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A recent response to my caregiving situation as emotional/mental whiplash was spot-on.


Current situation: we've had TV sound/earphone problems in Mom's room requiring days/weeks of troubleshooting/frustration. Mom said she didn't "need sound" but when I asked if she truly wanted to watch her one TV channel without sound for the next months/years while she is here on hospice, she said yes but she felt bad for bothering us.


Here's the dance: "I don't want to bother you" = I really want it but I don't want to outright ask and I will wait for you to volunteer. I don't think she means it, as it is a very embedded Japanese trait. I've been participating in this dance my whole life.


She has said she would go to Assisted Living (while on hospice) because she knows what a burden she is and never wanted to hold me back but I know this dance. She is actually thriving and happy while living with me and I don't see the end anytime soon.


Having said that it would almost be "more work" placing her there and having to visit several days, if not more, weekly. Why visit so often? As she has said she doesn't need anyone but me to make her happy. When living independently 5 houses away I visited daily, knowing/feeling her happiness depended on me. My brother-in-law said it seemed to be "my problem, not my Mom's". I don't know why but I found this very hurtful and unsympathetic to the complexity of a lifetime dance. It's just not that easy and doesn't help my already conflicted/fragile state-of-mind. I'm afraid that once I place her she'll pass sooner rather than later and the last part of her life without my frequent visits will be sad. This is exactly how I never wanted it to be--I was a great daughter until the end, when I "blew it" and she died sad and, perhaps, alone.


Is this "my problem"???

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Dear Daughter, Your brother-in-law used clumsy words, for sure. His words speak to his own (male?) worldview and perhaps lack of empathy or ability to express his deeper emotions. Of course you found his words hurtful and unsympathetic. That said, from my own experience [not Asian, but been-there/done-that], I can say: It is NOT easy, for ANY of us; I truly understand your conflict and fragility, I've lived through it. You use the words 'dance' -- and that describes all of our experiences--most of us have never been 'here' before, and every situation is uniquely beautiful/ugly. My experience forced me to analyze and revisit a lifetime of an imperfect relationship with my mother, and accepting that there really is no "perfect", except by mere chance &/or luck. I did my absolute best (imperfect); I educated myself about acceptance, grace, dementia, and stayed connected with this group. In my words, I will say to you (from my experience), it is a sometimes scary, not fun, "inside job". That's not a judgment at all. I had to put on my big-girl panties, which I HATED doing. I had to come to grips with the fact that I hated having to address acceptance of how things are and were with my mom, my self, and our relationship. It can be done gently and lovingly toward ourselves AND our mothers. Whether, and to what degree, our mothers can get to a degree of peace and knowing you love her and want her to be at peace is truly her own personal spiritual "work", not yours. Maybe our moms are not capable of 'getting there', depending on when and how they were raised. I am comfortable and fairly confident that I have done my best and have clean karma. Yes, I've been angry, impatient, and 'mean' with my mom (my words, and rarely), when pushed by exhaustion and frustration. We are all just human, after all.
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God bless you for wanting to do right by your mom. While I am not Asian at all, I had the same awkward and frustrating "dance" with my mother. She had many unstated expectations and got frustrated/disappointed when those needs/desires weren't met, even though she wouldn't bring herself to express them.

I finally learned that I should not take on the guilt that I "blew it" or "messed up" just because she framed it that way in her mind. I also learned that sometimes I had to choose what was best overall either for me or for both of us, even if it was not what she preferred.

With all compassion, I will say that while my mother did prefer to be home with me instead of in a facility and I am glad I was able to do that for her, I really should have placed her in a facility sooner. BUT with an understanding that I would not necessarily visit numerous times as she may have liked because that would have indeed been "more work" and draining for me to have extra travel.

A therapist is definitely something you should do for yourself and your mom. The stress of your obligations, hurt and confusion affects how you think about and act with her and it also affects how you interact with others or at least your demeanor overall.

Once my mother passed away, I discovered that my stress/sadness/frustration had been affecting my kids far more than I realized. They and other people around me had been able to see how worn out I had become. Have you ever been around someone who was sick, hurt or sad? Remember how you felt sorry for them or maybe weren't sure how to help or what to say? I think to some extent the friends/loved ones of burnt out caregivers can feel that way.

