How do caregivers give up everything and make it financially?

Gracie, I believe my father was on hospice for 2 or 3 years. It was my understanding, back then, that they did not have to be at death's door, in order to be on hospice, but I don't know where it begins.

Jave, I think all we can do is have faith. I don't know how any of it will turn out... will we be able to continuing caring for her at home... or how about when my mother is gone, and I will have to find work again, older than I am now... and when it's my time, will anyone care for me (I have two sons, no daughters)... I keep hoping the cloud will clear and I will be able to find a way to earn money from home..

Caregiving is enormously difficult for all the reasons you mentioned and more. I honestly do not know how many people make it as it can ruin you and your family financially, mentally and emotionally. I truly believe it leaves scars in everyone who is involved or lives in the same house where the caregiving takes place.

Personally I was ill first and on disability and my parents sold my home and moved my child and I into their house. When they became ill I felt like I owed it to them to care for them since they were there for me when I needed it. Since I was on disability and home, my siblings just let me handle everything as they both worked.

I do look at the situation now and think about how many years I have lost out financially and paid nothing more into Social Security and wonder how I am going to live out my old age with no pension and Social Security so low I could not even rent an apartment on it. It is depressing and horribly frightening that I have given my life to caring for them and yet I do not know how I will live my last years out.

What is worse is that the President and Congress are trying to change the way people receive increases in their Social Security. If they pass their plan of "Chained CPI" everyone will lose money each and every year and you lose more the older you get.....when you will need it most! For those people like my mother who receive $1,100 a month that is a crushing blow. Her little increase of maybe $20 a month would be cut each and every year, while her expenses have risen about 200% over the past several years.

We love our parents and want to provide the best care we can until they die but it is taking an extreme toll on us all.

OMG Wnydie, I feel for you and have been thinking about my own situation. Currently I get early retirement of 864.00 a month and wondering how I am gonna survive when I have to pay for medicare. I just keep trying to think that something good is got to happen. That's the only way that I can keep on!

My mother is now over 90; I have no siblings nor relatives nearby, and I have been camping out at her house looking after her now for almost 2 years.

Up until today since last August, I had a very helpful boyfriend, but his problem turned out to be "thinking" he wanted a relationship with me when he actually doesn't. Long story, but he, and his solutions to my dilemmas are now no longer in the picture. I am so not surprised.

This task is mammoth and totally without reward. Yeah, maybe on some spiritual level that will be hard to realize when you are on the street with a sign and a tin cup. What needs to happen is for our pathetic government to get a clue that this is the wave for our baby boomer generation. We who serve our parents to the complete sacrifice of any and everything we may stand to have in terms of a life to ourselves need far more support than getting a pat on the back from all the other people doing the same.

I haven't had a job since 2008, and have no health insurance for myself. I can't leave Mom alone for more than a couple of hours to shop for her or whatever because she totally flips out when no one is with her. No amount of discussion with her helps since she no longer remembers much of anything. The situation is such that I have no life of my own, and what might have been is no longer possible because this prison makes any semblance of autonomy impossible. Once her income is gone, I am stuck trying to dispose of her massive amount of stuff on my own with no income to survive while i do it.

If you ask me, it is high time the government recognized us and stepped in ton help us. I think they are oblivious to us, but if anyone deserved a hand, it is we who do this. I would like to form a coalition of caregivers and do something for us. I think I might be able to form an activist site if I get enough people interested. Trying to do that would at least alleviate the mind-numbing boredom I experience doing what I am doing. Anyone care to come on board this scheme?

Nimue1: I agree that something needs to be done for those of us who have lost our lives while trying to care for parents living out the end of theirs. I think they believe that our parents must have large amount of money that we will inherit...Ha ha! Or if they are destitute then we will put them on Medicaid/MediCal and then we can collect a small salary for caring for them and then when they die Medicaid will step in and take their home and or possessions to pay themselves back for any care they paid for while their were alive!

If you have the time and inclination to begin the coalition of caregivers then I think you should go for it. Those of us in the throws of the condition and care taking know that we need help. Not everyone will immediately understand or agree until they find themselves in our shoes. Go for it!

I'm behind it...

I have the means to set up a site for this. I will also work on getting heard by Congress. I don't live far from DC.

Nimue1, I would be willing to do what I could to help in your efforts -- writing letters, doing research, whatever I could. I don't have a lot of resources, but I do have administrative experience.

