It took me fourteen-years and nine-months to figure out that I was a caregiver. One hurdle was the terminology. To me, the word “caregiver” described my Dad. During Mom’s Alzheimer’s, Dad cared for Mom 24-hours a day, 7-days a week. Using “caregiver’ to describe what I did, well, it just felt wrong. How could the encouragement, love and resources I gave to Dad, measure up to the laundry, meals and baths Dad gave to Mom?
Fourteen-years and nine-months later, I’ve finally accepted that the same word is used to for both Dad’s role and my role. [i] I’ve also realized something more important.
Caregiving is something other than a competition.
What matters in caregiving is 1) that you care and 2) that you give care.
WHY IT MATTERS FOR YOU TO CALL YOURSELF A CAREGIVER
Alzheimer’s caregiving catches almost everyone by surprise. We quickly realize that there is a lot to learn. And that everyone involved has a different perspective about what is best for your loved one with Alzheimer’s.
One thing is for sure. Something happens when you embrace the title of Alzheimer’s caregiver. Doors begin to open. You notice things you’ve yet to notice before. Announcements for events, advertisements for support groups, and registrations for caregiver classes. They seem to almost jump out and call your name. This is because your brain now sees these as pertaining to you. You type ‘Alzheimer’s family caregiver’ or ‘family caregiver support [state]’ into BING, and your odds of finding relevant resources improve dramatically.
Even more doors open when you attend events for ‘Alzheimer’s Caregivers’ in person. Doors to resources that help with the emotions of Alzheimer’s caregiving. Doors to services you can test out to see if they might help. Doors to resources that provide breaks from caregiving.
Whether these sound valuable today is of little consequence. They will be valuable someday.
WHEN ONLY A SPOUSE OR LEGAL GUARDIAN WILL DO
Of course, there are situations when only the caregiver who is the legal spouse or guardian will do. In healthcare decisions, durable power of attorney decisions, matters around guardianship of property, financial matters and others. Your attorney and advisors will alert you.
WHEN ANY CAREGIVER WILL DO
Know this: In over fifteen years of my mother’s Alzheimer’s, the occasions that required Mom’s spouse or legal guardian totaled up to a maximum of maybe 36 hours.
Every other minute of every day, if Mom could have defined what she needed in a caregiver, it would have been something like this:
Wanted: A well-rested, patient, alert, informed, cheerful person-to-treat-me-with-love.
Everything you do to be this person counts as caregiving.
Everything you do to help the primary caregiver be this person counts as caregiving.
DRAW YOUR CURRENT STATE
To prove to yourself once and for all that you are a caregiver, try drawing a picture of your life right now. This your current state. Get detailed. Get messy. Have fun.
Put your drawing aside for a day or two. The next time you pick it up, imagine someone else drew it. Try to see the drawing with fresh eyes. From what you see, would you say you are looking at the life of a caregiver?
If your answer is yes, start thinking of yourself as an Alzheimer’s Caregiver now. Someday you’ll agree it made all the difference.
What your caregiver really wants from you
Phone support for an Alzheimer’s caregiver parent (Plus/Delta Review) https://www.theperfectthing.info/2018/07/26/phone-support-for-an-alzheimers-caregiver-parent-plus-delta-review/
What 24 hours in your parents’ home can teach you
[i] Denise Brown identifies six different stages of caregiving. Learn about each in Denise’s book: The Caregiving Years, Six Stages to a Meaningful Journey. Available at: https://www.caregiving.com/store/#!/The-Caregiving-Years-Six-Stages-to-a-Meaningful-Journey/p/110722781/category=29969901 and on https://www.caregiving.com