All that being said, your mother is not going to release you from the expectation to do what she wants. She is in a difficult situation, for sure, and probably doesn't realize her reluctance to express her true feelings causes more stress for you instead of less stress.

You have to stand up for yourself and be honest (but still respectful) with your mother about what you can handle, what you need from her, etc. I believe it is our responsibility as children to honor and respect our parents, to make sure they are safe, fed, housed, etc. and be there for them emotionally and physically in a reasonable way....but we are NOT ultimately responsible for their happiness. That is a job to big for any one person.

Your mother has decisions to make. You can help her make good decisions, but you have to be okay with letting her experience the consequences of her decisions. She may adapt better than expected to some changes if you are resolved to stick to your guns and are firm, but positive when enacting them. But even if she resists, gets sad, etc. it is not your fault she chose that response.

I say this again with compassion, love and respect. It took me a long time to learn the things I am saying here and I still didn't act perfectly on that knowledge after I learned it. God bless you.
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Davenport Dec 2021
Me, too.
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Allowing your mom to experience the gift of being cared for well by others with opportunities - social activities, friendships, her "own place" that comes with lots of help... - it not the mark of a daughter "who blew it" but of care and love. Giving your mom this opportunity is also a gift to yourself. You will know she is being cared for well and can allow yourself the freedom to explore new opportunities for yourself, Since you feel so conflicted about this decision, I truly think talking this over with a therapist would be wise.
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Davenport Dec 2021
I agree 100%!
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AsianDaughter: Imho, do not buy into the acrimony that your brother in law is attempting to serve up.
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Davenport Dec 2021
Maybe he's not consciously being acrimonious ... maybe he is clumsy with his words and emotions, and is trying to soothe his sister-in-law. ?
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Hi...I posted and then decided to erase it because other posters already said the same thing.
(Try to get into therapy for youself to strengthen your mental well being. It will help with the journey that you are on.)
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1.Your BIL needs to shut up.
2.This dance truly resonates with me. I feel you. And rest assured this is not exclusively a Japanese trait. ☺️
3.Is no one else helping at all?
4.This is NOT your problem alone. It is unconscionable that ‘family’ hasn’t jumped in to share this exhausting role you have.
5.Lay it out to family and be honest with yourself, #1 daughter!♥️🙏🏻
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AsianDaughter Dec 2021
I have a very supportive, patient spouse who had a completely different relationship with her mother. She tries to understand but I think it’s very hard for her, too. She has put her life on hold for a long time and in many ways it is “her turn” and I feel this daily.

Thank you for your kind response.
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The "lifetime dance" you portray was beautiful communication, an understanding of your mother's heart and her desire...you honored that with respect! Decisions must be made in their best interest, and it is never easy. Yes, we die, and we all die alone, no one comes with us, that's for sure. For the most part sadness isn't an issue in dying, it's at that moment for all an accountability for their own life, same as your experiencing while alive, "did I do enough"?

As far as your question, "is this my problem"? The only problem is what you choose to hold on to. Are you able to fully except the journey in your relationship with your mother? Are you truly able to forgive yourself for not knowing or understanding all that transpired between you both? Please give yourself a break, we miss things in the midst of what we seem to be witnessing on a daily basis; I know I do miss things now for my mother.

