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I am new to the site. I was looking on the internet for a local caregiver group and I ran across this one. I have read so many stories similar to mine. My story is that I am the eighth of 8 children. Unfortunately, one sibling passed on last year suddenly who was a paranoid schizophrenia which was the oldest of us. My mother had 3 strokes last year. I was there to stop the first two from taking a toll on her, but the last one I did not even know she had one. Thanks God it didn't paralyze her or impair her speech, but affected some of her cognitive abilities. Well, my 16 year old daughter and I moved in with mother because she was weak and had continence issues for awhile. No one else wanted to step up to the plate so I said I would for awhile. Well, it has been very trying for me and has definitely put a strain on my relationships with my other siblings. They don't understand I still have to work, take care of my daughter, myself and our mom. My sisters feel that they can come over anytime they feel like because it's mama's house. I have asked them nicely to stop that because I work they do not!!! and I need my rest and so does everyone else in the house. Those request are ignored continually. They are always saying call me if you need me and when I do they always sick themselves of say I call you back and never do. I cook, clean, wash clothes, mow the lawn, grocery shop, take mom to therapy and doctor appointments, make sure has meds replaced, wash and comb her hair, take and pick up my daughter from school, take her to get her nails done, take her out of town with me, and other errand that I may have. the list is insurmountable. Since my mom has recuperated well the state will only give 2 hours a week for caregiving and that's when I am work not when I am off. I wanted to move my mother in another home due to her small house restrictions in the shower and just the lack of space to move around in. I was gun ho about the idea this summer, but I am thinking that they will not work. I have no help from any sibling for anything instead they have enough nerve to ask her for money at times and want to come over and eat every Sunday without bringing . anything. I realize this was my decision but it has burned me out already. Thanks God my mother can do her daily hygiene, walk without assistance, and even cook for herself from time to time. I am in the middle of trying to make decision should I move with her or move by myself ? I am asking god to guide me because he knows my heart and the guilt that I feel. But I need a break and I am just so exhausted!!! There is no sense in talking to my siblings or anyone else in the family because they just don't understand the daily grind of caregiving for her. I am restless, tired, feeling sickly daily and my mind is constantly raging of trying to make the best decisions for everyone involved. My siblings children are fully grown and married. I want to spend adequate time with my child and I cannot do that all the time as I wish. Her father co-parents very well with me and I can' thank him enough. I'm just sick and tired of every dam thing. no one cares of about how I feel. They say I have an attitude.

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so sorry to hear for that young lady that felt she had no where else to turn. its a shame that some family members (NOT ALL) only think of themselves and what they feel they should have. its been done in my husbands family, only the manipulation was done behind peoples back and probably had the mother sign papers that she didn't know what she was signing. well he claims to be all church going etc.......I wonder how he is going to answer the questions that will asked of him. oh well, the greedy will always be greedy.
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I just got some sad news today. A gal my daughter knows of, was the only caregiver for her mother with ALZ. None of her siblings would help. About a week ago we heard she had run away from home. She told no one she had left her mother alone. She didn't pack. Just got in her car and drove away. Today I heard she went out in the desert and committed suicide. Please, I am begging any of you. Don't let it go that far. If necessary, put your loved ones in a memory care facility, no matter what the other kids say. Save yourself. Please. I am so sad.
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I wasn't fighting--just stating my opinion from what I have personally witnessed. My SIL took what she wanted, My BIL got more than he "deserved" and we got less, but in the end, everybody is still on good terms and that was what mattered. Our own will states that our executrix (oldest daughter) will charge the estate $XX amount per hour she will spend on disbursing our stuff. All the kids know this NOW, and they're fine with it.
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I think the whole notion of caregiving, care of, care about and payment in whatever form is absolutely fraught with difficulties arguments, hovering vultures with no bloody thought for anyone else plus a whole of people who just want to stick their noses in and add their two pennorth (says me who is adding her two pennorth!) Im sure Midkid wasn't fighting just putting another viewpoint.

It would be wonderful if caregivers were compensated for their efforts. I do mean care givers - those who give their care not those who are paid. but the whole title of the word care giver is that we choose (I use that word very loosely - the choice aspect isn't always clear) to GIVE care.

