March 10, 2018
When you are faced with a terminal disease like dementia, you begin to view death differently. My stepmom’s death is something I have thought about quite a bit over the past few years. This horrible disease slowly picks at her & takes her away from me & those she loves bit by bit. I never know how I will find her when I visit & I honestly don’t know how she feels about this mess called dementia because it long ago took away her ability to communicate with us verbally. It is hard to watch her slowly slip away. It is hard wondering if she is suffering & wondering if you truly are doing everything you can to bring her peace. I’ve found, at times, my casual attitude of Jane’s death to bother some friends. They always want to comfort me & tell me she has lots of life left to live. I know they mean well & their words come from a place of love, but the reality is I don’t hope for a long life for my stepmom. I hope she goes on her terms, without pain, when she is ready to leave this world.
Dementia has robbed my stepmom of so much, one of which being a long, full life. She worked hard her entire life but never had a chance to enjoy retirement the way she & my dad had planned – because the disease had already staked claim on her mind. Jane was never able to volunteer in the hospital “helping babies” like she always dreamed of doing because she was too sick to focus & be of value. She was never able to travel the world with my dad, sending me postcards with stories of their journeys like she always told me she would. She won’t be able to see her grandchildren grow up. She won’t get to grow old with my dad. And when I think about all the things this disease has taken from her, from my dad, from our family, it makes me angry. But anger doesn’t help Jane.
Instead, I choose to focus on the moments I spend with Jane. The way she looks deep into my eyes & smiles. How she holds my hand to comfort me. How she leans on me for support when we walk – not because she needs my support but because she likes to be close. How she always listens to my stories & when I desperately need her advice she finds a way to get it to me. I don’t know how many moments I have left. It is a harsh reality that this disease may take her mind completely before she leaves this world. There may come a time my stepmom does not know me, does not know anyone she loves. I hope every day it never comes to that because I know that is not a life Jane will want to be a part of. Family has always been incredibly important to Jane. I never met either of her parents because they died when she was young, yet I feel like I know them from all the stories Jane has shared with me over the years. I so hope this disease takes her life before it takes her feelings of love.
Jane had another seizure yesterday morning. It happened very early in the morning & it was witnessed by a caregiver. This is what we suspect as 3 seizures in less than 3 weeks. They are occurring more frequently. My dad had visited Jane yesterday & again today, but I needed to go see her too. I worry. And honestly – Jane is never going to complain about getting an extra visit from someone she loves. So I went to see her this afternoon. I am happy to say I found her in good spirits. She was talking lots (though most of it I could not understand) & she was smiling & laughing. It’s been weeks – maybe even months – since I have heard her laugh. She was very aware today so we video chatted with my sister Bobbi & Jane very much enjoyed that. She even grabbed my phone to pull Bobbi closer. I think she was trying to send her a hug.
There are so many questions I have for Jane. So many things I wish she could tell me. But she can’t. So I will take the win that she clearly was having a good day. She smiled & laughed with my dad earlier today & laughed with her daughters this afternoon. I know she felt all of our love & we felt her love. And at the end of the day, that is all that matters.