Be good to yourself, guilt is something only we choose to carry it's not worth it. For me my mother is miserable most of the time; sometimes I can make her laugh, yet I know there is no recall of the moments we share these days. I live with her, she chose to stay at home, and I am honoring her wishes to the best of my ability. I work full-time and have a companion come several days a week while I am away. We all do what we can and so did you! Be good to you... within your OWN thoughts. OH, and don't listen to anyone who wasn't there in your experience, they don't know! Greatest respect.
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AsianDaughter Dec 2021
I have not yet accepted the journey…her grandchildren will be here for Christmas and I feel as though it will be another part of my acceptance. Thank you validating my feelings.
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Of course not. Let your brother in law’s comment roll off your back. Just say quack quack 3 time (remember those ruby slippers?).
seriously, your mother is happy now, so just remember the good times you shared and start living your life.
with love
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Be proud of all the love and care you have given her over the years. You didn’t “ blow it”… she knows how much you love and care for her. Maybe join a support group. Be kind to yourself. You are important too and deserve to live your life with calm and happiness.💜
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Personally,I think it’s very wrong to bash “ nursing homes”. There are some very GOOD long term care facilities that absolutely care about the residents and take very good care of them. It’s that “ one bad apple spoils the whole cart” thinking and it’s not fair to frighten people who really NEED to place their loved ones. We need to be compassionate on this forum and not scare others but offer kind advice and respect the decisions of others. Just my opinion as a retired nurse who has worked in both hospital and long term care. Hugs to everyone having to make these decisions. It’s a cruel and sad disease for all of us.
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ECW1935 Dec 2021
Good morning. I did not read into "bashing nursing homes". I read, her mother did not want to be in one. I get it...I am caring for my mother in her home, knowing this is her wish. Tired too, and not always giving her the best care; that I alone rate myself for the very best care every moment of every day! I work full-time and have a companion come each day for her. I am here as I witness her decline and know at some point, I will have to place her in a facility as well without fear, I will be near as the "dancing daughter". I have witnessed cruel and unusual nursing-home care behavior; this disease creates stress on everyone. Blessings and strength to ALL THE CARE GIVERS!
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Your "problem" is going against your gut feeling. Reading between the lines, it seems you want to care for your Mom at home. You know she prefers it (who wouldn't?) and it's actually easier on you (no trips back and forth). If the time comes when she declines and you need to place her in a hospice facility for her final days, at least she will be a better setting than dying in a Memory Care facility you both really didn't want. You sound like a wonderful daughter to a loving Mom.
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Asian daughter, completely disregard bevthegreat's post. She obviously had a bad experience somewhere. She fails to realize that facilities are different and each situation is unique often requiring facility placement.

And this same.person would leave a bed bound person alone to run errands with only a camera to monitor the elder.
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deosgood Dec 2021
bevthegreat had a great answer and theres nothing wrong with running a quick errand with a bed bound person, in most facilitys they leave them for hours unattened, they have a lot of patients to cover and any nurse there will tell you there always understaffed.
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It is a problem for both you and mom.
Mom doesn't want to be a burden.
But you and I both know mom will live longer and be. Happiest living with you.
Nursing Homes are Horrible! I have 1st hand experience. They are all understaffed and leave patients in their pee and poop for min 45 min to hours.
The Care is existing and 3 meals a day and if you're lucky a bath/shower every couple weeks.
The therapy is a joke. If she's deemed a trouble maker, they'll just add med's to keep her zombie like.

She would be very unhappy, lonely, scared, feeling unloved and abandoned and probably die within 6 months all alone in a strange room.

You don't need to ask her what she wants.
Do you want to watch TV without sound?

Would you like to go live in a strange Unfriendly awful place?

When mom says she doesn't want to be a burden. She is telling you the truth but remember, she took care of you when you were a baby and for years while growing up.

Yes it's a burden, A Burden of Love and you should make mom feel you want to do this for her so she'll have the best care she can have and be at home where she belongs and is loved for her remaing life.

Do what you would want done for you.

Prayers
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bundleofjoy Dec 2021
i agree.

at the same time, you mustn't sacrifice your life.
that's not right, and very mean, towards yourself.

somehow, you have to find a way to be nice to your elderly parent/s, and to yourself.

i hope AsianDaughter, perhaps you can hire in-home care.
or whatever solution you deem best, so your life can flourish too.

