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susiecna Asked January 2012

I am the sole caregiver for a dementia patient, and her three grown "kids" will not help or relieve me. How do I get them to help?

i am very stressed ,tired and depressed but she depends on me completely and i cant let her down because her kids refuse to help they are putting it all on me i do not know what to do because i promised my patient i wouldnt leave her because she trusts me and she will not allow anyone else to care for "personal" needs. i love her very much but i & my life is falling apart trying to keep my promise to her

N1K2R3 Jan 2012
How are you related to this patient? How did you become involvd in her care?
Pls.contact a lawyer to evaluate your position, your rights and your on-going responsibilities. Are there papers available?....i.e. Will, Living Will, Directives?, POA? Are you being paid by the patient? her family? or a third party? How are you paid? check, auto deposits, cash? Lots of questions here.

ZOEY1ZULU2 Jan 2012
I'm sorry to say so, but your being used in a horrible way. This is NOT a problem that you should be the one worrying about. Her adult children should be the ones doing all the worrying. I feel for you, BUT, if you keep acting like its your problem then it will stay your problem. You are going to have to be grown up about this and open up your mouth. I'm just trying to be on your side. I don't mean to sound ignorant but tell them about it, just like your able to tell us. Why are you so afraid to say something to them? It doesn't sound like you saying something could make it any worse than it already is...Don't be a doormat. You can still be as nice as you are to her even by saying something to them. You are only hurting yourself..

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ScottChi Jan 2012
Some states have laws requiring children to help a parent who cannot take care of him- or herself. Like North Carolina, for example. A social worker will know about this. Carol72156 is right, I'd use a little pressure to get the kids to respond.

Debb064 Jan 2012
Oh this is a hard one!!!! Been through this myself. I cared for my husbands 98 year old grandmother with dementia and her daughter is still living and in good health let alone a lot of grown grandchildren. And I would ask, or tell them that I needed a break from time to time let a lone some help but that always went un answered!! They were too busy or just plain didn't care. Its sad but its true for a lot of us in this position. Look to outsides sources for help, I found them to be way more help then any family member. And since I was with her 24/7 they listened to what I needed and how I was feeling. I demanded to her doctor that I needed and she needed nursing care at home and when the time came I had to demand hospice help too. Was told by family and her doctor that she didn't need this. But I knew she did and so did I. I don't think anyone really knew how bad things were getting with her or they just didn't want to believe!! Three months after I demanded hospice help she passed away peacefully here in my home. Its wasn't till then that they all realized how bad she was and how hard this was for me with no help from them. You can't change how people are, so you need to do whats best for you and the person you care for. If you've givin your all then that's is all you can give, there is no more. Feel no guilt in any decision you make, for you have to think about yourself at some point. Good luck to you and I hope all works out

jeannegibbs Jan 2012
You promised her you wouldn't leave her. Don't leave her. Work a reasonable shift. Visit her as you would any friend. But you have to set reasonable boundaries. If you work yourself into a breakdown and you can't help her at all, what good would that do either of you? Notify her children that you have to cut the hours you devote to their mother and that you can't be on call around the clock anymore. If none of them take responsibility, contact social services and explain the situation to them.

You are a wonderful, caring person. I do not mean to discourage your generous instincts, and I hope you can continue to bring comfort to your friend as long as she lives. You just need to do it a way that allows you to maintain your own life. If her children won't get involved, that is not your fault or your responsibility. Turn it over to social services and continue to do your part -- not 24/7!

NancyH Jan 2012
And let's face it Susie, if you were to suddenly drop off the face of the earth, somehow that family would muddle through. Nobody's irreplaceable, except in a family.

195Austin Jan 2012
I agree with Naheaton it is a job to you and they are family-when you made that promise things probably were different they need to take responsibility for their mother-call in sick soon for a day or two after you get in touch with social service-you can not ruien your health just because they are not steping up-if she is placed probably all her assests will go to the nursing home and you can be sure they are counting on getting money after she passes if yoy want to continue working a normal amount of hours a week that is fine but let them know you will no longer be on call -just do not answer the phone and turn down the answering machine after a while they willget the message I am sure there are loads of private duty jobs out there-there are so many elderly people needing care these days-please keep us posted so other can learn from your experience.

NancyH Jan 2012
Susie, it's no wonder this woman's family aren't going to lift a finger, when you're doing it for them. Take a day off sometime and have them pick up the slack for heaven's sake. What DO they do when you're not around?

susiecna Jan 2012
No i do not live with her 24/7 i live only 12 blocks from her home i am not with a company i am private duty and have known the family for over 18 years from us being church members i am on 24 hour call though and am with her at least 10-14 hours a day and sometimes spend the night and her dementia is getting worse so it is a matter of time before she has to have 24/7 care and i must see to it that she gets it because of my obligation personally and professionly and legally but hate to see it come to that because of knowing them all so long

Carol72156 Jan 2012
Are you saying that you are staying with your patient 24-7? Are you working for an agency or on your own?

If you are independent, contact the social worker at your local Visiting Nurse Association or Aging Services -- explain the dilemma and ask for help. If you don't have either of these agencies locally, contact the social worker at the hospital. Social workers are the most likely professionals to have an idea what your options are --- they're care coordinators.

It goes without saying that if you work for an agency, you need to contact your supervisor and work with her on resolving this problem.

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