Nimue1, yes, something needs to be done..should have already been done. And, until the voices of the caregivers pull together and demand from our Govt (Govt employees that have the best healthcare benefits on planet earth) that something needs to be done, and now, nothing will happen. I am happy to help in whatever way I can. I am currently in the process of finishing a website entitled www.eyes-n-ears.net. I hope to have it published within the next two weeks or sooner..starting out small and hope to grow through awareness. I am also on board.

If one takes emotion out of the equation, care giving is an extremely stressful and financially draining experience. Unfortunately, one can't take emotion out of it. One thing our country needs to deal with, however, it caring for its elderly. The laws (at least those that I had to deal with in VA and OH) require so much money to be given to lawyers and the government that those that have the least amount of money have to pay the most while dealing with the stress of aging or caregiving.

Nimue1 : We do need to pressure Congress to recognize the needs of the elderly and their caregivers. Our current situations pales in comparison to the huge number of Baby boomers (79 million strong) who will need what our parents currently require. Nursing homes and assisted living facilities are not a real solution to the depth of this problem. Most seniors never live a day in either type facilities but almost all will require some level of caregiving to live independently or with their family (generally children),

I think former Senator Kennedy had a provision in the new health care law to form a long term care provision or encourage a public run policy. However, it never made it into the final bill that was passed. It might have given more elderly long term care insurance for caregiving fees.

Just like they want to reduce social security's CPI, they apparently don't want to develop a plan for caregiving. It could be done, but we seem to want to do everything on the cheap when it comes to caring for the elderly or disabled people in this country.

We like to see ourselves as #1 in this or that, I long for the day when we are #1 on how we treat the elderly and their caregivers.

Elizabeth

7 years ago my children and I moved in with my parents to take care of my dad who was probably at stage 3 with alzheimers disease. I was going through a divorce so I guess it was a blessing instead of a chore. My youngest son graduated two weeks ago, and I feel he has been deprived of me due to not only my father but now to my mother. She can only use a walker to go to the bathroom which is in the same room, and use the wheel chair to go in the kitchen. I have never asked my parents for money, nor help with anything, I did it out of love, and I am adopted. The past 2 to 3 months give or take, my mother has been so cruel to me and to my father. Dad is in stage 6, I understand she is emotionally troubled seeing her husband the way he is now, but I do everything physically for her. I have a twin sister that lives about 10 minutes from my mother's house, and if we see her once out of 2 months, mom and dad is lucky. Dad don't even know her. When she does come over, mom treats her like gold, like an angel. I had a pain pill problem a few years ago due to a softball accident and having to have a total knee replacement twice. I was suppose to stay of the leg and rest for at least 6 weeks, I was back on my legs doing what I normally due in 2 weeks. I had to go away for 3 months due to the pain pill addiction, I got better, but to this day, she brings it up everyday. It is 3 am and I had to go and "wipe" her, she never says thank you or please. My poor dad suffers so much, is it possible she could be making his time here on earth less each day? All she does is yell at him, she tells him to shut up, ...some days she won't talk to him or me. He doesn't understand, and I know she won't accept it. I am a medical Assistant, was up until 7 years ago, she thinks I don't know what I am talking about. Besides ma and dad and I, my youngest son lives here, along with my oldest daughter her husband and her two kids, Charlie 10 and Trinity 7. Do I get any kind of help, very little. How do I keep on going when each day gets worse? Last year in august I had to have a total knee replacement on the other knee because I am on the legs too much. I am 48 and feel like I am 70. I am on the verge of a nervous breakdown, or worse.....Dad doesn't talk much anymore, and wets his diaper just about every day. Ma has bed sores that I cleared up, never got a thank you. After Jon's graduation party on Sat., the 22, i am seriously thinking of leaving. All I ever ask for is a little respect from her, but I never, ever get it. If she continues speaking to Dad the way she does, I am going to have to report her, he does not deserve to be spoken to the way she speaks or treats him. I don't know who I would report this to. I am a good caregiver that I think anyone would like to have take care of them, except my mother. Like I said, I don't ask for anything, and they say god only gives you what you can handle, I don't know about that anymore... Any helpful insight would be appreciated. I hope I answered the question about caregivers........

Has your mother always treated your dad and related to you this way? Does his doctor know how your mom is treating your dad? It does sound like you are burned out. Your situation does not sound like a healthy environment in which to raise young children. I would suggest reaching out to social services.

