How do caregivers give up everything and make it financially?

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, 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.

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.

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.

I'm behind it...

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!

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?

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!

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.

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..

I have been my families caregiver for years... I carried for my Grandfather with my Grandmother. She did not want him to go to a nursing home and he did not want to go. The solution was I went and stayed with him, till he went to heaven. The very last conversation my Poppa and I had was about my Grandma and I promised him I would care for her. I was able to keep my promise and she died peacefully at almost 88 yrs old. We loved her and cherished her, and I miss her EVERY day. My Father had CA and was sick for about 1 1/2 yrs. I stayed with them and cared for him, and he got to die peacefully with dignity in his own bed! I have always been grateful to have had the privilege of caring for those I love. I am now my Mother's primary caregiver. I am NOT a wealthy woman financially speaking, but I have really ALL I need. I am 60 yrs old now and do wonder sometimes how things will be for me when I am older. However I believe that I have done what God wanted and that I will be okay... I know that sounds simplistic to some but I believe that Lord does care for us and supply our needs. take care, and God Bless!

Don't forget Hospice not only do they help with end of life they also help with palliative care. Their services include the whole family. An aid at Mom's assisted living suggested I contact them to see if Mom qualified for their services. The assisted living has three residents all ready receiving their care, one resident as been under hospice care for three years. I had no idea that this was possible. I will start bereavement counseling soon and try to put my life back together after years of different levels of care giving going back to the age of 13 (I'm 56). Call and see if services are available for your love one. They do not need to be in a facility. All those years you contributed to the United Way consider it sowing and reaping. I'm a woman of strong faith and one day four weeks ago I had a melt down outside the door of my Mother's room. I know God put my angel (my favorite aid) there for that exact moment (it was her day off) I'll be forever grateful for her suggestion. I'm finally feeling what breathing really feels like.
I pray this helps at least one person today Amen.

We have been blessed, so far, but that blessing is about to run out. My mother draws social security, and a very small pension. What saved her thus far, however, is that she had a little bit of money from a claim that my father was awarded, through the Energy Employees Occupational Illness Compensation Act, as a Cold War Employee, who was exposed to toxic substances as a nuclear reactor operator. Of course a lot of that money was already spent by the time the "unexpected" came to be, that altered her life. This year, with the changes in health insurance, we chose a health insurance that cost more, but there are no co-pays, and she gets reimbursed for most of her premiums. We also made sure it covered hospice. We chose a medication insurance that covers, pretty much, as of now, all of her meds, within a 3 tiered program. At this time, my mother has her own claim in with the Energy Employees Occupation Illness Compensation Act. Well, you file through DOL, I should say. If she's awarded a claim, she could possibly receive additional assistance, in the form of nursing care, or perhaps a monetary award, or both, which is badly needed, at this time of her life. But we have no idea if she will be awarded anything. I recently found out that she may, at some point, qualify for assistance because my father was a veteran. It may be that she has to meet the same qualifications the same as for medicaid, to get it, not quite sure, it's something to look into.

While mother was recovering, I got laid off, and spent months seeking re-employment, but when it came time for her to come home, I still did not have a job. The job market sucks, it really sucks at age 59. I had been living with my mother, before her accident. But I had also purchased a new home, which I had expected to move into, until she had the accident. The ink was barely dry on the contract, at the time. My mother wanted me to take care of her, and I had always expected that I would, because I wasn't married and didn't have as many years invested in a "career" as the other siblings, so not as much to lose. My brother wanted to hire someone to care for her, mother wanted me, and my sister and I both figured if he's going to pay someone, pay me. It would also insure that the money stretched out a little further, Well, we prayed about it. I was still drawing unemployment, at the time... so, while my brother was waiting on an answer from God, my mother and I already had the answer... simply, what he should do is to do what she wanted, there was the answer... and since I had not found employment, that was also part of our answer. We figured it was meant to be... so, I made the decision to discontinue my unemployment compensation, and become her caregiver. Even though I had the new house, I knew that even if I continued to work, while we paid day sitters, I would have to continue living with her, as she was in no condition to ever be by herself, again. My brother probably thinks back on all this now, and realizes how way off base this is, today, but he had it in his mind that I would keep working on the house, get it finished, move in, keep looking for a job, and we would all take turns spending the night with her, while sitters came during the day. That is so far fetched, this would have never happened, seeing today just how much "they" are helping and how very little they are willing to sacrifice from their day to day living, to help. I made up a budget, and my brother decided on the amount I would get paid. We've had to buy lotsa stuff for her, and the most important thing we bought, in my opinion, is her "standing lift" If not for that, she would have been in bed all the time. Medicare paid a portion of the cost. I've only now gotten to where I can actually take her out, in the car, without having to have a 3rd person to assist with transferring. I cut my hours at my part time job down to practically nothing now, to try and stay within a budget, and I spend a lot of the small amount, that I get, on groceries and supplies for us. I do still have my own bills, however, and when the money runs out in probably less than 2 years, I guess we will just see what happens. My brother thinks, I suppose, that she will go to a nursing home. At least he's presented those scenarios to her. We could sell her house, he suggests, and she could move in with me. I would never do that to her, take her from her home, and move her into mine, Or we could do the flip mortgage thing... and that's not too smart, either... or I could sell my house and use that money. Everyone, to include my mother, says not to do that (and it was my idea). There's a long story there, but not for today. But no way, we'll just make do, start eating yucky yogurt, instead of what we like, open the windows, like we used to, when I was growing up (oh she would love that).

