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I keep running into roadblocks with trying to find options for paying for Mom’s care.... and the anxiety is setting in. I have posted some of this before, but…

The goal is to keep Mom in her home. Since about February, Mom's evening care has been paid for out of her savings account at about $5,000 per month, and we are going to be out of money soon.

Last week, I applied for a home equity loan in her name and she was pre-approved (good news). But, a few days later, I found out that the POA I had set up did not include loans. That was my fault because when I did the POA last year, I didn’t include loans as an option. All I wanted to do was be able to pay bills since she couldn’t add me to her checking account because she didn’t have a valid ID. So, I did the POA. Never having been through this before, I had no idea at that time that we would even have to hire caregivers. So, the HELOC is now on hold, until/unless I get guardianship of person for financial.... to the tune of several thousand dollars.... Or a redo of the financial POA with a physician certifying her incompetent (she can no longer sign her name…). We will probably be out of money by the time that goes through the court system…

Today, I talked to an elder law attorney, and made an appointment for 2 weeks from now... more $$....

Over the phone, I inquired about the Medicaid waiver in order for Mom to stay in her home once her assets are paid down. I was told by several people that there was an 8-year wait list. Well, as it turns out, the State of Maryland put a hold on in-home Medicaid waivers two years ago because the list was too long. The lawyer told me that the only way around it is to go into a nursing home until Medicaid kicks in and then go back home. Then the waiver would kick in.

The lawyer also gave me the name and number of a Case Manager. So, I called her. She seemed very knowledgeable. When I heard her fee, I told her we couldn't afford it....

I feel like it is all on my shoulders, with my siblings letting me do whatever I feel needs to be done. I am the only one who sees the problems and tries to resolve them by making phone calls while I am sitting with Mom... (I am making one of my brother go with me to the appointment with the attorney, though.)

My stomach has been in knots all day after getting all this news, thinking of all the money that has to be put out just to make sure things are right… Worrying about Mom running out of money... And trying to face the fact that Mom may have to go into a nursing home -- not because I cannot take care of her -- but because she has no money...

I really thought by now, she would be bedridden -- after all, a PT told me almost two months ago that Mom probably won’t be walking in 3-4 weeks…Wrong. Even after her last fall 4 weeks ago (and 5 stitches later…), she has been doing surprisingly well.

With Mom being 94, how can anyone even guess how long you need the money to last??

This has been a real learning experience – and one I do not want to go through again…

rsonju, thank you for your reply. Mom is receiving palliative care through the hospice program. She has the bed, wheelchair, etc. They don't provided Depends or pads, though. But, that's okay. The aide comes 3 times per week for an hour. Two of the days work for getting Mom out of bed in the morning and bathed. The other days, I have to do it.

Today, I am going to contract with another agency to provide some help getting Mom in bed 6 days per week. That will allow me to go home earlier. But, paying for 12 hours per week is better than paying for 5, 12-hour shifts per week. And, if the V.A. comes through, that will help, too.

I have applied for Aid an Attendance. I requested that they expedite the claim based on her age (recommended by the V.A. -- so that was good to know). The date for them to make a decision is August 26. I have to send them more information, though, which I am in the process of doing. It is good to know payments will be retroactive.

And, to add to the stress... Mom has a water leak somewhere between the water meter and her house.... One estimate was $3600... Today, I will get a second.... It is a good thing I stopped the night-time care...
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Have you considered Palliative Care? This is part of Medicare's hospice benefit program but it is for long term care. If you qualify, the program provides a hospital be, hoyer lift, special wheelchair and oxygen equipment for free. In addition, it provides incontinence supplies and any extra medicine that is deemed necessary. It also provides an aide to do bathing, a nurse that comes around once a week and a social worker to check up on the patient occasionally. It is like a nursing home but the patient is at home. You have to provide a caregiver or be one yourself but it eases your financial burden.

This program saved me when my wife became bedridden and I could not afford to place her in a nursing home. Everyone needs to check this program out because, unfortunately, it is not well known.

Another thing to check out, if your father was in the military, is the Aid and Attendance program provided by the VA. This program, if you qualify, provides a monthly stipend of around $1,000 to $2,000 (tax-free) for veterans and their spouses. You can go to "A Place For Mom/veteran's affairs" for more information. Again, this is a program that very few people know about.

There is a problem of doing the paperwork and the long time to get approved. However, once you apply, the VA credits your stipend to a account for each month it takes to get approved. For example, if your stipend was to be $1,200 a month and it took 6 months to get approved, you will get a lump sum of $7,200 once you get approved and will then continue to get your monthly stipend.

