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I have been the live in daughter and caregiver for 2 years. I have durable POA for my mom who has Alzheimer's. I have been patient in waiting for my mom to peacefully and willingly move to my home but she is onboard and then not which has been our only struggle. My only older sister has not been actively involved in her care although she lives 15 minutes away. Now that I have expressed the need to move her, relatives have come in to explore her ability to stay in her home. I feel that they do not trust my decision. My mom's doctors, social workers, and medical professionals recommend that future care plans be made as soon as possible. How is the best way to deal with family who oppose my decision? There is no way that my mom can afford 24/7 in home care and the biggest argument is why should she pay for a stranger to live with her. What would that cost? I found that the average cost is between 17-22 per hour irregardless, of 24/7 schedule? Who can afford that anyway?

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If you are the POA then you are the one who gets to call the shots.

Is your sister afraid that your mother's care is becoming more than you can take on by yourself? Is she afraid that if you become ill that you/she will be left in a very bad predicament trying to find someone on the spur of the moment to step in?
These are very valid concerns.

We had 24/7 care for my mom in her home. Part of that time was with an agency, most of it was by ladies "off the street",
One of the posters below said that $17-22 per hour will get you a CNA. Only two ladies from the agency were CNA's and mom was paying $19 per hour hour. BUT, the ladies that were NOT CNA's absolutely did just as good!
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KaleyBug Jun 2020
In our area its $20-$25 and not all are CNA’s
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I agree with Grandma1954 regarding waiting for mom to make up her mind. This is a never-ending battle, yes one minute, no the next (sometimes it is just plain NO to any move, which is what we faced!) It doesn't make a lot of sense to maintain two households, but it is difficult to bridge that gap. When mom refused to consider moving anywhere, our EC atty told us we couldn't "force" her to move. He suggested guardianship, but the facility we chose wouldn't accept committals, so it all came down to a fib, of sorts. Facility said just get her there, they would handle the rest!

If it's possible, can one room at your place be emptied and used for her BR furniture, so that it would seem like "home" for her? Would you be able to get help/pay for someone to move the items to set it up? You'd likely need at least one other person, so that someone can watch over mom (and try to prevent her seeing the "move") and the other to direct the items to be moved and how to set them up.

As for "exploring" options, let them. I had done a bit of homework prior to the need to move mom, so I understood a lot - not everything, but enough, with plans to continue learning as we went! Bros? Not so much. After our first facility review, BOTH of them immediately had sticker shock and stated for that kind of money they would take her in! I was not really in favor of that, but said if that's what you want to do, fine, but be sure you KNOW what you are getting into! Our mother and her sisters took turns caring for their mother, every few months. She was easy to care for and did NOT have dementia. She was also a lot younger than mom when she passed. Mom is now in year 4. Thankfully neither brother followed up on taking her in. OB is abusive with ZERO patience, YB is still working, his GF condo doesn't have room and he is too forgetful to entrust him with her care! Never mind both are clueless!

That said, as you are aware in home care is MUCH more expensive. It also requires a lot of oversight - you need to know they show up, on time, and perform the duties they should be doing. You also have no idea where they've been, where else they might work and what contagions they might bring in. All options leave a lot to be desired, but we do the best we can with what we have available for resources.

In your case, if mom owns her own place, it would need to be sold if she moves in with you or to a facility. The net from that sale can provide assistance for you (it will get worse and you will likely need help!) or cover the cost of a facility. Seeking input from an EC atty would be wise, esp if you move her in with you and sell the house. They can advise whether she could sign a care agreement, which would be needed to take in income for caring/sharing the home, and CYA in case she ever needs Medicaid.

While the others are hemming and hawing and "looking into" alternatives, you can tally up some yourself and perhaps provide it to them (maybe shut them up?). Calling a few agencies can get you a ball park hourly rate (average several) and be sure to inquire about after-hours (nights), weekend and holidays, as the rates generally go up for those. You could also call a few facilities and inquire what the rate is for MC, and what it covers - understand that the base cost covers only so much and there could be additional charges! Been there. I wouldn't bother with any NHs, as generally the resident would need specialized nursing care to qualify. I do know that they ARE more expensive, by a lot, than regular MC facilities, but that is mainly because they have to have more nurses, for specialized nursing care.

More often family members want to avoid paying for services, whether in the home or a facility, to ensure they get to inherit something! Consider it a bonus if they are not doing that. Also, remember that given you have POAs, you get final say in how her assets are managed. Welcome input, weigh it but you decide!
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disgustedtoo Jun 2020
Oh, more considerations - when you hire care-givers, esp at that rate, you are getting CNAs. If mom takes medication, you can set it up in a locked timed dispenser for her, which they can check to see if the meds are taken and encourage her to take them if she hasn't, but they CANNOT dispense it or make her take them. THAT would require a nurse, and THAT will cost a LOT more money!

