April 4, 2019

Lunch with Jane:

I went to see my stepmom yesterday, like I do every Wednesday. But I didn’t feel very inspired to post an update. I know I need to post every time I visit. I need to take a pic & share a story. There will come a time I won’t be able to visit her & these memories will be nice to see. But some days, well, I just don’t feel like talking about it.

The disease is progressing. It is winning the battle most of the time & my stepmom is losing. Her muscles are atrophying so it’s hard for her to stay seated upright in her wheelchair. It’s difficult to lift her up so she is seated more comfortably. It’s difficult to get her to stand up. It’s even difficult to get her to bend her leg so she can set her feet on the footrests of her wheelchair when I take her for a walk after lunch. Everything is harder. None of this is Jane’s fault. I know she can’t stand the fact that she is completely dependent on others to help her. It’s this damn disease!! I hate this fucking disease! Sorry to use profanity for those it may offend, but I am really angry at this disease. It is a monster. It destroys its victims & does its best to bring her loved ones down too. I don’t agree with it – but I can understand why many stop visiting their loved ones inflicted with this disease. It’s hard to watch someone you love deteriorate before your eyes. However, this is when they need you the most. And to me, love means you show up – even when it’s hard.

Even though this disease is winning, Jane was present yesterday. She jabbered on for about 30 minutes, she smiled at me several times, and we had a good conversation. She held onto both of my hands & squeezed them tight. She smiled when my dad texted her & again when her sister Maxine texted. She knows who we are. She is still in there. She is just trapped.

Tuesday was Jane’s 68th birthday. I went with my dad to visit. I don’t think she understands what you mean when you say birthday, but she was happy to have double the attention. She was quiet, but calm. I forgot to take a pic – or maybe subconsciously I didn’t want to. It is hard to believe she is only 68 & in the final stages of dementia. I mean haven’t we always been told it’s an old persons disease? My stepmom is not old. And she was only 10 years older than I am today when the disease likely began to take root in her brain.

Hug your loved ones & make sure you always tell them how you feel. Life is precious & we never know what the future holds.