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I am a 55-year-old female taking care of my mother. I purchased a house with a next gen suite so she could feel some independence even though I have to do everything for her.


I need some space because she has been with me for 10 months. I can’t leave her at all! My siblings are both narcissists and have not helped financially for me to get a break. I got limited assistance from the state for a short time.


She walked in on me in the tub the other day saying she was worried. I got super mad and told her it’s my private time and she shouldn’t think it’s ok to just walk into my room. Last night I was throwing things out and started speaking with a neighbor in front of the house. She called me because she was worried. I have given everyday to her, I do everything for her. I have given 100% of my life to her and I am exhausted!! I have grown tired of her disrespect and failure to speak to my siblings about helping. They both have times of money and a double income. I have never been married and have a limited income now after being diagnosed with MS. I am so resentful and hate what I have allowed.


My sister has made up lies and my brother is her flying monkey… it’s sickening and I need peace in my life.

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Hi Exhausted. I am sorry to hear that you are trying to be kind and live peacefully with such a load to carry.
Can you tell us about your mothers health? Do you feel that you must be with her all the time because she cannot be left alone safely?
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Exhausted55 May 2022
Hi,
last time I left her alone she thought she saw something on the floor reached for it( she has been told not to reach) and fell off of a chair and broke her collarbone. After that I have not left her alone. It’s been since 19th of December 2021 that she has not been able
to be left alone.
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You are doing a difficult thing and are on the verge of burnout. You don't really pose a question but it's probably: "How do I get my life back while caring for my mom?"

You are in vast company here on this forum!

How old your mom is? What state are you in? This matters because someone on this site from your same state and area may know what resources are available, as they differ by state, as does Medicaid rules.

IMHO you will need to release any expectations of your siblings providing any help. You can't control them, make them do anything. If you keep expecting them to be people they obviously aren't you'll drain your emotional energy that you need to save for elsewhere.

Your mom is showing signs of cognitive impairment/short-term memory loss and demential. It is very important that she has someone who is her PoA to advocate and help her manage legally. You should consider taking her to a certified elder law attorney to create this document IF you wish to be her PoA and she wishes to assign you as such. The attorney interviews her privately to determine her ability to comprehend (not remember) what as PoA and the impact of her assigning one. If you get this far, the take her to her physician and request a cognitive/memory exam and also test for a UTI for good measure.

Also very important will be educating yourself about dementia and memory loss so that you can engage with her in less frustrating ways and understand that what she does going forward is not coming from a well mind. Dementia robs people of the ability to work from reason, logic and empathy -- hence the trashing of boundaries. Her coming to you because she's "worried" sounds like the demenita behavior called Shadowing. FYI shadowing usually progresses and she may start screaming your name even when you disappear into the next room. My Aunt does this. I learned a lot from Teepa Snow videos on YouTube. I highly recommend them (there are excellent books also but I've no patience or time for reading books when I can get the same info from a more brief video).

It sounds counterintuitive but you may consider having a meeting with your siblings (without your mom) and let them know the situation. Make sure you keep things informational and unemotional. Let them know what you've learned, point them to the same videos you watched, then discuss what you are and aren't willing to do on a daily/weekly/monthly basis for mom. Then look your sibs straight in the eye and ask them if they're willing to do this, this, or that. This transparency gets everything out on the table and now they can't say they didn't know "how bad" things were. They may decline helping in any way. They may say yes and then not show up. Give them 1 chance and then cut them out as much as possible if they are being disruptors.

You will also need to understand there is no romanticized version of caregiving. It's hard hard work and destructive if you don't get your perspectives and expectations realigned with reality. You will need to be mentally flexible (as in: "I'll never put mom in a terrible horrible nursing home"). A good facility (at some point) may be the only thing that saves your sanity.

You should also consult with her accountant, financial planner or an elder estate planner and a Medicaid Planner. In most states Medicaid has a 5-yr financial look-back period. She may never need Medicaid but many elders do and it's one option that you should preserve as best as possible.

Lots to ponder and you'll get a lot of excellent guidance here from people who have been there, done that. I wish you much wisdom and peace in your heart!

