Caregivers need help financially.

I share a similar situation with you. I've had to make sacrifices that I previously thought were impossible to care for my 91 yr old Mom and upkeep for the family home in the country. Mom could not stay here alone. She is doing well mind wise but she is very frail and I have recently transitioned her away from the drivers seat of her car. I have 3 brothers and a sister who remotely connect with Mom mostly by phone. I provide them with peace of mind so they can live their lives. I am not able to find work without travel and have been told I am overqualified. I wonder if it is because employers hear that I am caring for my Mom and they don't want to hire someone who may need time off for her. My nest egg is gone and I am forced to ask for support from the family. They are keeping track of what they contribute and plan to take it out of the estate when the time comes. Makes me feel as though i am not worth anything. This is their $$ but my God this is my life. All I see at the end of this road are years invested, all my money has gone to help with groceries and household to help Mom... my siblings will be reimbursed for their $$ but what about my time, life and $ ? They think I should get a job and pay rent and expenese because I live here. This isn't how I envisioned living my life at 53. So I pray for answers and guidence. I know I am doing the right thing by helping Mom to stay in place. I am keeping a promise I made to my Dad in his death bed. So, you are not alone. We will survive, we have to!

Welcome to the world of caring for the elderly. I don't recommend that anyone do it, harsh as that sounds. The cost to the care giver is just too high.

Here I sit, after a decade and more of caring for my mom, in dire financial straights. We had an agreement that I wouldn't have to pay expenses if I moved in with her and would be able to save my own money, an agreement that she reneged on a month after I got in there and the demands for money started. I supported her very well financially for over 5 years, until I ended up losing my job because of her never ending needs. She refused me POA. When my own heath started to fail and I was literally in danger of a stroke from the stress and around the clock care she needed, I was forced to abandon her to the state at the beginning of this past September as I couldn't place her myself since all her assets were in her name and I couldn't sell them. I felt trapped in the care giver role. Abandoning her to the state to get her placed resulted in her accounts being frozen, and resulted in my disability checks(disability for an anxiety disorder after I ended up losing my job)also being unavailable since somehow she convinced people that I wasn't able to handle my own money, a total lie there, I've only been handling my own money all my life and have never had any major financial issues. I was without a single dime for 3 months, with everything in the house getting cut off around me and my family. It's still all cut off. We stayed with a friend of my son's for about a week and a half, but I couldn't deal there and was very uncomfortable, so I got my younger son and I into an extended stay motel...which we must be out of my this Wednesday. This month, December, is the first month I've been able to access my own funds, which is why we could afford this extended stay hotel for a couple weeks. My mothers assets have now reverted to my older son and we're working to sell some land to get us back on our feet. The deal was supposed to close by the 15th of this month, but it's taking a little longer. If my mother's house wasn't paid for, we'd have been homeless. She didn't leave a single dime to make sure WE, her family, was provided for. Being land rich and cash poor didn't help my family at all. Now, I'm out of funds and will have to return to my mother's house...in mid December...with no heat, lights, phone or running water until that land sells. I might be in the cold a week, it could be longer, who knows? All I know is what taking care of my mother cost me and my family just wasn't worth it. I tried in the beginning when she was still sound to get her to sell some of her assets to go into assisted living. She wouldn't hear it. She refused. I am an only child. I have no siblings, no other family whatsoever to turn to. It's just myself and my two sons. They'll be staying with a friend until our land sells, but unfortunately I have to return to the house. I'll be completely isolated there in the cold for God knows how long. At this point, I'm just praying I survive until we can sell the land.

If I had this to do all over again, no way in hell would I have done it. I'm alone, broke, and facing living in a god forsaken house in the middle of winter without even enough money to buy firewood. My mother, however, is warm, clean and fed. This shit isn't worth it to the care giver, it's just not. Not when complete and utter ruin is the end result of care giving. Put these elderly in a NH people, and take care of YOURSELVES FIRST and the hell with promises. Nobody should end up where I'm at now. It's asking way, way too damn much from adult children. Nobody should be expected to give up their future security and be reduced to living like an animal, which is how I see my own situation because that's exactly what I'll be doing in a few short days. Nothing...and noone... is worth this. People need to wise up and put the elderly where they belong...in a facility with people that get paid to look after them. Period. If I knew back in the day what I know now, things would have been a whole lot different. Never in a million years would I have taken on my mother, and what SHE wanted, to stay in her home, be damned.

