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I am recovering from years of caring for a sick husband and just as I was beginning to adjust to widowhood my elderly cantankerous mother needs care. She is stubborn and refuses professional help and I have never considered her a "loved one". More so now. I am sliding into burnout, what I call 'twhat next" syndrome where the least hint of a problem becomes a mountain over which I have to force myself to climb.

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actually allowing - if you can; it's not always that easy, and not even necessarily emotionally, just logistically, I don't know your situation - someone else to do the caregiving allowing you to be just the daughter can actually many times be the best thing
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I find it interesting that when the Bible talks about love there is more than one Greek word for it and the highest form of love, agape, is based on principle. It goes beyond feelings to seeking the greatest good for another even when relations are strained. Sometimes the greatest good for someone or a situation may not be us handling it personally. My experience has been if we allow guilt or feelings of obligation to take on responsibilities that we are not suited for we set ourselves and everyone else up for disappointment, even disaster. Even during the times when my mom didn't recognize me she fed off my energy; if I was stressed, she was stressed; if I was calm, she was calmer. I was able to stay a lot calmer when I finally accepted that if I couldn't control her before Alzheimer's I definitely couldn't change her after. If I was going to cope I had to be the one to change. But I also had to be honest with her and myself as to how much I could change, how much I could cope with, how much I could give up, and to acknowledge that the best care for her involved having other people who genuinely cared for her who I could call for help so I didn't turn into a stressed-out lunatic harpie. Love is acknowledging you both have limitations and finding the best solutions you can to work around those. Perfection never was an option. You have to decide what the greatest good is for your mom's circumstances. Please take advantage of any senior resources in your area to get a listening ear and helpful advice, and remember that you don't have to be providing all your mom's care personally to still be fufilling your role as a daughter. Alzheimer's is a banquet that serves dishes of craziness with heaping servings of guilt. Your efforts will never feel good enough, but one day they will be good enough. It's all she can ask from you. It's all you can ask from yourself. No one who has been through this would criticize your feelings. You have to show yourself love too or you will resent giving your mom the energy you should also be giving to yourself.
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This issue of If she says something mean, then by all means leave perhaps needs some addressing. Crazindahead is spot on you should step out of the room ... you just have to remind yourself from time to time WHY you're walking away. This is not you leaving because of her (him) ..... not at all ......the leaving doesn't reflect on your loved one ......it reflects on your capacity to deal with the comment at that time. You have to keep reminding yourself that it is the illness that makes these comments so so hurtful. When she (he) was well they either wouldnt have said it (because they would have known the outcome - how many times have you bitten your tongue when watching your kids raise their kids and thought I wouldnt have done that!) or you would have really bitten back or you would have walked away years ago and never come back. Now they are ill they dont have those prevention skills - their thought processes are jumbled and what is more, our socialisation kicks in. While it prevents us from screaming back at them because they are vulnerable , it doesn't stop us wanting to scream, so you have do something to avoid the frustration or you will internalise it and that is very very bad place to be..
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Good answers here!! Keep reminding yourself, Birdie, that you cannot do this and it's okay. Remind yourself that dementia is real tricky, but it's real. She is herself at times, but really she's not. She's not realistic and there's nothing you can do to change the process. The hardest part is to not take it personal. If she says something mean, then by all means leave. Step out of the room, go back if you are calm, otherwise go home. It's okay. I know this is a tough position, but you cannot help her if you are not well yourself.
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I gave up my life to care for my mother when my father passed in 2012. My personal regrets aside I would advise you to get as much info from your mothers primary physician and find out exactly what type of care your mother really needs. there are many agencies out there that can help. It will take trial and error till your mother accepts the real help she needs. My mother has dementia and type 2 diabetes she can not be alone (Physicians orders) I live with her but I have two private caregivers and I hired an agency. I went through 3 agencies and many caregivers before I found two my mother will accept. The new agency is working on a third. I work full time and have my own life to rebuild. My mother is the most ungrateful person I know and she has emotional and mental problems on top on this. I totally relate the the lack of love. I made a promise to my father before he passed but it doesn't mean I have to care for her 24/7. I do the minimum required. She will be cared for if I'm here or not because I found out what she really needs and hired for those needs. I also have an elder law attorney who helped up set up the VA benefits to help pay for these people. I am in my 3rd year doing this and i feel I know what needs to be done. Getting it done is like running a business. once it is in motion you just need to monitor it.
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Healing do you know if that was Obama or Cameron saying that we would have much more self worth and self respect....wouldnt it be just great if instead of all the hogwash politicians trip out especially at election time that for once they too thought felt and then spoke from their hearts........oh silly me politicians dont have hearts
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We love or hate with our hearts and think with our minds. Our challenge as humans is when those two are at odds, as in the case of thinking about and being responsible for the care of those we may not love. Guilt is an emotion, Anger is an emotion = heart. Actions are ususally created in the brain and then the twisting begins... we are hurt, angry and retaliate with action-- was it rational or emotional? so then we feel (heart) guilty and have to think through it (Brain) in order to respond in ways others will think are correct when others arent feeling what we feel. Removing ourselves from the immediate situation allows us to get away from the fresh and very powerful emotions in order to give ourselves a re-calibration and make rational choices that are so necessary and difficult.
So many on this thread are dealing with teribly large amounts of emotional pain and baggage and doing so alone. You are my hero's. I know you are not doing it for my appreciation or respect, nevertheless you have both. Please carers, take care of YOU first. Otherwise, what is left of you to help another? Its like putting on your own oxygen mask on a plane before you help your child. makes total rational sense, even if the heart might say otherwise.
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Yes she could want to but it isnt a care home - it is specifically a respite centre. The people in there are about the same as mum - I took her to several care homes and got the following responses:
It smells like poo doesnt it
I can smell wee
(Now she is anosmic so she couldnt smell either)
These people are all old (she was almost the oldest)
They just sit and sleep all afternoon - mmm Hello mum so do you sometimes
Im glad Im not like them (well actually.....)
Im not coming here...
Now if that changes I will be homeless but hey I am gonna come out and do a round US tour giving you all a break and when I have done I'll start again!!!
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Baba, my time is coming to an end. FIVE days and counting. In the past couple of months my mom has declined signigicantly. And there are some job possibilities out there for me, and they are good ones. Mom and her hubby are being moved Saturday, I am just plain tuckered out!
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I totally agree with Glad ' s answers. We don't give mom any notice of anything these days ( ie, we don't give her a chance to get worked up over things) . Of course the big difference is that she's in a nh and THEY are the ones getting her up and dressed the day of an appointment.

