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My mother now requires 24/7 care. Before I was able to take off and leave her alone for a couple of hours. I can't afford to pay someone to sit with her while I run errands like other people do to live. Like grocery shopping, doctors office visit (I have disability), check the mail, go to the bank, etc.
I'v Been able to get hospice care for my mom, but there's a long waiting list for volunteer "sitters"
I have one family member willing help, but she's only able to sit with her for a couple hours. The rest of the family can't be bothered. My mother's insurance covers five-day respite care per month but with her combative dementia Its been very difficult to find a place that will take her. especially after I got her to go once but I got a phone call to come pick her up after only two days. My mom refuses to go to adult daycare. My sisters are against putting her in a group home. My sister has power of attorney.
Please help! I feel like I'm dying inside. Any advice would be welcome. Thank you

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I'm so sorry that you are living with all of these constraints along with your own disability. It's only right that your sister who has POA should figure out how to give you some breaks whether she provides your mom with company or she pays for in-home care a few hours a week at the minimum.

It's terrific that you are working with hospice. I hope that they can get someone to help you, but you still need support from the family. As was already mentioned, you need to be specific and brave. Tell your family that you need someone on Tuesday for three hours so that you can run errands - or whatever makes sense to you. Be firm. If they won't help then tell them that you are looking for a group home or a hospice home for your mom and that you sister needs to be there to sign the papers.

If you get no cooperation, then try to have someone that your family respects talk with them. Other than that, I'm not sure what you can do unless you seek legal help, and that is very stressful too.

Please keep us posted on how you are doing.
Carol
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First of all, I empathise completely. My mother has gradually come to require 24/7 hour care and as an only child this falls entirely on me. However, if I had siblings I would ENSURE that they took their turn and I would book them in for days so that I could take a day off. You need to do this, and you should tell them that you yourself will go under with this relentless care regime which is both physically and emotionally taxing, and tell them that if this happens THEY will have no choice in the matter of whether your Mum goes into a group home as you won't be available to do the care.

The second and very important thing is WHY does your sister have PoA when your mother lives with you? This is crazy. Your sister has no real appreciation of either your mother's or your situation so why is she involved in determining what goes on in your mother's life OR in determining the quality of your life? I feel very strongly about this because I know how it wears you down when you no longer have the freedom to go out of the house to even run an errand, but if doesn't stop there. As things progress you will find that you can't even have a telephone call in peace because your mum expects you to be in the room with her all the time. You have to set up a system where you have periods when you are 'on duty' and periods when you can do your own thing. I really sympathise with you.
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Passport is a local Medicaid Waiver program through the Area Agency on Aging that serves our community. Check your local agency to see if a similar program exists for you.

This what the program states: Eligibility for PASSPORT revolves around two main factors:

Physical help needed for everyday activities
Financial help to pay for in-home services
More specifically, older adults qualify for PASSPORT if they need:

Hands-on help with TWO or more of the following:

Mobility/Transferring
Bathing
Dressing
Toileting/Using the Restroom
Grooming
Eating
Taking Medications
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I feel your pain. My grandmother recently moved in with me and my husband because she needs 24 hour care as well. My mother (her daughter) has advanced MS so she is not able to help, and my Uncle (her son) is pretty much nonexistant...he finds time to see her about 4 times a year.

Being a grandchild, this has been very hard to deal with. I have spearheaded everything...updating her will, establishing her POA, managing her finances, keeping up with all her medications, scheduling and transporting her to all Dr. appointments, managing her meds, and now...I do her dressing and have to help her with ALL toileting...it is exhausting!

Did your mom happen to name a back-up POA? My grandmother named me as her POA, but she has my sister as her back-up if I ever choose to waive this responsibility...maybe your sister could waive her POA if you are your mom's back-up. If your POA sister won't come around, just simply say to her "What day works good for you to have mom come and move into your house...it's your turn" and just see what she says...explain that you need help, and your family needs to help figure out a care plan that works for you and your mom.

