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My mom has beginning dementia and she's visiting me from India. I will take her back next month - she refused to let me apply for a green card here.


So I want to hire a p/t aide for a few hours for her. Mom lives in a senior center which is good only for regular seniors, not dementia. Mom is very upset about getting an aide and insists she will manage on her own.


Mom doesn't care that both I and my brother are in foreign countries and cannot rush to her side in a heartbeat. She says stupid things like,"I hope you come for my funeral at least " etc. I feel with an aide's help mom can still have a better quality of life but mom doesn't get this idea at all.


I am very tempted to leave mom alone in her senior center and wait for a catastrophe. I'm getting tired of being a good kid and looking out for her. Has anyone actually left their parent alone because they were too stubborn to take help?


I can, of course, blackmail her she will not go back unless she accepts an aide.


Thank you!

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I have found an aide for mom but I just worry that mom will somehow fire her after I leave. I know mom will badmouth me to her friends and neighbors
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When you take her back to India next month, it would be good to allow enough time to see the ‘friends and neighbors’ you think she will badmouth to about you. Explain to them what is going on, and ask for their support to get mother to accept help. Perhaps they could monitor her and keep you informed as well. It might be worth writing to them in advance to let them know that you would like to see them when you come, and how concerned you are. That might be useful for your mother, and also help protect yourself against the badmouthing. If you will be on a tight time schedule, it’s worth setting it up in advance.

Don’t ‘blackmail’ your mother into staying with you. It could be a disaster for both of you. And most people can't stop a parent from being stubborn when they are in the next room, let alone on the other side of the Pacific Ocean!
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jjmummert Nov 2018
Very sound and practical advice, Margaret.
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I thought there was family where she is going? You will need a support group there. Maybe Mom should not live independently. Maybe time for care/nursing home in India. Don't think it wise to keep her here in the US. She cannot get any of our services.

When it comes to consequences can the senior center handle things.
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If you have alerted the friends and neighbors about the real situation, then you won't have to worry about her "badmouthing" you. Make arrangements for her care as you can. Who in India is authorized to act on her behalf?

I found that my own life had to go on hold when my late father moved in with me. It's something we have to get used to. Consult with a pro in dementia and find out what you will need to nail down in India so you can sleep at night. Take her back and just do what needs doing, whether she likes it or not. As much as you can, keep her in ignorance about her future. And stop expecting her to be rational about any of the plans for her future. Just have things lined up and ready to go.

When she makes a funeral comment, just agree with her, then let it go. You know how she is, just ignore the intent and remember she is not really still the mother you knew.

Do what needs to be done for her safety and care and and don't fret. Some things we can do, and if dealing with someone who doesn't have it all together, we just do it or we pass our parents on to people who can do what needs doing.

I hired a morning attendant for my father--who was living in a facility near me, but didn't offer as much help and care as he needed. He was closer to her than to me, which was a relief, as it gave me some time to live my own life. Whatever he said about me was irrelevant as long as he was safe and cared for. When I was young he was "all there," loving and somewhat lovable. But those things change. At advanced old age, he was a new person.

We do what we can and don't beat ourselves up for our mistakes when we first walk this painful path. Much later now, I consider my dad a "learning experience," and regret my failures, but don't beat myself up about them. Your mother is your learning experience. I hope you can do the best you can with what you have to work with, and it lets you sleep at night. Loss of sleep can contribute to your own dementia.
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JoAnn29 Nov 2018
Well said
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We have done that. It is hard and it caused us a lot of anxiety. In our case, the senior is actually stubborn and not demented. The decision to let them go until a catastrophe forces their hand gets more complicated when they clearly can't make decisions for themselves anymore.
I am in the US and we hired someone called an Aging Life Specialist to be in contact with our stubborn senior. She is a social worker with over 30 years of experience and she has been a big help. But even she is saying all we can do is offer the help and wait until he will accept it.
There have been two incidents that I think would have required us to make an emergency visit and we didn't have to fly up there because we had her on site and she went to the ER, kept us informed and helped the senior navigate his options.
If there is someone in India who would oversee your mother's situation it would probably be a comfort to you and your brother. Is there anyone at her current senior center that could give you some guidance?
You will need to find an aide who is a good personality fit for your mom and that might take a few tries. It would be great to have some local oversight of the situation.
Best of luck.
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Um, Wren.

Could the agenda behind this be that your mother would like it if you, in her perfect world, were to relocate to India? (where in India, by the way? - big place!)

