Battling the Lewies for a peaceful end

I'm laying next  to Casper as I write this post on my phone.  "Next to her" as in she is in her hospital bed and I'm on our bed.  The two are side by side and the rail is down so we can be side by side. It's as close to "normal" as we  can get. Casper holds my hands tightly all night long.

 

Casper has not  one but two CADD PCA pumps attached to her tummy with little plastic ports that have to be changed at least every three days. There are tiny plastic tubes running from each port to a pump on  each side of  the bed. She also has a catheter because she's too weak to stand, and without it skin breakdown would be an issue.  Then there's oxygen running from a concentrator to a nasal cannula.  She  hates that most  of all (every patient does actually). Every time she turns there's something tugging.  And every bit of it is for one thing only.

 

It's the battle with the Lewies. And they are in trenches and battlements deep in Casper's brain. They will not give her any peace. I've seen lots of people die.  I'm not cavalier. Every time someone passes from this world to the next I am struck by  the importance and sacredness of that moment. I'm there to pick up pieces if needed. But it's also usually a time at the end of a decline that includes a gradual slide into the quiet.  A time where grief can happen bedside as the  patient becomes less conscious. There's a peacefulness you can feel. 

 

And then there are Lewy Bodies.  Casper hasn't eaten in multiple weeks. She's sipping water and Pepsi (she's still a Southern girl) via a syringe in teeny amounts.  Anything more and it rockets back up.  She is choking on water. I've seen patients go for a time without both food and water.  But not  like this. Her cells  are breaking down along  with her muscle. And  still she's sitting up talking at  times.

 

Casper has been bedbound for weeks. Today she couldn't recognize her weakness and kept asking to go for a walk. I had to keep telling her she can't walk anymore.  She can't leave  our  room. She can't navigate the stairs. I don't know who it hurt more. I know that memory will never dissipate for me and  the hurt in her eyes will be forever burned in my heart. It's a physical pain it hurts so much.

 

Despite all the meds at very high doses Casper's brain will  not let her rest.  She's not slipping away after saying goodbyes.  She's being put through delusions and hallucinations that are vivid and scary.  She's aware she's not eating and drinking but stops the fluids because of the symptoms that are caused simply by drinking, and because she  really isn't thirsty after only a few cc's moisten her mouth and throat. I've watched many early  onset Alzheimer's patients die.  None were aware of  their family or  their surroundings. Casper comes to and knows she's been delusional. It terrifies her. Now she  won't sleep because she's afraid of  what's happening next. Her startle response has a hair trigger. Nobody should have to bear that in  their last days. The Lewies apparently insist upon it.

 

And so tonight we are well  past Day 21 of Casper being bedbound. Anyone  else would be out of of it with  the amount of  meds she's on. Casper is  still  talking. She's getting more afraid as my bedtime nears.  She doesn't want to be terrified by her own mind.  We are holding hands and holding on, and I am praying that tonight there will be some peace, as there was for a time last night, while Casper fears the ugly events of the night before when there was nothing but terror. And all of us in this house who have been watching this battle, as experts try to find comfort and Lewies fight back, are hoping that at some point Casper will have the peace that the patients she's cared for have found. We want her to have the end she requested: peaceful,  painless, and loved. Now we have to convince the Lewies to allow it.