Deciding to bring grandma into my home was an easy decision to make. I didn’t stop to think what it would do to, or how it would affect, my family. Thankfully, my other half Carlos, was always on-board with the idea but honestly, neither of us knew what we were getting into or what dementia had done to her.
Dementia took my grandmother in ways I never knew possible. Being forgetful is something we all go through in spurts. But she forgets that I’m her granddaughter. When she asks me about my ‘sister’ I know she actually means my mother (or maybe aunt). She will sit in her room alone in the dark asking herself why she is doing it. She burns and ruins pots and lets the sink overflow. She made herself a sandwich and put the ingredients away in the pantry. We find mysterious cups throughout the house but if you ask, none of them are hers. She wakes up crying at night because she doesn’t remember where she is, so I run out of bed and lay with her till she falls back asleep. She has peeled the paint off the walls. She has left the house while I’ve been in the shower and she hates when I tell her no. Her independence was everything to her and for her own safety, she no longer has it. And she can’t understand why.
To be candid, I cry when I think about the future; Her future in particular. She never spoke of death or what to do if she gets sick. I don’t know what she really wants because it’s too late to know for sure that’s what the real her wants. And though it hurts to say, that’s how it feels.
Because even though I know she’s in there, I never fully know when she’s the one talking or when it’s the dementia.
So we have no plans if she gets bedridden or suddenly comes down with an illness. I don’t know what she wants if the worst happens. I didn’t plan to be making these decisions, but they will be mine to make one day. And sooner rather than later. We’ll take it day at a time and cross each bridge as we get there. So she’s just … with me. She will always just be with me. I don’t think I could ever let her go. And that’s a kind of plan in itself.
So while I lament what I’ve had taken, and more tragically, what she has been robbed of, I have to bring a sense of optimism into my fears. Because dementia will overpower me if I let it. And if she doesn’t let it overpower her, I can’t either. I’ll focus on something that will allow me to push ahead. I know it’s only going to get worse, so for now, I need to remember how blessed I am to have her.
And here’s what Dementia did not take:
1. Her Love of Life. I know she only gleams how serious her condition is from time to time; but she still sees it. All the while, though, she lives so carelessly and remains so in love with life. When we go to new places she gets excited and she loves our walks in the evening. We sit out on the front porch and chat with the neighbors as they walk by and they love seeing her. She has made so many new friends and the kids next door adore her so much so they call her grandma.
2. Her as My Rock. She still lets me lay my head on her lap as she strokes my hair. And when I cry, she cries no matter my reason for crying. And even if I lose that as time goes (and I know I will), I will have that foundation built into who I am as a person. I am stronger because of how she built me. I will withstand any storm because I’ve had her to show me how. She will always be my rock – Even when her dementia is the force I’m standing against.
3. Her ability to love. She tells me she loves me she every morning and every night. And anytime I walk out the door without her, I hear her prayers for me under her breath. She loves my children. She loves our neighbor’s children. She loves everyone. She isn’t bitter. She isn’t jaded. She’s a kind person with a loving heart. And, again, dementia may one day take that from her, but it will never rob the world of the kindness she’s spread during her life.
4. My Memory of Her. This may sound petty, but when dementia riddles the mind of a loved one, you’ll take every victory you can. Dementia can take her memories of me from her but it will never take away my memories of her.
5. Her. I guess what dementia didn’t take is the essence of her. Who she is is as a person is still inside her, deep down (sometimes it’s deeper than others). She is still her under that cloud of smoke and I still see her there. I know she’s there, even when she doesn’t. When she’s lost, I will help her find herself. As much as I can. For as long as I can.
Dementia and Alzheimer’s break the hearts of the loved ones suffering as completely as they break the minds of those who suffer. Research on Dementia and Alzheimer’s is so important to any advances in medicine and maybe one day, a cure. We can’t put a price tag on the significance of finding a medication that could keep my grandmother’s mind her own for even just a little longer. If you are able, please consider donating to the Alzheimer’s Research Foundation.