Rapidly progressive dementia of unknown origin. …such an innocuous name. No fancy disease to fight, no association to provide education. Labs and tests and more guesses, and more dementia. The hardest part is seeing Casper understand that she can’t remember, or even worse having to explain it to someone. I want to swoop in and rescue her. Sometimes I can’t, and it’s unbearable.
Today I was just trying to fix a phone issue with our wireless provider. The customer service person needed to verify Casper’s identity by phone. “Name?” “Casper.” “Full name.” “Casper.” “Full name please.” “Kathy…Kathy Casper.” “Date of birth?” Silence. “Date of birth???” “12/28.” “Date of birth. I need your date of birth.” “12/28…” I took the phone and provided the year. “Ma’am, I need YOU to provide the information!” Casper repeated it for her. “Password??” “I’m not sure.” “It is your password?” “Yes. I can’t remember. Honey, what’s the password?” I gave it to the representative. “Is there some reason SHE can’t give that information?” Yes, as a matter of fact there is. I wish I had a good name for it. Clearly she was struggling in that conversation. Why can’t you try a little kindness? I finally got the phone and left the room, and explained. Suddenly they were understanding. But why does Casper have to experience this over and over?
We go for walks some days, when the shakes are not so bad. Now I hold her arm not just to keep her upright, but to make sure she does not take a wrong turn, and so I don’t have to correct her verbally. Just a gentle tug and we are back on the correct route. Other days she knows she is confused, and calls for me to come get her. She will ride all day with me, sitting under a tree as I see patients. She knows her life as she knew it has been stolen by whatever this is, and she hates it. I am the one seeing patients. She wishes with all her might that she still could. She struggles for words and to remember friends’ names. Nursing information that used to be second nature isn’t there anymore. Her identity is slipping away bit by bit. Her confidence is as well. She used to be the protector. Now she is afraid at times. She gets lost in buildings, lost in our neighborhood, she can’t remember days or dates or events. She is sometimes afraid to call family because she will sound different to them. Last week she suddenly reverted to calling herself Kathy again. She laughed and said she didn’t know why. This week she could not remember how we are going to hyphenate our names. Then some beautiful days we have laughter and smiles and moments out where she can joke and relax. We both live for those moments.
Today I am waiting for her to sleep again, after that terrible phone call, before I can leave for work. The shaking is so bad she can’t hold her head up. She doesn’t like to be alone at those times until she sleeps. So I call families, make arrangements for other people’s lives, work on paperwork, waiting for sleep to come. And hope I get home before we find out where we are later today. Back to before? One can always hope.
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