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abudobi Posted December 2013

Caregivers need help financially.

I too am in a what seems like an impossible situation. I moved in to help out my elderly parents. A year later I lost my job, soon after my 84 year old father was diagnosed with cancer. I cared for him 24/7 until his passing six months later. I have now been caring for my mother whom ,with dementia, was very dependent on my father and is now with me. She needs a caregiver on a constant basis. My mother has her money and I have mine. I also have a $55k student loan that is outstanding and constant stress for me. I have cashed out my last 401k to live on. Sallie Mae was kind enough to let me know, with the minimum payments I can make, my total loan will end up being over 100k. That's my future retirement. Currently with no income and my small nest egg slowly dwindling away I find myself in dire straits.
I have no idea what to do while time and money keeps clicking away.....
I know this is a growing problem in our society. We need help...

fancifranci52 Dec 2013
I think that you took on way too much. A baby and a teen, your very needy Mom. You should have asked for help a long time ago. Now that everything is out of control there is nothing you can do. Mom should go into nh for care. You can go see her every day if you want, but you already have too much on your plate. Perhaps, with Mom out of your care, you'll be able to get help for the drug dependence and have someone court appointed to negotiate the financials without compromising your family too much. You may have to get a p/t job to pay it all back, or sell the house you bought with your mom's money and pay it back.
Sorry I don't think I've been very helpful, but it was good that your mother had so much to start with. My folks had nothing but the land.

JessieBelle Dec 2013
Lucy, I think a facility for your mother would be best. There seems to be too many family problems and loose spending of her money. It seems to me that her life would be more calm and stable in a facility.

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Lucystewart Dec 2013
I have a situation where I take care of my mom with alzheimers, the middle child of 5, Jane our family is hugely disfunctional. My dad passed away in deb of 08 and left me POA of everything, during his time of illness he changed his will to exclude one child because of circumstances he was mad about. One brother was staying at mom and dads to help out while dad was recovering from a fall, one he didn't want there but I begged to let him come because for one reason he was homeless and I promised my parents he was drug and alcohol free, because I thought he was. So within the time about July 08 to jan 09 I was helping w moms care while dad in the nh by cooking and cleaning and because I had medical POA taking her to dr appts. Brother hated that I was doing that and turned on me with hatr and violence. Also not feeding mom and cussing and yelling at her for taking her pills too many times or what ever was bugging him. So I and my family couldn't fit into moms house, and the cost to high to build on to our
home , the Brother still living at moms and wouldn't leave, we had a meeting with all kids and they all agreed I could use some of moms money for a down pmt on house we could all fit into.So while I was at work a community mental health councelor contacted me and said by lawshe had to tell me my brother had threatened to kill me! then mom then himself. So that was scary and then one other brother and sister went to pick her up with the pretense they were taking her to dinner and they took her to my sisters house for safty. She stayed there until we could find a satisfactory place. Meanwhile I had been taking prescription pain Meds for about 10 years for back pain and my sister was dealing anything and everything and growing weed with her medical marijuana card. So she started offering me more pills because so was so dependent and she new I had access to moms money so if was taking and buying more and more. Found a perfect house with full apt in basement, used $70,000 of moms money for down. Bout the way we had to remove mom from her house was such a shock I think it drove her into next stages of the disease and we couldn't use the basement for her. I paid my sister while mom stayed there, and paid her friends she hired for help, paid brother to pack and empty house, which he didn't finish.during moms stay at sisters I would go over every day to see her and she would grab my hand and beg me to take her with me...broke my heart and sister was bragging and telling funny story she almost had mom convinced to smoke some pot with her. I was furious! So become more and more addicted and includes shopping I guess to reward myself or whatever I was doing. The reason mom had to live with me on not the other siblings was, the oldest is on ssi disability, and the one dealing to supplimentd her lifestyle, the older brother is the one threatened killing and has huge anger prob and is trying to get on Ssi. He was diagnosed with ms, younger brother was a Lpn mom didn't want to be there with him to take care of her personnel needs and he is a par ting alcoholic, youngest sister is mentally handicapp and not capable of that kind of care for someone. She does hold a job tho in housekeeping in a nh. Mom and I were always very close and she wanted to be with me, but couldn't tell any of her children that so she'd hurt their feelings..because the siblings have never really liked me they don't come to visit mom, they don't call and if they do they fight with her (more so in the beginning cause she can't use the phone ) both sisters have always been extremely jealous of me for a reason I don't know, since we were children, cutting to the chase mom has now been bed ridden for about 30 months the care has gotten extremely hard, she has bouts of constipation and severe dirrea, has has ibs for 40 years. She cannot do anything for herself. Hospice has been with us for about 36 months and raves her care has been outstanding never has skin breakdown, is always clean, I sit with her every night from 8 to 12 and watch tv, read to her, hold hands. Hospice states she would not have lived this long if it weren't for the wonderful care she gets. Oh I forgot to mention she has multiple myoloama as well and her whole left side is restricted and muscles drawn in.
My family has given up everything. I spent all of my 401 k have had no medical have had to pay monthly premiums for medical ins. I got clean and sober with a recovery program have been clean for 3 yes coming in jan. I went through 470,000 of moms money my siblings are seeing me for it. I lost guardian ship of course and have asked for $7000 a months month for her care because the facilities in this are in skilled nursing is $8000 a month. That would help me pay back her estate which I agree I owe. Went to court and the judge will only give me $4500 a month and siblings are going through the steps to bring legal charges against me. We have adopted a 2 year old granddaughter since birth to her mentally challenged mother and we have custody of a 14 yr old grandson. So with my mother not being gone yet and the monthly care I give her is adding up for repayment. How will the amount be determined that I owe back if she is not gone yet, and it looks like they are not allowing me any credit for my part of inheritance which should be credited. And why couldn't my sisters have helped me get sober rather then keep lining their pockets, I forgot to mention the one sister was getting pill rx from her dr and selling them to me for street prices. So everything is a mess....oh and the siblings stole all kinds of things from parents house but they are not being, held responsible for. A large coin collection antiques, and not sure what else my brother took while packing the house. So I know I totally messed up but I think I should be allowed to be paid what it would have cost to put mom someplace cause she has gotten totally one on one great care. What does everyone think?