I hope this helps!
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We hired an Aging Care Specialist and yes, it is pricey, but I think we saved both time and money in both organizing help and paying for it. The rules for getting aid are absolutely Byzantine. It would take me a year to learn them all. Our Aging Care Specialist is worth every cent we pay her. Maybe give it a try with a limited number of hours?
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Yes, you are doing the very best you can for your Mother. You are a loving daughter & you will be @ peace knowing your Mother was happy. My Mother died in February surrounded by her loving family, in her own bedroom. She was 93.
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CaringRN, Thank you. I know, in my heart, I am doing the best that I can. I know Mom is happier in her home. That is where she wants to be.
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((HUGS Mapotter)) I KNOW the anxiety. My Mother's house was paid off, so my husband & I got a HELOC on her house to facilitate her wish to be taken care of in her home. Seeing the money quickly dwindling down to pay for her care( she had 2 Caregivers that were a God sent), I was concerned she may out live her money. Over time, my husband & I came to terms that, if that were to happen, we had done everything possible to fulfill her wishes & sometimes you run out of options. The house would sold & the money from the sale would be used to care for her.
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Thank you, Frances. My Mom's doctor does not have a social worker on staff. The hospice social worker doesn't seem to be able to provide that information. I think because she only handles palliative care and hospice issues. I did find a good resource at the department of social services. I found out from her that we did not need guardianship in order to put Mom in a nursing home. There is a surrogate law that would apply. All my siblings just have to agree. Good idea about legal aid.

I am back to hoping we don't have to do the nursing home route. If my brother passes before her, that would be a different story....
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Thanks Frances! It's my turn now to try and place my mom....
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Some ideas based on my own recent experiences with elderly parents:
Does your Dr have a social worker on staff? They might be some help in directing you to services.
Ohio has a senior service called Passport that will help connect you with service providers both private and public, like rides, meals, etc. by County.
Local Senior Services in Ohio put me in touch with with pro bono (free) legal advice, you get a 30 minute consultation plus follow up calls. This alone saved us hundreds of dollars in legal fees.
Catholic Family Services was a HUGE help in providing information on local services, how to sign up for Medicaid, etc.
Call the supplemental insurance company, Medigold was able to give me some info and direction.
Get the forms and sign up for Medicaid. Don’t worry about the waitlist, this is a lengthy process and anything you can do to be ready is an advantage. Rules change all the time.
Talk to as many people and orgs that you can, compare and verify advice because aging and care is a very complicated business. I got lots of conflicting info and had to keep asking questions. Be patient and polite, apologize and plead ignorance but there are a lot of people who can be helpful if you are persistent.
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Nicenurse, one brother lives out-of-state (only 1.5 hours away), but he won't help. He only tells us what we need to do.... The other brother who lives close enough, helps some (mainly all day Saturday), but will not stay overnight anymore (says he can't handle it). My sister has MS and cannot help. So, that leaves me and the brother who lives with her -- but he has pulmonary fibrosis, leukemia, and now anemia.

I/we did decide to stop the evening shift. We did that initially because Mom would get up at all hours of the night and fall. My brother couldn't handle it anymore. But, now Mom seems to be sleeping most of the night. She also doesn't seem to be able to get out of bed with the rails up. If she does fall, we have a fall mat. I still think we can keep her as safe if not safer than a nursing home would. Why send $5000 per month to have someone watch Mom sleep. So, I feel a little bit better about that. If she does fall out of bed, we have a fall mat. I still think we can keep her as safe if not safer than a nursing home would. We may have to hire someone to help get her ready for bed so that my brother doesn't have to do that (she can be uncooperative sometimes). And, that way I don't have to stay so late every day.

Thanks everyone!
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All I can say is I’ve been through everything you have ...& your mom is doing better than mine...who is 91 w dementia & cannot walk at all. It’s sad that it all has to fall on one sibling.
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Reply to CaregiverL
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Can you and your siblings take care of her in her home? I took care of mom by myself since she got only 1000 a month!
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Frustrating stuff. More money is needed for social programs, and instead the current powers-such-as-they-be are cutting them like crazy or trying to. When will people wake up to the problems coming around the bend, namely the sheer numbers of people who will need help for care as they age? Instead they cut taxes to benefit the wealthy, who do not need the help. I've even heard some billionaires say they do not need a tax cut. What are our priorities here?
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Shakingdustoff... I recently filled out forms for the V.A., hoping Mom can get some assistance - aid and attendance. First, I had Mom sign a consent form (allowing the information to be released to me). She wrote her first name and middle initial, but printed her last name. Right after that, I handed her a second form and she could not even write her first name. I tried 10 times (two different days). I even wrote out what I wanted her to write. Then I asked her to sign an "X", even showing her what it looked like. No luck. (That form allowed an X with witnesses.) I ended up having to grab her hand and do it. I had no other choice.

