When I first decided to have my grandma with Alzheimer’s move in with me, I never would have classified myself as a caregiver! To be honest, I wasn’t that familiar with the term. All I knew was that my Grams needed my help and I wanted to return the love she always gave me. I often wonder if anything could have prepared me for what the next 6 years of my life have been, but here’s a few things I wish I would have known from the start:
Caregiving is an act of true love and compassion, but always make yourself the first recipient. As caregivers, it’s easy to lose ourselves in the job of caring for another, so finding ways to maintain any sense of self is crucial. Remember, you’re so much more than just a caregiver, just as your loved one is so much more than just a person with dementia receiving care.
You need to find ways to honor those people outside of your role. For instance, I try to wake up early so I can start my day with yoga, journaling, and some “me” time. But even while Grams is awake, I try to be intentional with the food I eat or clothes I wear just to help maintain who I am too. Self-care can come in many different avenues, so whatever that looks like for you, just don’t forget the self!
Now Alzheimer’s is a roller coaster, so strap in. From my experience, just when you think you have a handle on this disease and things possibly can’t get any worse – they do! The anticipatory grief of losing pieces of your loved one as they lose their memories is heartbreaking. You need support from people who get it!
I highly recommend finding a support group and finding people that are in or have been in your shoes, because friends and family who don’t see the daily challenges might not understand your point of view. For me, being able to openly talk about how I was feeling or what was happening with my grandma became a lifeline. The support from fellow caregivers has truly been invaluable. Just remember, you’re not alone – even if it can feel that way.
Now some of the best advice I received as far as caring for my grandma with Alzheimer’s was to learn to let go. I had to let go of how I thought things should be. I had to let go of that control because people with Alzheimer’s are going to lose their ability to understand and reason, so when they’re telling you that the sky is green, the sky is green. We must live in their world.
The first 2 years, I tried so hard to get my grandma to “see the truth.” It caused so much added stress and anxiety for both of us. I found some amazing educators online that teach amazing approaches and techniques on how to best interact with your loved one. These techniques have truly saved my relationship with my grandma, my energy as a caregiver, and my sanity.
Caregiving for a loved one with Alzheimer’s is trial and error. What works one day might not work the next. And since it’s progressive, it’s always changing. So give yourself grace, educate as best you can, and lead with love. You’re doing the best you can.
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