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I have posted here before and have found your support is very comforting with lots of wisdom. I signed up for an art class for 4 hours a week. I have been to 2 sessions and have found when I come home, I'm totally burned out. I was supposed to go today but had insomnia and cancelled. My caregiver still came and I am out, but I'm just too tired to enjoy it. My mother called me a selfish daughter and threw one insult after another making me feel so guilty. On top of that. I called the cremation society and the gentleman on the phone was nice but also made me feel guilty. My mother has some Dementia but can still walk. I asked her if she would like to spend a week in fairfax VA with her son and his grown children. Her answer is always no because she can't stand being around my sister in law. They won't help her anyway. I feel like I need 2 weeks of vacation just to regain my strength. I've had to cancel some important doc appts because I can't always afford a caregiver. What do you do when your own child and strangers make you feel guilty? Nursing homes are out of the question.

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Start by reading Golden23's wonderful post:

https://www.agingcare.com/discussions/boundaries-are-about-you-not-them-456081.htm?orderby=recent

Learn how to set some boundaries for yourself so you can save your own sanity.

And how does a cremation society representative make a person feel guilty, exactly?? Guilt is a self imposed emotion telling you you've done something wrong. What are you doing wrong by making final arrangements, or asking about final arrangements, for your mother who's 94??

For what it's worth, when the Catholic deacon came to the Memory Care home where I work on Sunday, he told me he prays daily for his 90 y/o mother to die. He feels it's a blessing to die, and that advanced old age is the true curse.

If you say that nursing homes are 'out of the question' for whatever reason, and insist on caring for mother at home, you'll need to find ways to take care of YOU and to shut down her insults and negativity towards you. Have you considered therapy?

Wishing you the very best of luck moving forward.
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NeedHelpWithMom Feb 2020
Smart deacon. I have a wonderful deacon at our church too. People love him for his compassion and wisdom.
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The rep at cremation society told me to spend every waking minute i have on my mother. I do that already. I have been going to therapy for a while. And i agree with your priest!
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lealonnie1 Feb 2020
Gee that's an absurd statement for the rep to make!!!!!!!!!!!!! How bout he sticks to the facts about the services he offers and that's it!
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Why is she in your house if she treats you this way?
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I would have been tempted to either tell the rep what he can do with his every waking minute, or better yet, just stare at him and smirk, then turn around and walk out.

Seriously, I would NOT tolerate this kind of intervention.  Find another cremation society.

Lealonnie and Minsu make good points.   My first thought while reading your post is that you need to establish not only boundaries, but activities, what you will and won't do.   

I do understand though that being in this kind of situation distorts common sense and self protection, and I don't mean that as an insult.   It's like being in a rainstorm, or snowstorm; focus narrows to the existing issues of that time.  

It isn't going to be easy but you have to stand up for yourself and establish a set of rules and standards. 

Anyone who called me selfish would lose my support right then and there.    If you can't afford a facility, contact an elder law attorney to help apply for Medicaid so you can find someplace for her. 

This situation isn't going to change until (a) you change, or (you die) or (she dies).
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GardenArtist: "This situation isn't going to change until (a) you change, or (you die) or (she dies)."

Very good points! Essie, I don't think you are ever going to change. Do you?

Why is she being asked if she wants to spend a week with her son and his family? Why isn't she being told that is what is happening?

Your mother called you a selfish daughter because you go to an art class?!?!

Why are nursing homes out of the question?

From your previous posts, you've had some significant health (including mental health) problems. What would happen to your mother if you were no longer able to take care of her? If you cancel important dr. appointments, that could happen sooner rather than later.
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I must ask why Nursing homes are out of the picture? It appears that you are overwhelmed, why not consider another option? She is 94 and has lived her whole life, when are you going to start living yours?

Guilt is a self imposed emotion, fueled by fear...what are you afraid of? Have you considered therapy to get you on the right track?

I wish you the best.
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KatD81 Feb 2020
Agreed on all points!
We don't have to automatically accept other people's judgments.
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Why are you sacrificing your own life for your mom ? Your life matters too. You must make a change. See a counselor. Everything in this post just sounds wrong to me. I’m sorry if this sounds harsh. Maybe I see some of my own past behavior here ?
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'I feel like I need 2 weeks of vacation just to regain my strength".

Even soldiers at war are given leave. Keeps them able to refresh & continue.

Your army of one is sinking into the quicksand - you need a string of helpers to all be working together to pull you out. Then someone else takes the lead for a short time while you recover your strength.

