How do caregivers give up everything and make it financially?

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Has caregiving cost you a bundle personally?


I have read so many heartbreaking stories on here about various caregiving situations. My mom helped caregive for both of my grandparents but while they did not pay her, they did have insurance and savings for medications, supplies and of course their health care coverage paid their medical bills. My dad worked and mom was a stay at home mom, so she did not quit an outside job.
I hear about so many people who quit their jobs, take out loans and exhaust savings paying for medicines and treatments and supplies for their parents and many have their own children/families. Are the majority of these situations like my parents where one spouse works an outside job and one stays at home caregiving? Are adult children moving in with their parents into their home and using their parents pension to live?
I just don't see how the caregivers make it financially. I am thinking about things such as if you quit your job, you are not paying into any social security or a pension (depending on your job) for yourself. If you take on loans for medical treatments, how do you pay them off?
Also, many of the parents I see mentioned are in their late 70's at youngest with many in their 80's and many have nothing. No savings, some with no home and many with no insurance. How? Do insurance companies drop patients at a certain age or is insurance not afforadble? I just know my relatives always kept insurance even if it meant giving something else up.
I also have known people to quit jobs to caregive with young children and there seems to be no thought into college accounts and sometimes even basic needs for their children.
If you are in this position, how do you make it work financially without going into bankruptcy?
May God Bless the caregivers.

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You are right. Many caregivers have given up their current financial security to take care of family members, however the fact is that if they are no longer working a paying job they aren't adding to Social Security benefits and retirement, so they are also giving up some long-term financial security.

There's a big different between the time our parents cared for their parents and now. Health care didn't eat up most of a person's income with co-pays, etc. back then. Also, one wage earner often could keep a family going. Now, it's harder to do that. We have much more to consider financially than most of our parents did. Yet, many of us dive in and do it anyway.

You may be interested in this article I wrote on the subject:
https://www.agingcare.com/articles/quit-job-to-care-for-parents-150227.htm

Thanks for weighing in on this important topic. It presents a huge dilemma for many adult children.
Carol
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Only1, and to try and provide an overview from my experience. Carol Busack provides a good response, as well as other others that have responded to this question.

Caregivers today are the true and unselfish soldiers, like those heroic soldiers that fought in our many wars, that picked up their fallen commrads while the bombs were exploding all around them. Most all were scared and some emotionally ran for the hills, but the vast majority of these soldiers did what they had to do to provide care and support to their fellow man or woman. Today, the vast majority of family that can help have chosen to run for the hills, as their lives are so much more important...and as they say..."life goes on".

The primary caregiver or caretaker is in the vast minority today, and has a "huge" emotional and financial burden and sacrifice to put their arms around. Those that take the position that well, "it's your choice", will, in my opinion have to answer to someone...and I am thinking that will our God. After 10 years in trying to explain to my brother and his wife the incredibly demands on a primary caregiver, it basically all fell on deaf ears. And yes, you get so worn out, they you begin to lose your drive. For so many years, we (caregivers) had a dedication and focus to provide personal care..out of genuine love. Along this path, we were slowly walking into a fog that became more foggy everyday...a slowly progressive walk into the depths of darkness, without the moral and emotional support from "family". Time becomes frozen, and other than those that have walked through this journey... most will never understand nor appreciate.

I walked down the caregiving path for ten years plus, and aside from simply the demands of personal caretaking, there is an enormous amount of other issues to try and put your arms around, from record keeping to scheduling appointments, from arranging and discussing with physicians and nurses, to physically transporting, seeking outside caregiver help, interviewing, documentation, med dispursements...keeping an eye out for everything. And in between, meals, laundry, cleaning, groceries, bathroom assistance, changings, etc. Any wonder why a caregiver becomes burnt out. Oh...and then there is in most cases, worrying about financial matters.

Caregiving is a very difficult task, and depending on the level of confussion and disorientation with an elderly person, adds another high level component of stress to the caregiver.

Joycews, yes, an incredible drain financially, and yes, bankruptcy is likely somewhere down the road for many primary caregivers, including myself. I believe the American Alzheimer's Association stated that there are some $15 milllion unpaid caregivers for people with dementia, at an annual cost of some $200 billion. I am addressing this is my book.

Yes, God Bless all of your caregivers. Don't let anybody take away what you have sacrificed out of love and compassion for your parent or other loved one...for God is watching.

Hugs to all of you.
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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.
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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.
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I have been doing caregiving since 2004 alone,..I just got to the point I could not do it anymore, but then I tried to "micro-caregive", (as in micro-manage), when Mom was put into a facility ...I guess because I did not feel that particular place was caring for her on the level I did/ she was accustomed to. All these years of care, & all this time afterwards worrying, has really done a number on my financial & emotional well being. I feel I cannot even function without her here. I know I am in no shape to care for her, but cannot function without her. I am letting myself go, cannot even do daily activities anymore. I am ruined financially now after all the years of that, and no drive to do anything to improve my situation now.
Is this typical after years of caregiving? I mean when I think about myself, i even think in the terms of an 80 yr. old woman, and I am in my late forties! I just feel life has come to an end, has this happened to anyone else?
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Caregiving a loved one is often tough (financially and emotionally). But my suggestion, prior to quitting one's job to focus on caregiving (parent), is plan. Paranoia aside (hopefully siblings will aid, and you're not alone), develop contingencies and money making schemes (some money (big or small) can help). By that I mean emphasize hobbies, networks, talents, almost anything. Hope this helps. To all the big hearts, thank you.
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@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.
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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
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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!
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Only1
I certainly understand. Mom is in NH now. Your right, the care I gave her is not what the NH will. Mom was receiving one on one and only one TLC. An aid must have more than one resident to look after on her shift. I know my mom asks that she wants to go somewhere to live where it just her and an aid / nurse to watch over.
In the meantime, my suggestion is do the best with your mom. If u r able to get to know who her aids are an recognize how they interact with each other. Eventually, you can have trust with them that they are doing there job and showing compassion .
You can function when you develop the trust with an other care giver.
Do you have a strong spiritual leader, friends, other family members that you can confide in and support your emotional and help guide financial stability back?
Take care of yourself. I decided to get back to excersise and bible study and friends to get through my emotions with my mom when she was long term resident at Nh.
Keep in touch and let me know how you are doing.
Hugs to you
Equinox
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