Theoretically if we are later compensated for it we haven't been caregivers but caregivers_expecting_something_out_of_it people. Now I know even that isn't always true either because once in the caregiving trap some people HAVE to continue to care or be forced into a homeless penniless situation and that isn't recognised. Oh it would be an ideal world where we all got what we deserved in life and where a process was in place to say if you care you get x y and z but life aint like that.

I am my Mums caregiver, her POA, her daughter (obviously) and her executor and I will not take a fee for the execution of her will because I cannot. It wasn't written into the will and therefore I cannot take a payment. What was written into the will was that I would do it free of charge. Pretty much like every other bloody thing I do.

Will I get the car? nope she doesn't have one. Will I get all her estate nope - my kids will get a large part. Will I have the will challenged by my rotten through and through sibling? - probably and I have that to look forward to.....that will be interesting I think. Will people descend and try to take things? They can try but my door will stay locked until I am ready to take visitors,

As you say Private every single person and their family is individual and long may it stay so for otherwise we are nothing more than robots.
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Midkid58, what happened in your case and what happened in these other cases that I know of are different experiences. I didn't come here to fight with anyone but just to share my experience and what I would do. Not everyone will agree with everyone, so let's agree to disagree and move forward. With all due respect, I can honestly say that everyone's experience is definitely different, there's no denying that.
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Caregiver25,
If you have or show a so called attitude, I can sure see **WHY** & you have every right to have one & to show it.

Your brothers, sisters need to See & Hear more of your,
*Attitude & Hear your Opinion.* I think, what bookluvr above wrote is a great idea. Also, they need to spend a day or 2 care taking, so you can have a break, & to see & feel what you do & go threw on a regular basis. Remind them of the ole saying,

**WALK IN MY SHOES FOR A DAY OR TWO**

Maybe even have ( A SCHEDULE READY ) with each of their names on it, & fill in the dates & times in for each of their turns to stay for 2 days. If they say the can't, then be ready with a calendar, & ask them to fill in a date that (( THEY CAN SCHEDULE THERE TURN )) I am sure they will have all kinds of excuses of why they can't stay but at least it will bring it out in the open, & you could be sure to mention that you had planed for the ones that couldn't stay & (( TAKE THERE TURN )) that you have found a person who charges $XXX.XX for 2 days & nights & is highly reliable.
This would work for the ones who live far away, as they could pay for their 2 days & nights.
Each & every Caregiver needs something like this, we must have a break,
somehow, someway.
Here is a hug for you, & I am sending My Prayers also your way,
Your Friend here message board. 2Marilyn4Me2
So instead of staying their 2 days & nights they can pay for their turn......
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Private--
In a perfect world, the most involved caregiver WOULD be handsomely rewarded. We don't live in that world!
When my FIL died, my hubby was executor. He was legally supposed to charge the estate $22 an hour for every hour he spent on estate work. He didn't, as he felt it was "wrong". I renovated dad's condo and again, should have been paid $22 an hour for my efforts. I was not. Hubby's sis swooped in and took the car, the appliances, the "best" furniture before the funeral was over. Hubby said nothing. His brother who had not done a single thing for dad took his third---as hubby and sister both did. In the end, we were 'shorted' thousands and thousands of dollars. At first I was angry--but over time I have come to realize that keeping the peace in the family was worth it. (Oddly enough, my FIL's ex expected something from his estate--how funny. When they divorced she let him take one old recliner and one folding table and 2(!) not 4 chairs that went with it. That was it.) People are weird, and get weirder when money is involved.
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Pardon a typo, I was saying that I'm sure that there have been caregivers who have walked away with cars and such because they deserve it.

* Sometimes AutoCorrect and myself do not get along 😁
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I should clarify that I have heard of situations where caregivers have actually become executors as well. In these specific situation caregivers have actually been awarded very nice compensation for their work out of the inheritance. I don't know how this worked for them, but it definitely did. In the end, it was the person who did the most work who was awarded the most but I don't know how it happened. All I know is that it did and that's how it should be and that's where I firmly stand. However this worked out, I'm glad that it worked out for those people, because no caregiver should be taken advantage of only to have nothing to show for it. In fact, I'm sure there have been past caregivers who haven't even walked away with cars and such, because if they're willing to give up a portion of their lives, they most definitely deserve it.
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OhJude--
You crack me up. Maybe I was off the mark there, but IMHO, in this case, I thought that the person posting was using the inheritance "carrot" as a way to get help. It NEVER works.
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Midkid I couldn't disagree with you more. Inheritance should be mentioned and it should go like this.

