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Someone once told me, it's the caregiver that decides - not the loved one. Originally, I did not understand the statement at the time, however, as the disease progressed and more and more care was needed, I understood. I finally knew it was time to get help.

After many years of care giving and my deterioration, a good friend asked me the question 'why do you think his life is more important than yours'. I didn't necessarily feel that way, but understood what she was asking after the many years of care giving. You might ask yourself the same question and be honest with yourself with the answer.
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I can't even imagine doing all of this shopping. I know what I'd do, tell her you will not do this anymore, give her a set amount of cash, tell her to call the bus service for people with disabilities, and let her do her own shopping and chronic returning. She would tired of it really fast.
Just say no, and make sure the doctor knows she is lying.
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Your first obligation is with yourself: this is not to be selfish, it is to recognize you, as everybody else, have limits. Calm down, take a long , warm shower (even if the rest of the family needs to wait), dress nicely and take Ann out: to a movie?, to a shopping trip for you?, to a park or the library?, to a concert?, to a walk on the hills? What would Ann feel happy?. When you return home, just smile at any question and tell it is something you will do once in a while and are not giving explanations. If somebody dares to tell you are selfish, explain it is the contrary: only if you take care of Ann, you will be able to take care of anyone else. Do this in a calm mood and if feeling upset, go out again, even if it is only to walk around the block. Write mom a nice card, telling her you will do one and only one thing for her every day: She needs to thing carefully about what she wants. And this include cooking! The other days she can manage as she dopes when your brother visits. If she is unable to tell you what she wants, give her a list of three things you can do for her today. Do not discuss, do not beg for understanding: if she gets abusive, leave. Make sure she has basic food in the house: that is the limit of your obligations. After a couple weeks, announce the day you are not going to be available and send the help to her. I you do this in a calm, gentle way an leave if she start trying to manipulate you, she will get the message. Try this program : you will see results that will be good for yourself, her and your relationship. Remember: every day you do a maximum of three things for other people and one for Ann! Love and good luck!
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bundleofjoy Nov 2021
hugs!! your words really helped me, olave415 :).
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Why should you be thankful she is still with you? She is your mother and she is unreasonably demanding - people need to spend a week looking after her before they utter platitudes. You have nothing to feel guilty about because you cannot be right in mother's opinion all the time. She is not the only one you are supporting, and you give a great deal. You are doing you best which may well be more than is deserved. You say you were involved in caring for a dysfunctional family so you have obviously helped mother for most of your life. Take a break, get your husband to take you on a two week (minimum) holiday and book a general care helper to pop in and see mother to check on her daily. You deserve to look after you and your husband for a bit. (If his sister will need someone to assist her whilst you are away, I am sure she will be able to sort that out with you.) Good luck and enjoy a break.
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hugs to everyone out there!!! :)
it's tough. and the kinder you are...well, it can be tougher than for non-empathetic people, since you care.

indeed, it almost seems that the people who really "succeed" (top of a business, etc...) are the rude, mean ones...kicking others down on their way up. non-empathy also means you don't care about others: a life-time of TIME to focus just on you!!

it almost seems to be a disadvantage to be kind in this world.

it's not.

hug!!!
try to find some balance -- be just as kind to yourself.

it helps, i think for some of us, if our parent/s themselves would give us the ----- "permission"/encouragement --- saying "go work on your life! i want you to!"

some of us do receive that "permission"/encouragement.
(i really think many of us yearn for that "PERMISSION").

some of us don't receive that.
then, you have to draw that line yourself ("i've done enough. i love you. but i must work on my life. if i don't, i'll drown. and i know that you -- in reality -- dear mother/father, want me live a full life."

dear everyone, draw the line, if you feel you've reached it:
"i've done enough."

put all that kindness into/towards yourself.
you have a lot of kindness!!

and if necessary, yes look at yourself from the outside: what would you do for this kind/exhausted/frustrated/sweet person?

dear TaylorUK, your words weren't meant for me, but they help me, too!! :)
you said:
"You deserve to look after you"
"Good luck and enjoy a break"

hugs!!

bundle of joy :)
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Lizbitty Nov 2021
Beautifully said. ☺️
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Stop enabling your mother. And stop enabling the rest of the family. The dynamics you describe have been there for a long time. Seek some counseling from a support group and/or psychologist educated in caretaking. I know this may sound harsh to you but the reality is, you've helped set their expectations and now you want things to change. Its going to take recognition on your part that you are helping make these things happen.

