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Is there federal assistance for caregivers?

26 answers | Last updated: Nov 02, 2015

Is there federal assistance for caregivers living with a hosipice patient? My grandmother was just diagnosed in-home hospice. She has many health problems and is 86. She does not feed herself, go to the restroom alone, can not walk, does not bathe herself, etc. She lives with my aunt and uncle and can never be left alone. A day-time sitter is paid for out of my grandmother's money. A nurse has been prescribed to come once a week and check my grandmother's health (check for infection, etc.). Is there any way to gain financial asistance for caregivers, including cost of the sitter, Ensures, Depends, etc.?


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87% helpful
Steve Weisman answered...

There are some programs that may be able to offer some help for your family.

Medicare provides some payments for hospice carethat may apply in this situation. In addition, See also:
Older Family Members Don't Have Enough Money? New Tool Helps You Find Financial Benefits
some states are now providing coverage for some of these home servies through Medicaid. You should contact your grandmother's Medicare insurance provider and her state Medicaid agency to see if she qualifies.

You also should go to the website www.benefitscheckup.org. This exceptionally helpful website, created by the National Council on Aging, provides a simple way for you to identify, local, state and federal programs for which your grandmother may be eligible. The website has an online questionnaire that takes about fifteen minutes to complete. When you finish the questionnaire, the site will provide you with a list of programs that apply to your grandmother's needs. The information is confidential and you do not need to provide your name or other personal identification information.


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AnitaP answered...

There is also Veteran's benefits. If she or her late, or living spouse served during war-time in any branch of the military, she could qualify for assistance for a caregiver.


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/people/70173 answered...

This is a common problem, as the previous expert has stated. There is another option available that many people may not know about. Your Life Insurance Policy can be a valuable asset to you at this time.

In many cases, people find themselves struggling to pay for the appropriate care. If you have a life insurance policy, this does not have to be the case for you. There are companies that do a complete evaluation of your life insurance policy to let you know of all your options and will also determine the value or purchasable price for this asset. In many cases, as long as you are working with a Funder, this is no cost to you. Your policy is property that you own, just like your car or your house. You make payments to car and you make payments to your life insurance policy, making it available for a cash settlement.

If you feel you would like to research this option, I am an expert in this field and would be more than happy to assist you in this important financial decision.

Kevin Swan




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/people/27033 answered...

These are all viable options for helping caregivers financially. Keep in mind that for VA benefits, state and/or federal assistance, you have to be close to destitute to qualify for help. Any money/property transferred within 3 years of the person being cared for can cause benefits to be denied. Unfortunately, for the sandwich generation, we are losing everything caring for our parents and grandparents and before one qualifies for assistance, they also, have to lose nearly everything. I've been researching and speaking with VA, state and federal for 3 years, and cannot get ANY assistance for my 89 year old Grandmom (veteran of WWII and retired city employee). I care for her 24/7 and do not receive any finacial help even though I was laid off and have exhausted my own savings. Unless you are poor or lie, the average person, who has worked hard all their life, DOES NOT QUALIFY FOR ANY ASSISTANCE. All the propaganda out their is for show. Dept. for the Aging is useless. By the time the paperwork is reviewed and someone gets back to you, and IF you meet the guidelines and pay a fee for their help....you're already dead and buried. This is the reality folks, so plan ahead.


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carolynGA answered...

9 years ago I gave up my solo life to move to another state to become the caregiver to my Mom who had AD. At that time I had 11 brothers and sisters and dozens of grown nieces and nephews nearby and out of state but within a 12-hr drive. I was in my 50's so I knew what I was getting into but I sincerely expected to get physical help and occasional financial support from some of these people. BUT HARDLY ANY HELP EVER CAME. There are no programs in her state that pays caregivers or give then any kind of benefit to help cover their expenses...not to mention any real compensation. My mother died during this summer and I was left flat broke....and with not much income coming in from my self-employment, home-based business. I am destitute. However, I think my siblings have agreed to donate the family home to me..as a way of compensating me for 9 years of sacrifice. But in the meantime, I am now 60+ but not old enough to draw soc. sec. until sometime next year. I am glad I made the sacrifice to be with Mom to the end - as I had promised her when I moved in. When you consider all the money family caregivers save the system, you'd think they'd be happy to throw them a bone. But there is nothing. IF ANYONE OUT THERE IS INTERESTED IN STARTING A PETITION TO GET MANDATORY FED AND STATE BENEFITS FOR CAREGIVERS....I'LL BE THE FIRST TO SIGN UP. Carrying this physical and emotional burden mostly on my own for 9 years has just about broke me....but I wouldn't trade those final years with Mom for any amount of money.