Jude, is your mom on any antidepressant medication? Has anyone given that any consideration?

I don't know how you guys can do it, having your mothers live with you. My grandma lived with us when I was growing up and it was awful. She wanted things her way, complained she was lonely all the time ( causing my mom to say, what am i, chopped liver?). My mother is both far better cared for and HAPPIER in the nh than she could possibly be with any one of her children.
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Yes, you can and shoupd use her money to pay.

No, you will not feel guilty during respite if you do your due diligence to make sure the care mom needs is arranged and carefully thought out.

No, Jude it is not abuse to your Mom for making her go, it is abuse to both of you if you do not take these breaks! How do you like them apples?!

When you take her do not tell her where you are going. No forwarning is necessary! And Jude, my question for you is:
What will you do on your return if Mom has enjoyed herself? What is she told you she wanted to stay? It could happen, so be prepared.
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OK Peeps quiz time

Scenario first and then question - when I go to my 'training' next week I am going to ask this question so I need answer.

You are caring one on one for a mother you love but who is demanding and difficult for most of the time. The doctors say you MUST have 6 weeks respite a year. Your mother flat refuses to pay saying 'what do you need that for and then adds to anyone who will listen ' I dont want to be a burden to my daughter but she wants to leave me in a home'. She has dementia and you are her full POA.