Some resources: your local area's Agency on Aging; social services for your county (online ususally under the Dept of Health and Human Resources/Elder care)
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Exhausted55 May 2022
I am an RN and aware of all the above… I am her medical POA
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Geaton777: "you may consider having a meeting with your siblings (without your mom) and let them know the situation. Make sure you keep things informational and unemotional. Let them know what you've learned, point them to the same videos you watched, then discuss what you are and aren't willing to do on a daily/weekly/monthly basis for mom. Then look your sibs straight in the eye and ask them if they're willing to do this, this, or that. This transparency gets everything out on the table and now they can't say they didn't know "how bad" things were. They may decline helping in any way. They may say yes and then not show up. Give them 1 chance and then cut them out as much as possible if they are being disruptors."

Excellent idea! And then when you know for sure that they aren't going to help in any way, start backing away yourself. Do you think it is right that YOU are left doing all the caregiving? They are all okay with this (including your mother), but that does NOT mean it's okay. They are all saying with their actions that YOU don't matter.

Did you use your mother's money to purchase the house? What are your mother's finances? Can she become Medicaid-eligible? What sorts of things do you have to do for her?

YOU MATTER, even if no one else in your family thinks so. You do NOT have to be her caregiving slave.
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Exhausted55 May 2022
First of all both of my siblings are narcissists. They know the situation and all they do is make up lies about me and they just plain don’t help. One lives far and is more then capable of helping financially but my Marc sister told him my mother pays my mortgage. I pay my own mortgage, never has she!!! I purchased this home with my own money! Mom has nothing but social security… she doesn’t even have a savings account! I have helped her financially my entire life until my Narc siblings stuck me with 24/7 care to pay in my own in the amount of 14,000 and then some. It was after that everyone said stop or they will NEVER help her. I have helped since then but not like I used to. She contributes to the food, daily things she has to use, electricity, water and that’s that. As she should… I can’t afford to support her too. I have been putting out money for caregiver because I need to run to the store etc…
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Exhausted55, I wish I had something to add to help. Just wanted to reach out because your story is very similar to mine. I bought a home with a small separate home attached for my parents. We’ve only been in the property a few months and are still trying to work out boundaries. My siblings live too far away to help. I hope they will be available for respite at some point but I doubt it will happen. The hardest thing for me is dealing with the fact that I allowed this level of stress in my life and am continuing to allow it to smother me. I do know that this living situation is most likely temporary. I know where my hard lines are for caregiving and will find a safe care facility as soon as it looks like those lines are closer. In the meantime, I’m with you. I need to figure out how to have some peace in my life in the midst of caring for someone else’s. I do have a husband who is supportive but it is exhausting. I cannot imagine doing it on my own as you are. Adding your own health issues to it is even more difficult. I hope you’ll be able to find support here and in your local community. You deserve peace in your life.
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So basically you don't have much use for any of them......Mom or siblings?
Does your Mom have dementia? You say "I can't leave her at all" which makes me question whether there is dementia. You have told us in prior posts you are an RN. How are you working at all? I believe in other posts you have mention MIL instead of mother? If Mom is actually Mom-in-law, is your husband involved in her care?
If Mom does have dementia, I know you knowit is a disease that disables the brain enough that there are no social inhibitions; that rules out boundaries often enough.
As to boundaries, they are up to you to set. They get explained (if dementia is ruled out) and you require that, in order to live with you, they be respected. As an RN myself, I loved the work, but I was clearly aware every second that I would in no way be capable of doing in home care for family 24/7; I can't imagine how the heroes among us do it. I never would have taken it on.
My advice to children (of ANY elder), unless they are wealthy and/or WELL ABLE to afford to use their own money in the care of parents, they should attempt not to do so. They will need every single penny they can save for their own elder years.
I think that from all you say you now have your own disabilities and your own life to deal with. You are only 55 and far from even early retirement. You diagnosis will make your choice in job as RN demand a less stressful situation, hence will be harder to find, but I think you will need to work.
I think you should gently and firmly explain that to your Mom and that the arrangements for her to move (if able to live alone) or to move to care be discussed.
I am sorry for all you are going through. It would be perfectly normal, with all on your plate, for you to be frustrated, but I do think your attitude won't be helpful in getting others to choose to engage with yo, in the care of your Mom or otherwise. People tend to shy away from frustration.
I hope you can find some good and qualified support for a little therapy dedicated to you and you alone to try to comb out how to deal moving forward.
Again, I am so very sorry for all on your plate and I wish you the best.
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BurntCaregiver May 2022
Dementia or not there has to be boundaries, Alva. A person cannot physically be by someone's side 24-hours a day. Nursing homes and memory care facilities do not assign aides to stay next to someone 24-hours a day because they shadow.
The OP might want to look into installing cameras in the in-law apartment her mom lives in. Then a lock so she does not have access to the main house any time she wants.
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dear OP,
:)

