November 14, 2018

Watching someone you love deteriorate before you is gut wrenching. It breaks your heart in a way nothing else can. You feel helpless, angry, sad & confused all at the same time. You wonder how you will make it through, yet somehow you do. There is a strength inside you didn’t know existed. You keep showing up for the person you love because you know they would do the same for you.

I’ve shared this before but I will share it again. When someone you love is attacked by a terminal disease, you realize there is something worse than death. It makes you wish for death, which in turn makes you feel guilty for wishing that. For those who have never experienced this, my hope for you is that you never will. That you will never fully understand how I feel as I watch my stepmom slowly taken away by dementia. For if you understand how I feel, it means you have suffered the same heartache.

Jane was slumped over in a chair at the kitchen table when I arrived today. It was just about lunch time. When I sat down next to her & took her hand, she opened her mouth for food. I’ve noticed she has done this the last few visits. Is she hungry? Is her body simply on autopilot & sitting at the table means food? I said her name & she looked deep into my eyes. She recognized me & smiled. It was a warm smile & it melted my heart. Jane was present today, but her body was fighting her.

All through lunch, Jane kept trying to sit up better, but she simply kept falling back down. She was leaning very far to her left & sitting straight up seemed impossible for her. She ate well for me, but I wondered if she was uncomfortable given that she kept trying to sit up more. She doesn’t normally do that. I had a new flavored cupcake today, but my stepmom didn’t seem to notice. She ate every bite, but it didn’t seem to bring the joy it used to. Why is this? Did she not like the flavor? Does she no longer notice the difference in her cupcake from her lunch? Is something else going on? I watch her like a hawk when she eats, afraid one day she will refuse to eat, or worse will choke on her food. We don’t understand how this disease impacts her – what ability she will lose next.

After lunch I grabbed Jane’s wheelchair so we could go outside. Standing up from the table was a challenge today. I don’t think she was fully able to stand up today. Emely had rushed to my aid & we safely got Jane moved to her wheelchair. She fell to the right & was falling forward – I believe because she was leaning so far to the side. We didn’t go far when I stopped because I was worried by the way she was sitting. I was afraid she would fall out. Patty (the head nurse) was outside & saw me. She came to check on us & suggested perhaps a pillow would help Jane to sit up. She rushed to find something for me & we compromised with a rolled up blanket. It was enough to hold Jane in the chair, but we were unable to sit her upright. I asked Patty what was causing this – were her muscles atrophying? She said simply, she is deteriorating. I’ve never heard anyone at the facility state this so clearly. Yet I agree with her & appreciate her frankness. Our job is to keep Jane comfortable & part of doing that means being realistic to where we stand.

I wheeled Jane to the trees & sat next to her. She needed me for support so we sat side by side today. Jane put her head on my shoulder & held my hand. I leaned my head against hers & cried. I think Jane was crying too. She is no longer able to shed tears, but she makes sounds. Jane then babbled on for several minutes. Nothing she said was understandable but she clearly had something to tell me. I listened & held her hand tightly. When she was done I asked her to stop fighting. I told her death was nothing to fear, that we should still be connected & that she will see my dad again. Because let’s be real – it’s my dad she holds on for. I feel comfortable she knows her kids will be ok. And while I don’t think she wants to leave us, she knows that is inevitable. She knows we will take care of one another. But her love for my dad is strong & that connection she is struggling to let go. I can’t even begin to understand how that feels – to be trapped inside this disease unable to tell her love what is on her heart. I hope my dad knows how much he is loved by his wife & I hope that brings him peace when she does leave us.

I hate seeing my stepmom this way. This is not the life she signed up for. And I know this is not what she wants. So how do I help her? How do I stop her suffering?

Dementia is a horrible, cruel disease. And it comes in many different forms. There is so much we don’t know about this disease & each case is unique, making it challenging to predict what will happen. Sure there are similarities but there are also difference. I watch the people who live with Jane & while not all have dementia, the majority do. And each person I watch, it impacts differently. Some die quickly, while others, like my stepmom, seem to fight the disease longer. I can’t tell you why nor will I say either patient suffers more or less. We need a cure. We need to invest in research & we need to talk openly about this disease so we can find a cure.

I hate this disease.