Can you pay for it on her behalf?

Answer YES or NO

Will you as the carer feel guilty for the entire duration of your respite?

Answer YES or NO

Finally given the above scenario and given that you decided that you could pay for respite from her finances.

Is forcing her into respite care abuse if in her more lucid moments she has said she will not go?

Answer YES or NO

If you answered NO to question 3 how would you set about physically dealing with that

Guessed why I need those answers? Oh yes battle 2 of respite about to begin
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Metrie thank you hun - I was starting to think earlier in the week I was being unreasonable. I have a very small plate compared to some on here trust me. These wonderful people live in a world where if you cannot pay you have to wait until someone comes along and says you qualify for Medicaid/Medicare etc. At least in the UK that is free at the point of access.
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Dear Jude, my heart goes out to you, and I find your point of view quite reasonable. We all have to live, and eat, and try and find peace, perhaps
a bit of joy. You sound like a kind person, and you have a lot on your plate.
It is so easy for me to say "take care of yourself," yet we all know that is hard
to do.
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I loved my mom buti understand your burn out from your husband and some times keeping care of mom or dad dear or not can be too stressful on you and her though I am sure she will not tell you this visit help a little when you can start getting stressed go home know your limits I say once a weeks good because you andher are llet's just say different that will keep you close enough to help her find help and know if she is getting weaker or holding her own I'm old and I'm tough but I still like to bond a little with my kids I like them to see what's under the hard shell and know the real me I shared some good times with my mom in her late years and the sad part was I don't rember her ever writing how she felt down or her life so only said things that I must remember well since the stress of care is too great for you please do her and you a kindness and don't just visit or take her out
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I am trying anew technique towards learning to love myself. Not easy I never have felt good about me...I know that my low self esteem is partly down to my Mum for whom nothing ever was good enough and dementia only exaggerates that. With that in mind I am trying to reevaluate my feelings toward my Mum with honesty and integrity and to adopt the alcoholics serenity prayer (just for the record I am tee total):
Give us the grace to accept with serenity
the things that cannot be changed, Courage
to change the things which should be changed,
And the wisdom to distinguish the one from the other.

My mother was young obviously but is now elderly and frail
Accept this as I cannot change it
She is and always has been cantankerous and this wont change now she has dementia
Accept this as I cannot change it
She now needs care
Accept this as I cannot change it
She is stubborn and refuses to pay for professional help
I am going to try to get the courage to address this with her
I love her
This hopefully will give me the serenity I need
I dont like her
Gain the courage and strength to cahnge my thinking in the future as I cannot change the past