Twinlaura, if not for yourself or your parents think of the children. I know there will be people who think otherwise and that it is some sort of valuable life lesson on senior appreciation -- but no psycharist or therapist worth their salt would say that is an emotionally healthy situation to raise young children in at all. Mine is 8 and FIL is heading to long term care in a nursing home in part because of a nasty attitute. Will not put her through that. It will take his home, his savings, his car, hcuris retirement. And you know what? It is worth every penny for my child not to hear some person scream how they aren't 16 anymore and cursing everyone that we didn't prevent them from getting old. What good does it do for our schools to address bullying when the little ones come home to bullies? If you don't go at least encourage your daughter and her family to leave that kind of environment. God bless those poor babies. Sorry you have to be put through this situation and keep us updated. Hugs.

Lizann ~ Yes, I am one of those boomers looking at not having the sort of health care & income & family support that she has once I am in her shoes. As for long-term care insurance, my view of that is that it is very expensive for a very short duration, and, like most other kinds of insurance these days, of more benefit to the insurers than to those purchasing it. Health insurance is a prime example of the bad cost/benefit ratio over the long haul.

So here I am with no job/income, no adequate retirement for when that time comes, no health insurance, and no family or community support system in place for down the road. I recently learned that hospice has an advocacy arm, and I am going to look into what that organization is doing to bring the issues of caregivers to the attention of Congress. I don't think Obamacare really contributes much help to this, but who really knows at this point what it will cover and what hoops one will have to jump through or what loopholes various insurance companies will use to do the least for the most profit. I will have to do a fair amount of research to scope out the situation properly, and anyone wanting to help me is welcome to pitch in with information.

Catjohn22 ~ I also have administrative as well as some technical publishing experience. We might should talk about how to pool our research and dministrative experience.

To Twinlaura: I know how you feel I am in somewhat the same place. I feel your pain and I feel for you. My 21 year old daughter voiced for the first time the other day how she felt..."She is killing all of us!" Our children are adversely affected by being raised under these conditions. The rantings and ravings of a sick grandparent is just a bad as being in a home with parents constantly screaming at each other. I hope and pray to God that my one and only child that I desperately wanted will have a brighter future and the long term affects of this will not harm her.

If you can, there are therapists that you can see for little to no money and they do help with alleviating your stress, some will even come to your home verses you having to leave the house if you cannot get out. Take advantage of it....I do and it helps!

Nimue 1:
You might want to look into groups which do advocate for the uninsured and to address the elderly issues. Sometimes good groups are out there and we don't know of their efforts because they lack the funding to advertise their work.

I think long term care insurance in the absence of a national policy to care for middle class elderly, while expensive, is a needed expenditure. Normally the elderly need in home or nursing home care from 1 to 3.5 yrs at the end of their life. If family does all the care and can afford not to work, then obviously they may not need the insurance coverage. However, as a single person, I lack the family support and do not wish to end my life in a nursing home having to spend down my very last dime and hop on Medicaid (our nation's unofficial long term care policy) to pay for my nursing home once I am broke. Since my parent lived into his 90's I can't count on a short retirement, so I will plan for a long retirement which will need home health aides at the end. It is my nursing avoidance program and I pray it works.:)

Elizabeth

Yes, the Government needs to work out a better Cargiver Reform System for our parents before we loving caregivers burn out. If a parent is abusive and will not cooperate, just walk out on him or her and let Medicaid force him or her into nursing care until that relative dies. If you gave all that you had and now want to save yourself, you are out of all responsilitly. Take care of yourself before YOU ALSO GET HURT!!!!

In ECONOMIC TIMES LIKE THIS, you need to keep your job or continue looking for a job to finance YOUR FUTURE!! So sorry, but you have to let your elderly parent go to assisted living or Medicaid before you get into future trouble YOURSELF!! Take care of yourself before you die prematurely!! Thanks!!

Seriously, i already feel I am dying......

Twinlaura, hon if you feel like you are already dying then perhaps it is time to look at assisted living/longterm care/medicaid -- anything else.
I asked my mom the other day if she would reflect on when she was a caregiver. She was a stay at home mom who took care of my grandmother off and on for 15 years and also my grandfather for a period of time. I asked her if she was not a stay at home mom already and if she was working a job and it took her income and dad's to make it financially or lose everything to caregive if she would do it? Her response, "no. If I relied on my income to make house payments or pay into a retirement and I would lose it and everything we worked for, my parents would have had to find another means of help."
When I read about the financial hardships, the college funds for their own children gone, the bankruptcy, the lack of social security/pensions paid into, I have to ask: what is the straw that breaks the camel's back? Will it literally take people being put out on the street to realize the situation is a sinking ship?
I also don't understand how all these seniors can be poor (I read about ones who took trips to vegas or had shopping addictions), how they can have no money saved, little to no insurance, retirement and none can afford help, nursing homes but evidentally they also don't qualify for medicaid. It just makes no financial sense to me.
I think it comes down to advice that our parents give to us (if they were thinking) when you get married, "you can't live on love." Yes, I know it has to take love to give up everything and caregive but the harsh reality is -- you can't live on it.