Gather your family as your team & pull together. If they can't/won't help then use paid carers instead (in home if possible) or in a residential setting.
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NeedHelpWithMom Feb 2020
Two week vacation sounds heavenly!
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I’m so sorry they make you feel guilty. Unfortunately, lots of caregivers experience that. I know I did. It’s emotionally and physically draining. Let them walk a mile in your shoes and they would change their tune very quickly.
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First, stop asking your mother with dementia if she wants to do something. Arrange it. Tell her a little bit before time (like on the way) and do it. remember it is not about helping her be better it is about giving you some needed respite. So what if she doesn't like her daughter-in-law . It really doesn't matter if the daughter-in-law doesn't like her.

Second, a long time ago, I learned that no one can make me feel guilty. Feeling guilty is an emotion I allow. You can decide that you are doing the best you can under the circumstances and stop people in the middle of a sentence and

Say "I know you think you are being helpful, but you are not" I know that you that you are not trying to make me feel guilty, but that is what I feel when you do "Y. What I really need is physical and mental support? I need you do "X" Be specific

Why is a nursing home out of the question?
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kdcm1011 Feb 2020
“Feeling guilty is an emotion I allow” .... love it!
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Great thread. Is the term ‘nursing home’ being used generically by the OP? The mom doesn’t sound ill enough for that. There are levels independent, assisted living (AL), memory care (MC) all on the way to that.

essie, if you love your space or bedroom in the home, that would be good respite too? You make clear to the caregiver that you may be texted if there’s any specific question, otherwise no knocking or calling out. Your favorite pillows, some snacks, a book, magazines or shows, and settle in.

I agree about sending her to your brother’s home regardless. Agree (I always think this) about going to a support group at a minimum, your own 1-1 counselor even better.

Folks here are showing how we can all magnetize or accept guilt as a habit, get to work on yours, you’re worth it. 💐
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Nursing home out of the question? Sounds like you enjoy playing the role of martyr.
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momof2angels Feb 2020
please be considerate. Nursing homes are definitely out of the question if the parent doesn’t qualify for Medicaid or financial assistance as the cost is prohibitive for many people. In our area four years ago assisted living facilities were easily $8000-$9000 per month for an individual who had dementia and needed extra care. And I’m not talking about having an aide or any person by their side during the day.
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Who is “the rep” at the funeral home and how does this person have the authority to tell you what you should do? It sounds like exhaustion is preventing you from making good decisions. You’re beaten down and barely functioning. This in turn gives others the opportunity to take advantage of your good nature. Call your brother NOW and tell him you are on the verge of a breakdown (and you are), and tell him to make arrangements for your mother the go to his home. Period. While she’s there, the two of you need to discuss where she will go because you are no longer able to care for her.
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jacobsonbob Feb 2020
I suspect that person at the funeral home has never been in such a caregiving position and is simply seeing the situation through the proverbial rosy-colored glasses. Not having been there, Obviously I can't know the whole context of the comment, but it's possible it wasn't intended to produce guilt.

It's true that we shouldn't feel guilty if we haven't done anything wrong, but there are times when we wonder "am I doing something wrong?" admittedly caused by comments from others, "society" in general, and even religion (with some having "open-ended" requirements that one can never complete fulfilled but for which the leaders lay guilt trips on the members, just as the OP's mother and the man at the funeral home did). It's not necessarily a matter of good or bad; it's "could I, or should I, have done or given more?" that's often the issue.
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Please go see a doctor for your own health, Several conditions can cause your lack of energy and zest for life. Most are easily treatable. If there is nothing that can increase your energy, please consider that your days as a caregiver are over. You can't give what you don't have.