I feel like a lot of folks, that it's something we do because they once did for us. In other cultures, people care for the elderly, but we Americans have learned to throw them away and have little respect for them, as our elders. I identify strongly with a Native American type spiritual way of living, and a book that I read years ago made a huge impact. It spoke of the Circle of Life, basically. It told of how these loved ones cared for us, when we were small, and the way they see it, is it's for us to care for them, when they become old... and even spoke of them helping to care for the little ones (like our children) when they were too old to work, while we worked. Perfect in a perfect world. And folks, this is just my feeling, and no judgement on those who are doing otherwise. I don't know what lies down the road, for us, only where we are today. No blame on those who can't, because our culture is so messed up, that we don't have ways, in our healthcare system, so that everyone can do this. So sad. Again, everyone can't do this, and I have no idea how this will go, down the road, for us, we can only go forward with our hearts and see what happens. But these decisions are all very personal, and isn't for anyone to say what another should do. It so happens that I have always been physically strong, for my gender, and so I am able to handle her better than others, although it's still not easy and sometimes my bones and muscles ache. I can't imagine what it would be like for someone not as physically strong... well, they just wouldn't be able to do it, I guess. And there are lotsa folks out there who don't have social security and pensions, however small, as my mother does. And I have no idea what I will do, when my time comes, what my future will be. The nice, safe, and secure world that we grew up in doesn't exist anymore.

"computer keyboard problems, sorry"! figure out for myself how to survive until 66! I may live to be 100 and will need to pay for care! My family cannot talk me into this after all the unemployment of 14 months I suffered! How will I, a single person, care for myself in old age!??

A family member recently asked that could take social security at age 62! I want to wait until I am 66 to take full benefits. Longevity exists in my family, and if I am lucky to find permanent employment again at age 57, I will work until about age 65 and file for Social Security at age 66 and two months. I just hate being told that I can accept a 20% reduction in benefits for a longer time when I can f

I am hoping to become an Advocate for Altz because legislation is what it will take to get funding for research, health aids, aid for caregivers, etc.
My mother is a narcissist on top of her early Dementia and I was raised in an dysfunction home due to her guilt, putting on "airs" etc.
I do not want to put our family business on blast, but, I will if I am presented with this opportunity to lobby on behalf of this horrible disease including medical research, it's impact on caregivers and families, and it's financial impact which is the part that makes it most difficult for us caregivers that are not millionaires.
Our population is living longer and more people from ALL walks of life will be impacted by this disease. It can come like a thief in the night. When you wake up the person you once knew is no longer the same and never will be again.

A family member recen

When you think about caring for a loved one who cared for you in childhood, CAREGIVIN IS PRICELESS AND OFTEN UNAPPRECIATED!!

I counted up about $16,000 in unreimbursable personal expenses - I did not quit my job but instead traveled repeatedly every 4-6 weeks and then finally moved Mom several months after my Dad died to try a rehab program,which did not go well, but there was still a lot for the year and a half after that, maybe not quite as much. I sold Mom's home and the proceeds plus her reduced SSI and small pension as a widow covered her care with just a little more that we chipped in for a few of her medical or care bills for most of that time. If she had lived longer it turns out we could have supported her for several hundred dollars a month plus her income until she could have gotten Medicaid here. But if we could not have done that it could have been awful. Our system is overburdened and broken the way it is. And I do not know what the answers are, but I hope that there really will be health care coverage for all adults, not just those lucky enough to get some through their employment until they are 65 AND we can stop diabetes and stroke and heart disease that are causing so much of the burden of people needing care. Curing Alzheimer's would be great too, of course!

I agree that many times parents are moved from their home to be nearer the caregiving child. This is understandable however, uprooting the elder from all that he/she knows has its negative effects too. They are totally dependent on the child who has "take them in". Gone are their friends, neighbors and perhaps the church they attended for decades. Generally, they do best in their own home but it isn't possible to keep them there if they live a great distance from their children who wish to care for them.