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azk86314 answered...

Man i see i'm not alone trying 2 find help with getting extra money for my mom.I have called SSI they told me that with my mom ss the differents would be like 30. well that won't help her pay 4 assited living place.And trying 2 get my dad's military records is like pulling teeth.E1 i talk with said they can't help me go figure.i sent paper 2 archives in st lous this pasted fri i get another paper from them.asking for more stuff witch i have no clue am the baby of the family.plus my mom can't remember much my mom had dr appt this am i will see if her dr knows of any other programs.getting upset can't find her more help.this state trying 2 cut alot of stuff that helps ltc n medcaid.I have e-mail 1 of the congressman haven't heard anything bk yet probely won't MAN I NEED SOME HELP don't know what else 2 do :0(


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blue_nc answered...

I was a nurse in a nursing home and believe me those nursing homes sure get payed very well each month. I have always said if a family member is willing too take care of there mom or dad at home it would sure be less money too pay them because a basic nursing home starts at 3,000.00 a month and a more nicer home can coast 5,000.00 and up and all they get is three meals a bed and two times a week a bath and i think it hasent changed on there medications. It covers six prescriptions a month and if the doctor gives them more prescriptions that goes over the six the family well be paying for them. I think if our state and govnerment would pay a family member at least 3,00.00 too 4,00.00 a month that is less money than putting your mom or any family member in a nursing home. I think if every one would start calling and writing there congress in there stare and also the president this could be put into a law in every state.


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MYMOMSLOVE answered...

carolynGA, I was so moved by your story I still have tears as I write. I know your story I'm living it now with my mom who will be 90 in May. She asked me to promise she die at home she now has alzheimer and I intend to keep her promise. I have 4 brothers who don't feel the same however they are putting some money in a family account so I can have a caregiver come in 3 times a week. I think in order to make things change with the state and federal govt. it will only work in NUMBERS. We are a big group of caregivers and I do believe we can make a change so for those of you on this site and reading this please let me know are you in on making a change. If so then let's figure out what it takes to do so and do it. Talking about it doesn't change things action does. Non-violent action does.....


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Aracasil answered...

For years, as I struggled raising three kids, one with MD, one with ADHD, people told me that they were sure the government helped caretaker family members who had no viable options but to be sole 24/7 caregivers, and sacrifice their income as a result. I see the state of affairs has not changed since the 80's. By the way, I now am 50 yrs old, laid off since 2008, destitute and homeless, largely due to medical debt, a 15 yr hole in my 'career', and the resultant destroyed credit record-all of which has to be the explanation for few responses to resumes, applications, and job search efforts that I have poured the last of my meager resources into. Whoever thinks healthcare should be for profit-never had to owe more than they were capable of earning. I would be interested in some real efforts to change this devastating system of sickness we have.


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annadult answered...

I agree with anonymous--Council on Aging is one useless organization. Maybe the Meals on Wheels is worthwhile, but the rest of it? Totally a waste of energy and time.Why do I feel this way? I went to them in my town to get information about a sitter for my mother. While there, the woman said it would be a minimum of 4 hours,no nights or weekends,and $4 an hr. I thought, wow, I could swing $4 an hour and agreed for them to come to my house and be assessed. This took an hour or so. At the end of the assessment,she makes the statement that it's $8-$10 an hr. I asked what happened to the previously mentioned $4 and she claimed she never said that. Ok, I thought,sorry to have wasted each other's time,see you later,alligator.

A few months later, at an Alzheimer's support group meeting, who should the guest speaker be but the director of 5- county Coucils on Aging. Since I already thought this organization was a waste of time for anyone who wasn't exceptionally poor, I almost missed it when she said this: "All services provided by the Council on Aging are on a DONATION only basis."

