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Even before the dementia took hold, I was never "allowed" to see a movie without her or go on vacation with just my kids without her. Sure, she realized the importance of me spending time alone with my kids, but didn't understand why SHE couldn't be there too? She would tell me that she would never do that to her mother (her own mother died when my mom was only 15 months old. Clearly that made a huge impact on her parenting style with me).

She is now living with me. I spend FIFTY FOUR HOURS with her a week. When she is out with the caregiver, she constantly asks "where's Karen?" and the caregiver has found that a simple "she's out with friends" or the like, won't work. She has to say something my mother would approve of, such as "she's at the gym" (I"m overweight and mom has been trying to get me to lose weight forever!). I guess the thought is that if it's fun, mom should be there with me. I shouldn't be enjoying any time away from her. I should be including her. Well, guess what? I don't want to include her! 54 hours a week is MORE than plenty enough hours for me to spend with her!!

So here's the issue. I just can't do this anymore. I thought a good alternative to assisted living would be to hire caregivers to do as many hours as it would cost to do the assisted living. This would give me lots of free time.

I don't want to abandon my mother, but I thought that say, ten, twelve hours a week would be great on my end. When I discussed this with the caregiver (who found a new job and will be quitting us anyway), she said that might be good for me, but she doesn't think it will be good for my mom to spend less time with me.

I was just about handling the guilt, but now it's back again. Sadly, she's right though. If you were to ask mom, she would say that she doesn't see me enough even at 54 hours a week!

I'm just so burned out. Other than the paid caregiver, there's only me. No family other than us.

It doesn't surprise me that mom only wants me. I'm all she has ever wanted since my dad passed away in 2005. Her entire existence revolved around only him. Now it revolves around only me. Maybe he liked it but I HATE IT. I feel emotionally strangled to death. I feel her eyes bore into me when I come downstairs as if to say "oh thank God you're here, now I can breathe again."

I Love my mom. If I didn't I would just stick her in AL and never go see her again!
I want to do what's best, but is me seeing her less really best. It's best for ME, but it's not best for her. So, who matters more? Me or her?

I fear if I see her less it might accelerate the dementia as she will be more frantic not being with me as much.

Please help, I just feel so overwhelmed and burdened and guilty and resentful and unloving and wishing one of us would just die to get this over and done with.

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My Mom is 92 and I have lived what you're living. My dad died when I was just 19 and I have always taken up the slack for my Mom. I have taken care of her business, house, etc. for many years. She has tried so hard to break up my marriage and has never had much of anything good to say about me or my husband. I have even been accused of being her "enabler." About a year ago, she moved in with my husband and I because she was not eating, progressing dementia, etc. We used to get out and take walks and ride bikes and I would leave her at home with my husband while he worked in the garage and I worked my job. she would always get angry when i left the house. She was sooo clingy. I was all she wanted. In Dec. she had a "brain bleed" was hospitalized and could no longer walk. I placed her in assisted lving where she only lasted 3 weeks, because she was yelling for me, paranoid, confused and agitated. Well, I brought her back to my home, not knowing if i could handle all this or not. I did hire a wonderful caregiver and I use all of her income to pay that caregiver so I can continue to work, go out to dinner with my husband or visit with my kids. I don't think my Mom will be around much longer, but you on the other hand may have a long way to go with this. Pay that caregiver and get out and continue to live your life. You can do this! Don't feel guilty, you are a great daughter. Surround yourself with people who can help - any local agencies for the elderly, etc. Do things for yourself and your kids. You are not her entertainer. Find an adult day care provider and insist that she go! And use all of her income for your time away from her and it is money well spent! Nobody trained us to be caregivers, but we have taken on that role. remember god gives us the strength to do what we feel we need to do . God Bless The Caregivers!
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Karen the first word that comes to my mind is "suffocating". What do you think you mother will do if you spend less time with her? Walk away? Have a temper tantrum? Be mad at you? What I'm getting at is you are in charge of your own life. Your mom is just part of it. You choose how much time you spend with her not vice versa. It's called setting boundaries. Make sure mom is in good hands, leave and spend time doing what you want to do and then return, hopefully rested and happy. None of this means you love her less. She has been allowed to "cling" all these years so you can't blame her. You aren't happy with the way things are and you need to change it for your sanity and happiness. My suggestion would be to plan a super fun outing and get out there and enjoy yourself...ASAP!
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I certainly do agree that one size does not fit all. My situation was one of desperation and misery and with no family members at all to help fell squarely on my shoulders. I visit my mother often at AL and advocate strongly for her, do all of her laundry, bring her ice cream, take her to my house and out to dinner and love her.

The only difference is that I am also able to find time to clean my house, go out with a friend unencumbered by thoughts of my mother continuously playing over and over again in my head, start my own business, laugh once in a while and ..breathe. I was not able to do any of those things before. I made the decision that I DESERVE to smile.

When I get old, OF COURSE I want my children to be there for me, to love me, to fight for my needs, to kiss me. But to what extent? If my wants (e.g. be with me ALL the time and never leave me. Never. Ever) are so overwhelming for them that they want to kill themselves JUST to get out of the torment, then that is NOT what I would want for them. IF my mother was in her right mind, it's not what she would want for me either. The problem is that at an old age, some people can become self centered and do not think about how their actions affect others. And dementia exacerbates that. I expect to be the same way if I live that long. I also expect my children to spend SOME of their time with me, but to have a life also, otherwise what's the point in living?

To those who held their mother's hand 24/7 until they died, good for you. Truly. I really mean that. If my mother didn't have all of the disabilities she does, if I had a family to help out, if..if...if.. then I would have loved to have been in that situation also. Hugs to all of you wonderful, kind, loving daughters and sons.