Its true that you deserve help. Its amazing that you've been able to do all you have for such a long time. However, you are the only one who can change what's happening. It didn't happen overnight and it won't get fixed overnight.

Set limits. Don't take your mom's things back 6 times!!! Clearly, she doesn't really know what she wants. Learn to say no. And if she's unhappy about it, tell her you'll come back to see her when she's feeling better and then leave. Don't enable her to run you ragged! You are not a bad daughter if you do your best and then let her be upset that she can't keep pushing you into doing more and more. She's probably lonely and sad and frustrated but guess what? So are you! You and your own family should come first. Tell her what you expect from her as well. Even if she needs cognitive care, she can understand the word no but you may have to repeat it several times before she sees that you aren't going to bend to her will.

About your bother, men often don't approach a situation the way we women do. Being angry with your brother for not stepping in won't help. Make a list of things he can do each week and hand it to him (keep a copy). Many men will do what they're asked to do if they know what's expected. Don't be general in your expectations; be specific. Say, "your job is to pick up the shopping list each Monday, do the shopping and put it away," for example. Whatever you do, show appreciation for your brother's contribution however small. Getting angry with him for not doing enough will result in his doing even less. You can't change him at this stage of the game. He's probably in his 60's too and pretty set in his ways. Stop trying to change him; it will only result in frustration.

Again, give your brother specific, written lists of your expectations. If he can't do what you're asking, then ask (don't tell) him to please pay for someone to come in his stead. You will probably have to find that person and negotiate the cost but it will be worth it. Show appreciation for everything he does.

Take care of you. You can't help anyone if you get sick, too. So, set limits. Speak to your mother's doctor and ask if he can legally qualify her as having dementia. It will take a doctor's approval but once you get that, you have other options for her care and may be able to get her out of that lease. Once you do that, she can be placed in the right facility for her.

Of course you appreciate her still being here; she's your mother, but you can't do it all by yourself. You need help. And you need to take care of yourself.
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I am going to add to what I said earlier. These are a few practical tips on how I run my days that I help my mom and perhaps it will help give you some ideas.

If I know I am going to be taking her to a medical appointment, I will (if I feel up to it, no pressure) fix a meal and prepare extra so that I can bring that to her on the same day as her appointment. Kills two birds with one stone and she is happy to not have to cook that evening. This is very easy to do and you do it at your own pace and schedule. Only do this if you have time and energy.

If I know I will be visiting her, I always bring something with me. Usually it is a few groceries, something like milk, cookies, cleaning supplies, etc. Only a few items. This helps always keeping her pantry or fridge stocked and I don't have to lug a full load of groceries each time. I do however, do a grocery run for her every few weeks or so. My grocery does the shopping and I pickup at the store. I do not have to go into the store for this service and it is a nominal fee. It's done curbside and I deliver and put away the goods at her home. I ask my mom to keep a running list and I do the ordering from my pc at home for her. I also take the liberty of adding items once in a while that I think she needs and forgot to put on her list. Or I will add an extra item or two when I think she is underestimating how many she needs of something. This keeps the frustration level down for me.

I take PURPOSEFUL breaks from her when I am stressed. I will take 3-4 days off and just handle my own life and that can be renewing for your emotional and physical health. I also try to limit the number of visits per week. Sometimes you can't but other times you CAN get that 10 day break. Take advantage of that. If you have unplanned ER visits, all bets are off and you must allow yourself a BIG break when it is safe to do so, when things are resolved. ER visits are draining, physically and emotionally.