The trouble is having the wisdom to know the difference isnt easy
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Gladimhere it was nasty so be gladyouwerenthere in this instance!
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what are her physical issues? Does she live alone? Is she safe. Does she have money or own a home not to ne nosey but these all go answers to questions you need. Depending on her physical/mental condition and finances there are sources available to you. Whether live in, PT, day care etc...orshe may need a SNF but again finances play into that, Let us know and we will be happy to try to help you!
Bless you!
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Geez! I had read about this thread on another. You are right Jude it doesn't make sense as many posts have been deleted and probably what was needed to make sense of it. Sorry I missed the entire thing.
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Had a long conversation last evening with a good friend who is,due to job and financial problems, living with a mom who was a totally inadequate and toxic mom. (The friend lived with me for several years, but I sold my house and am living with other relatives myself, and her only available choice was her mom.) She is learning that she can never expect her mom to be a decent mom, or for that matter, a decent person, and she has to give up the fantasy that someday mom will change. I cannot imagine any way my friend could become a caretaker if her mom were to need one. Unfortunately, damaged people do become parents, and their children have to deal with it. Often these parents do better with outsiders--my friend's mom had a friend she lived with and took care of through her last illness.
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Noticed Cargiving43's post -- YES! Agree! My Grandmother moved to a board & care and did MUCH better than with one live-in caregiver (a lifetime friend). She needed more care than she would admit, became depressed, desperately clingy & the isolation ended up driving both of them nuts.
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You kind of have two choices - walk away or get her to agree to terms that are acceptable to you (BTW, only one person has a vote in this matter - YOU).
The current model is unsustainable. Give yourself a raise or find your replacement. The past is over, and the money you spent on the house/bills is gone, never to return.
Chose a good time of the day for her, and inform her that you are broke, and therefore starting the first of the month you will be charging $ (fair rate -- maybe $500/week+ room & board). If this is unacceptable to her she is welcome to hire your replacement, and you BOTH start interviewing agencies and getting price lists (care isn't free! OVER $100/day?).
Either she finds a new care solution (you win!) or she pays you (sorta win --not what you are worth, & you won't regain what you've spent, but you'll earn enough that you won't be bankrupt).
The POA is revokable, so be prepared to apply for legal guardianship in the future (do NOT let any nice, helpful private agency do this and "take care of everything for you"--- as much as you may be "over it").
In light of potential court scrutiny, make sure anything you do with her & money is DOCUMENTED. Paying yourself as caregiver yes, but not extravagantly, and not more than an agency. Trying to get back what you've already spent? NO! Court is likely to take a dim view of that & consider it financial abuse of an elder (ironic, huh! No agency protects caregivers from abuse...)
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Praying is great and I am glad to see it is not on the bottom of your list. Yes, there are things you can do. With Dementia starting, this will only get worse. Sorry, but to be realistic, you have to face that this is not getting better!! So maybe its time for MOM to be in an assisted living situation. This situation is not necessarily good for you!! I applaud your taking her in, I am just not sure how your sanity will hold up. Please know you and your Mom are in my prayers that you will do what is right. And you will!! You are praying! God Bless You!
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My mother is 95 years old and has dementia (starting). She hardly ever says 'thank you' and thinks she' s Cleopatra, therefore, I am to take care of her hand & foot. She doesn't treat me like her daughter, I think she thinks I'm her caregiver.
She still has a real strong heart, it's cause she's never been on medication/s. She wakes up every hour during the night and doesn't remember in the morning. It's hard, but I guess I'm paying back. I thought I was the good kid, maybe I'm paying cause I'm her only unmarried child. I retired to take care of her, but I kind of regret it. Does anybody have ideas as to how I can feel better, besides Praying?
Anyway, it's nice to air out! Right?
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Just in case anyone thinks there is something odd with the posts we had a troll in here and the mods have removed as much of the abusive posts as they could hence it not necessarily making sense - Many thanks to the mods xxxx
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I totally identify with your situation! Some of the conversation is identical to my mother's. Two doctors had diagnosed her with dementia which she adamantly insisted never happened! After almost having a breakdown myself, her primary physician, at my request, referred her to a neurologist who recommended assisted living and prescribed medicine that calmed her. Do not assume that your mother's behavior is just being stubborn, as certain types of dementia seem to accentuate personality traits that mimick the symptoms of dementia. I guess my best advice is to seek medical help to the point of being obnoxious if you have to be to get a doctor to help you determine if it is stubbornness or dementia. Sometimes living at home with one's caregiver is not the best answer for either person. Most of all, stop feeling guilty! Ask for help! It does not mean you are a bad daughter or caregiver!!
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Birdie, the first step is to admit that you can't do the caring at this time. Tell you mom honestly what you are going through, just getting used to the idea you are a widow, and her situation at this time is too much, you will help her find a caretaker or a palce for MOm....NOthing against you, your mom, or anyone else. It's just the situation..at the time
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Interesting article Shelly - right folks off to get Mum onto the commode and then give her her 2 am meds in a while so sleep well all night night all I imagine I will wake up tomorrow well today well in 2 hours time to be precise but hey who's counting. Yay its Friday already where do the weeks go?
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