Iwentanon Dec 2013
well...???

gladimhere Dec 2013
lwen,
I don't know how in the world they would deal with that. Maybe some kind of a new disability?

Iwentanon Dec 2013
I am already disabled, since 2001, but went to school during this time...

gladimhere Dec 2013
CM, you are so right! They are to spend the money as they know the person would have! For many years my mom has purchased collectibles for grandchildren. The last three years mom has asked me to help her get something for 6 grandchildren. I then remind her of what she has done for many years and ask if she would like to do the same. Thank goodness she says "yes, that is a wonderful idea!". Sure makes it easy! But sib that controls the money thinks it should stop. Better luck next time!

Countrymouse Dec 2013
Ff, grrrr - when will they get it in to their heads that it's their JOB to do exactly, as far as possible, what the person they act for would have done if she were still able to? They're so self-righteous about their economic skills - and getting it SO WRONG!!!

fancifranci52 Dec 2013
kthln3 So sorry to hear it gets no better. This AM I got a nasty gram from younger sister who controls the money saying that she was not gong to let Mom 'waste' her money on Christmas presents. Yet she will not go to the bother of getting Dad's survivor benefits for Mom, his insurance and a lot of other stuff that I can't even put into words. Is it always this way with family?

gladimhere Dec 2013
Student loan forgiveness does not have relief for family caregivers. I contacted my servicer, I do have federal loans, and the only option is if I become disabled. Bring on the PTSD!

kthln3 Dec 2013
StandingAlone, my husband and I lost our home in 2010 after the financial meltdown in the country left my husband "downsized" out of a lucrative job. We were able to sell our home, thankfully, and narrowly avoided foreclosure.

If this scenario were to play out in present day the banks would be more accommodating; back then they were ruthless and didn't much care if we were on the street. Thank you, Citibank!!!

We rented a house after selling the one we owned, then moved into my parents' home in March 2012 when it became apparent that dad, 93, could not function without full time live-in help. So we have been here since.

Mom is in a NH. If dad should pass while mom is still in NH we will be thrown out of the house. I have no idea where we will go. Probably a shelter. This is a continual worry that I've learned I simply have to live with. Yeah, there are days that I wish I were dead. Just like a million other people who are in similar situations. I don't dwell on it; I can't. I just Get On With It. Life has a way of still going forward even when you don't want to.

kthln3 Dec 2013
Already had two breakdowns...both of them I was hospitalized; life still goes on. Care was patched together w/Sister & Husband, both who were extremely put out that I had "forced" them into this "extremely inconvenient setup" (my sister's words) for the 4-5 days each time I was incapacitated. Did it help me? Yes; I got my medications readjusted, new therapist...but when one suffers from major depression and main family members don't comprehend what that means--or simply don't want to comprehend its implications--life simply goes on.

By the way: Sister is an RN; doesn't "believe" in antidepressants although they have helped my dad and I enormously (he is on them without her knowledge). Husband suffers himself from depression but since he was raised that you are "wacko, cuckoo, nuts", etc., if you suffer from mental illness he is in deep denial.

What can I say? Life simply trots on, some days good, some days bad. Everyone adjusts. No life-changing epiphanies occurred with any of the people in my life as I'd hoped; perhaps it will wake up others. That would be nice.

fancifranci52 Dec 2013
Never mind being hungry, stressed to the max and broke. What happens when you, the caregiver, buckles under the load and has a physical or emotional breakdown? /What happens to our parent or other family member under care? If the principle care giver ends up in the hospital, what happens to the rest of the family. I was struggling last week, had horrible headaches, tightness in the chest, low energy and depression. It took me an entire week to think of taking my own BP. Yup it was up.....and I normally have slightly low BP. A few years ago I had medically induced IPA ( mini strokes) and my BP soared. I remember now that I felt much like how I felt last week. If I didn't realize what was going on I could have had a full blown stroke and the what would happen with my Mom. There are waiting lists for nursing home care...if you can afford them.