Report to Congress? The 40 million plus caregivers that have provided unpaid care to their loved ones.... need to have one of the biggest displays and march on Washington D.C....to the likes no group has ever before presented. And, ask why the Govt. employees, Senators, Congressmen and women have the most surpreme healthcare on planet earth. Yet...the unpaid caregivers are the unspoken and unrecognized real heroes. Excuse me...but someone didn't understand Obamacare? Read it...and then you will understand what is happening in this country and espeically with the elderly.

I agree -- God Bless the caregivers because it would be horrible without the people doing what they do. But on the flipside, this has been going on long before Obamacare. I am guessing that the bigwigs in Washington will say that it is a choice to give up your employment to caregive. They will not look at it from an emotional angle but from a financial one.
I only learned recently that there are changes coming where hospice is concerened when your family member is in a nursing home. To my understanding patients are receiving nursing home care and hospice -- almost like double dipping and it is draining money.
Our family has not had hospice service but we had hosparus service for a short amount of time and while I understand our situation was not the norm, upon researching I found we were not alone in feeling there was some major waste of time, money and resources going on.
I have been with 3 people who died after long, long illnesses and hospice or hosparus was never in the picture. But to my understanding, this summer there will be more nursing homes that do not accept the service.
I also think seniors are going to be more encouraged to give a hard look at their spending habits, their savings and retirement age.
It would be awesome if caregivers should be paid -- but there are those who would question if that should fall on the government or on the parent to provide a wage to their child. It would save the government money by not having so many seniors on medicaid but there are also parents who willingly pay home health care attendants or private sitters but would never consider paying their adult child.

If only the upaid caregivers actually had TIME and ENERGY left over to organize and stage a march on Washington...the other fantasy would be to make each member of Congress fly out and give respite care for somebody for a week, but it would be hard to find caregivers who would trust them enough with their loved ones.

My mother is retired from a nuclear facility, where plutonium used to be refined for nuclear bombs during the cold war. Every year she attends a reunion of her old workers... and lately, there have been representatives there from local HHC places that cater, especially, to nuclear workers. I had been told about this one particular company that would actually pay the family members to care for their loved ones. Seems you had to take some basic stuff, but could become certified in order to get paid. When I asked the fellow who was giving the talk, if they would do that, he said, basically, no, that's not us... and he sorta smirked... and then said something like there are a lot of people out there who want to do that just so they can collect the money... but ya know, you really have to know what you're doing and be trained in that sorta thing. I just wanted to smack him!

We need to organize to change the laws. I am contacting the Bar Association but I don't think that I will get far. How can we take care of our family and not loose our financial stability?

There has to be away to get the law changed, I went and checked out a private nursing home it was 3500 a month that is ridiculous! I say us caretakers put our heads together and let Obama know we deserve rights just like when we fought for equal rights to vote... we have to do this or our next generation is really in trouble...

That is my feeling exactly,
I am a court ordered caretaker
they say I volunteered, who said?
I never had a voice in court proceedings or otherwise,

Who wouldn't want to take care of somebody better than assisted living, daycare. or a nursing home? Our 86 year old lost weight(went down to 95 lbs) had the flu and grew unresponsive in the the assisted living. She was used to one on one care , why shouldn't we be allowed to take care of our loved ones and get pafd for it? When I was in college, I would get these mass emails that congress was voting and wanted our senators to know how we wanted to vote, fill out a form aqnd click, click our representative knew how we felt. am going to find out how to get one of those, may be we can do 1,000,000 email march on washington.

For Iwentanon: how does court ordered caretaking work? What happeneds if you financially or physically cannot be the caretaker anymore? I have heard of court ordered mandates for parents/children when the child is a minor but had not heard of court ordered caretaking for a senior. I am constantly learning so many new things from these forums.
I am wondering if congress will look at caregiving for seniors the same way they look at moms who choose to stay home and not work. Just like you don't receive income for mommy duty, they may make the same argument. Moms are told all the time that there are options of daycare, a family member or private baby sitter. When they say it costs money, the response is: "well it was your choice to have the child." Same with adult caregiving, there are adult daycares, home sitters and nursing homes. When adult children say that it costs money, the response will be that the senior adult should have financially planned more or the adult child should pay it (the finial laws -- sorry if I misspelled it).
I am wondering if the one shot is to say how much money it would save the government if they paid people to stay home vs. so many going on medicaid. If it benefits them...that may make them listen.