I am kind but firm when I explain to my mom how I want to handle something, whatever that may be, groceries, cleaning, etc. I tell her exactly what I need her to do (within reason) and what I will do. I am flexible, because life happens. I also utilize Rx delivery services so I don't need to run to the pharmacy for her.

I give some thought to what tasks I will handle before I leave my home for a visit. It might be changing the bedding, taking out recycling, cleaning a sink... this way I feel in control of what I am willing to do without getting frustrated about it. And some days, if you are tired, perhaps you do only one thing. That is ok. You will get to other things when you feel up to it. You decide what you are capable of doing that day.

I hope this gives you some ideas on how someone else structures their visits. It's not a perfect system by any means, but it has helped me.
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Beatty Nov 2021
Great ideas!

You have created a good system that works for both of you. I use the word *created* as it it is clear your setup didn't happen by accident.

I like how you have bundled some smaller tasks & factor down time in after bigger tasks ie ER visits (just sitting around there for 6 hours or so is so so draining). Being realistic about your capabilities & energy is very sensible.
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Hire help anyway and if you must, tell her they are friends.
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As harsh as it may seem, walk away and let her handle it. You deserve a life or yourself. Do not feel any guilt.
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Print this letter and give it to her to read. There is enough guilt to go around.
She wants your company but doesn’t know how to ask for it.

Tell her she is hurting you and you need her to stop... Tell her if she doesn’t hire a full time caregiver you will just stop being her slave.

