Dementia & The Emotional Roller Coaster

One day from the next, you never know what a day holds. And you know what? It makes me crazy!

There are many things I loathe about dementia. But, the emotional roller coaster has to be the worst.

I find I easily adapt to things myself. I also like or even prefer a predictable day. But, at this point, I think I find myself on survival mode. Or even surviving in a fight or flight mode.

What I mean is, one day mom can be doing well. Then, the next morning, she doesn’t want to open her mouth to drink or eat.

If I get mom to eat/drink/take meds, all is well. I get her up to walk around and she is wobbly, or will start cussing objects out (or even me). Although, I rarely get cursed out. But, still, who knows?

Mom doesn’t much slap at me anymore. She doesn’t much punch, anymore. I don’t think she has the strength for that now. But, the hallucinations still reign strong, sometimes.

I wake up expecting the unexpected. Is mom going to pass out today for trying to poop? Is today the day I won’t be able to encourage her to eat? Is today the day she stops drinking? Is today the beginning of the end or are we still going to fight this disease out together?

I wonder if 2020 is it for us. My mother is advancing. I know eventually all my efforts will no longer work. A friend of my grandmother says mom is transitioning.

I’m not sure I see that in her quite yet. But, she’s definitely advancing.

One day, she won’t be able to eat or drink anymore.

One day, she won’t be able to signal discomfort or potty needs, anymore.

One day she won’t be able to get out of bed (nonetheless walk).

I find myself lately going to bed with a lump in my throat wondering what the night or morning holds for her/for us.

I also find myself angry.

I’m angry my mother has dementia.

I’m angry dementia is taking so much from my mom.

I’m angry that dementia is taking her so young.

I’m angry that my mom won’t get to know any future grandchildren.

I’m angry that dementia even exists.

I’m angry that there is no cure.

I’m angry that dementia has ruined her life and that no matter how much I love her, and how well I care for her, it won’t cure her and give her her life back.

I’m angry that all dementia does is take take take.

I’m sad! 🙁

I’m also sad about all of these things.

Overall, I think I’m more sad than anything. What saddens me most is that I’m losing my young mother.

Whether my loss happens this year, next year or 10 years from now, it makes me sad.

I’m also angry/sad at the lack of support. There are very few people in life I can turn to. And oddly, its not the people one would expect.

It makes me wonder, when mom dies, aside for the few people in my life, who will be there to support me through this? Or will I even want it?

Sometimes, I say, when my mom dies I’m going to pack up and leave, and go into seclusion. Some days, that feels like the right decision.

Other days, I say, I need to ramp up my activism and continue to support others through this.

No, I don’t plan to shut down my blog anytime soon. I plan for it to stick around for a long time. But, my mind is always churning. And my pain/grief is real.

I wonder, is there specialized therapy for us caregivers? Does anyone recognize the PTSD that happens to us during our caregiving times? If not, why?

Considering that we caregivers tend to be invisible to the world, I’m guessing, people just have no idea what we endure. I wish they did.

Part of my reason for this blog is to give people a glimpse into what it’s like. I want the people whom are always critiquing us to see, it’s not as easy as they think it is.

I love what I do. I love being here for my mom. I love taking care of her. I wouldn’t have it any other way. Ever. But, people need to understand just what exactly goes into this and the emotional turmoil that resides in us.

What’s your emotional struggle?

Can you relate?