If you hire from an agency, they should be covering things like the CNA's compensations, vacas, taxes, workman's comp, etc. If you hire privately, you get into a huge ball of wax (think lots of paperwork and managing payments for taxes, SS/Medicare, having proper insurance, etc.

Going back to the need for oversight - you'd want to set up something, even if it is a simple camera system (this would need internet/wifi connection, more expense if she doesn't have this), to ensure someone shows up and is on time. When inclement weather or car troubles happen, who will be there for mom? Additional cameras could be used to monitor daily care - would these CNAs just be glorified baby-sitters or actively engage and work with mom? Not saying anyone needs to keep mom go-go-going for 8 hours, but neither should she be just sitting, being watched for 8 hours at a time!

Our mom's place (before lock down) had regular activities to engage the residents. Sometimes sing-alongs, bingo, other games, arts/crafts, mild exercise, encouraging activities and socialization at various times of the day. Would they be able to find those special people who would do similar activities with your mom, at the very least the same that you do? It is not a high-paying job and some, too many, are not motivated by the caring itself. You just don't know what you're getting unless you are there to see everyday (or have cameras.)

But, welcome input, question anything that seems to be "too" good to be true, as it likely isn't. After the sticker shock I mentioned, OB went back home, down south, and promptly reported that a facility there that he checked cost about 1/3 of the costs quoted here. I wouldn't want her there with him being the only one to visit or check on her (his last trip up included one visit and he refused to go again as he "didn't know what to do with her." This from someone who was going to take her in!!!!!) I checked the place and reported to him that the cost he was quoted was for the room only - everything else was ala carte. Additionally it was a for-profit place, which mom's isn't, so the concern is how much cost-cutting goes on to ensure investor's get their money?

Anyway, be informed yourself. Document everything you find and learn. Make that long term plan the others (doc, etc) are suggesting and present that to them, welcoming input, but again YOU should have the final say! Consult (should be able to get ~30m initial free) with EC atty about how to approach everything, legally, financially, etc. Her assets should pay for any services they provide. We set up a trust for mom's liquid assets and then put all the proceeds from the condo sale into that, so she's covered for quite a while longer! BTW, 2 of us are POAs, but I gave up consulting with the idiots - they have questions, ask now or forever hold your peace! During that time and since, I just manage it all myself!
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Is it possible that others are checking out alternatives because even though you have been doing this caring for someone 24/7/365 can be exhausting and you can not do it alone. So you would have to hire caregivers at some point. A person with dementia will continue to decline so if you have been managing on your own and are resistant to other caregivers that might be a reason relatives are concerned.
I also hope you are getting paid.
As POA run the numbers yourself.
In home care with paid caregivers.
In home, your home with you and occasional paid caregivers.
In a facility be it Memory Care, Assisted Living or Skilled Nursing facility.
Present your figures as well.

Moving mom into your home would mean that you can "charge" her for a portion of your mortgage, all utilities and other household expenses. As well as she would have to pay for any adaptations you would make to the house to make it more livable for her. And her assets would pay for supplemental caregivers hired. Are your relatives afraid that you will "make money" on taking her into your home?

And the fact that your mom has dementia she really should not be making the decision to "peacefully move into your home" she should be where she is safest, is able to get the best care.

I also have to ask...you moved into your moms house to care for her.
What of your house, your life? Are you paying mortgage? Why maintain 2 households? Decision to move mom and sell her house, or you sell yours should have been made at least 12 to 16 months ago.
Did you leave a family of your own?
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angelalutz63 Jun 2020
Thank you so much for sharing. Luckily, the timing to move in with my mom 2 years came at a perfect time. I put my house for rent and personal items in storage and left 2 adult children, friends and my life there. I returned to my home after second set of renters moved and realized leaving was a mistake. Now the inevitable is upon me to bring my mom into my life this time around. I plan on converting my 750sf porch into her new area but I'm trying to move her in while the construction is in process because my home no longer generates an income and now my mortgage payments start without enough income to cover them.
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What does your mother want? What did your mother say, back when she was capable of expressing an opinion?

There is nothing wrong with exploring, and the more options explored, the better. It isn't that people don't trust your decision, it's that they too are interested in finding out what kind of care structure might best suit your mother.

As you have DPOA - does it cover health and lifestyle decisions, or only money? - this probably is in fact your decision to make, ultimately. But you'd be a fool to suppose nobody else had anything helpful to suggest.
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If you are here POA, you don’t need to volunteer information to anyone. You do what you feel is best for your situation.