You can bet I perked up instantly,on hearing this. Not only had that woman quoted me two different amounts to be paid, but she out and out lied by omission! I specifically asked the speaker if this 'donation' included sitters and she said it did. For anyone who knows the definition of 'donation' and really needed a sitter, this is a slap in the face right around the time when you start to realize that there really is no help. "Because you can't do it alone," is not a justification or good enough reason to actually get help from anywhere. Simply put, no one cares that you have to quit your job,that you will become homeless along with the person you are caring for,and have no money...at least for those 60 months until you become eligible for medicaid. No one. This is the reality of old sick people and their caregivers.

And don't get me started on the nursing home business in this country...much less 'nursing' being done, and more like sending someone there to die even earlier. There's no one even to point the blame,because it's all of us,myself included. WE are THE PEOPLE.

I am so bummed out now. Even more so knowing that all my ranting and raving do nothing for no one.


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misst1954 answered...

well i got a good one for you my dad is getting paid by va for his ex wife my dad is 88 she is 49 golddigger to be his care giver he has a head injury and he has bought her a new car and god knows how much money i know for fact she got 1500 in 3 days its my understanding there suppose to be a spouse not a ex spouse to get pd and know one will help me


86% helpful
DEPKON answered...

There is a Federal Family Caregiver Support Program that may be able to reimburse your aunt or uncle for some of the expenses being incurred to care for your relative. This Program is frequently run through the local Area Agency on Aging. I supervise this Program in Erie County, Pennsylvania. Many times the Caregivers that we help are just thankful for reimbursement for Respite services so they can go out of the house together for a few hours without the person they are caring for. Household income is considered, but it is more generous than most programs out there. By this, I mean that the earned income amount is higher than a typical "low income" program permits. This Program can also provide reimbursement for home modifications and assistive devices that may be required for your loved one. If you do not have success finding your local Area Agency on Aging, contact any social services agency that you are familiar with and I am sure they will be able to guide you appropriately. I wish you and your family much success in caring for your loved one. It can be a very challenging time time. (If you can see my email when you read this, please feel free to email me and I can get you the phone number for the local Area Agency on Aging.


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jjcc answered...

I have been caring for my spouse for several years now as the main caregiver. I left my job to do this. As far as I can tell, there really are no programs out there to help people who have worked all their lives. I applied for VA pension for my spouse and he was deemed eligible. A year later we recieved notice that he became ineligible 6mos into this pension and now they want their money back! It seems to me all these programs start off telling people they are eligible and once the money has been paid, they want it all back. I will not apply to any more of these programs because as far as I'm concerned they are all the same and I have enough stress in my life, then to have to deal with the government. They give you money and then want it back. It takes all these government programs so long to process anything that by the time they tell you that your eligibility has changed, they've already paid you for 6mos to a year. Social Security has nothing for caregivers and with the rest, unless you are destitude and own nothing, these programs are of no help. We have a house we are paying a mortgage on and are living on disability and a very small pension. I can't afford medical insurance for myself, but I'm grateful my spouse can get medical care through VA and also has Medicare. That is the extent of "help" we are able to get. I find it sickening that family caregivers are basically invisible in all of these "safety net" government programs.


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God Bless You All answered...