Listen kids I need to tell you there won't be an inheritance. I want to go to an ALF and I have found one that will take me - It will use every penny i have but this is my decision.

I do this because I love you all and I don't want you to consider for one moment that you could would should put your lives on hold to give me care. I brought you into this world to see you grow and live useful and fulfilling lives and I am so proud of you for doing just that.

I did not bring you into this world to wait on me hand and foot and to wipe my backside because I can no longer do it. So my darlings no inheritance financially but there will be one in memories of our times spent together. Oh and by the way if you don't all visit me in the ALF ....the puppy gets it!!!!!
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Just wanted to add that it is nice to hear from you, MaryKathleen, because it's important to have your 81-year perspective in our community! Thank you for your input.
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It is so hard to catch up on advice when it's gotten to this stage. Part of me thinks you might want to be honest with your siblings, but call them and tell them when there is no pressure. Tell them they can't disrupt your Sunday meal without either letting you know or bringing some food that will add to everyone's happiness. Don't bottle it up and think they should guess. They are right it is still their right to see their Mom, but unless they want to move in and do what you do, they need to respect your feelings. And if they do want to move in tell them you need two weeks notice so you can settle in somewhere else. Don't be afraid to make changes as long as it helps your Mom and doesn't harm you. Be as honest about it as you can and if you think you are getting grumpy, talk to the air over their head, don't let yourself get upset. Disassociate and speak your mind not your anger. I agree with everyone here that you are overdue for praise and recognition for the work you are doing. Let your Mom know you are doing only because you love her not because she needs you. Giver her some dignity as you can.
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My Mom is fairly easyto take care of but...she can no longer make decisions for herself and I tire from having to tell her go to the bathroom, wash ur hands, brush your teeth. She still owns her house so I have those bills I pay out of her account. Any problems with the house I handle. I set up and take her to appts. I also have a disabled nephew I oversee that still lives at her house. I do her pill planner and handle refills for her meds. No, I don't work and can't imagine working and dealing with all this. One brother lives in NC the other doing his own thing. When the relatives come to dinner, you and your daughter plan to go out.
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Last August my daughter took her dad in to live with her. He wasn't eating or taking meds properly. He had just lost his driver's license and wasn't going to be able to drive. I knew it wouldn't work (he is an ex for a reason). She tried and tried, finally, she put him in assisted living. I agree she did the right thing. Sometimes, we feel we need to keep mom or dad at home in order to take care of them. We don't, taking care of them just means we make sure they have a roof over their heads, are fed, and get medical attention.
I am 81 and reading these posts makes me even more sure I never want to live with my kids. I have told them and I have it in writing.
Sometimes, you have to do whatever to save yourself. Do it. My parents had grandparents living with them, it was not good for their marriage. My dad died at 61 of cancer, I had him at my home the final 6 weeks. My mom lived until almost 95 and I know I was fortunate that she was able to live alone. She wanted to live by herself and I told her that as long as she could get dressed and use the microwave we would work out everything else. She came to stay with us only when the doctor told her she had 2 weeks to 2 months to live. My heart goes out to people who are in the place some of you are. Sometimes, you have to become the adult and say, it is time for your bath. Do you want the blue soap or green soap or whatever. You are the adult, don't ask, tell. Don't stay if you are going to lose your life.
My heart goes out to all of you wonderful people walking down that awful bumpy road.
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Ummmm...I kind of disagree with bringing in the "inheritance" issue with family. If your loved one does not have a will or trust, they need to make one with the help of an outsider (lawyer, probably). Using the threat of "you can be disinherited" always, and I mean ALWAYS causes more rifts. You are definitely "entitled" to your share, sadly, so are the people who do nothing to help, but are in the will and are just as "entitled". It was hard to see my BIL who did absolutely NOTHING to help in my FIL's care, receive a third of the estate. BUT, that's what was in the will and my hubby, as executor, made sure that his sister and brother were paid first any time anything was sold, or cashed out. You DESERVE more, no question, but that's not the way life goes.
In my own family, my oldest brother "took" more than $100,000 from my parents. He was "excluded" from the will. My little sister took $60,000. She is also excluded from inheriting. Joke is on the rest of us...my brother said "We won't inherit enough to buy a used car. A crappy used car." I'm not angry, as mother owes me nothing, but money can cause huge rifts, which may never heal. I wouldn't use that as a bargaining chip.
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1) Plan your Sunday dinner well in advance of your siblings coming over. tell them missed it. and change it up now and then so they will never know when the dinner time is, OR just make enough like the other person said, just for you/your mom/daughter. (2) maybe have a meeting with them and like one person said, explain each person must take a day and that you are moving out. It can be tough and it always seems like there is only 1 person in a family that is willing to bear the most of the caregiving, not always, but most times.
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As mentioned here, you can call a family meeting. What you can do is start by inviting people over for lunch or even a very nice dinner. Have the visit start very well and blend very nice into discussing the needs of your loved one. Remind them that inheritance time will be here one day, and if they want anything they better step up to the plate and do their part. You can actually get guardianship over your loved one and even become the executor over the estate. You would definitely have an advantage if everything happens to go directly to you upon that person's death. There may be things that you don't particularly want, and maybe some of those things may be wanted by surviving family members. However, remind them they won't get those items if they don't help out. This is how I would handle it in your specific situation.

