Alzheimer's Caregiving: My Biggest Fears and How I Overcome Them
I have a confession to make - sometimes, I don't feel like I know what I am doing. My management classes in graduate school taught me nothing about caring for a loved one with Alzheimer's disease.
All that economic theory and political science counts for zero when I am trying to get her into a change of clothing. Nothing in my work experience helps me. Even raising 2 children feels completely different. I know there is literature out there and videos help, but I don't have a textbook to study or a test to prepare for and take. Where are my notes?
Am I doing this right?
It can be frustrating flying this plane so low without controls. I struggle to find my bearing. Is up really, down? With frustration comes fear. With confusion comes hesitation.
I like closure and lists. I like getting the job done and I am never quite sure when my task is accomplished and if I did it well. I fear that I won't do the best thing - the right thing. I fear doing the wrong thing.
My biggest fears are not about her really. They are more about me.
Managing these caregiver "expectations"
How do I manage this? I have learned that I am not going to be perfect, that I am going to make mistakes. I have learned that I do not always need to feel closure. Some tasks can go left partially done and that is okay. I have learned that there are no formulas that work in every instance. I need to be flexible and adjust.
I don't always need to know my bearing and have a clear understanding of every little situation fits into the whole. I am okay with living in the moment and letting the future be for a later date.
I have learned to hold my plans loosely and not be tied to them. I have learned that I don't have to be THE best caregiver of all time, but to do my best in THIS time.
I have learned that frustration does not help me or her or anyone. It doesn't help my family or friends. Frustration is the result of unmet expectations. I have come to terms with having lowered expectations and raised awareness of seemingly minor accomplishments. Sometimes just getting teeth brushed is like putting a man on the moon.
I don't need to try and pass inspection like a marine recruit in basic training. Sometimes my collar is folded up or there is a wrinkle in my bedding. Sometimes the bed isn't even made. I have stopped self-judging and have been focusing less on my performance and more on her care - and that has made all the difference.
Caregiving: A humbling experience
This whole experience has humbled me. I have a master's degree, a black belt, and have been at the top of my field but now I feel like an apprentice and with no idea where the expert teachers are. Then, I look around. I read about others who are overcoming their fears and doing heroic work for their loved ones. I see their love, commitment, and creativity and I am inspired to be better.
Have you explored our Caregiver's Resource Center?
We are writing the textbook together. We are compiling a body of knowledge that will benefit others long term. It is my privilege to be part of this team with our community to be the authors. I overcome my personal fears of inadequacy by realizing that I am serving my loved one and the community at large when I do my best.
Which, if any, of the following most often trigger agitation in your loved one living with Alzheimer's disease?