I can relate to most of what everyone has commented to date...cared for 82.5 year old dear Dad w/Parkinson's & CHF. Learned a lot! Worked part time for 5 years so as to be helpful to him commuting 400 miles roundtrip 2 times a month and when he broke his hip, 9 weeks in a row...this has been going on now for 8 years....thankfully, I did keep that part-time job...and now I find myself running the gauntlet with the VA...he was approved for an Aid and Attendance pension, then they needed more info...1 1/2 years later, the latest letter threatens to take it all away and he would owe them...I have had to find the patience of Jobe inside me to see this through...the mountains of paperwork, the details, the medical records (3rd time to submit them, they seem to ignore them)....anyway, what I want to share is this: IF you have a disabled veteran who served during war time (or a widow of a veteran)...and they are unable to care for themselves, the caregiver CAN get paid to care for them through the housebound OR Aid and Attendance benefit. The A&A pays more. You have to keep meticulous records...research on line, even at the VA site, and they'll explain how the calculations work. It is worth the time and effort to apply, and then don't give up...each year, you have to fill out another form itemizing the income, and the expenses (medical expenses AND caregiver fees REDUCES income, so you might not think you qualify but you can!)...ONCE you get started using the pension to pay for care for the veteran, you will have no problem qualifying for the pension thereafter, (because you are spending the pension plus some more out of pocket to pay for the caretakers - and yes that means you can get paid to care for your veteran parent or spouse) but YES you will have to jump through hoops each year...So, right now, we use my Dad's SSI to pay my brother to take care of my Dad...he is there 24/7, however, we use the pension money to pay for other carers to come into the home to give my brother a break...this is working out for now due to my Dad's manageable condition...and my Dad loves being in his home and my brother has a place, too as of course my Dad cannot be alone. So, don't give up...me...., I have cared for my Dad for no pay all these years, but remember, I have maintained an part-time job..God bless all of you wonderful loving children and spouses, caring for people you love....DO make the effort to work with the VA; and utilize the FREE assistance that is offered to veterans and their families to help file the paperwork....AND be patient...I had to wait 7 months to hear back from them this time, just to be again asked for more information, much of which they already had...that is the patience part...it will take me 60 hours to gather all the info (not to mention commutes to talk to doctors, get more letters, medical records, carer statements, etc.,) but when I have finally sent it all off yet again...I will feel like I made the effort for my dear Dad and for him it is all worth it! One final note: It is obvious the health care system in this country is corrupted and rigged...otherwise, there would already be plans easily accessible for people to be trained to then be able to take care of their loved one in their homes and be paid a living wage to do it AS it is MUCH cheaper to keep a person in their home (in most instances) than to put them in a nursing home. They have a better quality of life in most instances and all would work well for everyone...but NO, the for profit model comes first...I don't have a solution...just a comment on it from the front lines...


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Lovemydaddy answered...

There are attorneys that specialize in doing all the paperwork to file for the A&A benefits through the Federal Government. Worth the money to have it done right the first time and start the assistance.


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Mrs Gillis answered...

I have been reading everyones' problems with the health care for their loved ones. I found it very helpful. I've been struggling with VA A&A for a year and half now. Hopefully, it is on its down slope. My husband is 86 and very sick, I have to bring him home this Oct.can't get help where I live. I've tried taking care of him before and it was hard then. The nursing homes are too expensive and he doesn't qualify for Medicade. Unless you have no money what so ever, if you do the government wants it all. I'm 22 years younger than my husband and I'm not ready to give up yet. God doesn't give us more than we can handle, but sometimes it sure feels like there isn't a light at the end of that tunnel. God Bless all that are in same situation one way or another.


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tryingtofigureout answered...

I recently started caring for my Mother. She is 83, mild dementia, is unable to walk on her own w/o assistance and a walker due to fracturing her femur and tibia in August. She can no longer feed herself or take care of bathroom responsibilities on her own (toilet and bathing). She was in a rehabilitation home for the provided Medicare timeframe and then went into self-pay mode to the tune of $6k a month. Another family member was taking care of the financial responsibilities at the time and when it came time to apply for medicaid we found out she was in a financial mess due to mismanagement. My father served during WWII in the Navy but no one has ever requested VA benefits. I have his paperwork for discharge, etc. Mom's Social Security is not a lot. Her home is paid for and we rent it out to someone so she has that added income but I ended up moving her in with me and I need to find resources as the amount of time and energy it takes has made it clear to me that holding any sort of job is going to be an impossibility. Any recommendations? Reading the information above makes me feel like any path I take will lead down an unfruitful road.


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katfletch answered...

It is a long road but an adventure! I have just submitted Dad's VA Aid and Attendance application and it took several months to get to this point. My advice is as follows: (1) ask yourself what's more important- dad's care or your inheritance? If you answer your inheritance, shame on you and report yourself to the elder abuse authority. If it's dad's care, spend the money wisely for the best care you can get him. I quit my 6-digit salary job and moved home to help him out nearly four years ago. I didn't quit realize at the time it would become my new full-time job and quite an education.

(2) Get a POA and Health Directive set up. I dove into all of his finances (including credit cards, insurances, social security, pensions, and taxes) to learn all that I could about them. I cancelled expenses he didn't really use or need (credit cards, magazine subscriptions, etc.)

(3) Learn about VA benefits, facilities, and services first-hand. Don't just read about them online...go down to the local facility. I enrolled him in the VA's Day Respite program (dad goes 3 days a week). I also got Dad signed up for the VA respite care program in which he stays one week, up to four times each year. I shared my caregiving burdens with other caregivers at the VA and got to know all the key players very well, especially the VA Social Worker.