huge hug from me!!
it's very tough.

"I need peace in my life"

yes! and you WON'T get peace from narcs. narcs will be narcs - they won't stop.

you need some other way to escape this prison/trap. it's not the narcs who'll help you get out (they're glad it's YOU who's in the trap). many of, in various ways, are caught in a trap (someone dumped it all on us).

we're kind, but as a consequence we're sort of trapped. someone who has no conscience (towards their elderly parents, or towards other family members), is totally "free" - they don't care; they wake up, enjoy life, eat nice food, go to sleep; repeat the next day.

"My siblings are both narcissists and have not helped financially for me to get a break."

of course there are exceptions, but it is often the case, that wealthy people are greedier, more selfish. poorer people are more selfless, altruistic (in fact, they may even be poor BECAUSE they so kindly, selflessly gave years of their life to family, or the community, or the greater good).

----
solution?

"I am so resentful and hate what I have allowed."

hug!!
1 thing i find that helps, is to envision one's destiny.

you see, some destinies are VERY easy to predict. i can EASILY predict mine, if i continue doing as i'm doing now. (in other words, TOTAL DISASTER for me). soooo, i know i don't want that destiny. in order to avoid it, i see i must do X, Y, Z.

look ahead OP: how does your life look if you continue 10 months more the same, as the past 10 months? easy to predict, right? find some way to avoid it. i know, that's in fact your question - how to stop that. only you know your whole situation. do all you can to stop the predictable destiny.

warm hug!! we're many in your situation. many who must make a change (whatever that change is).
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You have posted a couple of times before about Mom and have been told to place her. You have MS. The strain you are allowing Mom to put on you is not helping your MS. You promised not to put her in LTC as a child. You had no idea that you would contract this desease. You had no idea what caring for someone 24/7 meant.

Its not that Mom has no boundries its that she is not honoring your boundries. How could she walk in on you if the door was locked?From what I read from your other posts, you are allowing her to step all over you. You need to stop looking at her as the mother you are trying to please. From what you have written, that will never happen. Stop allowing her to manipulate you. You bought a house so she had an area of her own. Its time to sit her down and look her in the eye and say "If u don't want to be placed in a NH, you are going to have to abide by my boundries. I bought this house so you would have a suite of your own and I would have my area. For this arrangement to work, you must stay in your part of the house or I will have to place u into a NH. Because Mom, I just cannot continue to put up with you not honoring my needs".

From what you have written you have pretty much supported Mom. For that, she owes you. YOU have tried to give her a comfortable life that she does not seem to appreciate. And I would tell her that. And I would dangle that NH over her head because I am sure she would do that if the tables were turned. Tell her that promise had to be broken when you found out you had MS. If she wants to guarantee herself a home, she will need to layoff you because MS can make you an invalid and if that happens, where will she be? Does she think her other children will step up to the plate? You have to lay it on the line. Keep your voice even but firm.

As a nurse you must know what MS will do to you. I realize that in the last 12 years medicine has improved but that its very very expensive. My cousin would be 83 this year. At 50 she was diagnosed with MS. She had a wonderful husband and support system. He held down a f/t job and came home and cooked dinner, did laundry, cleaned the house. She did what she could during the day but everything exhausted her. He made sure she got out, went on trips. She eventually needed to use a scooter when out and about. She started having respiratory problems. She woke up one night not being able to breath. Her DH went to get the nebulizer and when he came back, she was gone at 70 yrs old.

