We share one brain, she would always joke. And I would agree. We could read each other’s minds. Now there is a little less brain to share between us because of Glioblastoma (brain cancer). I am grateful to still be able to fill in the trailing ends of her spoken wishes. It’s like she’s 99 44/100ths here. But, that last bit is SO important! I usually have no problem finding the word with the smallest sliver of a clue. I guess that comes with just knowing someone since 1994.
She won’t step into the shower anymore… I was helping her over the tub side. Now it’s too much for her, she told me last week. No more showers. So there’s some 3 in 1 Wash we started using. She can still stand so there’s that. I just hope we get the shower done soon. If she can, I want her to be able to use it. Because I know she just feels better after taking a real shower.
I do love her (is it possible more than ever?). Who else (besides her mom) will wipe her butt, bathe her and put lotion on her skin? Well, I found out. We now have a CNA from Hospice come three times a week to bathe her in the bed. It’s a BIG help for me. The first visit, I was there the whole time, I had no idea what to expect or how they would do what they did. But, it was fine. It really was, except that one CNA was mortally afraid of dogs. But, once she met our little, Lilly. All was fine.
I’ve seen the changes with Ang. I hate to see the frustration in her face, the tears that she knows what’s happening to her with accessing the right word or, forming a sentence. We joke that we share one brain. These days I think she needs more of it than I do.
We have spoken so much in the last 14 months. About everything. From the gift of our shared intimacy to how she knows every detail of my life like no one else does. And I know hers.
And we make moments as we can, like that rare 70-degree day on February 6, 2019. I got her to carefully, move outside for a little while. In my mind, I jumped for joy that we could make that happen.
She approaches this slow, steady decline with such grace, most days. It’s mind-boggling. But, she is none the less slowly, declining. And it rips at my heart, silently. Sometimes as tears, off in some other corner of the house, behind a bathroom door or, breaking down right in front of her occasionally.
Someday, I’ll have “our” brain to myself and I am not looking forward to it. I am NOT looking forward to it. I love you, Angela, always.
Want to Help?
1.) Follow the Team Angela page on Facebook
https://www.facebook.com/teamangelaupdates
2.) Donate to the GoFundMe
https://www.gofundme.com/advocating-angelaainbinder
Image: By Ansonlobo – Own work, CC BY-SA 4.0, https://commons.wikimedia.org/w/index.php?curid=47897271
3 Responses
Dear Rob, I don’t know you but I am crying for you because I know what you are going through. I lost my brilliant, creative mother to glioblastoma and seeing her decline was so difficult. It sounds crazy to say but your wife is lucky to have someone who loves and knows her so well in these days where putting together even a simple sentence can be a trial. Accept the help from family, friends, and hospice so you can remain strong for her. My prayers are with you and all suffering from this awful disease.
Maria
Thank you for your comments and prayers. We are so grateful for all the help and support from friends and strangers alike. We continue to take it a day at a time. You and I may not know each other but, this disease has brought us one step closer. I hate this disease and wish a cure was in much closer reach.