A Caregiver's First Retreat

I had been burned out for some time. The stress and pressure of seeing to Romeo's needs, of advocating for him in the nursing home, as well as the sheer amount of time I had spent there each day (four to six hours a day -- sometimes less, often more), and the stress caused by receiving, deflecting, and sometimes ignoring well-intended suggestions from others about Romeo's care had taken its toll. I was drained.

What to do? Time for a little vacation, a break, a personal retreat. I had never traveled without Romeo since he was diagnosed with dementia, except for business -- and that was work. Every trip Romeo and I took was stressful for me. The last trip we took in October 2009, I had decided, was the last trip I could take with him. It was simply too much to look after him every step of the way. He needed help with everything -- from getting his breakfast to getting the water temperature right for his shower, to getting in and out of the shower, to finding whichever room he wanted to go to, and on and on and on. By the time we got home, I was exhausted and needed a vacation from the vacation.

I decided to book a room in Taos, New Mexico, for the first four weekday nights I could find. I've been to Taos many times before. The energy of the plaza, the pueblo, the museums, restaurants, art galleries -- all of it feels like home to me.

I booked a casita -- a 550 square foot room with a kitchen and laundry area, living area, bedroom, and bathroom. And a private covered patio overlooking the garden and yard. The perfect place to rest, relax, rejuvenate.

Ahhh, what to do now that I'm here? What my heart tells me, of course. I read, I wrote, meditated, played my drum, and I was silent. I had questions and I sensed my soul had insights for me. Now here, finally, was the solitude and quiet I needed to hear everything. And it came. The answers and the insights came, as they always do.

"You're spending too much time with Romeo at the nursing home."

Yes, I see that now.

"Take care of yourself better. Cut back on the number of hours you visit Romeo. If you're not with him so much, you can make your own meals at home instead of grabbing whatever you can on the run. It will also be good for him. If you're not there all the time, he'll get out of his room more and participate in the planned activities at the nursing home.

"Have massages periodically. Go out and have fun more often. Get back to playing your drum every day. Keep writing. Get back to your art. Take walks more often. Sit more often. And take trips like this every few months, mini retreats. Live your own life. You don't need care 24/7. You don't live in a nursing home. Romeo does.

"You can still visit Romeo, but cut the hours way back. He'll be fine. He will be fine. He will be fine. He has to deal with this too, and he needs the space to do it."

And I knew everything I heard was right.

Now that I've been back for two weeks and implemented those changes, I see how much stress I had been under. It crept up on me. I didn't see it, didn't realize how it had built. I was under so much stress that I didn't recognize the symptoms as they showed themselves. A lesson learned in a most difficult way, but learned nonetheless.

The Aftermath of the Retreat, or How Dementia Can Really Mess Things Up

There was something horribly wrong surrounding Romeo. I sensed it just before I entered his room at the nursing home, in the hall before I ever saw him. All that day, I had been at a retreat in the mountains above Boulder and hadn't been able to come to see him until well after his dinner time.

To help Romeo remember that I wouldn't be able to see him until late on retreat day, to prepare him for my delayed visit, we worked together for a week before the retreat. I drilled him on what was likely to be my arrival time that evening. This technique had worked before. It was the only one that did anymore. That is, until now.

I entered his room, the partially drawn curtain between Romeo and his roommate allowing a view only of Romeo's feet and legs. He was tucked under the covers, seemingly in bed for the night, much earlier than usual. As I came closer, I saw that the bed had been lowered so it sat about six inches off the floor. A mat had been placed on the floor beside the bed. This is the typical evening arrangement, precautions to prevent any injury if Romeo happened to fall out of bed during the night.

He saw me come to the side of his bed. And he glared at me. Glared at me. Daggers shot from his eyes, heading my way, hundreds of tiny daggers. I took the hit. I took all of them. And I took them gladly because I knew, without a word having been spoken from either of us, that Romeo had forgotten that today I would be late. He did not remember that I would be in the mountains and not be able to see him until later in the day, much later.

The daggers pierced my skin, traveled to my heart, my stomach, my lungs, my throat. No part of my body escaped injury. The wounds hurt; I was in great pain. But I also knew that Romeo's wounds hurt more, that his pain was much greater. His pain manufactured and then launched the daggers that attacked me. His pain was the wound and hurt of abandonment. He thought I had left him that day. He thought I was gone for good, would never come back. He was frightened and angry, and this pain had been simmering in him all day. He was a pressure cooker of loneliness and fear, and it was now time for him to blow and for me to clean up the mess.

We sat together as his hurt and pain and fear and my hurt and pain and fear became acquainted, until we all were simply one happy family of hurt, pain, fear, loneliness, abandonment. We sat, my hand holding his, each of us crying like abandoned kittens, each of us forgiving the other, forgiving ourselves, forgiving Romeo's dementia, forgiving the Universe. Until finally, finally, finally...until finally, we laughed.