Denial and Isolation
Well, I humbly come to you no longer from the sidelines but from the field. Dr. Cate, Dementia Coach has been forced to put on a helmet and uniform. Yet even as I write this I question if indeed I am exaggerating. Just because my spouse has said for the past three years that he is having processing problems. Just because he emits off the scale anxiety around any new process, including opening a new piece of equipment . . .
I do not have a diagnosis. Maybe it is all in our heads. Maybe he is just crying wolf . . . and I have come to believe him.
I believe him more than he believes him. I believe because I remember the times he has had a meltdown. He does not. I am the one taking the verbal assaults when he is melting. I forget my helmet and find myself pummeled and bruised an hour later . . . while he is resting on the bench joking with the water boy.
Of course the game is even more challenging in that it is taking place on a 41 foot sailboat in the Caribbean surrounded by Heston-like individualists who reject the US, the locals, and most things I value.
So the Dementia Coach regroups. I think of my caregiver advice. I took up Zumba in town. The walk to and from has given me necessary space to reach out to experts, counselors I have worked beside. The Zumba feeds my physical and emotional strength.
We have discussed the need to return to the US. Dreamkiller is a name I have chanting in my subconscious. Though my spouse never says it quite that way.
As we sink back into denial between incidents I hear how the hard part of sailing the Caribbean is over. It’s all downhill from here. It is a cake-walk from here. Others saying, you can’t go home without going down island, you are so close. And the Puerto Rican Zumba ladies, stay—we have all that you need. Yet the Alzheimer’s Association helpline voice recordings were in Spanish and never called back. Even though I stated I was a spouse looking for support.
I am amazed and thrilled to experience the magnificence of a Caribbean sunrise or sunset. I am honored to become acquainted with Puerto Rican women who seem more grateful for life than my local boaters. I understand also that my language deficits adds to my naivety. It protects me from knowing much of what is driving them.
Little does my spouse know, I do not see “downhill from here” as positive. I see fraying line and fear the emergency replacement needed during an assault by the gentle Caribbean. I hear how his arthritis is making everyday chores difficult and I project how that will play out trying to clip a harness to a safety line. Biggest of all . . . I see a mechanical or electrical incident, minor or major that will require split second processing and fear neither of us will be up to the task.
But as I step out of my caregiver anxiety and look at the game’s history, I see that most spouses have had to be the bad guy not just once, but many times. Whether it is getting the diagnosis, removing the keys, distributing medication, placement in memory care . . . life as a caregiver requires the ability to be the bad guy.
Which circles me right back to enjoying the moments here today. Waiting for any critical decision until we have a memory assessment in December. Practicing self-care.