StandingAlone Dec 2013
kthin, I feel your pain. I understand being in a position where you only eat one meal a day...and sometimes no meals a day. I've lost over 65 lbs in the last year due to hardship after caring for my mom. Why did you lose your home? I'm just curious, you don't have to talk about it if it makes you uncomfortable. I am sorry about that, I know what a god awful feeling that must be. My family has been brought very low as well. We do have a roof, but that's about it. I just keep praying that tomorrow will be a better day. It's about all I can do at this point. Here's hoping for both of us...

Iwentanon Dec 2013
Too bad, well...

Iwentanon Dec 2013
The student loan forgiveness 2012, does not help people with private bank student loans.

kthln3 Dec 2013
I am in the same situation. Husband & I live in my dad's home, care for him, visit mom who is in a nearby nursing home.

We live hand to mouth. Although I'm "prohibited" from doing so, every 3 months or so when things are really desperate food wise I ask dad for help and he will give me about $100 to buy groceries.

I've been reprimanded for this by Sister Dear AND my husband, who, if it weren't for my family, would have our daughter, myself and him living god knows where. Probably a shelter. We lost our home.

I eat one meal a day often; keep this from my daughter as best as I can; inwardly seethe with anger at Sister Dear and Hubby Sweetness (NOT on both of those people!) and get up every day and Cope.

It's amazing how one does cope even when life is waaaaaay less worth living.

Sorry, I'm venting. Having a terrible day and it's only 8:23 am.

theresa2 Dec 2013
No medicare plan pays for long term care. Nursing home exp will be paid for a short period..60 days after release from hospital. That is all. After that is either private pay, long term care insurance policy or medicaid. And most long term care policies do not pay family caregivers..only licensed hhc.

StandingAlone Dec 2013
"I am going to fight this (getting paid for caregiving and the unwritten laws of golden children) with all I have got, I hope to set a presidence, there is no excuse why this (caregiving without pay) should be allowed or tolerated, at our own expense."

Amen.

Iwentanon Dec 2013
medicaid pays for "cash and counseling" a program
that allows family or friends to be paid for being a caregiver.

i guess I want to know what medicare pays for? Ours pays for BCBS long term care I think part "F" does anybody know anything about this?

Yes I feel as others are right when they state, "we have jumped the compass of morality right, to care for our elderly, but it us a job and they did pick us, if even by default, because we were always there. And about others being the gifted children, they are and we all know, that a certain unreality has set in there, similarly children fantasize about "the golden" runaway, unsupportive parent, as the one that truly loves them, but dementia doesn't look for the truth, it only looks looks for the ritual in thinking.
These "golden" children make life hell
for the one's left behind doing the caregiving
as if they are truly Gods, and because there is a "clause
of domesticity' (civil law, not criminal law?),
they yield their powers like a vendetta, unchecked and unscathed.

And even if their powers are stripped or they are incompetent, you will find that the court errs on the side (their side, golden children) of caution.

Yes there is a wide prejudice against family caregivers, they do give it no merit,
their already guilty minds could not handle anymore " " so if you give it no merit
then the caregiver isn't really doing anything, a vicious cycle of ABUSE.
Anybody ever see those wheels of power and abuse? Well there is one also for "Abuse in Later Life Wheel" transfer, taking your children away from you and substitute putting in your elderly person in a nursing home, and the rest of the wheel applies, to caregivers, except they say, you chose it and turn it all back onto YOU.

Family caregivers know they are doing "the right thing", but "the right thing" doesn't pay the food, utility bills, put money into your 401K, or pay off your student loans and the golden children stand smug, going ha!ha!

There is a relationship between my friend and I
but I am not his wife and the 86 year old is not my MI,
however the rest all applies and "no one ever asked you, all we asked you was to give her, her medication, you obviously have taken over without out permission"
a convenient misinterpretation on their part (the golden children) because there is a weight consideration and aside effect(diarrhea) for Exelon, so monitoring food intake was tacked on, and then there was the adjustment of BP medicine from 30 to 60 mgs. that required daily readings of BP before making the switch to 60mgs permanently and the list goes on. I feel they (the golden children) are responsible and benefited, by having me be the informal caregiver, so why not pay me???, there mother is doing well considering...

I am going to fight this (getting paid for caregiving and the unwritten laws of golden children) with all I have got, I hope to set a presidence, there is no excuse why this (caregiving without pay) should be allowed or tolerated, at our own expense.

Iwentanon Dec 2013
isn't it a crying shame that caregiverS should be dragged through court,
like caregiving isn't enough of a strain, I hope it didn't mean that a guardian at litem was appointed, you are right when you say, that it shouldn't have come to this, but the laws allow this...to continue to happen, their motive GREED.

gladimhere Dec 2013
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.

Iwentanon Dec 2013
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???

DaughterInNY Dec 2013
Thanks Fanci! My Dad served in WWII, Corpsman and Purple Heart recipient. I will look into this today. Semper Fi

Labs4me Dec 2013
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.

gladimhere Dec 2013
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.

fancifranci52 Dec 2013
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)

fancifranci52 Dec 2013
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.

kthln3 Dec 2013
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.

Cinderella Dec 2013
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!

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