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I recently asked a question, and the responses I appreciated, I have a lot to think about… but until then, I have one more question I hope you guys don’t mind me asking…


I am my biological grandma's (who adopted me) primary caregiver. No one helps me as I’ve explained in my previous post except one woman that my uncle, who physically can’t come anymore at this time, has hired to help me.



So Monday-Friday from 8:30ish am - 2ish pm someone my uncle hired comes in and does my mom's meds, food, toileting, dressing her, gets her up, etc.



Usually I am up all night, because like a few moments ago she may need me. And if I don’t hear her, she will do it herself and that’s dangerous atm…



So initially I was trying to nap during this time. I’ve never needed much sleep, but, lately I just break down and cry.



If I am awake, even if this lady is here, my mom expects me to come out, and so does the woman I think, because she says my mom always asks where I’m at. I know what it’s like to be abandoned and I don’t want her to feel sad or scared, so I typically go out there.



I guess I don’t need to share with u guys how hard it is just to see your mom in the situations we do, but it isn’t just that. I can’t focus on anything else because the tv is so loud and that’s my fault; I make sure she can hear it. I’m not complaining or not trying to complain about her, I just…



well like this Friday, I’ve arranged for this woman (idk what to call her) to take her to see her 1 son who used to come but no longer can due to a severe medical problem.



the last 3 weeks she’s had a date to see him. But unless I go, she won’t go. I’ve tried to “spring it” on her last minute that I am “feeling too unwell” to go. She made an excuse and wouldn’t go.



she loves her kids, especially this son, as he is the only one who has helped or come around. She always loved him. Idk why she won’t go without me?



last time I drifted off and didn’t have her up before the lady helping us arrived. I heard her come in, and assumed if I just stayed in bed she’d get her ready, and they’d go, and I could have some alone time.


she couldn’t convince my mom it was that day they were meant to go.



i really just need some time to myself; how can I tell the woman who helps during the week this? How can I get out of having to go with my mom for her to go? She knows this woman well and trusts her; it’s me, after my dad… passed, she’d do the same unless I didn’t tell her until it was too late. That doesn’t work anymore.



i feel so bad asking. But does anyone else have any ideas on how I can ask this and not sound horrible? I can’t drive, and I’m in a small town now. I .. don’t know, I’m sorry I know I’m annoying but I thank u guys for listening… thank you 🙏 im truly sorry if this was selfish or bad of me… thank u 🙏

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You're not at all annoying but your situation as described on your profile page is very worrying.

You are self-harming as a way to cope with the stress of caregiving? Um.

Not wanting to go with your mother and her aide to visit your uncle seems like a side issue.

But as you ask how to solve that particular problem: this Friday, go. Walk the aide through all the detail of how to settle your mother in the car, find the house, enjoy the visit, come home again. Don't do any of the routines, just stand by to answer questions and demonstrate anything that needs demonstrating. At the end of the visit, encourage your mother to thank the aide and appreciate that the aide is able to manage everything safely. Next time, say the night before, remind your mother that your uncle is looking forward to seeing her, that the aide is very capable, and that you are sleeping from 08:30-14:00 because you're on duty all night. If your mother then won't go without you, that's up to her and not actually a problem.
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Usedmisfit Apr 2022
Thank you so much!!!!
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Agree. Go slow. Build a bridge of trust between your Mom & the new 'friend' (or whatever you decide is her title).
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"if I am awake, even if this lady is here, my mom expects me to come out, and so does the woman I think, because she says my mom always asks where I’m at. I know what it’s like to be abandon and I don’t want her to feel sad or scared, so I typically go out there."

This is unsustainable, when you are sleeping this aide needs to do her job and you need to allow it - "she's still here but she's having a little sleep right now, I can look after that for you". You NEED your rest

https://www.healthline.com/health/sleep-deprivation/effects-on-body

Think of it this way, it will be so much easier on all of you if you cede control now than if it is wrenched from you because you physically or mentally break down.
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Your description of how your mother doesn't want you out of her sight, or even leave the home temporarily without you is called Shadowing, and is a symptom of dementia. So, the question is: why are you allowing your LO with dementia (and a diminished ability to work from logic and reason) to call all the caregiving shots? She is no longer able to care about how it is destroying your young life.

Is your uncle the PoA for your grand/mother? If so then he needs to find another caregiving solution so you can move on with your life. You moving on with your life is not abandoning your LO. No amount of you staying awake and being ready to catch her if she falls is going to stop the trajectory of aging and decline that happens with time. It won't improve or stop her dementia.