What do the managers at the senior centre recommend?

Or, are you giving the blackmail idea serious thought? - would you actually like her to move near to you?
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wearynow Nov 2018
Mom would love it if we were near her in India but that's not going to happen. She's in the south of India.

As long as mom shows up at the dining hall for 3 meals and is ok, the managers don't see anything wrong with her. They say it's upto her kids to figure out her long-term care.

Im not too keen on having mom live with me if she needs 24/7 care - its v tiring even now to cook an Indian breakfast and lunch and rush to my job and then find ways to keep her mind engaged.
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Just thinking...its not so much Mom is stubborn but that Mom is showing signs of Dementia. Because of this, you can no longer reason with her and she probably doesn't process what you are trying to tell her. I really think that you and your brother should be talking about a nursing facility for Mom. When u get her back to India have her evaluated there. Dementia is different for everyone, It can be a slow progression or change overnight. Maybe brother will need her closer to him.

I would not try to put her in a facility here. There would be a language barrier plus cultural. In Moms AL there was an Italian lady who lived most of her life in the US so could speak English. With Dementia, though, she switched back to Italian, her birth language. She may have understood English but only spoke in Italian. Another lady only Spanish and only one aide who spoke it.
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Ethicist1949 Nov 2018
In the early stages of dementia, people still have decisional capacity or the ability to make decisions for themselves. As long as the mother has decisional capacity, she can't be admitted any where without her consent. You can't force her into a nursing home or to have a side. This is a huge problem with the elderly and unfortunately the family has to wait it out until their loved one feels vulnerable enough to make a change. Could something catastrophic happen? Yes. Most of us with elderly parents just prepare ourselves for that phone call knowing that they are honoring their parents' autonomy, independence, dignity, and preferences. That is what they (and we) want the most in those final years of life and are willing to take the risks and consequences.
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If you are hiring and paying the aide, is it really possible for your mom to fire her? I agree with Margaret, I would speak to some friends and family that live near her and enlist their support in convincing your mother it would be a good thing to have an aide and "how very thoughtful of your daughter to think of it. " That should cut down on the impact of the badmouthing your mother might do. And, even if she does disparage you to her friends, YOU know that you're trying to do right by her; it doesn't matter what others think. Maybe get an aide who is computer savvy and can help your mom Skype with you. The only other real solution is to transfer her to a memory care facility. You don't want to worry about her wandering and getting lost or hurt.
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What's your brother's take on this?
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wearynow Nov 2018
Brother says to hire a cleaning lady so that the house is cleaner...he thinks mom's ok and its not dementia but mom being an absent-minded person
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In her moments of clarity, Mom is upset about her loss of privacy and she feels an aide will stigmatize her in the eyes of her neighbors - that she is now feeble and not competent enough to handle her own affairs. I will keep reassuring her that the aide will be a good companion to her.

I'm in touch with mom's neighbors and management and will, of course, speak to them about the aide. Anyway, the aide's contact info has to be registered with the management. They will . handle things for 48 hours if there is an emergency and I am very thankful for this.

As Whyarewe says, I've to focus on her safety now and my own peace of mind.

Thank you, everyone - I'm just very nervous! I know I will keep coming back here to ask for more advice!
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By all means; this is one of the few places where good advice is free, plentiful, and really valuable - kudos to all you responding caretakers!
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Sure, I've offered various kinds of help for my mom only to have her snottily reject it so I pulled away and left her to her own devices. Instead I started putting my energies into helping my head-injured older brother. It's making him more happy and comfortable and he appreciates it.
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I would not wait for a crisis. Living in a senior center she can accidently set the place on fire by leaving something on the stove and forgetting about it.
Ive dropped off meals on wheels to people that should have been in a health care unit. A lot of the places smelled like very strong urine. Some people were sitting in the dark. It did not occur to them to put the light on. They did not bathe or change clothes. They did not visit with others living there, or do activities. A very lonely existance.
If it werent for the meal, they probably wouldnt eat. If they remember to eat.
I think she would be better off with more care. To see she is toileting, bathing and looked after. So what if she gets mad. She will get mad whatever the situation. It is better that she is looked after than left alone. Good luck.
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Zdarov Nov 2018
jasmina, I have friends who do MOW and have thought about whether I could. Based on what you say I don’t think I could... and am so incredibly thankful for those like you who do. What a gift.
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Yes, I allowed my mother to be stubborn.

The last time was when I made a doctor's appointment to have her medicines checked - her eyes were always glazed over. This is often a sign of medicines.

