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Alzheimer's Disease & Dementia Message Board
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Old 09-11-2012, 01:32 PM   #1
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Hello all,
I have been taking care of my elderly mother for almost four years and am at the breaking point now. I have caregiver's burn out and am sitting here crying my eyes out. My mom not only has dementia, she also has NPH which means: Normal Hydrocephaly. The ventricles in her brain are enlarged from fluid and it presses against the nerves. This causes my mother to be off balance. She can't stand up on her own and sometimes she can't sit up.
I'm very much alone and feel so hopeless. When my mom got sick in late 2008, one of my sisters made plans to take our mom to live with her. I was the only person in my entire family who held a job and I had a career. I wasn't even involved in my mom's life hardly at all because of a falling out we had. The only reason I went to see my mom is because two of my sisters asked me to. I was on medical leave at the time and had to return to work in two weeks. Right before I was to return to work my sister decided that since I was already living in the next town from our mother, I could take care of her. All of siblings cut the ties with me and our mother and that was it.
I was terminated from my job. I moved my mother in with me and my husband and not long after, he left me. When he left, I lost my house. I also lost my car.
I have tried and tried to get home health care for my mother but because of Medicare budget cuts and policies, I can't get anything. I am so damned tired and weary I just don't have anywhere else to turn. I found this site by Googling it and I need some comfort. I know I'm not the only person going through this and I know many people have it worse than I do. It really doesn't comfort me much though. I've gotten to the point that I can't stand being around my mother. She is nasty, hateful, cold and mean. We have never been close and her mouth makes my life completely miserable.

 
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Old 09-11-2012, 04:29 PM   #2
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Re: New Here

Your Mom has dementia and NPH. Not making excuses for her past behavior but at this point what you describe is a result of her dementia. It is what it is and not to be changed. You can use anti psychotic medications if she is manic, combative, or out of control but the day to day has no fix. Four years, day in and day out, is enough to burn out anybody. Cut backs have made it more difficult to get some kinds of care but don't give up trying to get help for yourself and your Mom.

First a few questions.... does your Mom qualify for Medicaid? Does she have any assets that would have to be used before she qualifies? Have you consulted with an elder lawyer regarding her qualification for Medicaid? If she does qualify and it is impossible to get in home care... then try to get her placed in a facility.

Placing in a medicaid bed from home may be difficult as well. Mom may need to go through the ER or hospital system to get placement. They do prioritize placement and placements from hospitals are at the top of the list. So my suggestion would be to take Mom to the ER when she is at her worst. Tell them you can NOT bring her back home because it is unsafe for her. As for a social worker to find her placement. You do not have to bring her back home no matter what they say.... and they may try to pressure you into doing just that.

In the mean time let your siblings know what you are doing. If they don't like it then they can come get Mom.

What you can not do is to stay at home 24//7 with Mom and expect things to be different. In the mean time call the Alzheimer's Association in your area (the national hot line will be your first step) and they will help you with alternatives.

Love, deb

 
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Old 09-11-2012, 06:08 PM   #3
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Re: New Here

You might also call your local United Way 211 number for assistance in the meantime. They may have an eldercare attorney who could counsel pro bono. Also, your local bar association usually has a list of attorneys who will give you 30 minutes pro bono. Tell them you need someone specilizing in eldercare.

 
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Old 09-12-2012, 05:35 AM   #4
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Re: New Here

Lost,

I am so sorry that your family are in such state given your Mom's sickness.
Indeed Mom makes things difficult. Did she drive away your husband?
Perhaps the issue is to set the priority. You cannot let your Mom run and ruin your life as it has happened... She is sick. She is angry or mean because of her personality and disease. Right or wrong, she is the way she is. You need to find a better way to take care of her. Like Deb said, get medicaid for her so she can go to a nursing home. Ask for antipsychotic drugs for her. If the caregivers are burned out, it is time for her to go to the nursing home. Or get more caregivers which is expensive but they can take turns. At one time, we had 4 or 5 caregivers for home care for my late FIL! So we sent him to the memory unit and he actually liked the new NH!
Also do let the sisters know what status and tell them Mom will go to the NH unless they will help out again. If the family is in this state due to Mom's disease, it is not worthwhile - it is her disease! Move her to a NH if it helps you to get hold of your own life again!

Good luck and take care,
Nina

 
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Old 09-14-2012, 01:16 PM   #5
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Re: New Here

so sorry to hear this. you have to try everything to get your own life back. the above suggestions were great. this is a horrible disease. hugs to you.

 
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Old 09-14-2012, 03:01 PM   #6
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Re: New Here

Dear Lost -

Although I am across the country from you, I am sending you huge, HUGE {{{HUGS}}} right now!!!! I am so glad you found us! You need some support! Please, please take very seriously Deb's suggestions. It may seem harsh to you - though it shouldn't. How you've done all of this caregiving for 4 years by yourself is.......remarkable, but it will break a person. Any person!!

Whether we like the options or not, there are options available. I learned the system - of having to take them to the hospital - and then you get that social worker helping you - and then you can get them placed. Like Deb said, the hospital may give you some push back......stand strong. Keep telling them she cannot return home - it is not safe for her.

Please let us know how you're doing. Please find an elder law attorney through whatever means you can. Start putting into place a support system for yourself. Yes, let your siblings know what's going on, but you must take care of yourself. There are many people here who not only have excellent insight, but truly, truly care. I'm one of them Keep us posted. You are NOT alone. This WILL get better

 
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Old 09-16-2012, 06:30 AM   #7
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Re: New Here

I'm so sorry that you're not getting any help. If you have a Catholic Charities in your area, do try them. I know of some friends who were able to get some home care help through them. Good luck and take care of yourself! Hugs...

 
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