I was hoping it was just two bad fdays. But, a few days later, she wanted to get money out of the bank, so she got a check out. She couldn't sign her name, but she knew where the signature line was. Then she said that I could do it because I was on her account. (The gist of what she said anyway.)
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GardenArtist, no offense taken AT ALL. Thanks to everyone for their input. I haven't gotten to what everyone has written -- I am going to celebrate my granddaughter's second birthday! A nice break from the chaos.

As far as the cognitive issues, aphasia effects the part of the brain associated with speech -- first not being able to find the right words. Eventually not being able to speak and understand speech. It eventually effects the ability to write and understand the written word. The difference between other dementia-related diseases and aphasia is that aphasia doesn't start with dementia. It starts with not being able to find the right words. I have started to see some short-term memory issues with Mom. She still recognizes everyone. Whether or not she can say their names is another story....

I don't want this to even sound political here, but after all I have been through with Mom and seen with my sister, I cringe every time I hear "Medicare for All". If you have been through all this with your loved one, you can see what EVERYONE would be dealing with. And, the government will decide who gets treated for what. 

My sister, who is disabled with MS, has a Medicare "Advantage" Plan with Johns Hopkins. She now has a $25K balance on her home equity line of credit for one year from all the co-pays she could not pay. A smaller hospital forgave a $500 bill. Johns Hopkins would not even let her pay  $10 on her bill -- the only thing she had left at the end of the month. They told her they would have to send it to a collection agency.

Gotta run.
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The tsunami of the baby boomers hitting being “at need” will vaporize the existing social service systems in the US. The first low waves are already lapping at the states shorelines.....

In my state - Louisiana- the current state budget does not have the $ to pay for the required state coshare for Medicaid programs. The governors office (D-Edwards) via DHHS sent out a letter last month to abt 40,000 medicaid recipients in LTC programs (AL and NH programs) that as of July, 2018 state funding for Medicaid would cease unless legislators prioritized Medicaid to have it fullly funded in the budget.  Legislators were pretty peeved that Governor Edwards did this but he said it needed to be known as families needed to plan.... Their in a dual “special session” & regular session right now up in big Baton Rouge to deal with the massive shortfall of $ due to the clusterF that was the whiz kid Bobby Jindal R-governor years (huge tax cuts and tax abatements along with some less than stellar tax credits programs). But something definite has to be placed by this Monday, 6/4 otherwise no state share of Medicaid paid to facilities starting July. Several NH owners have said that if that happens they will close within months and the fall back is to send residents to ER and let them then become a problem for the state Charity hospital system to deal with. 

Aging in America will not be pretty unless there’s a dramatic change in governing. 
The midterms are super important. 

Unless you’ve dealt with an aging “at need” elder or special needs child, most folks are clueless as to the costs and availability of programs.
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MaPotter, I'm so sorry if I made any hurtful comments regarding your mother's inability to write. That wasn't my intention. I was trying to figure out how she could agree to a HELOC under the existing circumstances.

Guest, thanks for the insight. As with the signature issue, I was trying to figure out some way that MaPotter could get help, and politicians have been known to sometimes do something for their constituents.

Your points on what's probably become overwhelming in getting on Medicaid are well taken. I think we're heading for a crisis in elder care, sooner rather than later.

I watched part of a good PBS program last night, and plan to post on it separately. The "golden years" are anything but, and with a redirection of priorities that definitely are not humanitarian oriented, care will probably be more challenging, and as you pointed out, people are going to slip through the cracks in the safety nets.

Or maybe they could be recruited to build walls, as it seems as though a certain individual continues to alienate other countries...and who knows? Maybe he'll want to waste billions of dollars building a wall on our northern border.
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Garden, I live in Texas. In home waiver lists exist. My autistic son is on a community assistance waiver waiting list and has been for almost 10years. It’s almost impossible to “jump the line”. So much need and lack of resources. If the level of need is that great, nursing home care is usually deemed cheaper and easier to administer in large populations. The “need wave” coming with frail aging and disabled persons has already overwhelmed states. Look at homeless populations in major cities. Lack of affordable housing and Medical care are cascading thru the states. Too few dollars left from tax cuts and business waivers to lure investment to fund programs. Tip of the iceberg.
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Absolutely maddening, isn't it?
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GardenArtist... Mom has never been diagnosed with dementia, though she does have some (I'd say moderate) cognitive issues. She has expressive aphasia, which is pretty advanced now. Along with that comes her inability to write, which happened recently. So, there is no way for her to communicate. Sometimes she will say things as clear as day. Other times, she makes up words as she goes along. How much she understands, is hard to tell, too. Some of us think she knows more about what is going on than others may think. Sometimes, though, she doesn't even respond when asked a question (blank stare). She could also shake her head No, and mean Yes.... With aphasia, you never know...