The night before, she called and told me not to pick her up, she had cancelled the appointment. I told her I expected her to do that and after a small bit of conversation, we ended the call. My mother simply couldn't handle anyone helping her in any way. She was stubborn to the end.

Mom passed away on New Year's Day 2004, sometimes you just can't fight them. She left behind my father and I assisted him for another 7.5 years until he too passed on.
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My experience is that many folks with or without dementia initially resist the idea of an aide but many end up realizing they need one even if they don’t like it. If her senior center has a safety system with a latch on the door to alert as to whether the person had been up or out that day, someone will be able to look in at least once/day. This is true for some senior independent living situations. If she doesn’t respond or flip it to acknowledge she’s up, someone will go in. This may be necessary for a little bit but in the long run, she’ll likely need someone more consistently (I.e., if she starts wandering and gets lost, if she becomes incontinent, unable to feed herself, and so on). APS could end up involved and force the issue with requiring care provision (which actually can be a good thing). If you are real concerned, you can call APS in her county yourself and explain your mother’s self-neglect and they’ll get someone out there to do a formal assessment of her capacity. Then you don’t have to be the ‘bad guy’. Can work like a charm!
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Can you possibly tell her the "aid" is a guide that you have hired to make her visit more pleasurable. The "guide" can take her to the store, for a walk in the park, go for tea any number of things. If Mom is worried about money that you have spent to hire the aid another "therapeutic lie" might be this is a student that has to have X number of hours in volunteering and by accepting the help your mom will be enabling this person to continue their education.

You don't want to wait for a catastrophe you want to prevent them for as long as possible. (Just know one will happen it is just a matter of when..and we want to delay the when)

If she will not accept the help you should tell her that she will not be able to visit again as you are concerned about her safety and you can not spend your time worrying about her.

No one wants to admit they need help, no one wants to admit they are loosing their independence, and it mist be frightening to know you are loosing bits of your mind. Give Mom a hug and tell her you are doing this because you love her and want to keep her safe and happy and you hope your children do the same for you one day. (and remember those words because it will happen)
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Zdarov Nov 2018
Love the ‘guide’ word, things like that can make a difference, thank you.
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wren, great thread and sorry about your stress. To go on your lead-in, gosh I have the same big floating question. There are many litttle things I don’t do or stopped because she’s so resistant. Went through the ‘please let an aide come,’ her refusal, then acceptance, then rejecting them. Even littler things than that.. She burns pots of water on the stove all the time so I got her an electric kettle - no, we just can’t figure out flipping a switch then coming back to the hot water. It’s something outlandish because I introduced it. The response above about waiting for each item until they scare themselves or feel vulnerable, I’m afraid, is the answer for a lot of it.
I appreciate the response about writing to her friends, etc. ahead of time, but I think I’d wait till there in person. And within reason, have the conversations with your mom present. Like it’s a regular theme similar to whether she needs a new hairdresser.
Stubborn is the word! I think we’re the product of a different era than theirs, gosh they went through so much that we’ll never understand. I know it’s a generalization, but there was less talk of helping for weakness or vulnerability. You had to look and act tough as nails, don’t complain, don’t ask.
Good luck, wren. 💐
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moecam Nov 2018
Try a whistling kettle
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YES! But she was in an AL facility; she wasn’t utterly without help. I told her she could no longer fire hired folk without taking the consequences. You must set boundaries!
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Everyone talked out of both sides of their mouth about my mother’s so-called independence. And yes, I did allow my mother to “suffer the consequences” of being stubborn. It did not end well. But it wasn’t going to end well anyway.
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This disease is brutal! And exhausts me as I am her at home caregiver. My mom won't sleep. Period. Terrible. So I told her I would quit putting her to bed because she won't stay in bed with her cpap and oxygen on. At least when she is up walking around her nasal cannula is on. She stayed awake for over 48 hours! Finally crying from exhaustion she slept in her recliner. She still refuses her bed. But my point is she is suffering from her stubborn behavior. It is heartbreaking to watch.
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anonymous815183 Nov 2018
Dont think i have dementia,,,yet.