Nursing homes are available for people on Medicaid. There is a facility out there that can care for your mom.
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Don’t let other opinions matter to you. You are too fragile to continue this way. I though i was ok but struggling till Dad fell and had to go to the hospital then placed in a nursing home. He’s doing great-me , not so much! I’m suffering from emotional exhaustion. I have lost my identity (after 20 years of caregiving) and have people I’m friendly with but no close friends. I feel like a hermit and am happy to finally be living alone without any responsibilities. I know at some time I need to move forward but for now, I am only able to try to feel healthier. Take care of yourself. If you don’t, at some point, your mind will take over and you will be powerless to fight the illness. And then who will take care of you? Someone will have to pay your bills, make your meals, do the laundry and basically take over your life. Unless this is comfortable for you, just think about what this will really do to your life. Good luck and God bless. I don’t know why you say “nursing homes are out of the question”. We were trying so hard to keep Dad home, once he went to the nursing home, he flourished!! Loves people and the care and food are excellant. We were so worried about him but we should have worried about us more. You can do this
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ExhaustedPiper Feb 2020
Good luck to you Kat. I'm glad you are resting and focusing on your health. After everything you have been through you need to heal. You are wise to recognize that and I wish you all the best going forward.
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I am shocked at how many posters on here seem to cavalierly think that any type of assisted living is easily an option. My father is 94 and my mother passed away 2 years ago after being in an assisted living facility for 4 1/2 years with dementia. Here’s what I learned. ANY type of assisted living care is extremely expensive. I don’t know how most people afford it. Dad spent over $500,000 for mom’s care and we’re not talking about even the most expensive facility in our area. At the time, most decent facilities were $8000-$9000 per month. Qualifying for Medicaid at that time meant mom had to have virtually no $ and Medicaid at that time had a 5 year look back period. Since most accounts they had were joint, of course she didn’t qualify. I would advise - especially if your dad was in WW 2, going to an elder care estate planning attorney to see if they can help you qualify your mom for VA benefits or Medicaid if she qualifies. Our area here in NC seemed to have few decent Medicaid facilities but yours may. My brother and I are now caring 24/7 for our 94 year old father, I retired early to do so and have two teenage daughters. I understand the difficulties you are encountering. Best of luck to you. It is an extremely difficult, emotional and tiring road. And any type of caregiver becomes expensive after several hours each week. I understand. Another option is to definitely contact your county hospice program. Dad is now under hospice care. While he is at his house and not in a facility (again, his wishes and also money is a factor), hospice is supplying must of his medications and bandages and pull-ups and bedding pads (hospice is reimbursed by Medicare). However, he does have multiple health issues. Please at least contact them though to see if your mom qualifies. I just found out-it was not information provided early on - that hospice will provide respite care stays for him - to give us a break- periodically. At no cost to us for him to stay at their facility when they have availability. Your local hospice, if your mom qualifies, may do the same. Please contact them and they will send a nurse out to evaluate your mom. Again - at no cost. They Should be able to also provide information on other resources and perhaps other cheaper caregiver options. Best wishes to you.
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scatter195 Feb 2020
Thank you for stating the obvious and offering real information. I see so many on here saying...time for a nursing home, assisted living, etc. Having too much money to qualify for Medicaid still doesn’t mean they can afford $8-9,000 a month.
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Essie, I’m sorry you’re trapped in a place you can’t seem to escape. I hope you’ll gather the courage and strength to do some things for yourself before you become too sick to be a caregiver at all. Please arrange a two, or more, week stay for your mom with her son. Don’t discuss or argue with her on this, you’re an adult and don’t have to explain or justify yourself. Tell them this is a must, your health is at stake and they must kick in. Refuse to worry about her care at their home, she will be okay, you don’t have to control everything. You need a break for so many reasons, please arrange one. When the caregiver comes, make those doc appointments you need happen, do things that are positive, if it’s not art that’s okay, you can find something else. For me it’s often just a walk, and please walk away each and every time your mother insults or yells at you. No matter what’s going on with her, no one deserves that, so don’t give it an audience. And forget the cremation idiot, certainly there are others in this industry who are compassionate and decent. One thing is certain, nothing will get better unless you make it happen, I hope to soon read an update from you after you’ve had a break, are getting out and enjoying it, and have stopping listening to yelling and berating comments. You’re worth it
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You are bearing a heavy load of responsibilities and being a good daughter - above and beyond what parents should expect from their children. Please take care of yourself! Go to your doctor appointments. You are doing the best you can, and don't let others make you feel guilty! Easier said than done, I know. Remember that people with dementia are no longer fully rational and can say and do things that don't make sense. Perhaps it would be helpful to talk to a social worker to find out what services there are in your area to help you and your mother.
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There are a lot of Assisted Living with a Memory Care option that will do Respite Care. Respite care is where your mom could go stay at the Assisted Living for seven to thirty days and receive the care she needs while you take a break.

I would not present this as an option to your mom, I would tell her that this is what you are going to do. You can't be a good caregiver for your mom if you don't take care of yourself! I am a Geriatric Care Manager and have worked with the senior population over 20 years. I can't tell you how many of my clients caregivers actually died before my clients because they did not take care of themselves.

Don't let your family or other "well meaning" friends make you feel guilty for wanting to take a break, its not so much that you want this, it is that you need this break in order to provide your mom with quality care! If they are adamant that they do not want your mom doing a Respite stay then they can come stay with her while you go on vacation!