I used a POA form from eforms and removed what wasn't necessary (at the time). I have only submitted it to her bank where she has her checking account, and their lawyers approved it. Then recently, I submitted it to my credit union, who did not because the part about the loans definitely says I don't have the authority to do that in her name. Again, that was my fault for leaving that out.

Before we can apply for Medicaid, her assets have to be down to $2500 (or maybe $2200). We have about 5 months to go before that happens. If she went into a nursing home, it would be about 2 months.... For the Medicaid waiver for in-home care, your assets have to be down to $11,000 before you can apply. But, that community-based waiver is not an option because the State is not accepting applications for it (as of 2 years ago). One question I have for the attorney is how long would she have to be in the nursing home and on Medicaid before we can bring her back home....

I did submit the form for Medical Assistance for the advisory level of care -- which is used to determine if she is even eligible for a nursing home care. That is the first step apparently. Then I have to see if we (my siblings) can have her admitted to a nursing home because she is not able to sign herself in, and does not have a medical POA... I have heard conflicting stories.... One was that we need a guardianship of person set up for medical. Someone else told me that the Surrogate Law will allow her children to do it, provided we all agree. So, there are many more hurdles to jump...
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BTW, contact the attorney again and let him/her know this is an urgent situation. Or find someone else who can get you in on a quicker basis. If you're using a sole practice attorney, consider a law firm with multiple attorneys; you might even be able to meet with a paralegal who can take all the information on behalf of the attorney.
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Ma, am I understanding correctly that you prepared the POA for your mother's signature? it wasn't done by an attorney? If the former, you might have trouble using it anyway b/c it would obligate your mother (or you, possibly as guarantor) and make her liable for an indebtedness she might not be able to repay.

I'm assuming your mother has dementia? How serious is it? Could she respond verbally? I have a vague recollection of working for an estate planning attorney who video recorded execution of documents b/c the individual couldn't write, or might have been blind....I just don't remember that much about the situation.

I'm thinking an elder law attorney could prepare a new POA, simple and straight to the point, but thorough, and explain it verbally to your mother for her agreement to sign with an x (with someone guiding her hands), or record the entire session to document that the POA was executed freely.

This isn't the best way to get it done, but it would give you authority to execute legal documents for a HELOC on her behalf.

Are you absolutely sure that the existing POA doesn't give you execution authority for a HELOC? Are there any catch-all provisions allowing you to perform "any necessary acts: to obtain financing, or care for her in other ways?

If there's nothing like that, I think maybe this is a time to call your elected representatives and see if there's anything they can do, like get a waiver from the Medicaid stay so that you can access Medicaid for payment. I'm sure someone could "pull some strings" for you. Or maybe some support from a local tv station (although I really wouldn't want to go public with something like this).

I hope someone else can offer a good suggestion. Sounds like you're really, really "between a rock and a hard place."
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freqflyer.... I hear you....
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I am so sorry you are having to go thru all of this. But, you are taking care of things appropriately and being proactive. You are taking good care of your Mom. It’s also good that you are including your brother in the appointment with the lawyer. I hope this all works out for you quickly.
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Mapotter, aren't you amazed at how much it cost to become elderly. I was in shock, like a deer in headlights when I heard the cost for professional caregivers, the cost of Independent Living, the cost of Assisted Living/Memory Care, and the cost of long-term-care for my parents.

Thankfully they saved for these rainy days, but once it started pouring I was wondering how long would all their savings would last.

I also couldn't believe the cost of items like Depends. Good heavens, run through a pack within a week or so. I was cutting out coupons left and right just to save my parents a few dollars.

And the cost of eyeglasses, dentist, and hearing aids that aren't covered by Medicare nor by secondary insurance. Come on guys, this is when our parents need these things on a more frequent basis.

My Dad, after my Mom had passed, was ready to sell their house. Whew, I was Power of Attorney... so on days that my Dad was back in his time machine to the 1940's, I could sign for him. Otherwise he was still able to read house contracts. That equity was a good buffer, but I still worried because I didn't know how long he would live. He came from a very long line of people who even back in the early 1800's lived into their late 90's. My Dad was the same age as your Mom.
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