it is not ok, for us daughters to be sacrificed.
(i say daughters, because it's almost always daughters)
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It sounds as if YOU moved your mom from living by herself into your home, and now you are feeling burdened. Before moving her into assisted living, see how much she is able to do on her own. Encourage her to do whatever she can while she has those abilities. All you mentioned was she had bad hearing. What else is wrong with her? If MEDICALLY it is too hard for you, you can either get a caretaker to help while she lives in your home, or you can get RESPITE care, which is a little lighter than Hospice, or you can just move her to assisted living after telling her that is what you need. DO NOT ASK if you know she won't be real or truthful, but DO make the conversation EASIER for her to tell the truth. Tell her these are the options, and then GIVE her all the choices. That way, she can CHOOSE one over the other and be truthful.
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Davenport Dec 2021
I just want to remind my friends here that many of us are NOT able financially to hire respite help or a regular caretaker. My mom had 15+ years of LTHC, and it covers a mere portion of 5-days-a-week (for only four hours each day) in-home care. And us 3 'old' (in our mid-60s) daughters are spending our 'golden years' making up the in-between times, including the doctor-recommended 'never alone' dictate.
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If she's going to stay in your home, or even in an assisted living facility, try to get her entertainment that works for her (including working earphones). I also got an old fashioned radio for my mother so that she can listen to the classical music she loves. As people get older, their lives become smaller and anything you can do so that she can enjoy herself independently will help. The advantage of assisted living/hospice is that there are always people around, so in a sense, she won't be lonely. You are not responsible for her sadness and happiness. That comes from within each person. All you can do is keep telling her that you love her and do what you can to make her life comfortable and enjoyable. Let her know that you will keep her in your home as long as you are able to do it. Please try not to feel guilty about what you can't do. Do what you can. There may come a time when you are not able to give her the care that she needs, and you should have a Plan B for aides to come in to help her (and you) or for her to go to a skilled nursing or hospice facility if that happens. As an example, my mother, with advanced dementia can't do anything for herself. She needs to be fed, bathed, assisted to move from her bed to a wheel chair (she can no longer walk), and despite the fact that she weighs less than 100 pounds, she is a dead weight and I cannot lift her on my own. She is in an excellent facility where they show her a lot of love and care for her professionally.
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bundleofjoy Dec 2021
hugs!! courage!!
amazing all the love you give, NancyIS, AsianDaughter, everyone on this website.

i wish us well!!
:)
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I read your post this morning and I am you. I feel for you and the position you’re in. I’m not Asian but this “lifetime dance” you speak of it very real in my life. I put myself here and I know that. I am the central person in my parents lives. I am a very happily independent single woman and because my brother is married, he’s not depended on the way I am.
I fear for the day that heaven forbid my mother survives my father. I feel awful saying it, but I actually dread it. She plays the same dance your mother does. Won’t come out and say what she wants, and if I don’t guess correctly- she’s miserable and then it’s my fault. My days depend on her days. My life is not my own, even now. I’ve done this dance for so long, I don’t know how to get off the dance floor.
All said, I don’t have answers, I’m only writing to let you know you’re not alone.
Your BIL is indeed out of line, he should zip it. It’s good to vent, so continue to reach out on this forum. Or to me directly if you’d like. I have no one to vent to, my brother is like your BIL. This forum is a Godsend. Good luck and hugs to you 🤗
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bundleofjoy Dec 2021
big, bigs hugs to you, hollypalmetto and AsianDaughter!!

holly, you wrote:
"I am a very happily independent single woman and because my brother is married, he’s not depended on the way I am."

same here.
but it's absolutely not ok, for your parents (and siblings) to dump all the problems/stress on you. it must be divided between siblings. everyone can contribute in some way. even a minimal way, can make a huge difference to someone's life (yours, and your parents').

---------and actually, i'm not so sure it has to do with your brother/my brother being married.
---------it has more to do, i think, with the fact that, holly, we are women. you could have been married, and probably, it would be exactly the same scenario!!!

...maybe you would like to get married (if/when a wonderful man appears). and your brother's inaction, has consequences on you meeting people, maybe your career, etc.
it has many consequences.
meanwhile, you helping your parents, is supporting your brother's life!! you're making it possible for your brother to have a nice family, nice career, get wealthy. it's thanks to you.

if you didn't exist ---- even though your brother is married, he would have to do a lot more (whether that's finding a facility, whatever. he would get the STRESS/PROBLEMS).

some men (of course, some women too) are extremely selfish.
if your brother, holly, shows he cares about your life, and the consequences on your life for his non-helping, that's at least a step in the right direction.


---
dear holly,

you wrote:
"My life is not my own, even now. I’ve done this dance for so long, I don’t know how to get off the dance floor."

hugs.
there must be a way out.
please don't sacrifice your life.

you are a woman.
you have a right to a full life, not just your brother having a right to a full life.

this world is full of sexism...and other "isms"...

say NO to this sexist thing, that 99.99999% of the people caring are women, while men go and enjoy their lives, getting wealthier and wealthier, while we women often get poorer, and poorer.

you said, you're in the same dance (guessing/being punished for guessing wrong)....by the way, i'm in the same dance.
...in my case, and i believe in your case too, it's actually because by your mother not EXPLICITLY asking what she wants/requests, the responsibility is dumped on you. you see, as long as someone else is making decisions/doing things, she thinks she can blame you. for example, let's say you organize in-home caregivers (she didn't explicitly ask you, but secretly she wants this). let's say the caregivers are objectively awful people -- your mother can blame you. whereas if your mother is the one who asked explicitly for something, then suddenly she's responsible for some decisions that were made.

it's all about keeping things open, so she can BLAME her daughter, later....