You either need to stand up to Mom or place her. If you don't set boundries with her you are going to shorten your life. You can't allow her to get to you because it means your life. I believe that my cousin lived as long as she did because of her husband. You don't have that support system. So, it comes down to letting everything Mom does drive you up a wall or living a longer life. I go for living a longer life. Look at it this way, Mom is literally killing you,
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BurntCaregiver May 2022
Well said, JoAnn. It will come down to standing up to the mother and making her respect boundaries or placing her. The OP's health has to come before childhood promises made or her mother's neediness and demands for constant attention and companionship.
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If you have to be by your mother's side every waking moment and she is incapable of doing anything for herself, she belongs in a nursing home or a memory care facility and you should start looking into placement.

Then tell her this. Tell her that she cannot live with you anymore because you cannot provide 24-hour care and companionship to her. She needs more care than you alone can provide.
You would know better than anyone else if your mother's lack of boundaries is dementia or if it's performing like my mother used to do because she was bored, nosy, or wanted to play games.
The performances and games tend to end abruptly with elderly folks when placement becomes a serious possibility. The games stop when the caregivers and family members stop playing.
If she has dementia and it's gone so far that she's developed a shadowing habit, take her to her doctor and have cognition testing done. Then place her because it will only get worse. You have MS and living in constant stress and anxiety will make it worse fast.
My mother who does not have dementia was famous for staging health crises for attention or to ruin a special occasion she was not part of. A while back I was going away for four days to attend a wedding. I had been looking forward to this for a year. While I was putting my luggage in the car, my mother started having chest pains and hyperventilating. I told her I'd call my sister and an ambulance for her. Then I got in the car and left. There was nothing wrong with her. She wanted me to miss out on the wedding. My mother would rather spend the day or longer up in the ER and subject herself to all kinds of testing if it meant I miss the wedding. She pulled this a few times before I caught on for sure. Seemed like every time I had something planned, there was a health crisis requiring a trip to the ER.
Or when she was bored and not in the mood to instigate a fight with me for entertainment, she'd work herself up into a hysterical panic attack or fabricated health crisis. These games all but ended when I decided to not play anymore.
Stop playing your mother's games and you'll see a big improvement in boundary control on her part. If you don't, then place her.
As for your do-nothing sister and brother, tell them they can take her if they're against placement or go pound sand. Good luck.
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I don't have any expertise per se, but I just wanted to chime in and tell you that I empathize with your situation. I don't have MS, but, I do have a non-participating sibling in my situation, combined with a mother who behaves fully entitled to my time and energy, and uses manipulation and emotional badgering to attempt to control me.

It took me a long time (as in, decades) to really be able to examine myself and realize it wasn't just about what she was doing, it was also about what I was allowing. I'm working on that every day. I feel your struggle in your words, and I am so sorry you are going through this. I agree wholeheartedly that you need to prioritize your own well being, especially given you are battling MS. Simply put, YOU MATTER. Don't let anyone try to guilt you out of recognizing that.

The best metaphor I've heard in a while was this ... you have to put on your own oxygen mask first, before you can help others. Easier said than done, no doubt - but, the only one that can make you a priority ... is you.

Sending you love and light as you move in that direction.
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Exhusted? I am not surprised.

You mentioned flying monkeys so I will continue the Wizard of Oz theme..

You are in Oz. Are you expecting a Wizard to save you from your current situation? To grant your wishes?

What ARE your wishes by the way?

Mother to change?
Siblings to change?

Ask yourself now. What do you really want?

YOU have the power to change many aspects of your life. I know you can't change the MS dx of course but what CAN you change?

It CAN get better!!
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BurntCaregiver May 2022
Amen to that, Beatty. Being in 'Oz' is a pretty good description of caregiving. Only it doesn't come with the sweet ruby slippers.
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Exhausted,
Burnt’s reply is spot on. Address mom bluntly in the way Burnt said to see how much she can or will respond.

Then address the situation you have with your siblings directly. Don’t mention how much money they have, just say that you need your mother to have aides so you can go to the doctor and take care of your health.
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