To clear up, my mom convinced someone somewhere to put her name on my disability checks, evidently stating I was unable to handle my own money, which resulted in them being unavailable to me after I got the state involved. Thanks, mom! I have no idea how she managed that. I've never had any financial issues, and always paid my bills. I bet she didn't mention that I supported HER financially for years and paid all the bills...

This is such a painful subject. For me it boils down to one simple but cynical question: what is the dollar value of emotional value?

Let's take us out of the equation. Mother/father gets taken into institutional care. They don't starve. They don't die of cold or neglect. They are "looked after."

But society says: what about your loving filial duty? What kind of child abandons its parent to an unfeeling system? Shame on you.

But we don't need society to tell us that. Our hearts have already said: this is my parent and I will care for him/her 'til the end of his/her days.

So we do. And it costs society nothing, it costs our more remote siblings nothing (unless the expense of keeping us is a net debit against the parent's estate - but how often does that happen?), and - I hear more and more - it costs us everything. Financially, physically, emotionally. It is Not Fair.

Essentially, it seems to me that we are idealists living in a world of cynics. No wonder we're not comfortable. So if we can't beat them, how do we join them? How do we explain and assert ourselves in terms that the cynics can grasp? Because right is on our side; all we need is the right language to communicate the reality of what we're doing to people who do not understand.

StandingAlone, If your disability checks are from Social Security, you can contact them to find out how to fix that mess. I would go in person to the local Social Security office to ask what to do. Your mother might have made herself representative payee for your account, but you can have that undone. If she did it without your knowledge or consent, she can be in big trouble and might even need to pay it back.

CM, I get what you're saying. But really, I don't give a tinkers damn if everyone here thinks I'm the devil himself for 'abandoning' my mother to the state. The only regret that I've got on that score is that I didn't do it years ago, and that I took on this role in the first place. I never should have, and what 'society' thinks be damned. Let this 'society' make these sacrifices, then talk to me about what kind of person I am. I am totally bitter about this whole care giving crap, and totally outraged for the people here, and everywhere, that are sucked into doing it out of some ridiculous sense of moral obligation, and end up beggared and lost with no security, no help, no nothing because these elderly demand to stay in their own homes and demand that their adult children into take them on and keep them there as if it were their God given right and are 'owed' that damn much. Just thinking about how I've ended up, the hardships my family has had to endure because of my mother, pisses me off royally. Never in a million years would I ask my own kids to sacrifice ALL for me. What RIGHT do I have to ask that much of them? Absolutely none. I raised my kids to have their OWN lives, to be happy and secure and successful and peaceful in those lives... I damn sure didn't have them so that I could have a convenient caretaker when I was old. When I can't take care of myself anymore, I'll go into a NH and that's that. I want my kids to LIVE, not die a slow mental and emotional death dealing with changing my diapers and having to watch over me around the clock. God for freaking bid. If that were ever to happen, in my view I've FAILED my kids. You have kids to let them fly free....not chain them in a cage with you. Just...UGH!!!! I have come to royally dislike the elderly that put their own blood in a lose/lose prison situation out of sheer selfishness. Freaking blood sucking vampires, the whole lot of them.

App, I had no clue that she would be on those checks until I got the first one. But it's all good now, they're in my name now, starting this month. :) Thank God!

wow, so familiar, also have student loans, caring for mom 24/7, no help from employed siblings, no payment from mom for 2.5 years I have cared for her, yes she has significant assets, used my IRA, broke, will I lose my house too?

we family caregivers keep folks off of medicaid, what for? To lose all ourselves? To benefit of siblings,.

I am completely overwhelmed with it all and now my sibs, getting my children in the midst of all of this. Too much today.

Glad, you might lose the house if you can't find some way to get paid. Scary, but real.

