How do caregivers give up everything and make it financially?

Altz/Dementia is like the power in the brain being shut off after working for decades and now the mind is running on a generator that goes on and off and will ultimately also shut down.

I have gave up my current financial security to take care of my mother who was showing signs of Dementia and ultimately was hospitalized and diagnosed with Dementia this past fall. I gave up my independent life, several states away,of 30 years to move in with her & am now her full-time caregiver. I can't work and she refuses outside help, and can do things for herself, but cannot live aloe (per Drs orders needs supervision to make sure she does not fall, takes her meds, etc) however the fact that I am no longer working a paying job and adding to Social Security benefits and retirement, worries me. I sold my condo (located in a great stable market) and gave up MY long-term financial security.
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.

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.

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

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?

Almost 2 years ago my husband and I left Chicago to take care of my father in Florida. I left a job that I loved, my kids and grandkids. It was a very tough decision. One that I would think twice about now. It has been very difficult for us financially and emotionally. I took and early retirement and my husband is on disability. We somehow manage to just scrap by. Usually we are in the red at the end of the month. I am a jewelry designer and have tried selling down here but with the economy, no one seems to be buying. I also try to do surveys to help bring in some extra money. My father does have some money so he isn't a drain on us. I rely on my daughters and friends to make it through these tough times. I keep thinking to myself "something good will happen some day".

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.

You are so right about the finacial burden of being a caregiver. Over here though I'm in Canada so it is different everyone is covered and bringing in Caregivers is also covered. I took care of my sister my only sibbling when she had cancer, she was on disability which paid for most of her medication and what wasn't covered The Biker's Union covered it for her. They are an orginization of volunteers which raise money all over Canada for cancer victims and their families. But even so I continued to work and my niece would care for her when I was at work. The bills still had to be maintained. I can't imagine not having these resources available. Without them I don't know how we would have managed seriously, none of us were in a position to quit our jobs. My niece towards the end did take a leave of absents from her job more do to anxiety but she was able to collect unemployment for that time period that she was off. I know that this is not much help in your situation but I thought I would share. Hope you find some resourses. Good luck

My mom is on the Medicaid Diversion program. We didn't go through a lawyer but her name is Maureen & she was & still IS a Godsend - w/Dad she helped us & now w/mom. She helped us divert assets (house, car, & money)so mom would qualify for Medicaid in the nursing home. We get two annuities which will run out in a couple of yrs & mom's pension & ss go to her rent at the home beginning of each month. In Florida, Medicaid wil no longer pay for home care. That's how we did it.

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