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I agree with Night Owl - I think they are afraid. Of getting old, sick, losing friends, losing their abilities. But to take it out on the very ones that are bending over backwards taking care of them is a hard pill to swallow. I'm pretty much my 91 year old mother's sole caregiver. I admit she's in great shape for 91 - still cooks, & drives to the grocery store. But I've suffered quite a bit this past year (we have lived together a total of 18 years off/on). She's been back with me for over a year and I thought maybe THIS time it would be different. She can see how hard I work - full-time/keep the house clean, the yard maintained/keep up with all the repairs on the home/car. BUT it's never enough. Since she has moved back in with me (because I cannot afford to put her in her own apartment) we have had 3 blowups, I suffered through shingles, and eczema, and depression this past year. I also have 2 brothers which have much more money than I do but not assist hardly at all! l She basically ruined Christmas for me. I finally let her have it and told her if I'm such a horrible daughter - why don't you just leave and leave me alone. I also told her she didn't care about me - only what I could do for her. Well ever since then she has been "nicer". I've come to realize she has a major personality disorder - narcissism. Never thinking I deserve anything - or anyone. I'm single. Never thinking I can go and do anything or travel. Not sure how much more I can take but hopefully this year after having a come to Jesus with the brothers we can get her settled in a ALF. She has lost friends over the years and I'm sure it's a lonely existence but she has a friend who is always happy and a pleasure to be around. My mom could live in a palace and not be satisfied. I frankly don't care that much anymore. I'll do what I can but plan to start getting out and doing things that feed my soul. Yes she will pout - but that's her problem. I don't have any kids either so I don't have anyone to take care of me but me - so I plan to work until I'm 67, take training classes, learn, engage. I refuse to give up and be her caretaker and not have a life. Good luck to all of the caretakers out there - I hope you are blessed.
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It is all primordial. "I supported you and now it is your turn" ; embedded in one's soul ; that is at work and of course, fully human. Try meditation, relaxation exercises and by all means get gentle assistance and do not complain. You are better off with a good conscience and the ability to honor your Mother, any way you can, for a long life and goodness upon the Earth!
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So, aaudrey, have you had to take care of your parents? Your profile says you take care of your husband,

Phinsmom, you have an entirely unacceptable situation! Why can't your stepfather take care of your mother. Really, he's HER responsibility! BTW, my mother also has a long term care policy that she has no intention of ever using. She will get the premiums returned (to her heirs), and I think that is the main reason (besides not wanting to admit that she needs help). So is there going to be a good inheritance from your mother, or is that all going to go to your stepfather? If it goes to your stepfather, then, really, HE is the one who is benefitting from your self-sacrifice in giving up your job to take care of your mother. What about your future financial security????

I wish the parents who expect only one child to bear the brunt of caregiving would make all of their children share equally in the burden (which is what it is -- a burden). My mother has told me that my time is not as valuable as my brothers'....starts shaking/crying/shaming/blaming when I put my food down about something, and has told me more than once that I'm "not right in the head." And I just feel sick when she gets like that. I distance myself.

She is at the point (will be 92 in August, bad hearing, sight in one eye, very bad balance, neuropathy of the feet) where she really needs some assistance with shower monitoring and getting dressed. She has told me that she can't feel her feet when she steps over the tub to get out.

She's been going to "look into" some home help for a while now. She won't even hire someone to clean her condo.

I refuse to be her personal care attendant. I had to do it for over a week when she was nearly helpless, and I won't do it again because of the way I was treated. And I won't clean her condo (truth is, it isn't cluttered and is mostly clean, although she shouldn't be cleaning bathrooms and vacuuming).

Since she will only hire agency help (because of liability, plus her LTC policy requires she use agency help), and agencies require 3-4 hour minimums, I doubt any agency will ever be hired. But that's her choice. After being told my time isn't worth much, I'm not going to help her (unless I get paid $20/hour, and of course she would never accept that).
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Seamist, I don't have children. MY goodness I would never have thought of bringing children into the world just so they could care for me later. That sounds very selfish!
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Another reason parents would want their children to be the ones to take care of them is because... well, that is one of the reasons people traditionally have had children. To take care of them in their old age.
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One reason people would want children to take care of them is because they don't want strangers in their home, especially when they are feeling vulnerable.
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I am an only child. My parents moved me across the country at age 3 and walked away from all family. Then they chose to live an isolated life with no friends, social clubs, church, etc. Guess what...they have both become very weak and dependent and they are not even 80 yet. Dad was moved into an ALF a year ago but mom refuses to help manage his care and now refuses to go see him. She sits at her home getting weaker and weaker (she's only 76).