If life was the way it was back in the day, when families all lived in the same area, and people had HONOR and supported each other, and the entire family was around to take care of the elderly, I'd have no problem with the elderly at all. But it ISN'T that way anymore. Now, families are scattered all over the place, sometimes hundreds or thousands of miles away, and from what I'm reading around here all the time, even if family is close by they have no sense of honor or care and bail out, leaving one sibling holding the whole care giving bag alone. That should never, ever happen, imo. If families stood together and shared the care giving role, and everyone took on their fair share while others could get much needed breaks, that's a workable, fair plan. But that's just not how it goes these days, and I don't think the elderly have any right whatsoever to ask that one child take them on all alone, and risk that child's own safety and security, while demanding that their own safety and security be guaranteed at all costs, even if it means that their child ends up broke, and possibly homeless, all the while insisting that the 'do nothing' family members get a 'fair share' of any money left after they die. That is just outrageous to me.

Lose all for the elderly? Shouldn't ever happen, and it shouldn't ever be asked.

My situation is a bit different. I am one of 8. Oldest sister took the brunt of care while our father was dying. She and her husband are now ill and very ill after the stress of my father's illness. Mom was just along for the ride. Now that Dad is gone and Sister and husband are unwell enough not to be able to take Mom full time, she stays with husband and I weekdays and goes to sister weekends. Mom has never worked. Youngest sister has Power of Attorney. Never filed for Dad's death benefit. We get no compensation for Mom's care. I am disabled and have been on SS disability for 13 years. My husband is a DAV. We are both over 65, lost our house in 2009 when my husband lost his job. He is now working 10-12 hour days at a factory, Something he has not done in 30 years. We had to move to a place big enough to give Mom a room. Rent is $1500/ month for starters. Our savings are gone already. Yeah, so who is going to care for us when we tank like Sister and Hubby? At least they have good pension plans. Our kids are autistic and are unable to take care of themselves. Guess we go to State Care. Whoopie.

IMO you should be paid by Mom.. If not you then professional caregivers!!

I know, I know A&A. Please do not get those self righteous one going again about what bad people we are for wanting payment. All we want is a method to maintain some sort of normalcy in our lives so that when this caregiving is done there is something for us to resume our lives.

What a slippery slope we have all embarked on. Our situations may be different but the end results look pretty much the same -- financial ruin for us in our 'golden years'. My mother wants to stay in her house too and to her credit she willed it to me. However, her PD has changed all her best laid plans and she will need every dime she has for her eventual landing in a NH. Something she doesn't want to admit. She keeps saying "I'm living this to you" But I see the writing on the wall. I certainly did not see 5 yrs ago that I would be pretty much jobless and prospectless as well. If I had to do it over again I would have told mom "no" but 20/20 hindsight doesnt' pay the bills either.

My friend in another state gets a pay check from Medicaid for taking care of her mother. You folks might look into that - perhaps your state would have a similar program.

To Anglomercy 911, my heart goes out to you. You have done what you can for your parents..seems like you are asking for advice....Find a good ALF or NH for your mother. Figure out how to pay for it with her money, and if that runs out, apply for medicaid. Visit her often, love her, make sure she is cared for. Get a job and build a life. Do not feel guilty or let other people's judgements control you. If your mother was a loving mother and in her right mind, that is what a loving mother would want you to do. There are some good homes out there..you might even consider moving if you find a good home in another city, so you could put her in a good place to be and you could visit her often. A parent who would ask you to "do whatever it takes to care of them" is either very selfish, or more likely, just doesn't understand what they are really asking, because they lived their life and did not do that for their parent. So make the best decisions you can for yourself and your mother, and don't worry about what others think. Get some professional help if you need it. Pray for answers. Hugs to you.

amott6,
Medicaid payments to family caregivers are minimal, I think $1,500.00 a month in my area. And care recipient would have to be Medicaid eligible. Most of us are talking about parents with substantial assets, and because of impact to estate, and concerns of siblings of what will be left for them if appropriate payment is made. I can see share and share alike if siblings were doing their fair share.

First, with no income, file for a forgiveness on your student loans. You will find the link from your loan holder. I did and will get relief. Secondly, check into GE (the big company that is legal) about a job from home or anyone you might do on the computer. You can also bake and sell, and barter with others. You can also have your mother pay you from her money for your services. Get the legal documents in order and keep meticulous records. Merry Christmas!

