Flexibility in Alzheimer's Caregiving: Making Compromises

I used to be a planner. I grew up in the era of "to-do" lists, calendars, day timers, goals, objectives, and plans. I remember one of the most asked questions in any job interview was, "Where do you plan to be in 5 years?" Plan, execute the plan, plan again. A quote often attributed to Benjamin Franklin, "Failing to plan is planning to fail." It seemed to be the prevailing mantra in my business classes as I pursued my master's degree. And, if plan A didn't work out, you always had a Plan B.

I liked this way of living my life. I liked knowing what I was doing and when. I liked being prepared and did not like surprises. This was true in both my professional life as well as my personal life. This meant that I desired a plan whether it be working downtown or vacationing down under. Throwing a wrench in my plans felt like throwing a wrench at me.

So, this has all changed and it has been hard. As a co-caregiver for someone with Alzheimer's disease, I have learned to hold my plans loosely and be more flexible. This means long-term planning, mid-range planning, and my daily plans. This means that changes of plans can feel like the norm now. This is what it looks like in practical terms.

Long-term planning

Planning for my retirement and our family's financial future has changed. I am not really sure what our situation will be long term. I don't know how long I will be caregiving and how that will affect my bank account. My dreams of sitting on a beach in Florida or enjoying years in the mountain air may not become reality.

I have to be flexible and hold those pursuits with open hands. Maybe those experiences will be part of retirement vacations and not retirement locations.

Mid-range planning

I have a list of things that I want to do, places that I want to go. As a photographer, I want to go to Alaska and find eagles and bears and the Aurora Borealis. Yet, these plans are now on hold. I just don't know what the next one to 10 years looks like. My fear is that when I am available to go that I will not be healthy enough to do so myself.

I have to be flexible and create short term opportunities in the form of day trips and enjoying everything that is around me each day. Mini vacations to places that are a short drive away may be the answer.

Daily planning

My life has slowed down to a halt most days. I used to have A-list priorities, B-list priorities, and so on for each day. I have to be flexible enough now to pick 2 things off my list for any given day. I have to prioritize what is the most important thing to do today other than caregiving and try to chip away at it. This could be errands, cleaning, laundry, landscaping, communication with family and friends.

I used to find comfort in finishing my daily tasks. Now, I find it in the satisfaction of helping others.

The importance of flexibility in caregiving

This brings me to defining success in my life. It used to be quantifiable. Success was defined by some sort of a number. Accomplishment meant doing something that could be counted. I am flexible enough now to redefine how I define success each day.

It is now about quality and not quantity. How can you put a number on comforting someone, making their meals, cleaning up after them? I may never be recognized for my work as a caregiver, but I know that I am making a difference and the only way I can do this is to be flexible in how I think about myself.