Now, in addition to working 50-60 hours a week, I get to run around managing the care of two miserable people living in two different locations here in town. I know that one or both will live for at least another decade, so I will be significantly tied down for the rest of my "middle age" years. My parents hated "old people" and told me their wish was to never become a burden on me. It's so frustrating because much of their condition has been self-inflicted and I begged for years for them to change their ways. Now it's too late and the burden falls on me :( Heck yeah I am a little resentful.
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My sister took care of our Mom and if she was unable, I would have moved across the country to do it. We are Italians and we take care of our old people. My Mom did it for her parents and they lived with us and died in our home. We did it because of the many sacrifices they did for us while we were growing up. I realize that you are the "younger generation" but it's sad that times have changed so much that you can pass off their care to others. But as they say, "what goes around, comes around" and as you get old, your children will treat you as you show them how to treat your parents.
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Wow, aaudrey! You are comparing apples to oranges. Adults choose to have children, give birth, adopt, whatever with the hopes of raising an independent being. Children caring for parents that are on a downward turn is completely different. Adults don't get physically injured and ill from caring for their children. Children caring for aging parents seem required to give up their lives and many become sick in the process. I know of an 80 & 85 year old who are completely responsible for an 102 year old because she is stubborn. Where in the world is that OK? Caring for your parents means a lot of different things to different people. Hopefully it means putting your health (mental and physical) first, making sure your parent is provided for & having the ability to have a relationship with them because their every move doesn't have to be orchestrated or supported by you. Guilting people into caregiving is wrong.
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Oh isn't that a shame. I only wish that i had children to ask. I have NO ONE, not even a friend. So count your blessing.
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Not all parents give up all for their kids or dedicate their lives to them, lol. Both my parents "lucked out" in that neither had to raise a finger to assist their parents when they aged. And I frankly don't believe "it's all worth it." You do things because you know it's your duty and down the road, you'll be able to sleep better. I do ask myself why my brother and sister have basically gotten off scott free when it comes to caring for my mom - neither ever visit mom at her NH - and that all has fallen on me. I had no problem standing up to mom when I could not take caring for her by myself anymore, since she could well afford to pay for her care. I love my mom but never promised there'd be no nursing home. I thank God my dad went first; he'd have been a monster to care for; he had cancer and apparently didn't tell a soul, including my helpless mother. As ugly as Alzheimer's is, I'm grateful mom got to the point where she was very much out of it and I could make decisions without her or the sibs' approval for her sake and mine.
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phinsmom, it sounds like you need a change asap.  You can’t not have a job, and she’s surely not thinking correctly when she won’t even use the resource she planned for.  All of them don’t like the idea of a ‘stranger’ coming, no one does, because we don’t know them yet!  We have to bite the bullet and get the stranger to come, then we get to know them.  This is not a life for you, you’re right to think something’s gotta give.
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darianne, congratulations!! Just because you moved her here doesn’t mean you signed up for all the duties! Hope you had a great dip in the pool. :) I’ve learned some good things on this thread. These are our parents and we don’t want to ‘get in trouble’ - have them mad at us. You have to let that go if you’re going to do it right.

alan, it’s not easy and they will be mad sometimes. Be sure to read all the responses before yours, there’s insight there! For many of us, getting a counselor helps greatly too. You’re up against a lot, you’ve got support here. There are so many great past threads, too, Search for narcissist. Good luck.
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First of all, I want to tell Keepingup that I have done the same thing "sneaking out" without telling anyone so I can get some essential down time. You are not alone. I too have extreme guilt doing this, but otherwise I would probably get in the car and keep on driving. Which also leads me to a question:

Does anyone deal with an enabling family member(in my case my step-father) who caters to every whim of my mother's and cancels all help I schedule in order to appease her anxiety? It's like I'm fighting two battles. I am 41, an only child, single mom, and have been living and caring for her for six years. She is financially able to hire help and has long term care insurance which she will not use. I quit my job a year ago because she required 24 hour care. I have no career, no social life(or chance at one) and now my father(4 hours away) is declining and needs help. He has alienated everyone and is destitute, so I am the only one to care for him. I am living my worst nightmare, trapped caring for my parents and having lost my own life in the process. Sorry if this post is all over the place. I think I needed to vent.
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why do children expect parents to do all the caregiving? Yes they should get help outside of their children... but many 'kids' dont feel they need to help. Do you have any idea of what parents sacrifice for their kids when they were growing up? Parenting is a full time job.. we give up traveling... we give up the freedom to go and come as we please... we give up quality time with the spouse... it is all worth it. Now stop your whining and help your parents... you dont have to dedicate your lives to them (although they did that for you)... get help for them but dont just say you are too busy
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This is so true. I begged my brother and mother to allow me to get help in for her. They both refused. They both thought I should just do whatever needed doing and they didn't want her money "being taken." Well after a lot of crisis and 9 months in a nursing home, I got her into an assisted living that takes Medicaid for the home health care portion. She still has to pay rent. I have also had her join a pooled trust so that she can use all of her income. Of course she complains that the rent is too high, even though she can't remember what it is and does nothing with the money she has left over every month. Sigh.

Just the other day she asked me why I wouldn't "let" her move to an apartment by herself. I said go for it. She then went into all the things she wouldn't be able to do for herself. Of course she didn't even mention that she wouldn't even know how to look for and rent said apartment. So for the day at least, she realized she is in a pretty good place.

As far as the burden thing goes, she and my in-laws have said, oh when I get to this point, just shoot me. I can't imagine a bigger guilt trip. "I don't want to ever have to go to AL or have help in. If I do, just shoot me." I can literally hear the judge laughing if I said I was only following their wishes.
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Kimber166- Not that easy to just tell them they are putting too much pressure on you. I could reason with my mom until the cows come home and she does not understand what is a very simple concept. I've told her how, through not so many words, she has essentially blamed me and my wife for her cancer. I've made suggestions that would improve her life greatly but she is stubborn and makes choices that cause more stress and work for her. I'm the one family member that helps and she continues to get mad at me that I'm such a horrible person that I can't be there more than once a week.
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Not all parents are like that - I can't have the only Father that wanted to maintain his independence to the best of his abilities.

Yes, I got the calls for "the tv/remote isn't working" and "I can't find ....." - but he was the most appreciative of anything I did for him. Never complained, always thanked me.

Sometimes he just wanted some company and I could understand that. I had lived alone for 10 years and I know what lonely is.

We're all wired differently and not everyone is capable of being a caregiver. I am thankful that I seem to be wired-well for caregiving. It can be very rewarding under the right circumstances.
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The most difficult thing I've ever done was to "abandon" my 82 year old mother to force her to accept help. I have MS and have been her sole caregiver for years. I can no longer physically do everything and the house,etc,started to fall apart. Fearfully I started staying with my sister for "safe" periods of time so maybe! She's see what it's like to not have help. I was very guilty. But by golly she did accept a home health care side (we went thru three) that she likes once a week for 4 hours. I hope it lasts .
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They expect children to care, partly because of aging process. They become frustrated, insecure, and develop anxiety about financial situations and there is no adequate help from the states.... usually the daughter, the one who is innocent and honest gets all the responsibility of looking after elderly parents, and dumped to deal with the stress...
Though it is a pleasure helping parents ( if the government gives us paid leave,like paid maternity leave ha) !! It is not enjoyable to get blames and curses due to their paranoid ideas ,hallucinations and dementia....Care givers in the family need lot of support financially and emotionally....
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My mom has been diagnosed as having less than 6 months (end stage renal disease). Just had her designated palliative (she doesn't know - I know it will send her depression spiraling downwards), so my plan at this point is to stick it out until it's time for hospice care.

I did start this willingly. I admit. I made a deal with my mom that if she moved up here, I would not be the one to put her in a home if I could help it. She gave up the city she was born in and the few friends she had to move here. The reason I made the deal is because I knew darn well I could not be there for her at the end of her life, if she remained where she was, without losing everything I had. I didn't have the means to travel to visit her at home or in a care home, and I certainly didn't have the means to put my life here on hold when she was in palliative care or hospice...not being able to go back and forth meant I would have had to give up the (rental) home I love, all the work I've put in to be a performing musician here, and my support network of friends.