Let then look into whatever, doesn’t matter, you don’t have to listen unless you want to.
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Angela, it’s actually reasonable for other relatives to want to check out alternatives. It doesn’t mean that they ‘don’t trust your decision’, just that they want to know the deal for themselves. If they do check it out, you already know what they will find out! Because the medicos recommend that ‘future care plans be made as soon as possible’, give them a short time to come up with an alternative plan that works. Let them work out the details, both care and costs. Remind them that you have the POA and have the responsibility of making the decision, but say that you are happy to share what you have found out, and to see any viable options they want to suggest.

I can understand that this is particularly annoying for you, after you have been coping more or less on your own, but it is in everyone’s interests to avoid having a fight about it. Best wishes, Margaret
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Let them explore what it will take for her to stay in her home - they'll soon find that mom cannot afford to hire the care if her finances are what you say.

As I understand - you have been living with her for 2 years, but have your own home, too. You want to move her to your own home. When relatives figure out what 24/7 home care costs they will have to consider a Plan B. Unless, of course, one of them is wealthy enough to pay for the care that mom cannot afford.

Plan B would be - you want to live in your own home again and willing to take mom with you. Yes, you will need some hours of home care to give you some breaks. Either they can set up a calendar schedule to show up at your house to assist, they can pay out of pocket if they choose not to participate, or mom's money will have to be used to pay for it. She would be living with someone she knows and not being overlooked or waiting on help like she would at a facility. There is also the option of selling mom's house to use for her medical expenses (in home help to give you a break). I would suggest an elder attorney to set that up for all of you to avoid problems later on. At such point, you cannot care for her in your home, the balance of money mom has would be used to pay a facility. And when her $ runs out, you apply for state funded medicaid bed.
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Sometimes the best way to deal with unreasonable requests is to pretend to consider them, and present a plan for all those protesting to provide input. Once they realize how much they'd have to participate (and sacrifice of their own time), they may stop meddling.

1. I assume you have some written medical concurrences of her need for assistance? Take the strongest ones and add them to a packet you can present to the family, which essentially will be the stay at home plan by which they all agree to contribute, one way or the other.

2. Identify the chores, equipment and anything else needed, make a list, and include that in the family packet.

3. Create a table/schedule of tasks, times and volunteers and circulate it amongst the family. The chore list needed should have backup volunteers in case or when someone backs out, for legitimate or not legitimate reasons. Make it clear that any one who wants Mom to remain in her own home needs to contribute to make that happen.

4. Identify any equipment you might need, ranging from grab bar installation to mobility assistance; research, price the items, and ask for the family to indicate how much they can contribute (for items not paid for by Medicare).

5, Price local caregiving companies and get estimates for 24/7 care. Include that in the sign-up sheet and ask for contributions from family (which could also include volunteering for meal prep).

6. Contact your insurance agent to raise the issue of liability for injury of caregivers if they're not provided by an agent. This could be a major factor, especially if you hire directly and need to provide insurance yourself.

When I explored this issue, I learned that we would have to have a commercial liabiilty policy, not just an additional covered issue to a homeowners policy. This varies by state from what I've learned, and it is expensive.

These are just for starters. I rather suspect that you won't get too many volunteers or commitments and that may stop their attempts to intervene.

Remember though that if the proxy you have is a POA for financial and business only, it doesn't address medical issues. Does Mom have Living Will or other directive? If so, are you the only who can make medical decisions for her? This may eventually be an issue, and you need to make sure that the family, if not authorized, can not intervene in her medical care and decisions.
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Yes, it is very expensive to have 24 7 care.

I have my 96 yr old Dad that wanted to stay in his own home and after a month of searching, I did find Caregivers willing to do it for $9 hr, which is $512 every week.

You can let your opposing family members that you will be more than happy to have them all split the cost of mom hiring 24 7 Care or having them have mom come live with them.

Onice said, you'll see how fast they back off.

Do what is best for you and your mom.

Just a note, There are plenty of Caregivers that will Care at $12 an hr. as long as it's Full Time.
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It's your call. You have the POA. I would discus the cost aspect of providing in home care with the family. At some time, it's likely that you will not be able to care for mom as the disease progresses so developing a future care plan is necessary. At this point you might want to call your local Area Agency on Aging and your state Dept of Aging. They are both a good source of information. Does she qualify for Medicaid? If so, there are some good programs that are Medicaid paid. But ultimately, her healthcare decisions are in your hands.
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It often doesn't come down to "affording" but to the fact that 24/7 care is almost impossible for one person to provide. Then the best care, even if with government help, that can be found IS found.
If you have POA currently for health and financial, this is in your hands. However, others in the family may not be willing to assist if they feel your Mom needs more or other care. Wishing you luck in working this out.
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