(4) Get help before you mentally and physically lose it. When the rest of the time became too much for me to do alone, I hired caregivers through a reputable agency. Through that agency, I discovered the VA would pay for 6 hours every other week (it must be an agency in which the VA approves and works) for us.

(5) Find the VA Advocate in your area (ours works in a Financial Company). This person's services are free! This person can assist you in getting dad's assets in the right place to get the VA's A&A benefit. In our case, I also had to get a lawyer (specializing in Elder Law with knowledge of the VA and Medicare) to set up an irrevocable trust for Dad's house (to protect it from Medicare and the VA coming for reimbursement after Dad dies). I found the lawyer by going to a City Counsel on Aging board member.

(6) Follow their instructions and advice. If you're not sure about something, ask again. If something sounds "wrong," trust your gut and find another professional. We did have to spend assets to get within the "correct" income-to-health care-debt ratio--for us it was 5% more on caregiving/healthcare each month than dad's social security and pensions bring in. Remember that cashing in IRAs/bonds/etc. have income tax implications so plan accordingly.

(7) Be wise in how you spend those "extra" resources. I bought us a reliable car, a new safety/security screen door, did some "seniorizing" on the house (the VA provided ramps, rails, and bars) like remove carpeting and refinished the floors (to avoid tripping hazards), bought dad and electric razor and electric toothbrush, etc. I also did some landscaping work as dad loves the flowers and the birds that visit the feeders. We got him a bigger television as he loves to watch but his vision is going. We had to replace the water heater and the furnace (both nearly 50 years old) which in turn required a new electric panel to support them--all for dad's benefit. (We also were selected as a Rebuilding Together recipient through our county which helped tremendously by making dad's house safe.) The attorney was quite expensive, too.

(8) Enjoy your time with dad. Sadly it will be gone too soon and all you will have are memories and the satisfaction of knowing you did the very best you could for your daddy.

Please know that I am NOT a lawyer, VA specialist, or financial wizard. I am just a loving daughter with no income, an idiot, nowhere-to-be-found brother, and three small dogs. :)


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ilveuman answered...

I agree with take care of parent Spend the money, we have spent all of my moms on her at a facility at the tune of 6k a month with half axx care, crappy meals, she looks like heck and over sedated every time I see her, Min wage help standing around talking about there plans for days off. As earlier mention in above comment Its all the money for the nursing homes, FOR PROFIT, Medicaid will pay these exorbitant fees but don't want to pay a family member to watch without a bunch of bull crap and many months. We self paid some agencies promoted on the A list only to have the help Steal, lie, not show up. From a very frustrated adult child, preparing to take my mom back out of a nursing home and do it again myself. Leave it to God hands. And hope the plan I have go accordingly. With daytime help at the church so I can keep my day job. Bless all . And Definitely need as a lot have stated a petition going on paying home caretakers, family caretakers, It only makes sense . And the gov complaining spending too much money. I don't even make half of what a nursing home charges. God Bless


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Mutti's love answered...

While browsing for an adult day care center I could afford I found your site. Its nice to hear that I'm not alone, but yet I am. My mother is 90, she has fallen twice and recovered, a miracle in itself. She suffers from demechia which is more distructive than her broken arm and fractured pelvis, which have now healed. My first visit ever in the rehab center "nursing home" was sickening. I made a promise then, that once out of here, she would live with me. The cost for nursing home care is insane. The care is minimal and in some cases with my mothers broken right hand, seldom helping her with her meals. She lost 4 pounds the first week, so the game plan had to change. Two visits a day, one by me and the other with my son (30), no excuses. As soon as possible when she improved it was getting up with the social worker to see when she would be discharged. Boy, they hate to see someone leave and try what they can to get the maximum days covered under Medicare. That was two years ago and since I don't regret one day to take her home. I still manage to work a full time job, but only with the help of my son working rotating shift work. His dedication to his grandmother is so special since she had always been their for him, since I was a single parent raising him. Money is tight, but we manage ok. Money can't buy everything but our time with my mother is everything. I thank God everyday that he has brought my mom and son into my life. Be thankful each day, and count your blessing in all the things that you experience. Especially when tragedy strikes suddenly. I lost my dad @ 72, brother @ 46, another brother @ 54, all within 6 years.