As for people popping over whenever they please, you should give them the ultimatum to either get to work in helping out with your loved one or they have to leave immediately if they don't. If they're going to pop over whenever they want, then the rule should be that they will help, no questions asked. You should have at least one or two strong trusted reinforcements there with you to help you enforce that rule, and to help remove any noncompliant people from the house. Having reinforcement to act upon the rules will help people to get the message.
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You came to the right place--many of us are in similar situations.
What does Mom want? Is she capable of making decisions regarding her own living arrangements? We often tend to go over our parents' heads and assume what is best for them (and we are often right...but they need to know what is being talked about and planned)
At least your sibs SHOW UP. That's huge. You have a better chance of getting them on board with some kind of help.
I, too, have had to be much more aggressive with my sibs that I am comfortable being. They listen a little better--and I have turned mother's care over to my younger sister as my mother has asked me to leave her alone. We'll see how long little sis can handle the stress.
Self-preserve as best you can. Also, be really aware of the impact this has on your daughter. My hubby wanted to bring his dying father to our house. We still had 2 teenage daughters at home. They both said "We love Grandpa, but if you bring him here to die, we're going to leave". (He had a chronic cough that just literally rattled the house). Instead, I opted to go to HIS house 3 times a day to help him eat, bathe, etc. It was a really rough few months, but it was better for my family. I wish you luck and come back here and let us know how it goes.
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I have be en there and done it.!!Taking care of my mother, my brother inlaw plus running a business. It took a nervous breakdown for the rest of my family to see I was in burnout. One of the sisters took her to live with her family. She lasted 6 months before they found a nice assisted living home for my mother. She was then safe, content and happy to be with other people . The family then decided to keep in touch with her more which made both of us happy. Don't take the burden on yourself. It should be a family affair from the beginning.
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Hope mom can choose re: joysissy comment ... it's hard when you put a parent in that situation. but like joysissy said ... if she can speak for herself, has her own mind, then maybe?
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Time to ask mom what she wants, Can she even answer you. If she can take care of herself hygiene wise then she is not helpless. By asking her for her feelings can give you an idea how to help her. .Ask her which sibling she would like to stay with for awhile. . That way you'll be able to rest and revive. Then go to the next sibling. If she stays a mo. with each hey that's almost a year,. BUT ask mom and see.What can you lose.??
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Holy Poop! I feel for you.
You have to put your foot down.
But I am wondering. Have your parents made a will. Who is the POA?

I am asking this because I what my husband and I went through.
His mother has dementia. His LAME-Brother didn't help out at all.
My MotherInLaw called one day screaming to move in with hubby.
So hubby flew down and brought her to his home.
Brother would call and say "I think this or that'' but did absoloootely NOTHING.