In this type of situation, caregiving needs to be a paid position. If the one you are caring for has no financial resources, then it's up to other family members to ante up or else seek outside care. With respect and love, it's time for a reality check. Take advantage of community resources such as council on aging and/or legal aid agency. God bless.

StandingAlone, I do agree with you! But that's what I mean - we (or I anyway, I can't speak for other people) don't need society's view to tell us what to do, we're doing it for love. And that is exactly what seems not to compute with the world at large.

I decide my own moral obligations (though I hope I listen to advice); I expect others to do the same; I do not and would not judge anyone who came to a different conclusion from my own about what her obligations are. I am also baffled by people who, as far as I can tell, owe their ghastly parents nothing except possibly one stiff raised finger... but still feel bound by something, God knows what, to care for them. Baffled, but deeply impressed by a sense of their superior virtue, sometimes; or on the other hand saddened by what seems to have been the systematic destruction then exploitation of their personality.

Something else has just struck me. My oldest brother, my mother's best beloved person in the world, would nod vigorously at your every word. But in his case, I wonder, what's his beef? My mother does ask him, first words to him whenever he rings: "when are you coming to see us?" But she never minds that he never is. She never whines at him, or sighs, or does anything except express a keen interest in his news. And still he feels burdened by her. I accept that that's how he feels. I just don't understand where his particular, personal brand of guilt comes from, because it's not from anything my mother's ever said or done to him, and if it's because he thinks he ought to be doing more for her - well, you could have fooled me.

Now, that is no skin off my nose; I'm perfectly happy to let him be and reel off any required platitudes about how busy he is. No, all right, I'm not happy - but I do it anyway. What troubles me more is that he's an evangelist. I get the impression that my siblings feel that the choice I've made is somehow actively wrong, bad, the opposite of morally correct. That it would be better for my mother if she were made to stand on her own two feet. And what troubles me about that is, that they're handing it down.

My children have a warm, close relationship with both their grannies (my mother is a lot less trouble and a lot nicer to be around of the two, but we'll leave that for now). I would not dream of imposing on them; but they have taken it for granted that supporting me is just what families do, and they call and visit as regularly as their demanding jobs and lives allow. My siblings' children - I have three nephews and a niece, all grown graduates making their way in the world - were never encouraged to spend time with my mother and therefore are not so close to her; though I hope they enjoy keeping in touch with me through calls and Facebook, I'm very fond of them and enjoy my relationship with them. But they are very different people from their parents; they are kind and affectionate young people, well-adjusted and secure in their relationships. So the two nephews who have independent transport have each made the long trek to see my mother at their own suggestion, entirely of their own volition. More recently, the five London-based cousins got together over dinner to discuss looking after Granny if she ever came back to London to visit and stayed in respite care; again, nothing to do with me, they're grown people who organised this amongst themselves. Next thing I know, my quiet, gentle brother - think Michael Palin, if you're familiar with him, aka Mr Nice - is raving down the phone to me about burdening the children (mine too, not just his) with "massive guilt." As if wanting to pop in and have a cup of tea with their grandmother must necessarily be a sign that they felt guilt, rather than something nice to do on a slow, wet Sunday afternoon.

So, what am I saying? I think it's that I feel that my brother's attitude, coming from I know not what experience, is part of the societal problem too. It reminds me of certain attitudes to child-rearing: don't spoil them, don't smother them, don't indulge attention-seeking behaviour, you're making a rod for your own back… And as with child-rearing, this contributes to - it's more than a lack of respect for the job. It's almost a disapproval of the job. As though there is something sentimental, self-indulgent, weak-minded about what stay-at-home parents and care-givers alike are trying to achieve.

Should parents be compensated for caring for their children? Should adults be compensated for caring for their parents? What are these jobs WORTH? So much lip-service is paid to their value to society. Now show me the money, and tell me who's paying.

I really have no concrete information, just some suggestions. Contact your local Office of Aging for the state you live in, also contact any Alzheimer's groups in your area. Churches are sometimes able to help or food banks. Try to save money where you can. I had to quit my caregiving job to stay home with my husband who has Younger Onset Alzheimer's and can no longer drive or work. Now I am back in school (online) to widen my skill set as we cannot live on S.S.Disability and 401K is gone. I understand your dilemma, and we have to be creative in looking for resources...add that to an already long to do list. Best of luck to you!

