Just finished a trip to see Mom. I hope it's the last one.

syrac818

She's in the end stages now.  Extremely limited verbal ability (maybe one word or two), unable to walk or stand, mostly keeps her eyes open even when she's awake, sleeping maybe 14-16 hours a day.  Her body has become much, much more rigid. She still smiles and laughs, and is in the best possible care she could be in.  In a way, she finally seems "peaceful" - as odd as that sounds.  The main caregiver said she thinks she has maybe 2-3 months left. 

I think I want this be my last visit.  This has been 10 years now.  I saw when I first started posting here under an old username - almost 10 years exactly.  I'm now 41, so for a quarter of my life I have been watching my mother and my best friend slowly, steadily decline.  It has absolutely defined my existence, it's something I think about every hour of every day.  Of course I tried not to, but it's a dark cloud that has stayed with me through all of this.  I know nobody handles losing a loved one to this cruel disease particularly "well", but I feel like I handled it especially bad.  And I wasn't even her primary caregiver.  I remember in the early years feeling like if I just tried hard enough I could make Mom better.  There had to be some way to cure her, some unique combination of things that just hadn't been tried yet.  It wasn't just something I hoped for, it was something I needed to do.

And I couldn't do it.

It's truly painful to look back on these ten years.  It's like a whirlwind of medications and special diets and books and special "friends" we would hire and neurologists and memory care units and family meetings.  And loss.  So, so, so much loss.  This disease is relentless.

When I said goodbye this morning, she was smiling.  She laughed about something.  She held my hands and did that thing where she sort of shakes them.  She was ok.  And I desperately want that to be my last living memory of her.  I've come to become pretty much an atheist as I've watched this disease take my mom away, but if I can get just one prayer answered it's that she passes soon - very soon.  While she is still able to form that slight smile. 

Stuck in the middle

From your lips to God's ears, syrac818.

terei

You described much of what I felt during my mom’s decline.  Thankfully, hers was over only 4 years + not 10.   My mom did not talk for the last year or so of her life, but did also do that hand shaking thing, which I recognized as her happiness at seeing me.

My experience with her has caused me to give strict verbal + written instructions to my own daughter about my end of life choices.  Hopefully I will be able to have the confidence to end things on my own before I ever experience the hell my mother did.

MN Chickadee

I'm in a similar position and feel the same way. I'm in my late 30s and my mother has had severe Alz for 10 years, and memory loss for 20 years. My entire adult life has had the dementia cloud over it. She is mostly non-verbal and losing weight and immobile now. She does smile when I come still. Every time we have a nice visit I secretly hope it's our last. I want to remember her this way. I don't want to go through active dying with her. I don't want her to continue on this way because she would not want to, I am certain of that. I wish she would pass suddenly and leave this all behind. People whose lives haven't been touched by dementia cannot fathom how awful, unfair, cruel, and grueling it is. In my case it feels endless. Hugs.

syrac818

Thank you for the replies.  It's helpful - but heartbreaking - to hear other people are experiencing the same thing.