I wouldn't even mind doing this if she would not be so frickin' stubborn about home support services! But if I'm not here when they come, she doesn't even answer the door! If I say they're coming over at X time, she'll snap, "What for?" No clue, no acknowledgement of everything I do. She'll just say she doesn't need help. She'll say, "Leave me alone!" And then she'll fall on the floor and remain there till I show up. Or she'll poop her Depends and not change and get poo everywhere (for me to clean up). She'll mess up the apartment (for me to clean). Or she'll not eat or just eat junk (making herself sicker and more dependent). Or she'll not bathe or change for days, sometimes weeks. She certainly won't take her meds properly.

After 8 months of actually staying at her place with her, I was definitely at the brink of putting her in a care facility, until the doctor told me the diagnosis at the end of February. And again, I really wouldn't mind being here for this if she weren't so nasty to me about home support.

Two weeks ago, I finally told her we're doing things my way now, or she's going in a nursing home. That those were her options, and that I'd gathered enough video evidence of her dementia and inability to care for herself on my phone to make my case to the doctors. (Not true, but she doesn't know that.) Having no choice but to accept this deal has made her nastier than ever, but also more compliant. I'm learning to live with the nastiness. When she grumbles about home support, I just ignore her like she was a child who doesn't want a babysitter.

The funny thing is, my mom really has no clue what it's like to caregive for an elder. I've been down this road, first helping my stepmother look after my father (dementia). Then holding my stepmother's hand through her hospice experience (though - she was truly someone who took charge of her own end of life and actually DID refuse to be a "burden" to anyone). But my mom's mom died when she was 54, of skin cancer. Her father lived with his younger girlfriend until he died at 92 - and he died because of a car accident. He certainly never had even a hint of dementia. Mom didn't have to do much of anything except help out managing grandad's garden when it became hard for him (which wasn't much of a burden on my mom, since she loves to garden).

Anyway, I do have more home support in place now, as of March 1. It's a HUGE relief. I can't even believe the difference it makes to me. She still doesn't see it, still doesn't get it, still doesn't like it. But yeah, I'm done letting someone who's basically a tantrum-throwing 4-year old, mentally, make decisions about her own care and home life.

My first full respite block starts in an hour. I'm going swimming, y'all! Then they'll come again at dinner time to feed and medicate her, and then again at bedtime to clean and change her. She doesn't turn her nasty side on them, so things get done and my anger at her is subsiding. It's a huge weight off my shoulders.
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"Give willingly, stop giving unwillingly"--what a great statement!

I too was slowly drawn into caring for first, my FIL, and after he passed, my own father. Now I am involved in caring for mother. I don't know how this all happened w/o my really being "aware" of it. Kindness? Compassion? Guilt?

FIL had been doing pretty well, with some help from SIL who lived near him. She had a wedding to plan and I offered to step in. Whoa. It was just a sad situation that he became so much worse over the 6-8 months I stepped in. He had leukemia and had fought it bravely and well for 15 years. But, after I began caregiving (in his home) I realized just how much my overworked SIL had been neglecting--in fairness, we both had kids still at home, so no judgment there.

I didn't resent him, I was jus too busy trying to keep it all together, and luckily, I had a great relationship with him. He passed and within weeks, my own daddy began to fail (Parkinson's) so I stepped in to relieve mother. 8 months of that, and helping DH to execute his dad's estate.

THEN hubby is dxed with Primary Liver Cancer die to HepC. A long rollercoaster of a year of waiting for a transplant and then the recovery---then 84 weeks of chemo. Yup, 84 weeks. And I got 2 part time jobs to cover the bills. 9 grandbabies born during these years and yep, Nonny wants to be THERE--but that was joyous.

Crash and burn--over and over and I just kept going.

Now mother is not doing great. She's 88 and failing and wants to die. I do what I can for her, but it's really not enough. She WILL NOT allow outsiders in her place, so is it up to me and the brother whose home she lives in.

I am tired. I try to only "give willingly" but I know that mother isn't lasting a lot longer, 3 of my sibs are MIA and the onus of the minutia of her life fall to me.

I will try to say no when I can, and call a sib occasionally. It is what it is.