I see you signed up for a four hour class which is good but sometimes what you need is a true break a time away from your loved one!

I wish you the best!
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Hugs to you. I wish I had words of wisdom to pour out to you. No one can totally understand the unique situation of each caregiver.

I am also the caregiver of my 94 year old mom too, who is the sweetest lady on earth, almost too sweet! Even so, her dementia and medical needs wear me out, and when I have a sleepless night on top of that, I feel like I’m at the end of my rope!

It looks like I have found an assisted living that she can afford for 4 years. At that point, if she lives that long, she will be totally broke. But, that is our only choice. If still alive at age 98, we’ll have to look at Medicaid and another facility.

Here is what I did to get though my current caregiver role :

1) I found a little group of caregiver buddies at work. You’d be surprised at how many people are in a similar boat as you are, but you don’t know unless you talk to people. It was through one work buddy that I was able to get a private aide to come to my home for mom! Otherwise, we would have had to go through a home care agency! I learn so much from them and they learn from me too!

2) I got a folder and made it a part time job to find every resource available. I keep every program brochure in case I need it at another time.

3) I attended a session with an elder care lawyer to learn about the in’s and out’s of planning for long term care.

4) I called patriot angels, who filled me in on Aid and Attendance; we hired a lawyer they refer to, and mom was recently approved.

5) at every hospitalization (6 last year!)I requested to speak with a hospital social worker, and requested palliative care team meeting. Although she qualified for hospice during last 2 hospitalizations, we chose not to go that route. The palliative care team lead me to some good supports that I was unaware of.

6) I too had to cancel a few important MD visits. But made it a point to reschedule AND go!!!

7) I wasn’t afraid to stand up to “know it all’s! ” For example, my mom went to 2 1/2 weeks rehab, after her last hospitalization (I was very ill with pneumonia at the time). I didn’t like the assigned social worker, so I fired her. The reassigned social worker couldn’t have been any nicer!

8) I’ve become assertive. I have asked my sibling directly to come up for a week here and there in order to get away. My brother has come up twice from another state. He doesn’t care for her the way I would, but I let it go. It’s OK! He also volunteered to come up a weekend A couple months back so I could be free to do what I want for a weekend.

9).Whenever possible, I give my mother choices but don’t give her the opportunity to say “no”. She doesn’t have the judgement to really know what she needs, but if I give her two reasonable choices, she feels like she has some power.

10) 9: o’clock Is bedtime for mom almost every night. I go upstairs then, and although I don’t necessarily sleep, that is my time. She sleeps in a bed in our living room since she cannot climb stairs.

Also, don’t hesitate to speak with your mom’s primary care provider about her behavioral heath. There may be a medication that will improve her mood. Sometimes depression or anxiety can manifest as meanness. When people are afraid, they can appear angry.
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CZB1956 Feb 2020
Hi Carol, I was thinking of calling Patriots Angels to get that benifit for my mom who we just moved into assisted living with memory care. What is the cost associated with them? I have tried contacting a Veteran Service Officer but have not gotten any response. Thanks
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I agree with the other advice about not asking your mother if she wants to visit your brother. Set up what works for you and tell her when you are in the car driving there.

If not, maybe you can have a caregiver come in regularly so you can get some sort of a break. I fought that idea as well, I didn't want mom to feel like she had to be "on", I didn't want her to have to sit with a "stranger", etc, etc. And I know introducing a caregiver can be scary and uncomfortable but it may be a manageable step you can set up quickly.

With a caregiver coming in at least she is in her own place, she is comfortable with that and you don't have the added worry of her being somewhere else. Especially for right now because you sound like you are at a breaking point. I don't know her financial position but if she is living with you, maybe you could use her money to pay for that caregiver? Her savings, her social security, something.

Also please don't give the rep at the cremation society another thought. Non-caregivers are quick to think everything is so easy when it comes to caring for another person.
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It probably isn't the class that leaves you burned out when you return home, but rather returning home to a situation you cannot cope with! Once you can find a solution to your other issues, this should become a good outlet. Hopefully it is a pay as you go class, but if it isn't, ask about getting a refund. If they say no, ask if you can suspend your classes for now and resume later, if/when you can resolve other issues. Hopefully they will be understanding!

