I am SO tired of AuDHD; vent

CatsWithHandsAreTrouble

I have been struggling so hard with my disabilities as being ASD and ADHD and trying to care for my mom this past year. I keep trying to figure out how I can manage myself while also taking care of her dementia and it's just so frustrating! Any stupid search I do online for any help is for NT PARENTS OF CHILDREN and none for disabled ND adults managing other disabled ND adults.

Mom needs more social engagement but I cannot do that! I've got two disorders that greatly impact any social engagements. It's so frustrating knowing she needs it and being unable to do it myself.

I am so sick and tired of going to bed each night hoping, praying, that come morning I'll have the energy to converse and engage with her only then to wake up the next day already mentally and/or socially tapped out. I have the energy for manual labor but what good is that when the only thing needing done is mental stimulation for my mother?!

And just great! The aide for today just called out. I was so relieved that she was coming but now that's all moot. Ugh.

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harshedbuzz

@CatsWithHandsAreTrouble

I am sorry you are struggling with balancing your limits in the role of caregiver and what you perceive to be your mom's needs.

I would say that all family caregivers are challenged by finding a safe set point between needs, but that a person on spectrum would be more challenged by certain aspects or caregiving. Not everyone, either Neurotypical or Neurodivergent is cut out to be a fulltime caregiver.

Sometimes there's a mismatch between what the caregiver can handle and what behaviors the PWD brings. There are those who can deal the sensory nightmare of incontinence but can't live with the isolation of daily caregiving. Some folks can react with Validation to crude accusations of infidelity with grace while others are crushed by it or react in ways that feed the anxiety of the PWD making the situation worse.

Are you certain mom needs more social interaction? I know that many physicians will state this as a best practice. What I observed was that my own dad-- the very antithesis of a person-on-spectrum-- had a much lower tolerance for interaction beyond his very close family and then, best if one-on-one. TBH, the former social butterfly needed a smaller and less interactive life. Perhaps, you could substitute music for chatter today to ease the pressure on yourself. Or set her up with a simple task if that's something that might work.

If she does still thrive on social interaction, perhaps scheduling her a day program a couple times a week would be a win-win, giving you time to recharge your own batteries and giving her some socialization.

I hope you get through this OK today.

HB

CatsWithHandsAreTrouble

Oh cool, we can tag people now?

@harshedbuzz thank you so much HB. I always appreciate your perspective on things. I am not certain she needs more, but getting some seems to help. I have observed that she is less anxious in the evenings when she has had someone engaging with her during the day. It also helps keep her awake during the day and go to sleep easier at night. She seems to be okay listening to the aides that come in and a few of them can get her to really engage with them (which I've no doubt would be increasingly rare).

Last time I checked, there were no day programs nearby and the travel time going to and from the closest one wouldn't be worth it. Maybe I can look again, it's been a year...

I would so love to set up an activity or task for her to do that she'd like but it's difficult figuring out what'll interest her that day. It's also a gamble on whether she can focus on it or not. It's kinda funny that she can focus on one thing and it'll be a day when I can't, and then the days where she can't focus are the days where I'm focusing on one thing. Just complete awfulness when we both can't concentrate.

Like a lot of people who end up in the caregiving role, I am having a hard time figuring out my limits and such, and doesn't help that I was unaware of being ASD and ADHD until last year after reaching almost complete burnout. I've got a lot of learning to do about myself and it is a struggle trying to figure it out and have people respect that as "it didn't bother you before/I don't have a problem with it so you shouldn't either," is commonly said to me.

CatsWithHandsAreTrouble

@Victoria2020 hi Victoria, I don't think we've chatted in a while, hope you've been fairing as well as you can.

Thank you for your response. I'm afraid I don't understand how it seems I'm trying to fix her when I'm complaining about fixing myself. You're right that I'm probably too hard on myself, I have been for quite a long time and am starting to make improvements on that.

I like your phrase "warm friendly autopilot!" I wish I could do that easily. Unfortunately that's what drains me so much. I'm constantly in that state of mind day after day and then there's days where I can't enter there and mom sleeps all day and keeps dad up all night. That's part of me masking as an autistic person. I'm fairly good at it, too good that I can't actively chose when to start and when to stop and only recently realized that I've been doing it.

housefinch

Sending you big hugs. I am not directly caregiving for a LO with dementia but have a stepdad with it for whom my mom is caregiver.

Cats, your post struck me for several reasons and I wanted to reach out. Many women especially are diagnosed with ASD & or ADHD later in life and have spent decades “masking” and sapping their energy doing so. (I have an interest in this area professionally as part of my career and personally because my 2 children have ASD & ADHD.) My son masks at school & comes home depleted. I had no idea for years and am just now trying to understand this.

Maybe there are some self advocacy ASD online communities with people your age where you could feel less isolated? And more sense of community and not having to explain yourself or be misunderstood? Maybe some members are even in caregiving roles themselves? I mean as an additional support for you around neurodiversity and identity. I don’t know if that might be useful or feel like 1 more thing on your “to do” list. You are managing as a caregiver with extra challenges and I hope you will step back and see what a marvelous job you’re doing. Think of how many people would just give up, even without ASD or ADHD. And your love for your mom is obvious in your post. Please give yourself some grace and kindness.

I don’t know if you have heard of her, but KC Davis’s approach called “Struggle Care” about meeting your needs & getting basic things done when life is very hard—-is a very helpful resource. I have found it really great when my household is chaotic & feels overwhelming. Best wishes to you. And please forgive me if I am speaking out of turn. I promise I am saying this because I feel for you, having 2 beloved family members with ASD/ADHD. Sorry for the rambling post!

CatsWithHandsAreTrouble

No, really, thank you @housefinch no rambling at all. Any words of solidarity or encouragement is appreciated. I am trying to build a better support network and it is slow going. I'll keep KC Davis's in mind (or at least try to haha) and take a gander at it time permitting.

I hope I'm not being presumptuous in your text, it seemed to me you were insinuating I'm a woman. I'm not. My apologies if I misunderstood.

housefinch

@CatsWithHandsAreTrouble

Im really sorry! I don’t know why I made that assumption and feel so silly. Maybe because you seem like a kind, caring, loving son and I just wasn’t thinking. Please excuse me!!! Sending you a virtual hug and best wishes for some peace, contentment, and a few precious moments to yourself.

Iris L.

Housefinch, thanks for mentioning Struggle Care.

GothicGremlin

Hey there @CatsWithHandsAreTrouble

I'm just now seeing this -- I don't have a lot to add, just a virtual hug.

At first, I was wondering what @harshedbuzz said - are you sure your mom needs more social interaction, and then I saw your reply. My sister is somewhat like that too - she needs some interaction, but not too much. It's difficult to find that balance.

Do you have a sense of stage your mom is now? That might help guide you to a level of care... just thinking out loud.

@housefinch I'd never heard of struggle care before. It makes a lot of sense though.