Stop trying to explain things to someone with dementia. They can't process it like in the years when they didn't have dementia. You won't be able to get buy-in or agreement from her if she's shadowing. Therefore, you make yourself a priority and do self-care. At the very least you should be talking to a therapist who will help you identify goals and boundaries, and learn how to defend those boundaries. You aren't responsible for your grand/mother's happiness (or your uncle's or anyone else's). No one gets to make you a martyr without your willing participation. Also, how will it be helpful to your grand/mother if you keep on this unsustainable track and then crash and burn? Then what? So you see: you must make yourself a priority. Put on your own oxygen mask first, then you can help others -- if you choose. May you gain clarity, wisdom and peace in your heart!
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Usedmisfit Apr 2022
I don’t have time to write a proper reply to you or anyone but I plan on returning to lol I just wanted to say thank you… your understanding of my situation and talking to me as one caregiver or person who understands to another makes me feel stronger & not as insane as I did before, and as some comments have made me feel. I appreciate u and anyone else’s kindness ♥️🙏 I will reply properly asap :) I just wanted to say thank you
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Hi, again, Used:
I believe in my last response to you I suggested that there is nothing unusual or abnormal going on here other than your own response to all of this. That is troublesome.
You are continuing to label yourself, and are now having some behavioral side effects that are very worrying.
You really need to seek professional help of therapy.
Few here can give you anything other than insight into what is happening in your Mom/grandmother's aging brain (Geaton's telling you about shadowing is so excellent.)
We can give you sympathy or reassurance. However, we are not professionals, and I doubt we can be any use other than a bit of "comfort" here and there.
So once again today I am suggesting that professionals are there to help us when we must have help. Whether MD, Attorney, Accountant or Psychologist, there are times a Forum cannot inform you and may MIS-inform you.
It's my opinion that your grandmother/mom should now be in placement; this is especially true if self-harming is a part in this.
This is not working for any/either of you.
Please get professional help. I am so sorry for your grief.
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Usedmisfit Apr 2022
I have professional help weekly. Ive Been self harming since I was 4 and I’ve had it since I was 6. I’m sorry my presence seems to bother you, I am open but I am not looking for professionals instead others who care.
im sry I am being rude, but I actually felt people here were very kind and accepting; and. I’m sure in ur own way u meant this in a positive way, but I’m sorry it’s only caused more pain. Talking to ppl here has helped far more than my weekly visits to any one of the professionals I see.
but truly thank u for writing I know u did it with good intent, I just wanted to let u know that in life I’ve got all that. What I am hoping for here is understanding; not judging please.
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I will reply to any msgs soon, I’m limited on time atm but I appreciate every kind msg ♥️ Thank u guys.. I’m difficult I know but accepting me as I am means far more than I can. Say
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Let's call the lady who helps out the Caregiver, or the CG for short. Let the CG know what YOU need; some time to yourself to sleep, and for her to stay with your mom without calling for you during her shift. Yes, mom may get upset and/or angry, but that's okay because she's safe and that's what counts. It's very important for YOU to get some rest here too, otherwise you will break down HARD and that will be bad for mom, in the long run. You won't sound horrible if you ask the CG to help you get some sleep, and to please just keep mom distracted during her shift, and out of your hair for the duration. Put in some ear plugs while the CG is caring for mom, lay down and SLEEP! You know that all is well, so just relax and allow yourself to rest during those hours that CG is in the house with mom.

If mom doesn't want to go out to see her son, then the CG probably won't be able to convince her to go. When dementia is at play, the elder can get VERY stubborn and insistent about things, even when they don't make sense. Try to let it go. If you want to visit him with mom, then go, by all means. If not, stay in your room and tell the CG to stay with mom and keep her occupied while you rest. If you feel rested during that time period, then go OUT of the house and get some fresh air while the CG cares for mom in the house.

Demented folks get very upset at times very easily; that doesn't mean there is something YOU can do to prevent it from happening. Mom will get upset and then it will pass over and she will be fine. If you jump to fix every issue she has, you will wind up making YOURSELF sick and mom will still get upset b/c she has dementia; that's how the disease works. So pick your battles. Allow her to get upset sometimes while YOU take care of YOU, you know? You are not a bad or horrible person for doing so; you are human. Remember: if YOU break down, then what happens to mom? You can't have that happen; so take the time to nurture and care for yourself properly to avoid it. When you feel the urge to self-harm, you KNOW you're reaching the end of your rope and it's time for a break. Use the coping techniques your therapist has taught you, and rely on the CG to give you respite, even when mom gets upset.

You are not difficult and your questions are valid. You are welcome to come here and ask away! You have a lot to deal with b/c taking care of someone with dementia is VERY HARD. You have a lot of love in your heart for your mom and that's a beautiful thing. Blessings to you as you travel this difficult road. Wishing you all the best.
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Alva meant no harm. She is a retired RN so a professional.

I understand that this Grandmom has been a Mom to you. But maybe you are not the one who should be caring for her. The stress cannot be good considering you harm yourself. Your family needs to come together and find another option. Maybe time to place Mom.

When the lady comes, you leave. The weather is getting warmer. Do u have some kind of park where you can take a lounge chair and nap? Your Mom has a Dementia according to your profile because of this you are not going to get her to understand your needs. So have a talk with the aide. Tell her you need to be able to rest when she is there. You can't continue to go with them. You need to sleep. So the "aide" needs to redirect Mom. Like when Mom wouldn't go to her sons without you. The aide tells Mom that you are trying to get something done and said for her to take Mom and you will follow a little later. Hopefully Moms short-term is bad enough she will get to sons and forget all about you. If she comes back and asks what happened to you just say you got tied up and lost track of the time. Because you can't reason with Dementia you have to tell little white lies. And Mom is not abandoned. She has an aide caring for her. And when Mom asks about you, its the aides part to say "she went out for a while and will be back shortly"

I would call Moms doctor and ask if she can be given something to help her sleep thru the night. Then you need to take the time the aide is there for you. Get a bike to get around. Go to the library. Sit in a Church where there is peace and quite. Stop and have breakfast at McDonalds. You cannot allow yourself to be stuck in the house. When people come to visit, use that time for yourself.

There is a book called Boundries by Townsend and Cloud. Not sure if it will work with someone with Dementia but may help you in other aspects of ur life. You need to be able to grow up and mature. To find your own way in the world.
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