I didn't see this kind of generational caregiving with my mother and her MIL or mother. They were 100% independent to a month before they died. I'm still just trying to make this all work.

Saying "no" when you simply cannot go on is the best advice. Also, get a good therapist. She has helped me with boundaries and "saying no".
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i think this question resonates because we all start with good will and a little help for our parents but gradually "scope creep" happens and we find that we are exhausted, resentful and overwhelmed with helping our parents while holding down full time jobs, families, and houses of our own. How do we change it?

WE are the ones to change it - our parents won't. They are happy - free help and get to see their kids. How do they know we are stressed out without telling them? We need to. We need to give notice - "mom, as of Dec 1 I will no longer be able to clean your house for you or bring your groceries in. I will still take you to some doctor appointments" and have some resources ready for house cleaning or grocery delivery. If they do not accept the options - then they need to figure out alternatives. A parent that loves you will accept that you are stressed out and want to relieve you of the burden.

My SIL has for three years gone to my FIL/MIL house every week to clean, take out garbage/recycling and do the laundry because my MIL has bad arthritis and bad knees. She also brings in groceries every week. Yet, my MIL/FIL go to the gym three times a week for Tai Chi and go for walks. If they can go to Tai Chi - they can walk around with a feather duster. If they can go for walks - they can walk behind a vacuum cleaner or a swiffer. Or rather my MIL because my FIL will do absolutely nothing in the house - women's work.

My SIL vented to me that she was exhausted and really wanted to take the opportunity to teach YOGA on Saturdays. I suggested she hand in her notice - inform the INLAWs that as of XX date she would no longer be doing their cleaning etc for them. Offer some suggestions as to house cleaning service or on line ordering.

You would have thought she suggested putting them on an ice floe and shoving - they had a cow. She "gave notice" and my INLAWs flipped out. But she and I had role played. After she kept saying "I have a work commitment and will no longer be able to do this" over and over they started to understand she was serious. Then they tried to guilt her "but who will - MIL has arthritis" and she suggested some reputable cleaning services - but they refused - cost and having strangers in. She didn't comment any more - not her problem. They tried to negotiate other days than Saturdays - she said "I simply cannot do that" they accused her of being uncaring - she said "I care. I did this willingly for you for three years. I am letting you know ahead of time that I no longer can so you can find alternatives" and stuck to her guns. Calm. Don't talk to much so they can't argue with you about it. and remember - this is not her problem to solve.

I think we have a hard time saying "no" to parents and since they are happy with the free services - they are not going to voluntarily make changes. It is up to us if we are so unhappy about it. Do what we are willing to do with love - say no to the rest. Yes - they will be angry. But do we continue this path where we are angry and exhausted and resentful? Choose who will be angry. I'm no longer willing to always be the one to do and do and be resentful because I'm too weak to say "no".

This is not only parents - but pushy friends who get us to do stuff we don't want to do. The leader of the moms group at church. The sister who loads us up with all sorts of hosting responsibilities for holidays. etc etc etc - Once we learn to say "no" to what we no longer will do, we gain our lives back. Yes the other will be unhappy - we can't control that. Unfortunately, a lot of us will continue on this path because we are too intimidated to make someone else unhappy. Time to stop caring more about others than yourself. Give willingly, stop giving unwillingly.
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Hi, my dear in am in this situation since 2004 with no help from my family. My family woke up whem mom passed
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I don’t have an answer but this is a timely question. After years on a waiting list we finally have an aid coming in just for two hours twice a week. Just enough to help Mom with personal care, make sure she eats something, a little companionship. But OMG Mom carried on this morning like I was selling her into slavery. The thing is, the only time I have to help her is the weekend, but, as an example, when the subject of her shower came up Sunday she said, “After I get a few hours of sleep, I didn’t sleep at all last night.” And promptly spent THE ENTIRE DAY sleeping except when she went to the bathroom and she timed that for when I was out of the room so I wouldn’t bring up her shower again. And it isn’t the first time.

In her head, I’m supposed to give up my job and take care of her. Once she even said, “You don’t have to work, I get Social Security.” Never mind the ethics and morals of that, it would destroy my own chances for financial security in my old age.

I’m not only fed up with her expectations, I’ve run out of patience with her attempts to manipulate me. And that’s what her “martyr” attitude amounts to.
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Dozens of reasons that parents (and grandparents) just expect their kids to become an RN, housekeeper, cook, laundress, accountant, personal assistant, car mechanic and AUDIENCE, without pay.