His brother would call last-minute (he lives 4 hours away) and state he was in-town and would like mom for a few days. He NEVER gave notice and when he would take her, he never brought her back on time (3 hours late) and also when he went to pick her up (4 hours late).
Hubby's brother is self-centered. cares only about himself.

So my hubby got a lawyer and is now the prime caregiver and POA

Have you ever thought of leaving your job and being the sole-caregiver?
Do you parents have enough money to have someone come in? or even a few people?

We tried the PSW thing. 3 of them started okay and then they would complain or ask for more money. Hubby even helped out one with an advance for HER rent. Then she went all PSYCHO. and one of the agencies we used only cared about money.
So we found a place for MOM :) ... and it's hard.

Hubby works from home and on the road. Couldn't get work done cause of her episodes (dementia related). He hates that she is in a place, but at least THIS place she is well taken care of.

PS... Hubby and I are married. He lives in the USA. I live in Canada. I take care of my dad here. We travel back n forth every 2 weeks to see one another.

So my question:
1/ Can you talk with your mom and state that rules must be in place?
re: visiting
2/ If your sisters come over on SUNDAY, have them bring a POTLUCK type thing. Also state the hours they can visit and leave ie: 4-6pm (that way YOU can have an evening in calm)
3/ Discuss a POA with your parents. this gives you full ruling on anything. It's better to get it NOW before your parents can't speak for themselves.
4/ Did you know (and this is what we found for MOM) that most facilities have a few beds that are geared-to-income? And I mean the NICER facilities. That's what we got MOM. So instead of MOM paying over $5,000 she only pays less than $1,000) .. at first it was complicated. but a friend of a friend told us what to look for and apply. We were very lucky and got a care facility to take her within 3 days. :)

THE other thing? How is your daughter taking all this?
Hubby has a son who is 12 years old. He is mature for his age, but having MOM at home made son upset. She would yell, scream at times. Poor son had to deal with that and school. NOT good for a child at all.
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I feel for you, Caregiver25 - it sounds like you're on the edge, and need a big hug and some serious reassurance. Please know that you're not the only one going through this! I struggled with a LOT of resentment when I began caregiving for my parents, both of whom have Alzheimer's. I took early retirement and am there every day for them, but I chose to live nearby in an apartment instead of in their basement. I don't know how long this arrangement will work; it's one day at a time. My siblings are supportive; they were thrilled that I stepped up to the plate. I have one suggestion, which may or may not work, as every family dynamic is different. I began a series of weekly emails to keep them all in the loop about what was going on, and in doing this, I communicate fully what is being done on their behalf. My siblings quickly got a sense of the time and effort involved. I've also called them in tears when I'm frustrated and in despair, so that they can see the emotional toll it takes. Being honest and open goes a long way in my family, as we all grew up keeping things on the inside, something that happens a lot in big families. Finally, it seems to me that your Mom is probably OK to be on her own most of the time - can you move to a place nearby? Does she have the funds to support a part-time caregiver who could take over from time to time? There are always solutions, but being in a place of high anxiety makes it hard to take that important first step. Courage, fellow caregiver, courage... and remember that putting yourself first is the brave thing to do, right now.
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Do not ignore your own health and sanity. This will do terrible things to you. I only now realize that I have had caretaker burnout, having suicidal thought and causing extreme withdrawal. I have taken care of my terminally ill mother and father for the past 10 years.
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Sorry for the typos...my iPad and I don't get along early in the morning. I meant "we all live so long". And "my sister...not sitter". Another cuppa might be in order!!
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You have a tight yo feel as you do. It is exhausting. It wasn't until my sisters each came to visit that they realized what I do. That did open their eyes. When I took a two week vacation, my closest sitter had to come up and step in because dad got pneumonia. She moved in with him for a week and got an eye opener. So until we stop making it look easy they will never "get it"! I agree with the posts above. You stepped in when necessary and now it's time to step back and out and reclaim your life. However that is done...do it! You can not continue like this as you will snap and or get ill. Your first responsibility is to your family. Look up the word guilt... You have to have done something wrong first to feel guilt. So your guilt is misplaced as you e done nothing wrong. Get a plan in place and if need be, get someone who can help you make that plan. May be time for a professional to do that with you. If she can't remain independent, then she needs to move. Yes, we all love so long that aging in place is not always an option. We need to get over that. Please take care and know that we truly understand and are here for you..your siblings need a wake up call!!
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It's mom's home. If mom doesn't put rules, then your siblings will treat it as a home for everyone who visits. I'd lock your bedroom door to keep the privacy. As for Sunday meals, can you just cook enough for you, mom and daughter. If they drop by, ask where's their contribution to the dinner/lunch table. By asking this, you're letting them know that to visit from now on - to bring something. If this doesn't work, then make it a point to cook food that your sibs don't care for. Make it subtle - and not obvious!