I do not think we need to go the route of assisted suicide. We do need to face the need to care for our elderly and support their caregivers to keep them in their homes safely as long as possible. It can be done but our society is running on a for profit basis and elder care isn't something which be measured by cost vs profit. We claim to be a Christian country but we definitely fall very very short when it comes to the elderly. We talk a good game but when the rubber meets the road we aren't there to support family caregivers. Very sad.
Elizabeth

I keep reading about folks who move to where their folks are to care for them. I know most of my friends who have successfully cared for their parents had the parent(s) do the moving. Also the parents had been cautious with their money and the children followed that same track, seeking legal and financial help before things become critical. My husband and I are just at the beginning stages of caregiving, but his Mom has some assets which will be used for her care. It is very sobering that the number one factor in bankruptcy in US is medical bills. As the baby boomers age, the financial burden will become enormous on individuals, families and society in general. I think the public viewpoint of assisted suicide will change simply because of the financial impact of so many aged people. And older folks will be encouraged to let nature take its course rather than have doctors make ever effort to give them 1 more day of life. Scary!

Caregivers who leave their jobs to care for an elderly parent for an extended period of time are very unselfish and I would like to think the good Lord will help them when they need assistance. I decided to continue to work and be the sole caregiver for an elderly parent for 4 yrs. It was both very rewarding and very exhausting but I know my father benefited from the care. He was very clear he did not want to be placed in a nursing home. Luckily his mind remained on track throughout his life making keeping him home possible.

I had considered retiring early but I knew my pension would be better if I continued to work and pay into it.I am single so the option of a spouse covering my living costs was never in the picture. Being an only child, I had no siblings to share the costs or the duties surrounding my father's care.

My father had a small long term care policy which assisted with paying for the home health aides to be with him while I worked. He also had good health insurance (complete with prescription card, eye care and dental care) from his many yrs of employment. My father worked until age 65.

With parents living longer than our grandparents, there are more years in which they will need a caregiver. People always cite some 90 yr + elder who still lives independently etc. but we need to face facts, these elders are in the extreme minority of elders and do not represent most elders over age 90. We have larger numbers of Americans living beyond 85 but we don't have ways for caring family members to manage their care and work full time.

Also most people do not have enough retirement pension income to pay for assisted living for all the years they will need it.

I think many people at their wits end finally place their elder in a nursing home because they lack the financial resources to do anything else. If your elder is poor, they will spend down any savings and then Medicaid will step in to pay for the nursing home placement. The home may not be the best but it is all they can do unfortunately. However, I think only 4% of the elderly live in nursing homes so most families are pulling together some type of care.

Elizabeth

There is a program for caretakers called "cash and counseling." Also if your loved one was a veteran or a surviving spouse I have been told that you can check those programs for financial aid.

You all know, and really listen to my opinion: I would just like to go into my 93-year-old Mom's care home room now, scream, "You Fool for not appreciating our help, and here is your sentence!!", squish and smother her to death and never, ever again have to take the abuse my family and I have to put up with. And get charged with murder in desparation to "get rid of our immediate problem"? That is my feeling now, and I will go to confession for thinking about this; you see we have always practiced our faith and confessed our sins!

This is an important topic that doesn't seem to me to get nearly the attention it deserves. My husband and I spent most of the past 3 to 4 years caring for his parents at various levels of intensity. It started out with just helping with meals, checking on them in their home, helping with groceries and meals, getting them to doctor appointments, and other places, then gradually increased as they entered their 90's. Due to my FIL's physical deterioration following a bad fall and head injury and my MIL's rapidly worsening dementia, we had to step in and take charge of everything about three years ago. Following FIL's neurosurgery, we moved them into assisted living in the same city where we lived, about 30 miles from the town where they lived, and orchestrated everything, visiting several times a week and trying to maintain oversight of their needs that often seemed to slip through the cracks even in AL. My husband has only one sibling, who lives in China and has had little involvement or presence here for several years. Ten months after that move to AL, my FIL had another bad fall, another subdural hematoma and died three days later. MIL had to move upstairs to a restricted "memory care" floor. This greatly increased her costs at the facility, while her income was reduced after her husband's death. She could not afford to stay there for more than a few months, and we could not afford to pay the balance of what she couldn't cover, so four months later, we moved her back to her own home and I left my job and moved in with her as FT caregiver. It was not easy for any of us, as my husband had to continue to work at his job, so we lived 30 miles apart during that time, except for a day or two a week when he had a day off and came over, too, but we kept his mother as comfortable and as contented as possible until her peaceful death in her own home, this past December. While it is not something we would want to relive, we will never regret having done it. Financially, it was difficult, but we made it through primarily due to my husband continuing to work. We also were helped by a VA Aid and Assistance grant, which she qualified for as the spouse of a WWI veteran, with few assets. This would have helped a lot more, if it hadn't taken several months to process and begin receiving. It's a very confusing application (I did it myself from forms off the Internet) and takes a very long time to find out whether the claimant will qualify, and then, again, to begin getting the monthly payment. My MIL only had collected it about four months before her death, though she had qualified going back almost a year before that, so it wasn't a huge help. Since they had no long-term care insurance, my in-laws went through just about everything they had by their 90th year, along with their monthly SS and pensions, during the fourteen months of assisted living costs, plus some other medical bills. AL alone cost almost twice what their monthly income was, so it didn't take long. Fortunately their house had been paid off long ago, the property taxes were very low, and the only utility charge they had was electric, so we were able to keep monthly costs to a minimum. Giving up my job and income at that point in my life (I was 61) was probably not very smart financially, but there are things that are more important. My in-laws had always been wonderful parents, parents-in-law, and grandparents, and always had been there for anyone who needed their help. It was important to us to do everything we could to help them when they needed it. No regrets here, but it would have been nice if there had been more support to turn to at that time.