This is, IMO, not about stubornness. It just looks like that to you b/c you are not able to feel what your mom feels.
Some nights I just cannot sleep flat in a bed. My bones won't let me sleep. It's weird sensation and i dont think anyone understands until they experience it themselves...sort of like childbirth!
When these nights happen, I wrap myself in fluffy socks and snuggly warm covers and sleep like a baby all night long in the recliner. Some nights I just feel will be bad, so start out in the recliner and can sleep 6-8 hours. It seems I've hardly moved all night. Why not just let mom sleep where she wants to sleep and see what happens? If you try sleeping on the sofa you would hear if she had to get up, but by limiting fluids after 6 pm, she might not wake at all til daylight.
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You might consider becoming her guardian/conservator or POA and apply for these green card and financial and medical decisions in her behalf. Dementia is unkind.
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wearynow Nov 2018
I am terrified of being a 24/7 caregiver if I get mom a greencard. If she does get a GC, we have to get private insurance which will not fetch a 24/7aide as mom gets worse. It is soooo much cheaper in to get a good 24/7 aide in India.
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This post is to Infinity, i just wanted to reply about "your mom staying up for 48 hrs, and won't stay in her bed".

Did your mom have problems with sleeping before the dementia or after? Have you tried Melatonin 1mg? If not, talk to her Dr about this.

Now, this part will sound crazy I am just giving you heads up! Have you thought maybe your mom is scared of her bed? She is not actually scared of the bed itself; she is scared of what the bed stands for--sleep!

I have had insomnia my whole life and thoughout the years I have found myself refusing to go to bed because I feel I won't sleep so why bother. Therefore, I will lay on the couch and full a sleep, why?Because there is no presure for me to full a sleep.

Now, I can't say this will help your mom because of her dementia. All I do know is there is an underlying cause! This is just to give you some insight and food for thought.

I hope this helps.
Good Luck
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Thank you for this question. Can we as children compel our parents to get help when they clearly object?

My mom (83) moved here from out of state three years ago. I am her only living child (64) My husband (68)has CHF and is a diabetic, with daily health issues. He was primary caregiver for his ALZ mom who passed away 3 years ago.

My mom: Early dementia with all the poor decision making it brings, keeps us embroiled in difficult relationship with her. We have experienced first hand the care and costs these diseases require.

She has fallen twice in four months requiring surgeries and partial hip replacement. We have been there every step. She’s very independent and resents any advice (bossing her). After first fall rehab recommended AL, she went for one month. Moved back to her home had a helper coming in 2-3 hours a day. She “fired” me as we were moving her boxes in over medication management. In 19 days she fell and broke her hip. No one was there, but her helper had just left her home, so she was thankfully close. This fall was very serious and required a hip replacement. Rehab would not discharge back to her home alone and we couldn’t afford 24/7 care.
Now, in AL one month (second time) and is again ready to go home.
It is her right to suffer the consequences of her decisions, do I just let go? This is not how I wanted to spend her last years.
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I had my mom with dementia for 10 years. We loved on her as much as my husband and I could. Yet, when she got something in her mind that was dead wrong for her, such as not seeing a doctor, we had to let it ride. I tried and putting her in the car to see a doctor or dentist would be a screaming match and at her over 90 age, that could of caused her heart to stop too. Fighting with the doctors and dentist caused my heart to skip too. I finally just let her be. She lived till 98 and passed in July. I was so stressed that I had problems too, my hair started falling out and I had sleeping problems. Took months after her death and my wonderful husband being there every step of the way, to help me recover.
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anonymous828521 Nov 2018
So glad you're recovering, I hate what unnecessary sh#t we go through & how our own families suffer. Please enjoy your freedom with your dear husband. God bless.
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The aide service I hired said that sometimes the person will not accept the aid but that they have ways of dealing with it. Generally they put the aid in and after a while the person starts to warm to the idea. Prior to a dementia diagnosis, I did let the consequences of actions play out. She was buying QVC stuff and then returning it. Or rather expected me to go to the post office with multiple packages every week. I refused. I told her she can go. She tried lots of ways to get me to do it. She spent more energy trying to get me to do it than it would have taken to do it herself. Having to return them herself discouraged her from buying stuff that she was only going to return. Two problems solved at once. It's hard since the person is an adult who is responsible for themselves on the one hand. On the other hand, they have dementia and can't necessarily make good decisions.
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anonymous828521 Nov 2018
So true, their manipulative crap drives me nuts.
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Yes. Oh. yes---I have done this. My mother is so stubborn, controlling, defiant & argumentative that I've gotten to the point where I just can't argue with her all the time, about every single thing. My mother won't ever just agree with anything I say--she will fight it every step of the way, even if I am saying it for her own health & safety. My mother is 90 years old and has always been this way--stubborn, controlling, argumentative, defiant. If something is a threat to her health & safety, I simply won't let it go. But, other things that are not so important I don't get into a fight with her about because I refuse to let her destroy my own mental health---I'm not going to have a heart attack from stress that she is the sole cause of. So, if she does something because she doesn't want to listen to me, she has to suffer the consequences of it--and then I will not jump to deal with consequences she caused due to her own stubbornness & inability to let someone else take control of the situation.
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Eklrls Nov 2018
Yeah, I have this problem with my mom and she is 71. I am having to learn to pick my battles. What I have issues with is her not calling doctor to get obvious help she needs. Her favorite reply is what can the doctor do about it. I let it go, its stressful and I will be having to make a hard decision in the near future about her massive health and safety issues, for my own health and safety. I get that they want independence but not at such a high cost to a caregiver mental, emotional and healthy well-being.
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Yes, to some extent. My mom has always been extremely stubborn and digs her heals in at each life change. Unless it's a threat to safety or her account will be overdrawn, I'm picking my battles one at a time. I've been lucky that I've pushed and worked really hard for each change - gaining access to her accounts, filing 5 years of tax returns at once, obtaining senior help and moving my parents to a senior living apartment - but in the end it's worked out and my mom at least seems to be appreciative. We still yell nearly every time we talk, but I'm working to get her on a good path, and she knows I'm looking out for her best interests. Still a few hurdles to go, and that's not accounting for worsening dementia. Stick with it - you'll feel better about yourself in the long run if do your best to protect her, while looking out for yourself.
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I think the elderly find it hard to be dependent on aides and their kids.
Resistance is often their new norm. They cling to a little pride.