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annies52 answered...

I don't know of any federal funding but, if your loved one has medicare or Medicaid, you can get paid to take care of them through home health care agencies as long as you aren't a spouse, my fiancée has done it for me for the last three years, all he had to do is get cpr and first aid certified which took 2 hours and he got paid for that too, where we lived he started out at 9.50 an hour now he makes 12.98 an hour. Its a little bit of a process, a nurse has to come out and do an assessment, then the patients doctor has to sign it and once the approval comes in from Medicaid, you get your hours and start working, it usually takes 2 weeks to get through the process but its well worth it and its for any age, does not have to be senior citizen as I am 52. Hope this helps!


sunnysouth answered...

The answers, on here, that tell people to contact their Council on Aging are amusing to me, since our local one constantly has a 'waiting list' that never seems to get down to where you have entered your loved one's name. You have to muddle through the best you can to try and pay people to help you out. COA acts like they wished you had never even contacted them, and some of them are rude and certainly not the sensitive people you would think would work well with seniors. They even told my mom to stop calling. AARP is no better - they give out incorrect information and unless you live in a large city, most services are not available at all.


Forever caring answered...

There's not much out there, really, and we've all come to know we're pretty much on our own. Here's a petition to put the question to someone who might be able to do something about it.

Follow the link, and sign the petition. And, pass the link along to others who know what we're all going through.



Jen P answered...

Hi, My husband was diagnosed with Pancreatic Ca. He is 41 and we have a 7 & 9 year old. My husband works in computers and is able to work from home and his boss is supportive of the times / days he needs to take off. I however have stopped working to take care of the house, the kids, and him. With new medical expenses and travel expenses and not having my salary is making things tight. As someone posted earlier, you have to be practically destitute to apply for any assistance I have found. We are fortunate that my husband made sure we had money put aside, but that is taking a hit. Some of his meds aren't covered by insurance and some are super expensive even after covered. Still looking for help or ways to supplement, even a little, our money.


ChrisUp answered...

I'm comforted by reading the other posts. I'm caring for my 45 yr old husband who has secondary progressive MS and needs help dressing, bathing, preparing food and getting around our apt. He has many medical appts as well. I quit working to help him after he fell and spent hours on the floor while I was at work. He's got such a great attitude and outlook and I love helping him but we're struggling financially with just SSD to support us. Since he's eligible for Medicare he can't get Medicaid which could pay me to be his caregiver. With more and more people aging and needing care it would make sense to pay home caregivers who do more than a nursing home ever could. I pray that I'll be able to keep my husband home with me as his MS worsens and that we'll be able to keep paying our bills that we struggle with each month. Thanks for your stories. It's good to know I'm not alone.


Cindeelou answered...

Attention Caregivers.... I spent 3 1/2 years taking care of my mother, she had Dementia, Alzheimer's, and Pyschosis...seemed to be a danger to herself and others.... I would do it all again, God rest her soul... But let me tell you the problem I ran into.. I broke my back in 2000....my ex husband chocked me in 2002 and in 2014 started having severe problems from my neck injury...to the point I had tingling and numbness and would go to pick something up and just drop it... So the fact that pulling and tugging on my Mom for all that time made my problems worse, but you've gotta do it... It's your Mother..!!! Well I went to file for disability, for the 3rd time, and they refused me because the years I took care of her I was not paying into the system....so they call it a Tech. Denial.....but it didn't matter all the years I had paid in the past....what sence does that make.... So now I cannot get any help for myself, that I paid for all these years....so now that I cannot work, I can only get my retirement. It's only going to get worse with the cost of nursing homes and the strict laws that they have on the property ownership, and the years that it has to be transferred is steady increasing Our system is so messed up, no help for the needy, or caregivers....but you let some lowlife walk in...that has never even held a job, that person can get everything...not to mention the girls that have 2,3,4...kids, that has no idea what birth control is.... Where is the help for the Caregivers that gave up their life for their parent's...and now are broke...and can't get any assistance for themselves.... I have thought going to the State Sentors Office, Congressman's Office and would even go to Wash. DC.... We need to be heard on this matter.... Like I said it's only going to get worse... And with unemployment like it is....who is going to have the number of "quaters" needed to get disability.... I will sign paperwork needed,..