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Posted: Monday, March 13, 2023 6:59 PM
Joined: 6/18/2022
Posts: 83

This is that one day we all have that really makes you just wanna die or disappear or switch lives with someone else. For me, it happens maybe once every week and a half to two weeks. I still haven't given up and believe I never will but, she's bad. And I'm in denial. Always. 

I'm here for her. I make her laugh and do everything and she's never afraid here. She's always safe. Even if she doesn't know where she is or who she is and with who she lives with. As her son, it still hurts. Though I know it's not her fault but I'm human. And a very emotional and sensitive one at that. But not so much anymore. Thats a lie. It's happening to me right now. I can stop it quickly, but it still happens. 

I call "Sundowning", "Sunrising" now because it's all day now. And the very worst part of this is you can't explain anything! She just had this beautiful vase of fake flowers and filled it with water. "But mom look. They're not real?" Basic direction/explanation is like the Space Program to her. I want her to replace her diapers every time she uses the rest room. She cannot even grasp that! Take off old one, put on new one (as I hand her the new one). Thats it. How can she not grasp that. I tell her, "I wanna see the old one in the waste basket when you're done"...Never. At the end of the week, she's got like 5 of them on.

She comes to my door 30 times a day in such a panic that I think she's gonna have a darn* heart attack (over illusions in her head) and no matter what I say or re-direct she's back again. The other day I was so tired and frustrated (before dealing with her) that I barked back at her and said some fukt up shyte and it hurt me so deep I can't even explain. It still does. It's like yelling at an infant. Actually, it's worse. So, I bake her a cake and pretend it's her birthday. 

To me, she'll never be better off or doing better at a facility than she is here with me, but is that true? In her case, yes. But I don't like what this is doing to me sometimes. There won't be anything left of me when this is over. Then I'll be expected to pick up the pieces and join society again and thrive in this wonderful economy...at my age. It's like...I just had to test my strength of character and now I'll have to dig even deeper?

At least I'm aware of what's heading my way and that... in itself, should guide me fine into the tornado.

Emily 123
Posted: Monday, March 13, 2023 8:02 PM
Joined: 11/5/2020
Posts: 223


It sounds like she's gotten to the stage where she can't figure out the steps needed, but she's trying.  For instance, she knew flowers need water, she just can't see that they're plastic.  Just tell her 'How pretty' and empty the water out when she moves on.  As for the incontinence wear, it sounds like she's at the point where she's going to need physical assistance if you want them changed. She can't do the steps anymore.  If you're at the point where you're snapping at her, and concerned that you are being consumed by the caregiving, then it's probably time to set up some assistance so you can get out of the house and have a break in your day. Do you think she's too far advanced for adult daycare, if available? 

If she's having more delusions and she's panicky, then  discuss that with her physician so that her medications can be adjusted.  Both of you deserve to have some peace.

mommyandme (m&m)
Posted: Tuesday, March 14, 2023 8:48 AM
Joined: 2/16/2020
Posts: 973

FloydSnax, you are describing me when we were where you are now.  There were quite a few times I lost my shyte.  It was so horrible to feel like “that person” who would “yell at a baby.”  I also sobbed and sobbed and would exclaim I’d never be the same when it was over.  I would eventually shuffle over to her with my tail between my legs and apologize, helped…but still.  This is when the learning curve is so steep that a fall seemed imminent.  I sometimes even felt envy for those whose LOs had passed, gross but true.  But, I trudged on… I too wondered if she’d be better off in a facility.  How was it that I could be trusted with such a huge responsibility?  As time went on and I learned to “accept and adjust” more easily, we settled into routines based on her decline, well I did anyway. This forum helped me so much in understanding the reality of what this disease entails.  Just amazin!  Overall, my mom was happy and comfortable and we laughed a lot. 

