Last night I referenced jumping off the grid for a few days. For those of you who know how to read between the lines of this carepage you know what that meant ~ we’re coping with some very difficult days again. It’s not just anxiety and temper tantrums, it’s dealing with Corey’s memory vs. her current reality.
The full details of our days are not published for several reasons; primarily so I don’t diminish my source of inner strength and motivation. That being said, they do exist and exhaust my daily momentum as a caregiver. It’s a personal challenge to strengthen my spirit.
On the way to Bryn Mawr today, Corey began her ritual of combative questions, “why are we going” and “when can we stop going”. I responded honestly;
M – Corey, I can not continue to be helpful and positive if you are fighting me every day.
M – Please tell me what is behind these questions?
C – I do not understand what’s wrong with me
C – Why do I need to go there?
M – That’s the problem honey, you have a brain injury and part of your memory was erased (and the mantra of clinical facts is replayed). Within seconds the cycle repeats itself.
Case in point;
Corey had a great session with Kate and Natalie today. Kate used the Ipad to ‘go shopping’. Kate emptied her wallet utilizing real currency so Corey could shop and discuss the cost vs. saving etc. Corey could identify the bills today but could not name the coins. If we stated the coins name, she knew their value and could quickly calculate what was needed for the purchase. There was significant progress in today’s session vs. the last shopping session over a month ago; however, from the time we left Kate’s office to the time we entered the main hall, Corey had no idea where we were. She became very upset insisting we go home ~ her naptime was never more welcome.
After lunch we worked with Natalie. Corey had a strong walk on the Lokomat and finished her session with a timed test walking on land. She cut her land time in half; a sign she’s gaining strength and fluid motion. We were all thrilled as we said our goodbyes. Corey and I headed back to the Lobby to exchange the sample wheelchair for her chair. Still overjoyed from witnessing her progress I congratulated her, “I’m so proud of you honey, what a great job today”!
C – what did I do?
M – you had one of your strongest walks today!
C – when?
M – with Natalie, a few minutes ago.
C – who’s Natalie?
When we brought out her wheelchair she looked insulted and confused,
C – what’s that?
M – your wheelchair
C – why do I need that!
Yet in the next moment she can communicate a profound statement;
C – Mom, I’m sorry I ask the same question a 1,000 times. You don’t know how frustrating it is not to know where you are all day.
These emotional moments are more exhausting than any physical activity I do in a day.
A friend wrote me reminding me that “it’s okay to not only have a crappy day, but occasionally share those feelings”. We all have crappy days!
Another friend reminded me that today only lasts 24 hours. Tomorrow might be another difficult day but that will only last the same length of time. Nothing lasts forever…and don’t forget to look back on when the REALLY bad days seemed endless. Today’s bad day will be filed away just like the early days were.
I am grateful for friends, family and my other daughter! Caitlin gave me the night off. I met a girlfriend for dinner, we shared some laughs and then I found my way to my old parish. Tonight was the first night I sat in a church in a very long time. The choir was practicing. I closed my eyes to truly listen to their voices. I tried to silence my mind but one question kept repeating itself drowning out the hymns, escalating louder and louder.
~ What do you want me to do ~
My mind and my heart grew silent and I heard myself whisper, ‘Just sit with me’