I think that some people wrongly think that AL is prison. It's not. She just lives somewhere else. Big deal. If I want to spend 24 hours a day with her I can. I can take her out whenever I want to. The only difference is that I now have time for me, and I deserve that. The stress was killing me. Now I feel I have a life.
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You're doing this to yourself. When someone has you by the short hairs, you're the one letting it work. She's DEMENTED, right? She's obsessed with getting your attention, but suppose what she was obsessed with was, say, sticking matches up her nose? You'd just get all the matches out of the house and keep moving. I'm giving you a slightly crazy example on purpose. So look hard at the "guilt" business and where it's got you hooked. You're a grown woman but we have the opportunity to keep growing all our lives, and this is a growth frontier for you.
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My mother passed away three weeks ago. she was kicked out of assisted living after three weeks because a brain bleed caused some very disruptive behaviors, calling out, repeating names, and so on and so on. I ended up bringing her back home, because I felt like she would not be able to cope in AL.
It is different for each patient and caregiver. As difficult as it was to keep her at home with me, I treasure the precious moments that we could connect. I feel like the gift of the end of life love is one of the most important accomplishments in my life. Caregiving is not easy and we must take care of ourselves first. i could no have done it without hired help in the home and hospice guidance. I pray for the caregivers on this journey with their loved ones. In the end, we need to feel that we honored our loved ones with the decisions we have made. One shoe does not fit all. God Bless!
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Oh I hear you.Mine lives with me,and I am the only one in charge of her care.My sis works full time and does take her 2 hours a week,but I am feeling the same.I can't even go to the bathroom in peace.If i didn't have a lock on my bedroom door,I would be insane...please do what you need to for your sanity!!!
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I think that if she was in an ALF, she would have other stuff to distract her from only thinking about you. At your home, with the limited number of people to interact, she can't be focused on anything else but you. If she truly does have dementia, she probably doesn't remember that she is with you during the 54 hour week. When I call and talk to my mom, I ask her who has come to visit lately? The answer is always, no one, she hasn't seen anyone for months. I know, my aunt (her best friend, since childhood), my uncle (her younger, and only brother) and my sister have all seen her within the week. You have already sacrificed, quite a bit for your mom. I think you should work on letting go of the guilt. Some people on this site, condemn anti anxiety meds. My mom was a monster, before abilify. She is no sweet, wall flower zombie now, but she is somewhat content. Which I consider a huge positive, considering how negative she had become. Just because she goes to live in an ALF, doesn't mean, you'll never see her. It means that it will be more in your control. I'm sure if you had more "me time", the time you would spend with your mom, would probably a higher quality experience. That would probably be better for your kids too.
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I am floored to be reading about myself! My mom is 83 and I have taken up the slack with her for my father dying at 54 years old - she was 53. Competition between my husband which I married 10 years ago late in life and her have reached large proportions in regard to her 'using' me and him 'protecting me from her'. He has been ill a year and taking heavy duty medications and I have developed a heart thing where it speeds - I think the stress is trying to take us down. I feel responsible for making my Mom a spoiled child cause I have always given her everything and done everything for her even without asking cause our family doesn't really talk at ALL and I'm a doormat. You don't do anyone a favor feeling sorry for them cause I'm seeing the result now. Anyway - I've seen her for real and now am not sure if she's developing into someone stubborn and obstinate or has always been. This new awareness is saddening. I've had her checked and she is on the borderline dementia phase. She gone 'off' a few times but has always bounced back. At times, with the dissention in the household, I am so relieved she might not remember. I try and keep things as positive as I can. If the doctor didn't increase her meds for depression, I thought I couldn't stand it. Thank You for everyone who shared. It has given me great insight and resolve to move forward stronger and more aware. It's just me and always has been even with 2 sisters. My older sister just dumped her and said she couldn't 'do it anymore'. That was just visiting her and shopping. I'm glad God gave me this time with her of course however I'm finding that everything I know intellectually about eldercare can be put on the head of a pin. We have been talking about taking some courses through a senior center here in town and I think we will make that appointment for sure. Thank you again all of your sharing and God bless and carry you through.
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I don't dispute that your Mom feels confused but you feel destroyed. Since you can fix only ONE of these problems, save yourself. She will be mad but most of the emotional blackmail I see on here stems from caregivers feeling guilty if their mother or father or in-law is mad or makes them feel guilty. They are going to do this even if they get their own way since whatever you do will NEVER BE ENOUGH. So, save yourself. If you burn out or get sick, they will have no one.
Let the sulking begin. Don't bother to try to make them happy. That's never gonna happen!
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karenp - good for you - you are taking care of yourself and doing what is right for you and proving care for your mother. I totally agree that a facility is not the worst choice or is it prison or a "warehouse" as someone suggested. It is a viable alternative. It doesn't have to be one way or another is the only right way. To reverseroles and others in your situation, good for you. If you can make it work for yourself, your parent and your family, that is great. We all have to work out our own situations and everyone's feelings count, not just the ones who are oldest.. My mum has been mentally ill and demanding from day one of her life, and even having her to stay for a few days in my home was very stressful. I never considered having her in my home as she aged. She is now 101 and I am 76 and still caregiving though at a distance, but believe me that is stressful enough when you have a lifetime of narcissism to deal with. Like any relationship it is a matter of what works for the people involved. I think it is very important that we do not judge one another for our choices, and do not convey that one choice is superior to another. Walk a mile in my shoes.... I had to almost laugh at a nurse who I talked to on the phone one time mother was in hospital. She said we have enjoyed having your mother. She is a very sweet person. I didn't say anything but could have told her a story or too. Let her deal with mother for more than a few hours in a few days and find out how sweet she is. It is very easy to look at someone's else's situation from the outside and think you understand.
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