July 17, 2019

Lunch with Jane:

My stepmom was very distant today. The disease was winning. I never got a smile out of her today. The best I got was her holding my hand & squeezing it tight. I could feel her sorrow.

Funny enough, Emely told me before I left Jane had been very talkative this morning. And my dad told me she was talkative yesterday. She must have lost the battle before I arrived today. It’s ok – I don’t need her to be strong for me.

Several of the residents talked to me today before Jane & I left the house. Myron, whom I talk with every time I visit, told me he wasn’t feeling well today – apparently his throat is bothering him. The nurse had been by earlier to check on him & also yesterday. I did ask Emely for a chocolate shake or something cold & she came up with chocolate ice cream – only it wasn’t really ice cream – it was something very calorie dense for when the residents don’t want to eat. Myron told me it was good & it helped a little bit. The newest resident told me again how he has to get out of her & how everyone is crazy & mean here. I feel bad for him – he seems lucid yet not enough so to realize they are caring for him. And Jane’s roommate Norma told me she wasn’t feeling very well – she has a cold. I suggest maybe she go sit on the front porch & burn off the bad germs & she said yes I like that idea – I will do that after lunch. And my favorite, Robin, continues to deteriorate. It makes me so sad to watch her quickly go downhill. Most of the residents I’ve witnessed over the past 3.5 years decline gradually but Robin is going quickly. I suppose in many ways, that is a blessing.

I no longer bring Jane cupcakes. They don’t bring her joy anymore. I’m honestly not sure she even understands food anymore. When she eats, it’s like her body is on auto pilot. She’s not enjoying her food – she’s simply eating because she knows her body has to. It makes me sad. Though she is still eating & drinking water. But in some ways I wish she wouldn’t. I wish she would stop fighting to stay alive. I know that may sound controversial & you may disagree with my feelings. You are entitled to your opinion, as I am entitled to mine. My stepmom has NO quality of life. This is a horrible way to hold on. It is not what she would want. And as I watch her suffer this way, I beg the universe to please not let me go out this way. I want to leave this world as vibrant & alive as I came into it – not slowly withering away. Now don’t get me wrong – I fully intend to live into my 100’s – but I don’t want to slowly wither away.

Jane & I sat under the trees for about 20 minutes before it got too hot & we headed into the clubhouse. We both much prefer to visit alone, under the comfort of the big shade trees where the birds sing their songs for us. I shared my latest running journeys with my stepmom & told her it was hot as balls on Sunday morning when I ran. That comment would have cracked my stepmom up – but today she just looked at me. I hope she was laughing loudly inside her head. After I filled her in on everything over the last week, I told her again it was ok for her to stop fighting. I said again she’s fought an incredible fight & we are all so proud of her, but we will all understand if she is tired of fighting. I ensured her again we will all be ok. I can’t help but feel like there is something my stepmom is still waiting on – but for the life of me, I don’t know what it is. I worry I am supposed to be helping her with whatever final closure she needs & somehow I am failing her. My dad thinks her body just isn’t ready to quit. But I see things differently. I believe Jane will die when she is ready. I believe she still holds this final card – no matter what else dementia has stolen from her.

Jane has lived in a memory care facility for almost 4 years. She has been in this particular facility for 3.5. I never thought she would live this long. She has outlived her diagnosis. When the Mayo clinic diagnosed her – they gave her 10 years to live. That was in 2008. Of course the disease effects each victim differently & its hard to give a definitive prediction, but to me, she’s been living with this disease for a really long time. I honestly don’t know how she finds the strength to continue to fight it.

I hate this disease.