I would get the aide and see how it goes. Trial and error, until it fits.
We did that with my dad, who became difficult when he developed dementia.

Just be gentle. For us it worked best.
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This is such a complicated and painful situation to be in. When my brothers and I tried to have a conversation with our mother about her care before dementia settled in too badly, she closed her ears to it. Her behavior was deteriorating, yet her doctor would not give a diagnosis of incompetency so my brother could not get POA. We dealt with our local Area Agency on Aging for help and while they sympathized with our plight, they wouldn't make the call either. Our mom was no longer safe behind the wheel of a car, yet she continued to drive until we hid her keys from her. Finally when our mother stopped paying her bills, we made an appointment for her to see a psychologist. How my brother got her to go is to his credit. However, the psychologist spent quite a bit of time with Mom and ultimately diagnosed her with dementia, behavioral and delusional disorders, all of which we already knew but needed a professional diagnosis. My brother was then able to get POA. After checking many assisted living places with memory care, we decided on a facility our mom was actually quite familiar with. My brother took her there to visit, but she thought she was there for a job interview. Mom is 96 years old and has been retired for many years. Finally my brother packed her into his car and took her there to stay. He then went back to her house to pack up the things she would need. This broke our hearts to have to do it this way. We really wanted her to have a say in all this, but it just wasn't to be. There was absolutely no cooperation from her at all. She didn't want to stay, but going back home was no longer an option. We had hoped we could get her to agree to have in-home help come in daily so that she could stay in her home, but she refused help of any kind. I would arrange to have people from her church to come in regularly to check on her, and sometimes she wouldn't even open the door for them. Her house was in shambles and she wouldn't allow me to hire a cleaning lady for her. Fortunately friends and family understood what we were dealing with and supported our decision. This was all the more difficult because we live far from our mom and have to do a lot long distance. Mom is now in a safe place and receiving good care which is a relief to us. They have had to medicate her due to her angry outbursts and refusal to cooperate, but it seems things are under control now. I don't know what the best answer is for you, but I can encourage you to just do what you think is right and don't beat yourself up for it afterwards. These decisions are not easy to make. I wish you well.
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Riley2166 Nov 2018
It is always said there is a time and a season for everything. Based on my own life, I believe it is true. That means there comes a time when YOU have to get the courage to do whatever needs to be done and then WALK AWAY. The past is done, gone - don't look back. Move on and take care of YOURSELF. Forget everything else. It is the only wise choice you have - look after yourself and move on.
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Does any elder really want to lose their independence? No, is usually the response. This leaves the adult children in a quandary. My own late mother waited till the "virtual eleventh hour," which gave me no choice to move out of state to take care of her. That is a tough call for each adult child.
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rovana Nov 2018
Would you have considered that she would have to take the consequences of her stubborn decision and if she wanted help it would be on YOUR terms?  I can't imagine these days giving up your job/career. Too risky financially.
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