the tippy top and were brimming over as the instructor called out to release what was inside and let it go.
Maybe this is because some days I am still too busy (or at least I think I am) to stop and grieve.
I learned a plethora of things by bringing Gus home to live with me and care for him. I would venture to say hundreds of things. But on this, the one-year anniversary of bringing him to Tampa, I want to share three of them.
I learned what a huge, unrecognized, and misunderstood group of people caregivers are.
Prior to bringing Gus home, I had never done caregiving for an adult. Some misinformed and misguided folks say, “It’s just like caring for a baby.” Ummmm no, it’s not. Someone said that to me in my overwhelm of learning to take care of Gus and I just wanted to punch them in the face. I was so tired. Please, no judging. Changing a brief on a full-grown adult is a completely different experience than a child. I could probably do it for a kid with one hand tied behind my back, but for an adult, when I first started out, I felt like I needed to call 911 and report an emergency, asking for help. I went from feeling as if I had thrown myself into the deep end of the pool without knowing how to swim, to being extremely confident in my ability to give care. I not only learned how to change a brief like a boss, but I quickly discovered how to change an entire bed with a loved one still in it! It is still mind-boggling to me that this is even a thing!
When I began caring for Gus, I met hundreds of people in the world of caregiving. I was suddenly exposed to a massive group of people in society who do this very hard thing, day in and day out, 24/7. It was more than eye-opening. It was devastating! I quickly realized how much I did not understand before, and how much compassion I had failed to give those who desperately needed it.
My thoughts wandered back to times certain people said they couldn’t come to a church or ministry event because of caring for a loved one, and I would wonder why in the world they couldn’t just make arrangements and come. How hard could it be? Were they just making excuses because they didn’t feel like coming? Not until it would cost $300 in caregiving for me just to go to someone’s birthday party did I realize just one of the reasons why caregivers didn’t come to things. Who has hundreds of dollars to spend just to go to church or a women’s event that lasts a few hours?
More than once I cried tears of repentance for what I had previously failed to not only understand but have mercy on. I also realized how frustrating it was for those same people I had formerly judged to make all the preparations to have coverage for care, get their loved one settled and themselves ready for the event, and then not have a caregiver show up. Multiple times, I sat in one of my best outfits, all dressed up with nowhere to go after a caregiver was a no show. There I would sit in disbelief. and disappointment. After not only getting Gus physically ready but lining up all of his medication, meals and bath essentials, and then getting myself dressed and ready, it would became apparent that the scheduled caregiver was not coming. I would have to call whoever my host was for the evening and cancel at the very last minute. I did so realizing that nine times out of ten, they had NO IDEA what it was to be me in that moment. Just like I hadn’t known in the past what it was like to be those who canceled on me.
There is nothing like sitting on the couch in your favorite outfit, high heels, bling, and freshly flat ironed hair, crying while eating a PB and J and watching Forensic Files, realizing nobody is coming for you.
I learned that experiences like caregiving can shift your relationships.
There were people close to me who I anticipated would fully support me in my journey with Gus and they did not. Other people I barely knew or had no relationship with at all showed up big time. I gained a lot of precious new friendships through the journey with Gus.
Some of my relationships were realigned after Gus died. After I began taking care of him and I experienced some surprises with people I did not anticipate, I knew that once he died, I would have to go through a forgiveness process. It was not him I would have to forgive for anything. I needed to forgive people who disappointed me in the midst of one of the hardest yet most blessed times of my life. I didn’t have a lot of time to dedicate to my feelings or a forgiveness process when I was still taking care of Gus. I was so busy during that period of time, all I had time to focus on was work and caregiving. I had a therapy appointment once a week, but you can’t process something that huge in an hour a week.
Now that Gus has passed, my relationships are not the same. I think to myself, “If they weren’t there in this, the most pivotal time in my life…do I really want them there now? What’s the point?” For some who are family or those I have to see all the time, it was and is more complicated. Some people, while forgiven, are on the periphery of my life now. While I know I must forgive, I have discovered that I am not comfortable with the same level of relationship we had before. While forgiveness is a must for a true believer, access to one’s life is not.
One day I was talking to Chaplain Steve (from Hospice) about this and he said, “Nothing will ever be the same after this, Deanna. Nothing.” He was right.
I learned that abiding in God is more important than ever.
Caregiving stretched and grew me more than ever. I was desperate for my time with the Lord. Most cherished to me were times in the early morning with a cup of coffee and my Bible.
John 15:4-5 says,
“Abide in Me, and I in you. As the branch cannot bear fruit of itself unless it abides in the vine, so neither can you unless you abide in Me. I am the vine, you are the branches; he who abides in Me and I in him, he bears much fruit, for apart from Me you can do nothing.“
The time I had with Gus taught me innumerable lessons.
The relentlessly searching and finding him.
The tenaciously fighting to bring him home with me.
The caring for him night and day once he got here.
Apart from Jesus, not a speck of it would be possible.