Same with my husband had cancer,diabetic, heart vailure etc and he had just one leg, he try apply to DADS program for state can pay me, finally not elegible, I care him 24/7 help bath etc, in 5 years i never by cloth,under wear or bra, i need help to DADS program texas is nothing, i am not have money and Pention money my husband not enough more cost that his money.Sometime i thinking do you i must be to be shoplifting????forever program had in USA not helped old people, when they to nursiung home state still must be pay nurse with huge money, why just pay family who care person the state does not want pay?????look like everithing to be politick..........

My heart goes out to all dealing with these life issues. This discussion has prompted such deep emotion. I am grateful to Angel for starting it. As bad as things are for me right now there are those who have it worse and I want to say how much I care about those great caregivers. It helps to be able to share my feelings, thank you for being here to listen and post back. Today was a good day. Mom tripped over a dog bed at my nieces home. I was where I needed to be, by her side and caught her with no problem. It's the first time I've had to 'catch' her, I've gone over it in my head so many times, what I'd do, how i would be careful not to grab too strongly as to possibly brake her frail bones,etc. God was there, it was like we were on a cloud, it was so smooth. I will never forget the expression on her face as she glanced over at me when i strenghtened my hold around her..as if to say..."What are you doing?". She is such a proud woman, she wouldn't even acknowledge that I stopped her from falling on her ass... I was prepared and I was ready...I did good today fellow caregivers. Love to all!

Wow, reading these posts scares me so much. I am also in a desperate case scenario, one step away from being a street person. Is this the future of aging Boomers? Street people? It sounds so melodramatic...but it is a fact of life for me and so many caregivers who have posted here.

My only wish: not to live as long as my parents, who are not well, but are looked after, taken care of and will not know poverty. I will, however, and it chills me.

Yes. I am feeling sorry for myself. I am also scared witless whenever I look into the next 5-10 years.

What if Mom has no money? She never worked and my sister, who has Power of Attorney has not applied for Dad's death benefit.

I found this. Hope it helps others with similar situations.
Little Known Veteran Benefit Provides Tax-Free Pension

The U.S. Department of Veterans Affairs has a little known tax free pension available to help qualified veterans, spouses and their surviving spouses pay for assisted living, home health care or nursing home care. The Non-Service Connected Disability Pension was established in 1952 under Title 38. For veterans or spouses of veterans this pension can be a life line to allow them to age with dignity and peace of mind all the while affording them to receive the care they need and deserve.

A component of this Non-Service Connected Disability Pension is termed "Aid & Attendance". The Aid & Attendance benefit provides for reimbursement of certain qualified, un-reimbursed medical expenses, usually involving long-term care in assisted living communities, in-home care, and in very limited instances independent living communities.

This benefit is currently funded at over $4.3 billion annually.

Aid & Attendance Awards

For 2013, the maximum Aid & Attendance benefit amounts are:

Two Veteran Spouses (Only if both require benefit) $ 2,748 per month
Married Veteran $ 2,054 per month
Single Veteran $ 1,732 per month
Surviving Spouse $ 1,113 per month

These amounts are the maximum awards.

A veteran who is currently receiving Service Connected Disability compensation can still receive the Non-Service Connected Disability Pension with Aid & Attendance as long as the Disability Compensation is less than the Aid & Attendance Benefit. If eligible, the VA will grant the difference up to the maximum allowable under Aid & Attendance. However, if the Disability Compensation is greater than what the applicant is entitled to receive under Aid & Attendance then no more money is available.

Aid & Attendance benefits are paid directly to the applicant by the United States Treasury. Title 38 is a mandated law and must be funded by Congress every year. The benefit typically increases annually based on the Cost of Living Adjustment Index.

What Are The Qualifications for Aid & Attendance Pension Benefits?

