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.
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
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?
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
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.
My brother and I both agree when she gets to the point when the disease advances, we may have may have no other choice but to put her in a nursing home, despite objections from her sister (that also has Dementia) telling me "I can NEVER do that.
Support and legislative action is needed for caregivers of Dementia/Altz as the population is living longer, and more folks are being diagnosed with this horrible disease that impacts the lives of family members.
I often wonder what is worse cancer or other physical disorders vs. the mental Altz/Dementia disease.
Blessings to all.
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. .
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
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
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.
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.
I pray this helps at least one person today Amen.