---

you said, your life is not your own.

please don't let it be like this.

when i was a child...around 3 years old...
my father asked me, "who owns you?"

i was certain he does, so i said, "you own me, father!"
:)

he said, "no, you own yourself."

every year, he asked me the same question.
every year, i said, "you own me, father!"

at some point, i said, "i own myself".

bundle of joy
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My mother told me recently that when it comes to my FIL and helping SIL, DH and BIL...that *I* am part of the problem. I really had to think about this for a bit because at first I was hurt. How could I be the problem when all I wanted to do was help? But that was the problem. She reminded me that there were three other people and that due to the strange dynamics of our relationship with FIL I am frequently the one who leads and directs ALL confrontations with him. And I do mean all. If we have to have painful or uncomfortable conversations with him it's usually up to me because he was very abusive to his son and daughter when they were children (and honestly still) and BIL and SIL live there and BIL tries to maintain the peace so frequently it is easier for me to be the bad guy. But it really resonated with me one night when he said that all I ever do is visit and start fights and DH looked him in the eye and said "You know what dad, she shouldn't have to, it should be me and SIL having these discussions with you but you won't listen to anything we ever say and at least you don't talk over BEG and listen to her. But it's not fair to her to always be the bad guy just because you are too stubborn to listen "

So why do I share that with you? We all get comfortable in our "roles". We all have a part to play and for many of us it goes back to childhood and may be cultural, familial or some combination of family secrets who knows. But it is ingrained in who we are and how we interact with people including our parents.
Maybe when your BIL said it was a "you problem " he has observed that you try to please her before she even let's you know what she needs or anticipate her needs or cover up guilt that you'll make her feel bad. I don't know your family history. I know I jump in for my DH and SIL because it is very hard for them to, I'm the protector. That is my assigned role. Normally I'm a total peacemaker in every other area. But with him I go total mama bear. Because I know what he did to them and why it's hard for them to stand up to him and now they are his caregivers.
So maybe consider why you have the reactions to your mom. Is there some guilt that is ingrained from childhood. Do you respond to her a certain way because she built that response into you as a child? I have some auto responses with my mom. My girls have auto responses with me. There are just some things we just get used to and don't even know we do it. Sometimes out of love. Sometimes out of self preservation. Sometimes guilt.

There is nothing wrong with her going to AL if that is best. If you want her with you and she is happy and safe, awesome. If you don't that's awesome too. Because that doesn't say anything different about your character. It just says you want to make sure she is somewhere safe where she can get the care she needs.
People so often associate caring for a loved on as hands on care. I feel like I have a duty of care for my loved ones certainly. Even FIL. (sigh). But I don't necessarily feel like that duty of care requires me to provide the care myself. I think we have to give ourselves grace and stop thinking we are the only ones who can do something.
Take a real look at why your mother's passive aggressive dance bothers you. Take a look at why your BILs comment bothers you. And give yourself permission to think about what you want and need not just want your mom wants and needs.
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Your BIL is looking on at the situation through his own eyes - very different to yours.

I do get being struck by tactless (but maybe with some truth) comments myself. As you are already being spun around in an emotional twister, you may be more raw & sensitised.