Think back about how she was raised by her own parents (if she ever talked about it) and maybe you’ll understand why she’s acting like this. And it’s obvious she has a fave kid, her son. Don’t let this hurt your feelings, act like a duck and let it fool off. And stop enabling the way she is acting. In other words if she doesn’t like a blanket, tell her she will have to live it, you’re NOT taking it back
Stand your ground. She’ll get sooner than later.
love and light and luck
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rovana Nov 2021
About the blanket - I would simply refuse to do any shopping for her. She has money, right? Than she can pay for a personal aide for that. Actually in response to complaints: "Sounds like you have a problem, what are YOU going to do to fix it? I am NOT the solution.
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Not everyone is in a situation where they "should be thankful" that she is still there. Especially once age can amplify personality quirks/disorders that were not so noticeable when the elderly person had more self-control. You need a break. Write a letter to the doctors/whoever if you feel you need to explain the situation. And ask for help. Maybe there is a social worker at the medical group? I have no help except to say that I would not be taking back a fourth pair of shoe inserts for ANYONE. And $10 clothes stopped being worth the money, maybe, sometime in maybe the 1970s.
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Yes..My retirement stopped fast at 67…mom was in an independent apartment but not independent. so exhausting..I did it for a few months then she was admitted to assisted living {after a 8 month stay in a memory care}....still so so much to do…many MD appts, shopping, social needs, church and a LOT of complaining. I am sick of it but now days an 88 yr old can live until 100. I knew I could not make it years and years without straightening my thinking out. I saw a mental health counselor to learn that it is NOT my job to keep her happy. I no longer worry if she is happy. My jobs to keep a good roof over her head, good food and safety. The weeks I am sick of it I pull back emotionally. I visit on a schedule..Sunday, Tues and Friday..if a medical appt comes up I use that day as her visiting day and keep to only three days a week. I also try to never think about how I will be 83 when she is 100…oh my!!! Good luck..get some counseling. It helps greatly...
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Wow! I feel your pain and am at least glad to know I'm not the only one out here in this boat! My mother is a carbon copy of yours. I took care of my dad with no help from my siblings and I'm now left to do the same with our mother. I understand their reasons, which don't even come close to mine, but why don't I have the same rights? Why do they get to choose and I don't? Because they both live in other states, that's why. I'm new to this forum, but pretty disappointed in that there is clearly a desperate need for relief to caregivers, given my own situation and the posts I'm reading, but absolutely no constructive advice, help or legal resources. Where I live, there are only resources, protection and help for the elderly, but absolutely nothing for caregivers, families, etc., Those that comment that you should just "learn to say no" or "step back" clearly haven't experienced the consequences of "abandonment" or "neglect" as dished out by the state adult protective services agencies. It's not even an option for some of us, even having come from broken or abusive homes on any level. If your parent designates you as an emergency contact, you immediately become their "caregiver" whether you agree to or not and no one cares that your elderly mother may be a psychotic narcissist, all they see is a poor, sweet, helpless little widow so you will get no sympathy...,. Personally, I've consulted with three elder law attorneys and, even though I've never been legally or formally appointed as her legal guardian or caregiver, none of them were able to offer me any help whatsoever. Sorry for the rant, but sure would be nice to see some actual, realistic suggestions in this forum. If your state laws don't formally prohibit you from "stepping back" then I would suggest you run, don't walk, to the nearest exit and move. There's no way to do it halfway and good intentions will only get you in deeper.
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rovana Nov 2021
I'm curious about the state you are from, and can you give some specific details of being forced to provide hands-on caregiving against your will? Also, since you have been abused, can you have a therapist issue a " "prescription" that you have no or limited contact? Can a lawyer work on your behalf? Or is it the case that if you volunteer to help somewhat you get landed with the whole enchilada of caregiving? If all sorts of services exist for elders, can you insist that yours use them first, before calling on you? Would honestly like to know more specifics.
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For the sake of your health and sanity, please hire someone to run the errands for you. They will be able to objectively set boundaries with your mother and enforce them. You can negotiate with your brother to split the cost.
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All caregivers deserve a break, and you also need to think of your health and future. I am a senior citizen caring for a very elderly mother (98 years old), but my mother agreed to live in a "continuous care" facility when my father passed away about 9 years ago. She began in independent living, but is now in a memory care unit with advanced dementia. There may come a point where your mother needs more help than you can give her. You both need to plan for this. Be honest with her about your own capabilities. You may find that as you get older you just can't do as much as you used to do for her. Let her know this, and prepare her for a time when she (and you) may have to have assistance from outside aides, and also people to do housekeeping. This can be a painful discussion, and it may take time to get her to accept her own limitations and yours. Ultimately, you have to create your own boundaries. While she is still capable of signing legal documents, make sure all of her paperwork is in order. She needs to set up powers of attorney for medical and financial matters, a living will with her medical directives, a will if she has assets, and many financial institutions have their own POA forms (banks, credit card companies, etc.) You may need to get an attorney who specializes in elder matters to help with these legal forms. Contact a local social worker if you need to be connected with a pro bono attorney. The social worker may be able to help you have the necessary conversations with your mother. I know it's hard, and you would feel so much better and more motivated if she expressed gratitude for what you are doing for her, but try not to take what she says personally. You know that you are the one keeping her going with day to day care. Keep looking into ways to make things easier for you. Can you utilize online shopping more (if you think that would help)? Take care of yourself, and take vacations and breaks when you need them. You said she would allow aides to help when you do this. Take advantage.
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Hi Ann123,

While it's true you are blessed to have her with you, she is also blessed to have you. But it sounds like you have spoiled her, and that's not good for either of you.

You need to set some limits. For example, you will only go back to the store one time on any one item, and it has to be for a good reason. I realize "good reason" is something she will try to stretch, but put your foot down when (not if) she does. Tell her you will be no good to her if you drop of exhaustion.

My mother, now departed, used to equate service with love. Ask your mother if she is doing that. Ask her if there is some other way you could show her your love, rather than running around doing redundant tasks all the time. Ask her if she loves you!

Tell her you want to feel loved too, but you don't when she complains about you to the doctor, etc.

Those are just some ideas. I'm not a professional counselor or anything close to it. But I have learned a lot about dealing with a demanding mother. If you haven't read the book Boundaries, start there. Then read anything else by those same authors. They specialize in difficult relationships.

God bless.
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She sounds really spoiled. I'd suggest cutting the visits back to 2x a week MAX for everything, shopping, her infernal returns, and so forth. If she throws a fit, just say you can't do more than you are.
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