As a person gets old, they don't want to move. They're familiar with their own home - so trying to get your mom to move out might be difficult. Realistically, mom might be better at a retirement home or AL. You and daughter find a smaller place that you can afford. Whatever you do, don't include your mom - unless you want all the strings attached to that. You don't want to put her name in anything as shared property or loan, etc... It would be best if she has her own place. Moving her with you on a smaller dwelling is Not solving the problem that you're currently having. It's just transferring from one pot to another.
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Right Caregiver first off welcome to the world that no-one but us understands..... not you and me - all of us on here.

Feel free to vent al you want because we all do! If not already there you are bordering on depression. The anger and angst you feel are very typical of the period of adjustment that occurs during transition so you are truly not alone sweetheart and my heart goes out to you xxx.

Now on to the serious stuff. You need something to help you immediately probably some form of calming medication that will allow you to step back and take control of YOUR life. If am way off beam here then ignore that and go on to the next step.

Reading between the lines here - it wasn't ENTIRELY your decision to go and live with Mum, you said you did it because none else would. All volunteers step forward and they all took a step back sort of thing - leaving it down to you. So let's not pile the guilt on for the that - you did what you did because your Mum needed you and that is commendable not something to feel guilt about later. You'll see why in a minute.

I can imagine the scene in your siblings respective household when you moved in with mum. Phew we don't have to bother with that problem, where shall we go tonight? That's about how much attention they will have given to the life you were about to embark upon. And they envisaged you would do it all!

Now bear in mind that if you change nothing about your life nothing in your life will change. So time to grow a steel backbone and call a family meeting - I would suggest however much a pain in the arse it is you invite them all for Sunday lunch.

Sunday lunch will not be a full on cooked meal it will be a cold buffet because you don't have time to do it all or it will be a bought in takeaway pizza - It just will not be you turning cartwheels to try and please everyone.

I think your ex sounds amazing so keeping him on side is invaluable and it would be best on that day if he could remove her from the situation...I don't think your children necessarily need to know how bad you feel.

Then when they arrive sit them down together and tell them you need to let them know something important. Not that you want a discussion - you don't - they will try to browbeat you. This is NOT a discussion. Tell them you can no longer continue to care for your Mum full time and that you have decided to move out. That will throw them into turmoil!

Not a what shall we do shall we move to a different place or shall I do this. You make the decision and you stick by it gal. There is absolutely no God given rule that says YOU have to do ALL the care or that you SHOULD do it. It may be heartwarming for some, I know some find it rewarding - I personally don't but that's for a different reason.

There are 7 of you for goodness sake thats one day each a week. So you have drawn up a rota for 6 days a week that gives one of you a full week off in every 6 and they must understand that gets paid back and they do 2 days a week when one of you goes on holiday.

Its a take it or place Mum in ALF situation so let them stew on that. Tell them you want a decision in 30 days and then go. keep social services in the loop
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I really understand what u r going thro'. Don't feel guilty as your mother is independent. Just move out and still u can take care of her. In my case I opted to take care of her as my siblings didn't want to shoulder any responsibility and wanted to dump her in her house to fend for hersel although she has alzheimers and arthritis.I am not in talking terms with anyone of them (6!), but don't restrict them to come home to see my mother which is very rare with my mothers persistent calls, they turn up. But I just quit when they enter. No hospitality from my end. So be guilt free and move out, good for both of u.
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