Finding time for yourself is going to be hard. My husband's mom (my mother-in-law) is willing to come over for a few hours to sit with my grandma once a week so I can run errands or go to my own Dr appt. Otherwise, I would be stuck in the house every single day.

Have you talked with the Area Agency on Aging? I just recently met with them (they came out to the house) and they gave me a lot of things to consider, such as the PASSPORT program. My grandma doesn't qualify for this program yet, but maybe they can offer you some volunteer sitters or advice. God luck!
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If you have sisters and one of them is POA they need to assist you if your mom requires 24/7 care. Have you asked for their help? Have you been specific? "Hey sis, I need to run some errands on Friday, I'll be back in 3 hours, would you come and be with mom?"

Your sisters are against putting mom in a nursing home? Then they need to pitch in or you just may walk away because the burden of caring for someone around the clock is too much for one person to handle. If you put it that way maybe these sisters will be more likely to help you.
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Your sister who has power of attorney needs to provide funds from mom's savings to pay a home health aide or daily day care programs. You can not care for her full time without assistance. If mom has no funds, the sister should find and free programs for which she qualifies and enroll her. You have a disability yourself and even without any health issues 24/7 caregiving isn't possible. You will burn out.

If the family is against nursing home placement, they need to step up and assist either directly for her care or fund it if they are living a distance away. So far, you only have one sister stepping up. Bless her, but you need more. If not family help, then a combination of paid home health aides (daycare) and you.

Frankly this is exactly why many parents are placed in nursing homes. It is too much for the one child to handle and the rest of the family ignore the sibling who is doing all the work. They are "busy" with their families which never seem to include any help for their elderly parent.

If they refuse all help, funds are not made available for her care --then you tell them they need to pick up mom. You can give them the responsibility, she is no more your mother than she is their mother. They will start stuttering then.
Be ready for the verbal hostility from them.

Good luck.
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I find free time between 5 a.m. and 8 a.m. Then, my wife rises from bed, has breakfast, etc. and leaves by van for day care around 9:30 for return at 3:30 p.m. Day care at $95/day in CT is great and if needed, a sizable discount can be obtained. Good Luck! Gene
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Thanks for your advice, you all have been helpful in making a decision to call a family meeting, with the hospice social worker. She seems to be on my side. The lease on the apartment will be up in May. I'm telling my sisters I'm not signing another lease and mom will have to go to a group home to receive the right care I can't do alone if they don't make a firm commitment to help me with some time off. This is scary, no doubt, but having an advocate there will help. Thanks again for all the advice.
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Hi Stephanie, I havent had any help from either sibling for over 6 years that my moms been 24 hour care. Fortunately I am her DPOA and I use my Moms ss for her care. I get help mornings and have off 6 hours on most Fridays. After the first 4 years I felt like I was in prison, its very tough, you need to get help. Have your sister make out a caregivers contract to pay you with your moms money or you become poa. That is so you can get a break. good luck
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If you are not well, you can't help your mom. Without assistance, you will burn out, emotionally and physically.

I am glad the hospice social worker is helping you. Also consider talking with the doctor to see if there is a way to medicate her aggressiveness, if not always, at least when she goes to respite for 5 days. It will need to be addressed eventually, when you burn out, she will go to an appropriate home care.

I friend of mine had a lady stay with her mother everyday. That way, mom got used to the lady. However her mom was not aggressive or combative. Because people from other countries are used to the culture of keeping elderly in the home, sometimes they are better at providing the care.

Start researching, with the help of the social worker, for an appropriate care placement for your mom. This will take a while. Then have the doctor and social worker help transfer her there and let them know your sister has POA.

Your mom will not like it for a while, but will get used to the place. You can visit her there, and go home to peace and quiet, or take a vacation. Are you paid for the care you provide? You should be.

Good luck. This is really difficult. It is NOT your sole responsibility to provide care, especially if it exceeds your ability or puts you in danger of being hit, bit, hurting your back and such. Sometimes just by stopping your participation, the right solution appears. Right now you are the EASIEST solution for everyone except you. Much love.
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