In my father’s case it’s because he’s a narcissist, always has been. He forced my mother to wait on him hand and foot through manipulation, verbal abuse, stubbornness, ‘the silent treatment’ and occasional diamonds, cars and other goodies. My poor mom and her knee and hip joints gave out but she always had friends and her own business she ran lucratively. So I’d say she was happy, but I sure as hell wouldn’t be!

My mother is not demanding and I knew she’d feel like she was on a cruise at the ALF that she chose for herself. She had gotten very confused and frantic about running the house (she couldn’t keep up poor mom). We got to a bad point where she stayed locked in her bedroom and accused my dad of drugging her.

We got her mental assessment done and she was put on a very beneficial drug that’s helped her a lot. She loves her ALF. She has girlfriends!

A theory of mine is that my parents grew up in the Depression and back then people kept their old folks at home, they all pitched in and found tasks for the older person to help out. So these memories are in their heads and they also get that ‘I don’t want to be a burden’ nonsense from then.

Everyone, remember back to your childhood. Did your grands come live at your house when they ‘got down’? Mine sure didn’t. The minority of older people lived with their kids. Most life spans reached 80 if the person did well.

But never forget the narcissist, don’t most families have one? Or is it just my family. Dad, his sister, my grandma (paternal), dad’s brother, my Mom’s little brother, etc.

I’ve thought about it a lot.
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Hahaha! I was thinking on this yesterday. My Daddy's whole family lived in Europe. My Mother's parents passed early. They were never caregivers. My Dad died 6 years ago. My Mama still lives in her own house with dementia. I got a yard crew last year after 6 years. A fantastic housekeeper to come twice a week starting next month. I said these people are for ME Mama! Because your baby is dead dog tired! I love having you all here in this site. We are all in this together and not alone! P.S. I got the "Burden" statement again yesterday too lol! Wouldn't it be fabulous to have an automatic remote control "fixer" at her house?!?!
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I hear you, Dorianne! Mom's always said, "I'll never go to a nursing home. I'm staying in my house." So Sisters have bent over backwards for more than seven years staying with her to keep her in her home. They've stressed themselves and me to the breaking point. I've been a year now, away from my home in another state. Mom is on her last legs but she's been wobbly on them for years.

I've tried talking to Sisters that this is no longer sustainable. Mom can afford it, but there's no money for real paid help. Had them all talked into selling the Mom's house, moving Mom into Sister 1's house. Yep. A couple days later after I invested time and energy I can't afford Sisters did a 180 and now S1's moving in with Mom when I leave. Augh! Fine. I told them they'll be the one in the trenches, so I'll support them. (Though I kept to myself, "You can martyr yourself.")

Fine, I'm outta here hopefully in a month, but Mom has deteriorated to the point I'm not sure when I'm leaving. She's showing clearer signs of her preparing to die. (Stuff to "get off her chest" and wanting to "talk to someone I don't know".) It's insane--or maybe I am now.

Before Mom forgot about her grandson, she'd call him often, not to see how he was doing but to tell him she had stuff around the house he needed to do. Poor guy. He had his own horrible stresses going on. He never came over just to see her because she'd always tell him something needed to work. I can't blame him.

Mom said your very words a couple days ago: "I don't want to be a burden." Well, what are we supposed to say to that!? I've told her a couple times in the past that all of us kids put out enormous energy keeping her in her home.
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They are afraid. Afraid to find themselves in that part of life where they require help. Its a scary season of life to enter and they are trying to "put on the brakes". Having a close family member do the work is more comforting and natural. They feel more in control this way too. It often is also the money. Our older parents have a very different concept of what things and services should cost. Good luck, I hope you find help.
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My parents finally have someone to take care of the yard and a housekeeper who comes in every other week.... My brother helps with correspondence and bills. But they need help with medications, meals, laundry, errands, the cable tv when it quits working or the remote when they get stuck on the wrong connection. I moved back  with them because mom refuses to move but I can't be there 24/7. I'm single and need to work..I avoid picking up extra hours because that pulls me away from being home in case they need help. I'm trying to talk to my dad about having someone come in for a couple hours on the days that I work. No luck so far. Good luck to you!
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