In this second week of me getting up to bring Cheryl her 7AM meds and get her settled back in bed, there are new things to consider.
As a caregiver it is easy to develop a narrow focus;
As we travel farther down the Parkinson’s road I as caregiver have slowly given over to the idea that little matters if it does not directly enable Cheryl to live a more comfortable life. The idea of this taints any thought, opinion or reading that may occur during the day. It colors the glasses through which I view the world. I love her. She is my world.
As a caregiver it is easy to ignore your own needs;
I like to read. I like to write this little journal blog. I like to ponder things such as the etymology of blog. And why do celebrities make air quotes while talking and for that matter what makes celebrity. I like to tease and poke fun at family and friends on Facebook. The whole concept of Facebook can be both focus narrowing and needy. I like to ride my bike in the heat. It is not bad. There is a breeze. I like to drink coffee. I like to cook for Cheryl but sometimes I like to take her out to dinner. I like to make coffee cake and other bakery treats.
As a caregiver it is hard to give yourself permission to;
Read, journal, ponder, tease on Facebook, ride my bike, drink coffee, make coffee cake — when Cheryl’s needs come first and change from day to day, sometimes hour to hour. Priorities are what I have made them. A niggly little guilt arises in the back of my head whenever I give myself permission to do some things. Things that might take me out of the house for a couple hours, things that might be a benefit to my mental well-being generate a background feeling of ill-ease. It is a sense of what am I missing? what could go wrong?
As a caregiver it is hard to be open to a wider perspective;
The opinions and ideas of others tend to be pushed into the background as you, as caregiver, become certain that you know best. It is creeping arrogance, misplaced righteousness and unfounded expertise that brings you here. Resist that idea. Push back on other’s unsolicited advice but do not resist the ideas of the person you giving care to. You cannot know her innermost fears.
As a caregiver it is hard to be open to help;
I think I have never been open to unsolicited help from anyone about anything. Cheryl’s PD adds a new twist to this. I am open to education and perspective. I seek help when I feel that I have exhausted all resources and have painted myself into a corner or have gotten trapped in a cul-de-sac. But unsolicited expertise from unvetted sources is easily rejected by my thought process. Much like Joe Friday in Drag Net, only the facts, Ma’am, only the facts.
As a caregiver it is tiring to keep educating oneself;
It is, however, the most important activity to do. Keep learning. New therapies and drugs appear. Which are helpful? Which are not?
As a caregiver it is tiring to watch the slow progression;
It is, however, important to be vigilant. The two steps forward with one back or sideways progress of PD is exhausting.
As a caregiver it is hard to breakout of the negativity;
Encouraging entreaties are not readily forthcoming. Parkinson’s disease gets in the way of so many trivial tasks. As the mental component creeps into daily life, it is difficult to see an upside.
As a caregiver it is hard to stay in the moment;
Often the moments are fleeting. The moments are getting fewer. …and the negativity comes back. Parkinson’s truly does suck.