Yes, housekeeping and caregiving has cost me dearly, with no appreciation from my now 93-year-old mother; we bought and moved into our condo 22 years ago, and now Mom must live in a 24-hour board-and-care home where she complains to me that it is noisy, indicating that I am responsible for putting her there when I put her there to keep her from falling again! She is incapable of caring for herself at home anymore.

I have just been wondering how most people make it. My FIL is in this situation and if my husband quit work to take care of him, he would lose his pension, our insurance coverage and my FIL pension would not cover our monthly bills. There are no siblings to help and the majority of other family he has outlived. I ha e known some friends who have taken bankruptcy ( not over care giving) and just can't imagine putting my child or spouse through financial ruin that lasts for

The end of your statement is what has gotten me through, God bless the caregiver! You are correct about all your questions and statements. It is financially, and emotionally draining for those of us who quit their jobs and leave their own families behind to care for a parent. Maybe I was fortunate that mom had her social security and pension that she was living off. She was still paying a mortgage( her dementia started before anyone realized it, so she had refinanced her condo several times). I took mom and moved from east coast to west coast and with God's guidance found a house to rent pretty cheap but really nice in 1 month. I did find a job and a really good neighbor within 2 months, but eventually had to quit that job also because my hours at the job was too long and I worried about mom in evenings being cared for even though my neighbor lived 2 doors down and still checked on her. I now have been approved for disability because of my health which had nothing to do with my mom. I guess what I'm trying to say is this. If I placed her in a home in the beginning of her dementia(which she was not ready for), my siblings helped in no way, she would have become really depressed. I was the only one for her. The money she gets monthly was not enough for a assisted living(most people who talk about placing a parent, don't realize that its very expensive!!!). A smaller less expensive facility was found but horrible. I have given up a lot of my life but have survived these past 4 1/2 years by trusting in God. I know there maybe some of you out there that may not believe and I'm not forcing my beliefs on anyone, but if you think less of the financial, material and emotional part of caregiving, and just trust in God, you would be surprised how it gets you through the day. Caregiving is a day to day job anyway, and trust me, I cry, get angry and frustrated, but the next day comes and there may be something new to face, but God has gotten me through the day before and blessed me with a solution from whatever I cried about in the past. There is no good solution to this, and until congress starts paying caregivers no matter what the parents are getting, and until there is a cure for Altz/Dementia we will continue to ask what's right, wrong. Just do the best you can and do what is right for your loved one.

Care giving can be a drain, a strain and a pain.
CAREGIVERS that get paid or have rights and those that do not get paid,
NEED TO HAVE THE SAME RIGHTS.

If you do not work ten working years straight,
you do not qualify for medicare, your social security check will be less,
unless you have been married to someone for ten years and have spousal benefits.

Most of us are women and we take a hit just like when we raised our children and our husbands had the freedom of coming and going, not only didn't we have the freedom, it was also our in home job to be conserve the money, cook clean, etc.
It is always tough TO DO THE RIGHT THING,when sacrificing your time, that you cannot get back, your money you cannot get back, and your life you can get back provided you live long enough, but I feel that purposely allowing someone a less quality of life, because they can no longer take care of themselves it is awful and quite frankly unjustified. .

@Marco40, I so agree with your response; thank you. Caregiving is a noble and high calling, and also very exhausting, at times - if not, most - thankless, undervalued, and financially stripping... Yes, it will break you.. but it will also increase your capacity of compassion, empathy, grace and character if you allow it. It is through suffering that we prove who we are, really. I've been through the fire and I really would not take it back.

Blessings to all.