Kind at Heart

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David and Bernice during our wedding reception.

David is the youngest of four. There was Rick, Ayme, Nathan, and David. David’s father died February 1998. Within six months his mother’s brother and his mother’s mother both died. A few months later David’s sister developed bone cancer. She battled for over a year and then passed away. A few years later David’s brother Rick was faced with tragic circumstances, developed severe health problems, and passed away. Nathan, living in Bermuda, then moved to Germany, and has been there ever since. That left David to watch out for his mother and Nathan’s son, Matthew. As you can imagine, David has a very close relationship with his mother.

David was always clear that he would be the one to care for his mother and I respect that. She has been incredibly kind and loving towards everyone she meets. And extremely accepting of me. David and I knew this day would come, we knew that eventually we would need to begin caring for her. We just didn’t expect it to happen so soon. David’s grandmother suffered from dementia as well, but it didn’t begin until much later in her life. We expected the same for Bernice, we were wrong.

It’s been challenging at times. I never knew Bernice outside of dementia, and when I first met her she was just beginning to show the signs. I thought she was an odd duck, but she was nice enough so I didn’t complain. I wish I had known her before dementia. I wish I had the opportunity to see her the way David’s family does. I love Bernice for who she is now, but I wish I could know her and have loved her for who she really is. It makes me sad when I see hints of who she once was shine through. I’ll get excited and think, “Are some of the things we are doing helping?” But then she’ll slip back into her fog and I’m at a loss to help her.

And then there are days where she looks at me and speaks with shocking clarity and wisdom. I always sit down with Bernice and explain to her what is going on, what David and are thinking about things, and what we are doing for her. I want her to stay in the loop, she deserves that. Even though she doesn’t understand what we’re doing, she understands that we’re doing something and she appreciates us treating her with respect. So yesterday I talked with her about some things David and I are discussing. And I shared with her one of my concerns, it was about Brielle. I told her I didn’t want to leave my memories of Brielle, but I needed to do what was best for all of us too. Bernice looked right at me and said, “Brielle will always be with you. You’ll always have your memories and she’ll always be in your heart.”

It was just what I needed to hear and what was even more comforting, was that I knew Bernice’s words came from experience. She’s been in my shoes and she knows. She knows how I am feeling, she knows what I need to hear, and even though she’s lost the ability to do some things, she still knows Ayme. She still knows that grief and joy. She understands that I have bad days, that sometimes I need to talk about Brielle, and some days I just need to be left alone. I don’t have to explain myself to Bernice. At one point I did, and she said, “Oh, I know. It’s okay. Don’t worry about me, you just take care of yourself today.” And Bernice will go on and do her best to care for herself or help me around the house.

Dementia is a very tragic disease and those who suffer from it are certainly limited. But I am learning to not underestimate Bernice. She has so much wisdom and love to still offer. She may not always understand everything, but she still understands the spirit of things and she has been a very encouraging and loving presence in this house. I am very appreciative of her and her genuine kindness.

Brielle’s Baby Shower

Saturday I was given a surprise baby shower for Brielle. I am in a group of wonderful ladies that also suffer from gastroparesis. A condition where the stomach organ is paralyzed. I’ve struggled with gastroparesis for nearly ten years now. The past three or so years I’ve had the pleasure of getting to know this wonderful group of women. We are all very different, but have grown close through our struggles with gastroparesis, but also through sharing our lives and becoming good friends.

They each sent me cards to open on Saturday, and then they sent a large envelope that I was instructed to open last. Each card was beautiful, uplifting, and encouraging. And I treasure each one. The final envelope was truly a big surprise. The group had not only donated to Duke University (where they research anencephaly), but had bought Brielle a star!

David and I were so excited about her star! We’ve wanted to get one for her, but have not had the time or energy to look into it. This was a huge surprise and greatly appreciated. It was so sweet and made me feel so good to have a shower for Brielle, especially such a special one. This will be something I tuck away in my heart forever.

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