December 5, 2019

I don’t write much about my stepmom anymore. But that doesn’t mean I’m not there with her every single week.

Honestly – I don’t remember the last time I had a good visit with her. The last time she engaged with me. The last time I felt like we connected. When I was discussing this with a friend, I told her I didn’t want to write sad stories every week. She reminded me why I needed to share those sad stories.

Nearly 4 years ago, I began to share my visits with Jane. I did it because we need a cure for dementia & Alzheimer’s & the only way we will get that is by talking about the horrors of the disease. I did it to share the truth of my journey while I watch my stepmom suffer from early onset dementia. I did it so others battling the same disease would feel less alone. So – it’s not fair to stop sharing just because the visits all feel like bad visits to me.

I’ve hesitated to share my real feelings as we deal with final stages of dementia because I often feel guilty for feeling the way I do. But the truth is – it’s how I feel – guilt doesn’t take that away.

I went to visit Jane after work last night like I do every Wednesday. She was sitting at the table & had just begun to eat dinner. I told the caregiver I’d take over. I fed Jane her dinner. She is still able to eat ok – but I often wonder if she even understands she’s eating. She appears to simply do it on autopilot. She opens her mouth & I insert the food. I have no reason to believe she appreciates the difference between the coleslaw & the chocolate cake. I honestly don’t know if she even tastes anymore. Swallowing liquids was hard for her last night. She ended up spilling much of her juice because she couldn’t seem to understand the liquid was different than the solid food & needed to be handled a different way. I will be honest – on days she struggles to eat or drink, I fear she will choke. I fear something will happen on my watch & the family will blame me – that I will blame myself. It’s not a pleasant way to spend my dinner visit. While I absolutely don’t mind feeding my stepmom her dinner, I am always relieved & happy when she is done eating & we can head outside.

Sometimes I can get a smile – or some sort of recognition from my stepmom once we get outside – away from everyone else & in the fresh air. Last night I got nothing. I held her hand & I talked to her. The only thing I received was blank stares. The disease appeared to be the one in control. When she is this gone, I wonder if she knows I am there. I’ve always believed my stepmom was still in there – somewhere – so that’s why I visit. My hope is that even though she is unable to acknowledge me, deep down inside she sees me & she still feels her love for me.

I went to visit Jane on Saturday lunch & also Friday after work. My dad went out of town so I covered his visits. My brother & sister-in-law covered Sunday. I had also visited Jane last Wednesday night. I’ve included my pics from all 4 visits. None were good visits in terms of Jane being present & aware. I didn’t want to go on Saturday. I was tired of the bad visits – of watching my stepmom suffer. But I went – because that is what you do. You show up for your loved ones – even when it’s hard.

Watching someone you love suffer & slowly fade away is awful. There are days it feels nearly impossible. Yet somehow I always seem to find the strength to show up – to be present for my stepmom. But that doesn’t come without a cost. It wipes me out emotionally. It breaks my heart. Other areas of my life suffer. I’m not sharing this for kudos or accolades for being a good daughter. I’m sharing this because it’s the honest, raw truth. I don’t show up for my stepmom every single week because I am stronger than most. I show up because it’s the right thing to do. Life isn’t always easy. But at the end of the day, all you have is your character. I believe it is my responsibility to show up. To be present for Jane. To comfort her. To make sure she is ok. To make her feel loved. If someone Jane loved were suffering, she would show up for them – just as I show up for her.

It’s come to a point where I often hope for Jane’s death. She is suffering. She has no quality of life. This is NOT how Jane would want to live. She can’t really do anything alone. She is in a wheelchair & most days doesn’t speak. When she does speak, it’s jibberish that rarely makes sense. She doesn’t move without assistance. She sits still in her wheelchair or on the couch. She lays on her back in bed because that’s how the caregivers settler her into bed. She won’t rise out of the bed until someone comes to get her & helps her out. It’s odd but it’s been this way for quite some time.

I wish I knew why Jane is still here. This life is such a far cry from the woman I have known for 30 years. That woman was strong & determined & didn’t take shit from anyone. That woman would be embarrassed by the amount of care she requires. She never wanted to be a burden on anyone. So why does she continue to remain in this life – in this body?

Please don’t get me wrong. I’m not saying all who care for Jane don’t happily do it – I’m just saying it’s not what she would have wanted. And who can blame her? I sure as shit don’t want to go out of this life in a similar manner. I’ll never understand why we find it more humane to make our loved ones suffer in life than to slip them some morphine & allow them to pass in peace. Jane is final stages of an incurable disease. How long will she suffer?

I am proud of my dad & how well he has cared for Jane. I don’t know how she shows up for her every day in & day out. I’m not sure I could do it.

And I’m incredible grateful to my brother & sis-in-law for moving to Phoenix to help out. They made sacrifices – big sacrifices – 4 years ago when they moved from UT to AZ to be close & help out. I am so grateful to have them close by to help bring comfort to Jane & help provide her care. One of us in the family visits every day. Jane has more visits from family in a week than many residents have in an entire year. That makes me happy for stepmom & sad for all the other residents.

For all my friends who ask me regularly about Jane, ask how I am doing, how the family is doing, thank you. I feel your love & support & it is greatly appreciated! And to my mom who provides me her strength when I need it & always listens to me speak of Jane or this disease without judgement – it is your example I follow. You raised me to be kind & loving.

Dementia is a horrible disease. It is a disease who hurts not only its victim but their family. It is something no one should ever have to experience. We need a cure!!!

I hate this disease!