My grandmother used to make world famous grilled cheese sandwiches. She would use white Wonder bread, and slather the sides with real butter. In between those pieces of bread would be orange slices of cheese…the kind that came in singles and I would get to peel the plastic off of them and would always eat a slice or two as I waited for my sandwich. And then she would create magic. I don’t know how she did it–patience, perhaps. I tend to cook things on my stove at really high temperatures because I hate to wait. My grilled cheese sandwiches never look like hers did–with crispy edges and gooey cheese pouring out of the two triangles she would serve me…I almost feel like I’m sitting at her kitchen table right now waiting for one. And she’d serve it was a glass of cranberry juice mixed with ginger ale. It was heaven.
That piece of heaven was ripped away from me in one fell swoop, one day at her condo in Manchester. I had moved in with gram when we learned that she had Alzheimer’s disease, with the hopes of being able to keep her in her own home for as long as possible. This one afternoon, she asked if I wanted a grilled cheese sandwich and I immediately went from a 23-year-old hipster to a 5-year-old on Christmas morning, anxiously awaiting her new Barbie doll sports car. I threw myself into the kitchen chair and waited, anticipating the sweet, creamy, crispy treat that was about to come my way. But what was placed in front of me was not a sweet, creamy, crispy grilled cheese sandwich. My gram’s world famous sandwich was burnt to a crisp.
This was a defining moment in her illness for me. It was around this time that I started to feel overwhelmed…like I couldn’t handle the depth of her illness…like I needed to get out. And I loved my sweet little gram so much–it was hard to think that I couldn’t just “suck it up” and help out. I hated myself for this for a long time–hated that I gave up and moved out…but I started to realize that I wasn’t a terrible person for not being able to manage the emotions of losing someone I loved to dementia. It wasn’t just that I couldn’t clean up after her, or give her medications on time, or help her back to bed when she got out in the middle of the night. I couldn’t be there to watch her decline and deteriorate. My heart couldn’t handle the every day reminders that I was losing her.
I still struggle with this…especially now that she’s gone. I still wish I had been able to hang in and give her more of my time. Maybe it was all part of the plan because watching her go through the long term care system brought me into nursing, and pushed me to make it better for others going through this. It’s hard–it’s a hard decision to make when it comes time to place your loved one in the care of someone else. I think we are often of the mindset that we want to do it, because no one will be able to do it better than us. And we push ourselves to the max to do everything we can for everyone else…but we forget about our own self. I wanted to be that person so badly for my gram, and for my family…but in the end it was too hard, and it hurt too much.
It hurt when I got frustrated with her…or when she became upset with me. It hurt when I couldn’t redirect her…or when I couldn’t cheer her up. When we finally got her into a place that specialized in memory care, I was able to sit with her at the piano again, and sing songs together. My mom and I could take her out for meals, and we could laugh together. Our time together became so much more meaningful, and seeing her was a joy…something that I looked forward to again. I’ll never forget the day I left, and she was no longer able to speak, but she looked at my face, and rubbed my cheek, and stared into my eyes for what seemed like minutes…smiling. When I turned around, my mother and I had tears streaming down our cheeks. That woman was something amazing.
I’m forever thankful that I had that time with her, in her home, spending our evenings drinking wine and watching game shows. I helped put her to bed, make her breakfast, helped her feed the ducks and squirrels…and there were so many hours where she would sit on the couch and listen to me bang away at the piano, or the guitar that she had given me. I was never any good…but she loved every minute of it…and that’s what I’ll remember.
And I’m forever thankful to the wonderful place where she eventually ended up. They made her smile, helped her walk, and gave my family and I the peace of mind that we so desperately needed. We wanted her to be as safe, and as well-cared for as she could be, and that put my life onto a path I never would have guessed. Making the decision to allow someone else to care for your loved one is one of the hardest decisions you might make. I firmly believe that it was what was best for my gram and I…it helped us to feel like I was her granddaughter again, and that was a relationship that was so important to both of us.
So my plea is this: don’t ever feel that you’re wrong for thinking you can’t do it all…or that you need more help. Don’t ever feel like a failure if it all becomes too hard. It is hard. Taking care of someone with dementia can at times be almost impossible. It’s a disease…and illness…and it takes a village. There are people who can help; whether it’s respite, companion care, or just someone who can sit with you and help you navigate the system. There is support for caregivers, and support for those with dementia…and there are places that specialize in memory care and quality of life. You’re not alone in the battle, and there are people who understand more than you know. So go ahead and lean on them…that’s what we’re here for.
(Above: me and my sweet Rita at Shady Glen, our favorite lunch spot.)