I have a lovely book by Melody Beattie "The Language of Letting Go". It's a daily diary style but I believe she has other formats. She examines a lot of feelings surrounding caring for others & personal boundaries. It has helped me a lot.
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Hi! I was the "whip lash" commentator. Your recent posting here is of obvious conflict. I'd get a few sheets of paper, on one list all the good things, another not so good and then the worst of what is going on. Then, put them away and go back a few hours later. Still confused? Do it again on new sheets of paper. Go back to this the next day. I wonder what you'll think about when you re-read what you've written. Your posts here are good, but jam packed with conflict (understandable). My Mom was an editor, father a lawyer, and as a kid-did I have to present my arguments concisely and clearly-even did the exercise I just described. It ain't a perfect exercise to try, but clarity is essential now, especially in light of your situation. You owe it to yourself. Your brother in law obviously knows the situation you're dealing with, and his remark stings, because.....it might have a grain of truth to it. Put his observation on one of your sheets, might be something to think about.
I just stepped away from a family member's drama. In doing so felt nervous for standing up for myself-but-better that than biting my tounge and feeling like a jerk for pretending that their behavior was/is just dandy around my husband. Tell ya whut....it feels really, really good to feel good about doing that! There's just too much else going on with care giving for my husband with early dementia to be bothered with sillyness!
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Concerning my wanting things just right for my Mom because she suffered from Dementia my brother told me I was my own worst enemy.

I think what your BIL meant was that you have never set boundries with Mom. We should not let our parents think that we are the only one that can make them happy. When a spouse passes the surviving one needs to find a life of their own. Sadly this does not happen. Then, usually one of children, is made to think that they need to give up their life for the parent usually a daughter. Especially, in certain cultures.

Now is not the time to set those boundries. If Mom can afford an AL, she can afford an aide. That will give you a chance to get away. Its Christmas. Do what you enjoy. I am assuming Mom is at your house. If she is OK staying in her room and watching the TV so be it. DON'T ASK, just do. Think she may like something to drink, take it to her. U just baked, take her some of it. You know your Mom well enough to know her likes and dislikes. If she wants something, she is able to ask for it. You will always hear "I don't want to be a burden" when u ask if she needs anything. Its a passive-aggressive response.
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Get the sound on the T.V. fixed.
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AsianDaughter Dec 2021
Fixed :)
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I am a little confused as well, it may be me and not enough caffeine. Do you want your mother to live with you or not? That is what I am confused on. You said it would be easier to have her with you but I am not sure that is what you actually want. Being a caregiver is hard, very very hard but I agree with the above answer that a heart to heart is needed for both of you. One thing I do believe without a doubt is that your mom would not want you to be mentally exhausted or physically for that matter. Your mom wants you to have the best life possible. Your mom would never in a million years want you to be hurting in any way so you must above all else watch out for your well being and your mental state because YOU are important, YOU matter and if you are not healthy physically and mentally your not good to anyone, you have heard this I am sure and it is true and as a mother myself I know she wants you to be the happiest you can be.
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AsianDaughter, as hard as it is, I think you owe it to yourself, your mental and physical health, your conscience, and most of all your mother, to have an honest, heart to heart conversation with her. You need to tell her while you love her very much, you have your limitations.

Your mother deserves to know that you love her and help her to your best ability, but not to the unreasonable expectations of your traditions.

You don’t want her to think that you love her any less because you can’t be superwoman.

Believe me, any loving mother will understand and accept her children as they are.

I also recommend you talk to a grief counselor. He/she can give you validations and clear perspective on your situation.

From my perspective, you have NO reason to feel any guilt.

Do your best and be at peace with it.
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Katefalc Dec 2021
How can you have a heart to heart conversation with a person who has dementia or Alzheimer’s disease and can’t even decide what they want to eat or drink? It’s not realistic. It’s like handing them the car keys. Sorry…. I disagree.
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Your query is a little difficult to follow, to be honest.

Let me see if I got this right…. She is worried about being a burden, and you are conflicted because although you tell her that she is not a burden, she actually is? Your BIL’s comment that it was a “you problem, not a her problem”, is that in regards to the fact that you do feel like she is a burden?

Please pardon my confusion, it’s been a long day. It’s supposed to be MY day off, and yet I’m still somehow looking after everyone else…
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bundleofjoy Nov 2021
hugs lizbitty!! :) :)

it is strange, how many of us, even on days off, still look after other people...

you wrote:
"It’s supposed to be MY day off, and yet I’m still somehow looking after everyone else…"

we must be kind to ourselves too.

if necessary, maybe we should see ourselves as a separate person: look at yourself from the outside, and take that cherished friend out for a real break, doing wonderful/relaxing things.

so many of us are used to being kind to others...
let's make sure we're kind to ourselves too.

we don't want our future self saying to us, "why did you abandon me? my needs? my wishes? my life wasn't important to you?"

hug!! :) :)
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