Thinking about the practical, I hope you can get some regular help in so you can have some relief.  An adult day care helped us for a little bit.  I did get weekly help in, the only way I could continue to keep her at home. Plan B was always there if I needed it, but she did decline to a point that a facility wasn’t needed.  I can only say that because I got CNA training prior to moving mom here, therefore, toileting her and eventually changing her in bed was in my wheelhouse, kinda.  Not saying everyone needs training to do that but it helped me immensely.  (I got the license for her LTC insurance, but it didn’t help me get paid, still glad I did it). It sounds like your mom needs help now with her toileting and supervision in the bathroom.  Are you going to be able to do that and maybe eventually move to the bed bound diaper changes?  Just wondering about that possible reality.  If not, maybe a move to a facility sooner than later may be good.  Hard for me to say since I’m glad I kept mom home.  My brother would never have been up to doing all of the really intimate stuff and knew it. You must put yourself first a lot… look at the future with your mom and make the best decision for yourself too. 

Hang in there, you’re doing great! You will come out on the other side.  I’m on the other side, although “dementia is carved into my soul” and I miss mom a lot. I am a little stuck but trying to give myself time. 

Posted: Tuesday, March 14, 2023 4:59 PM
Joined: 6/18/2022
Posts: 83


Thanks for your response. And you're right about the flowers. And I know this but it's so hard to detach from the logical when I'm up in it. Though there is no logic with this disease. My mom's 90 and I've tried to fight this battle with meds but now we've tried 3 different ones and they have all failed. And I don't wanna keep drugging her out. I don't know. I believe if she was at an earlier stage of this...I really don't know. I feel defeated. These last two days have been bad, and we've never really had two in a row (really bad). Maybe this is a sign telling me that soon every day will be horrible. 

I do have a sister who comes by once a week and deals with that feminine aspect that I'm lacking at, but I know that's not enough. I gotta figure that out. I've already done like 75% of that and don't know why I just bite the bullet and do it all. I wonder if it would have been different if it was my dad instead of my mom. Thanks again

Posted: Tuesday, March 14, 2023 5:27 PM
Joined: 12/4/2011
Posts: 21306

A birthday cake...absolutely brilliant!!!!!


Posted: Tuesday, March 14, 2023 6:07 PM
Joined: 6/18/2022
Posts: 83


I dont know what it is about you and your responses, but I start tearing instantly. You hit home quite often, I guess. And you're on the other side where I hope to be one day. I picture it as a not to warm day, maybe 77 degrees. In a huge yard, grass for miles. Everyone smiling and a huge tree near the back casting such a shade with a cool breeze....with an empty beach chair just waiting for me to fall backwards on. Someone hands me a cocktail...something fruity...vodka and mango perhaps...I hand the Dj a mixed disk I made and upon hearing it, everyone votes to kick me out and Im back where I started. 

Ah...but I was there. And I tasted freedom

Posted: Wednesday, March 15, 2023 8:38 AM
Joined: 11/7/2022
Posts: 50

Floyd, you sound like a loving and caring son. I have no doubt that any choices you make with your mother's best interests in mind are done out of love. I strive to do the same. In my case, I could not take care of my mom at home. My mom's facility has been a godsend. I do as much as I can for her, and that's all any of us can do. Different life situations dictate different choices. But do take care of you, not just your mom.  Remember that when the oxygen masks drop on an airplane, you have to put your mask on first in order to help your loved one with theirs. That is so important.
mommyandme (m&m)
Posted: Wednesday, March 15, 2023 11:57 AM
Joined: 2/16/2020
Posts: 973

Floyd, I’m still agonizingly trying to get to the beach myself. My mother turned me onto it as a yearly vacation since I was a baby.  I turned my own kids onto it, almost yearly, and now they’re needing the ocean like I do.  My brother made the beach his homestead, lucky dude.  I see your vision and yearn for it too…minus getting thrown out.  It‘ll only come if we take care of ourselves.  Our moms would want that for us no matter where they are now.  Please please take care of you.  Get out today or overnight, take a huge breath and get a drink for me. 

Sending warm, peaceful thoughts and hugs your way.  

Edit: oops, got caught up in the “beach” chair.  Either way the peace sounds wonderful and well deserved! 

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