How do caregivers give up everything and make it financially?

I live in our condo in CA where both of our names are on the deed as a joint ownership. Thank God that Mom had set up a legal trust with a medical directive and a POA. I am the POA to pay her bills for her, and my brother in OR is my alternative. Since Mom is now not occupying our condo and I no longer have her financial contributions, I see financial some problems down the road unless I am able to find a permanent job due to the economy. No luck for such a job since February 2012. I am now working a temporary as-needed job that may stop at any time. Even though our mortgage has been paid off, I still have to pay the condo unit's monthly association dues, the annual real estate property taxes and fire insurance, the phone bills, utilities, my own individual health insurance (no group plan without permanent work), car maintenance, food and other necessary personal and emergency items while trying to survive on unemployment insurance for about a year plus my own personal savings. I am only 57 and way too young for retirement. If I do not find permanent work soon, I may be forced to consider renting out one of our rooms to get myself by, but no Social Security will be funded out of this income option. There could be just one catch here: Mom is very upset that our family and I have moved her into a board-and-care arrangement for her required 24-hour care at age 93, and yes, I have been bullied because she thinks I'm responsible for moving her out. She has threatened to force me to move out of our unit, but without a permanent job or any adaquate source of income to support our condo and myself, and additionally, unable to sell our unit, I have nowhere to go unless I am forced by court-appointed order to sell our unit and relocate to a family's residence out-of-state.

sugarplum I feel for you, but I am NOT in your situation! I am sure there is another place u can write your feelings to people with your situation....

I definitely agree with Lizann, we do need to find ways to help our sick family members and their Dedicated Caregivers.

Each situation is different. I have acquired years of experience caring for my Mother whenever she has been sick. Every ICU and Cardiac Hospital visit, I have been there. The reason my caregiving knowledge is so vast, is because I have taken time from my job, my home, my life... to physically be wherever my Mother needs to be to make sure she is treated right. And believe me I would NOT trade our time together whether it be in the hospital or sitting and chatting, having a bite to eat... for anything in this world. There would be times when months would go by and she would have no issues, just a little fluid on her lungs, or her blood pressure was running a bit too high, and a few days rest would take care of that. Then in 2006 I believe was the first year I was told my Mother had a small Stroke. Who would have known that led to a couple more through the years, and on January 13, 2011, my Mother suffered a massive hemmorrhage stroke in the back of her brain, that has left her paralyzed on her left side, non-verbal, with a trach. God has kept Mom here even when she wanted to give up. No matter what all of the surgeries, bouts of pneumonia, even contracting MRSA from the hospital, my Mom is still here fighting. I said all of that to say that it is not and has not been easy for me, especially having 7 other siblings who don't lift a finger to help out., but they didn't when Mom was home. What I am saying to anyone who is or needs to be a caregiver, you make things work. Bills for Mom, I pay them off in installments by simply calling and making the arrangements. I teleworked a couple of months, before nosey co-workers started trying to get the same consideration. I will admit I have ignored by physical well being for quite sometime, but I am back on track trying to eat healthy, and rest when I can.
Through the grace of God, Mom is off the ventilator, has been responding by nodding her head fo over a year now. You have to be a very special person to caregive, but if your heart is in it, and you Love that person you will do whatever you have to for them. I DO.

this is true Elizabeth, I fear for my children and 3 grandbabies...

The financial problems associated with caregiving are real. Most Americans can not provide on going care for extended periods of years without working themselves or the elder having money to pay for parts of the cost. This will only get worse as many baby boomers will enter retirement with limited retirement funds in 401k. Our parents benefited from defined benefit retirement plans which unlike 401k's had a guaranteed monthly income all the days of their lives. What happens to baby boomers and their caregiving children if the boomer's 401k runs out of money at say 80 yrs old?

We are in uncharted waters. Some families already face this problem or worse when the elder has no pension and only a small social security or SSI payment. Most costs associated with in home care are funded by the elder or their caregiver.

We need to develop a better method of helping the elderly and their caregivers.
Elizabeth

Twinlaura, I feel the same way. For some reason I feel there are groups in our society, that make me feel at least, that the only family that is real family is the adult children's parents. Everyone else is just a casualty.
And the really heartbreaking aspect is when you see questions posted about verbally or physically abusive seniors who the posters say have been that way their entire lives. So in many cases, these are not always loving, giving individuals we are talking about. I do realize there however are exceptions. However, to play the other side of the card, how could a loving parent even ask their child to quit their job, lose their pension or social security, go into bankruptcy or lose their home?
Maybe it's just because I have been through a version of this same play 20 years ago and am going through it again with just a different set of actors that I already know how the play ends.
My heart goes out to anyone that caregiving has ruined financially.

family is priceless, I am old school, you take care of your own, I raised 5 kids basically on my own, now I take care of my parents, but I am not going to die prematurely and leave my kids and grandbabies due to receiving no help from anyone.... that is just the way I feel..

Caregiving is priceless, just as childcare is, family members, young or old should make no difference. Thank you!

I just thought of somethin I can't get out of my head "We aren't soldiers, but us caregivers can take a STAND!"

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.

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.

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...

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?

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!

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.

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.

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.

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.

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

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!!

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!!!!

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

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!

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.

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.

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.

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.

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........

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