It isn't easy dealing with nasty criticism from others. Getting it from multiple sources can make you, in your compromised being, believe that perhaps what they are saying is true. No. These are thoughtless, heartless comments. When it comes from family, esp one's own mother, it is so hurtful. If she was like this before any cognitive decline, then this is who she is and dementia will only ramp it up! If she wasn't like this before, then it is just the dementia talking. In either case, you will have to make an effort to harden yourself and ignore the comments. Walk away if/when she starts. People like the rep should be reprimanded. At the least, I would contact the owner and report it and let them know you will not be using their services. There are other places, and ALL of them should be understanding and help you get the services you need from them, not offer useless advice.

Whether you ask her or just plan to drop her off at your brother's, this is probably a bad idea, since you said "They won't help her anyway." Rather than taking her there and getting flak from them and her, is there any way your brother could help financially? I know some siblings are not helpful and refuse to provide any care or money. If this is how he is, don't waste time and energy on him. Ask once, maybe twice, then move on.

"I've had to cancel some important doc appts because I can't always afford a caregiver." NOT a good situation - you have to see to your own health before you can continue to take care of others!  

"Nursing homes are out of the question." As others asked, why is this? She doesn't sound like she would qualify for a NH, but perhaps AL or MC? These are also expensive. Some state's Medicaid does cover these, but not many. I would certainly take the time to inquire. Only her income is considered, not yours.

Paying for caregivers should come out of her income, but in other posts you say your combined income isn't enough. Contact the local SS office to see if either or both of you might qualify for any aid, such as SSI and/or food stamps. Work with your current landlord, if there are smaller and/or less expensive units you could change to - you shouldn't have to lose the money if you aren't moving out of the complex, just downsizing. Credit check might happen, but it should show you are making payments. Also, so long as you are not behind on current rent, anyone with a brain (hopefully landlord has a working one!) would know that even if your credit score is not great, it would be EASIER for you to cover the rent if it was less AND helps you to pay off the debt sooner!

Checking into ways to reduce your financial obligations is a positive move for you. Put your remaining energy into that and focus on trying to improve the situation. Put up barriers to mom's insults and guilt trips (you need a trip/vaca NOT organized by her!) It will be hard and take time, but with each time you resist it will get easier. There will be setbacks, but plug on! Even if you can't go on vaca, walk away, even around the block, just to get away from her insults and burn off that anger! Understand you are doing the BEST you can with what you have to work with. You are NOT a selfish daughter, not after giving up 10 years of caring for her!
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It seems people here don't want to use ALL their mom's money for care. That is exactly what you should do. Understand now, there will be no money to inherit. If a parent has $500,000 at age 90 all that money should be used for their care for the years they are alive and when the money is gone, medicaid will kick in and do the rest for the time they have left.
Under NO circumstances are kids responsible to financial care for their parents once the money is gone. They lived their whole life giving money to the government and now it is time to COLLECT on those monies. People have to become more educated of the rules of their state and the rules of the federal government.

I have been caring for my mom for about 7 years (she's 96). I feel for you and your burn out. I have never had children, yet I see some of the same "results" that a mom might feel. When I get tired and frustrated I yell at her and that upsets her and it is a terrible time between us for hours. I have to do better at leaving the room.
If your mom is critical of you, treat her like a child....since she is acting like one. Remove something that she likes from the room, or leave yourself. She is controlling you with her nasty words and it is time for that to end. If she shows more appreciation of what you have given up to care for her, things might get better. Do the opposite of what you have done when she gets critical...
for example, if you normally stay silent and "take it", SCREAM at her and yell, "STOP SAYING SUCH MEAN THINGS TO ME MOM, I AM DOING THE BEST I CAN!!" If you normally scream at her all day long and tell her how you hate what she says to you and it just become a screaming match all day long, do the opposite, leave the room, don't say a word when she criticizes you and come back to her 15 or 30 minutes later....even if it is just to go to the bathroom, close the door and read a favorite magazine or book.

I have tears for you right now. Your pain is hurting me since it sucks to not be appreciated. If you are religious, KNOW that you are earning your wings every moment and we here are pulling for you and hoping and praying SOMETHING on this thread you can use and get some relief.

I knew when things were out of control for me, the folks here were a HUGE help. Maybe find someone on here that is in the same position and write back and forth each day about how it is going....
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Essie, now that you say a nursing home is out of the question because of finances, I hope you have consulted an elder law attorney. They are an invaluable asset and potential lifesaver. It will help you both tremendously. Good luck
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It seems like your mother needs to be in a Nursing Home because you're about to break.
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Can someone in the family come stay with her so you can get away? Self care is so important yet it is so easy to put aside. It is difficult to ignore the insults and not feel guilty. If you can do self talk remind yourself of everything you are doing for your mom. Walk away when she becomes insulting. Know that you are a good person and own it.
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