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Young caregiver here unable to work, full time caregiver to terminally ill brother and disabled mom


Hello. I need advice, please. My situation is a little bit different, so please bear with me as I have to explain a few details.


I am a full-time caregiver for my brother and now do many things for my mother as well, as her physical condition has worsened with age.


My adult brother is terminally ill and completely disabled, needs help with reaching things, bathing, reaching food to his mouth (no tube), and diaper changes as he cannot use a toilet.


I noticed my mother within the past 5 years has gotten forgetful. Over time it's gotten noticeably worse. Within the last year, I've been providing more care for her than usual as she had double shoulder repair surgery. Within this time, her memory's gotten worse and now has become verbally and physically aggressive towards me: throwing things, taking things from my hands, hitting me, pushing me, and spilling water on me when I'm asleep and can't wake up (I have a sleep disorder but she never used to do this). She's also shown verbal aggression towards my brother, saying he's enabling me when he stands up for me. I've asked him to ignore her but I know it's hard for him to not be able to do anything while she screams at me and threatens me (and in turn his survival).


I don't have any family or friends to turn to for help or a place for my brother and I to go to; we also have pets, which I don't want to abandon.


I can't stay with her anymore. When she's worked up, which is nearly on a daily basis, she threatens to call the police and have me removed from home and get me arrested for elder abuse. She tells tales of events, whether it's fights or stories of fond memories when we were young, that never happened. She stays on Facebook for almost all the time she's awake, telling said stories, and sleeps for short periods before waking and staying awake for sometimes a couple days at a time.


As far as DHS, we don't have many real resources where I live; the mentality (though I'm sure not all people are like this but there are too many) as an example many people have "suggested" stopping giving my brother life-preserving meds and letting him die "because it's God's will." I have nothing against faith, but suggesting basically killing someone is unconscionable. Please believe me when I say the mentality is very backwards here. Social services has been weaponized against us in the past (when mom's mind was stable). We were clean and fed, but people tried to separate us anyway (just one e.g.: one person who called DHS was known to be drug addict who was mad at us for not giving them my bro's medication and went into a fit of rage). We were nearly torn apart; this is but one example.


I have no job, no GED, nowhere to go, no money (and at my age it will be difficult getting authorities to believe me if she does get them involved when she goes into another rage episode) and I don't know how to approach this without her kicking me out. If my brother doesn't get the care he needs, he'll die.


Is it possible she has early-onset dementia? At first I was thinking maybe a personality disorder but it's so sudden; she never used to be this way. She's a completely different person.


I don't know if I should slip her Dr a note with concerns and just ask if they could nonchalantly bring up doing a test and give some kind of excuse to persuade her to take it, but I fear instead because of privacy laws, or because they don't believe me, that they'll just rat me out and I'll wind up homeless and my brother will wind up in a nursing home, and the pets will go to a shelter and be killed.


I and my brother are planning to move out, somehow, but have no money, no job, nowhere to go, and she has ownership of the handicap modified van w/ a hydraulic lift.


I'm scared, and I don't know what to do next. If she has it, get her dx'd for sure, hopefully get power of attorney or w/e, but I don't know how to do it without setting her off, or tipping the wrong person off and getting us separated.


I am 19 years old.

So... You want to be rehoused along with your brother so that you can continue to be his primary caregiver. Is that the bottom line, roughly?

You say that your brother is terminally ill: is hospice involved?

I personally feel that your mother's behaviours could be quite easily explained by stress and physical pain, and given the family situation it would be beyond impressive if she weren't going a bit nuts. It *could* be early onset dementia, but I think other explanations are more likely.

You're scared? I bet you are. What you're going through must be terrifying.

It must be incredibly difficult for you not to fear the worst about *everything*. Take your pets as an example: nobody wants to leave their pets behind, that's bad enough. But there are animal rescue organisations, there are rehoming services - don't immediately visualise that they will all be put down.

If your experience of social services was not good, I realise it's going to be difficult for you to trust them again. Do you feel like sharing more about what happened when you and your brother were looked after before? When was this, how old were you both?
Helpful Answer (2)
Reply to Countrymouse
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I would suggest documenting her behavior. Keep a diary of things she has said/done with dates. Voice record her, and if you can, video record her. You need evidence to protect you, your brother, and your Mom from herself. This will also help the doctor or any other authorities that get involved understand the situation better. You can call the doctor and explain the situation, but it might be tough to convince him/her without proof.

If this change of behavior is caused by illness or dementia, then it is not her meaningfully doing these horrible things. The illness is causing her to do this. Treat the illness correctly, and these symptoms will go away or at least be better managed. Wishing you all the best!
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Reply to JuliaRose
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Your Mom needs to see a doctor. She could have a bad urinary infection. The only way to find out is a urine sample. Yes, it could be Dementia but other things can be causing her problems. Call her doctor now.
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Reply to JoAnn29
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As an addendum, thank you for reading, and I apologize if I came off as rude or disrespectful in any way - as well as any syntax or sequencing errors; I'm very tired and have a limited amount of characters.

I love my mother very much, but something's changed and it's like I don't even know her anymore. She's cruel and calls me horrible things. She calls me "f***ing retarded" on a daily basis. She's impatient and I can't get her needs met fast enough. I did a bit of an experiment and timed in between tasks how long it took to get them done, and she insisted it took six times as long, consistently. I don't know what to do, and now I apologize compulsively
(I'm tempted to even apologize for that, too).

I'd see a counselor (I would actually like that because I'd have someone to talk to) but they're legally required to report abuse, and with the situation I'm in, I have a legitimate fear that this would take an already bad situation and make it worse (please see above post).

Thank you for any and all insight, and I wish you and yours the best on your journey with caregiving and receiving, as well as any other struggles or complications you may be dealing with. Sometimes all we can do is take it a day at a time.

Take care and best of wishes.
Thanks, again.
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Reply to IsItDementia
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katydid1 Jan 15, 2019
You did not come off as rude or disrespectful. Quite the contrary, you are very eloquent and stated your situation, challenges and fears very well. And my heart is breaking for you!! You DO NOT deserve such a heavy load at such a young age, and I think you must be one of the most amazing people I have ever encountered to be doing what you are doing!! I wish I had answers for you, but you are right about most of things you are worried about. Unfortunately, CPS does sometimes make situations worse, but I think you may end up needing to report your mom's behavior, because she doesn't have the right to treat you or your brother the way she does.
Does she have dementia? Maybe. She may also have had a breakdown because she is losing her son. Sometimes, anesthesia has long term effects on people or it can "unmask" dementia. Could your mom possibly be using drugs?
Whatever the cause, you and your brother can't continue to live the way you are. Please DO see a therapist and talk it out. I understand your concerns, but you have to have someone to help you figure things out. If you can get out, is there anyone who could give your pets a stable home?
 Please keep us updated on how you are doing. I will think of you often and include you in my prayers.
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