In order to be considered, the applicant must be 65 or older/or unemployable.There are four criteria for qualifying for the Aid & Attendance benefit. All of these qualifications must be met to receive the Aid & Attendance benefit:

Criteria One: Military Service

This benefit is only available to veterans or their surviving spouses who meet the following military service history:

An Honorable Discharge from a branch of the U.S. Armed Forces (including Coast Guard, Merchant Marines, WACS, WAVES, WAFS)
At least 90 days of active duty military service
At least 1 day of the 90 must have been during one of the following periods:

World War I 04/16/1917 - 11/11/1918
World War II 12/07/1941 - 12/31/1946
Korea 06/27/1950 - 01/31/1955
Vietnam* 08/05/1964 - 05/07/1975
Persian Gulf War 08/02/1990 - TBD

* For those veterans who served "in country" in Vietnam, the beginning date for qualifying service is 2/28/1961.


Criteria Two: Medical Necessity

Medical Necessity means that the applicant has a medical diagnosis that is creating significant deficits in their ability to perform the Activities of Daily Living (ADL's) which include: bathing, dressing, eating, toileting and getting out of bed or chair.

Criteria Three: Care Cost Compared to Monthly Income

Monthly Income is defined as money that is available to the applicant on a regular monthly basis. If the applicant is married, both incomes must be disclosed. Cost of Care is the cost of qualified monthly medical expenses.

Once the monthly Income and Cost of Care are determined, the Cost of Care should exceed the Monthly Income to receive the maximum benefit.

Many people believe their income is too great to qualify when often that is not the case.

Criteria Four: Liquid Assets

Liquid assets are defined as financial instruments that can easily be converted to cash. Examples of liquid assets may include accounts such as Checking, Saving, IRA's/401k's, CD's, Mutual Funds, Stocks & Bonds etc.

Homes, real property and some items of personal property are considered Fixed Assets and might not be used in this calculation.

How Much Can You Have In Liquid Assets?

Unfortunately, there is no "right" answer. The VA seems to be getting more conservative in its allowance for liquid assets since the passage of the Deficit Reduction Act. Traditionally the VA takes into consideration three items when calculating acceptable amounts of liquid assets:

The total amount of assets
The rate of depletion (how much must be taken out of assets to make up the monthly difference in cost of care)
Longevity based on VA actuarial tables

Many people believe they have too great an asset base to qualify when often that is not the case.


This article is provided Courtesy of US Senior Vets with permission to use only at Agingcare.com. US Senior Vets is a national 501(C)3 non-profit organization dedicated to assisting our nations senior veterans and their surviving spouses. US Senior Vets is not a government agency or part of the department of Veterans Affairs (VA)

ferris-
Tell me more about the forgiveness if not working. In my case I have taken deferments so I do not need to make a payment for 6 months. This can be done a maximum of six times, I'm on the third.

there should be loan forgiveness for unpaid caregivers, not simply unemployed would qualify for forgiveness. That would be too tempting cor many people to stay unemployed and play, while asking for loan forgiveness.

It is called the Student Loan Forgiveness Act of 2012. It only applies to Federal Student Loans and under certain circumstances. Google the act to find out more information.

Thanks Fanci! My Dad served in WWII, Corpsman and Purple Heart recipient. I will look into this today. Semper Fi

It seems the world is an idealist,
somehow it only cost institutions $6,000.00,
to look after parents.

If you tell me, it is that THEY that use our emotions against us,
because it is emotional, it must not be worth anything and
of course while we are caregiving we are saving the states X number of dollars,
reminds me of the time they calculated, if husbands had to pay for what their wives do as mothers for free, they would be paid 30,000 a year, instead of the Zip.

In caring for the elderly, it is a shame that we are not compensated,
should be for it is a job just like any other and unlike any other...
time demanding as well as financially draining...
Should be that the caregiver get half of what sibs think is being divided in the many ways and the other half should be divided in all the ways.

The caregiver actually should be entitled to the inheritance just as a living spouse would be, because the caregiver is actually taking the place of the spouse.

Idealistic life (society) has not caught up with, what the reality of caregiving is.

Also took out student loans to pay for 86 year old's food and medicine,
hoping for a little reprieve, only to be reported falsely to senior abuse...then how come she is still with me? and they have lost all control???

lwen-
Same thing happened with me in court this morning. No more control to unreasonable sibling POA. HOORAY! But, it never should have come to this.