How to afford caring for family members at home?

I’m sorry for the situation you’re in with your mother and know how overwhelming it can feel as I’ve been there with both parents. Please do not quit your job. These are your prime earning years and it’s vital that you guard your wellbeing and future. No one should want or expect you to sacrifice that. Provide the care you’re able to realistically do while still working and let your mother or others figure out the rest. Others will be along to give more guidance

People always think they can be the best CG's for their LO's.

Sometimes, but not often, is that truly the case.

We tend to let our LO's run all over us b/c we feel guilty, or depressed about their health and think we can make it all be OK, somehow.

IMHO, paying for some in home care is better than trying to do it all yourself. You need to plan for your future, so don't quit working!

Mom should qualify for some kind of in home care--you don't say how much care she actually requires. Obviously, on this site, most people are going to encourage you to have mom placed in a facility that can provide 24/7 care and you can be the 'add-on' help, if you so choose.

If that is unacceptable to you, then look into PT in home care and what to expect. You don't give a lot of information. What kind of care does mom need at this point? What exactly does she NEED as opposed to what kind of care YOU want her to have.

Who else in involved in this scenario? I only ask b/c my SIL took it upon herself to be the 'one and only' in her mother's decline--until she could no longer sustain the care level. My post on that is long and boring, but isn't all that unusual. Family tried to do it all--to the end that they all 3 crashed and burned--in a flaming mess. My DH retired early to help out and now that his mother is gone--he seems to have no interest in doing anything. So, quitting your job is not a good idea---I wish DH had stayed working PT. He's bored and depressed. He was bored and depressed the whole year he had to 'help' care for MIL.

The day the kids moved her into ALF, they all said the same thing: "We should have done this years ago!"

SIL, who carried the lion's share, is just now beginning to see the light at the end of a long tunnel. She is also depressed and struggling.

While FT in home caring can work, it does come at an emotional cost. And often a physical one, too, as the LO declines and requires more and more care.

Please come back and offer up more information. That will help.

If you cannot afford to then dont. In fact even if you could "afford" to not a good idea.

I understand the desire to take care of a caregiver, though money aside that is a daunting task.

But your primary concern needs to be your future, unless there is a way you can set up to be compensated for it.

Then you need not to do it.
You need to continue working and to support your parent by helping to find placement.

So you don't quit. You find options. Is Moms cancer curable? Does she have any assets that an aide can be paid from. If not, try in home Medicaid. She if Mom fits the income criteria to have an aid come in a few hours a day. If Mom can do nothing for herself and is incontenent she may need to be placed in Skilled Nursing. Call ur local Office of Aging.

DO NOT QUIT YOUR JOB. Figure something else out.

If it is to that point, your mother needs to be placed in a home, if she doesn't have the funds, apply to Medicaid.

Do not quit your job, it is the worst thing that you can do, giving up your future for someone else is a huge mistake that most never recover from.

Your mom is young.
If this is the person you are talking about.
You begin to look for resources that can help.
Unfortunately mom being 63 may not qualify for some programs that she might if she were just a few years older.
Is mom a Veteran? If so the VA might be a resource that you can look into.
If dad was a Veteran it is possible that she may qualify for some benefits because of his service.
What is the prognosis for mom's recovery?
How much help does she need?
Does she need 24/7 care?
Answering a few of these questions might garner a few more suggestions.

My dear friend,

Your situation sounds very similar to mine. In order for me to give you any thoughts that may help, I am wondering if it’s possible for you to work remotely and with flexible hours. If this is a possibility, then you might be able to manage caring for your mom and maintain your job. 

I was able to work from my home with flexible hours during the four years that I took care of my mom on a full time basis. This allowed me to not only take care of her at home, but also to take her doctors appointments and do all the other things that is required. 

One thing that really helped me as I was preparing to take of my mom is that I went back to school to get certified in elder care with a focus on dementia and obtain my CNA certification. Taking care of an elderly person is overwhelming, not only because of the time it takes but also because we don’t know so many things of what and how to do. The education I got, which took a summer of mine to obtain on a part time basis, tremendously prepared me to take care of my mom. Yes, I still got overwhelmed with burning the candle at both ends at times but for the most part I could manage everything in a more efficient way, and stay afloat financially. 

Whatever you can do to work remotely will be a very big help for you.

If at all possible, do not leave your employment. I read many years ago in Forbes that if one quits to take care of a love one, it can cost over time $325,000 in lost wages, etc

Depending on your employment, you would lose not only salary, but also benefits, such as health insurance... vacation paid days... sick paid days... matching 401k... stock options... paid education.

One time I asked my parents if they needed someone to come in to be a caregiver would they want someone who is a senior citizen themselves... someone who has zero training to be a caregiver... someone who didn't like to cook.... someone who didn't like to drive... someone who couldn't lift them if they fell? My parent's answer was "no". Then I said "that caregiver I described was me".

This means you cannot be a caregiver at home, then. You simply CANNOT.
You will need to tell your loved one in need of care that you cannot quit your job.

I cannot tell you how many come to us having moved into their parent's home to do care, quit their job, and then end up with the parent gone, their home gone to clawback from Medicaid, and the caregiver with no home, no job, no job history. We send them the SHELTERS so they can get minimum wage job and try to save for a room, for working up in job, for a small efficiency apartment.

You simply cannot do what you cannot do.
Your loved one must find a way to go into care. If they have assets their assets will be spent on their care. If they do not they will apply to Medicaid.

I am sorry.
There is just no way to do what cannot be done.

My answer won’t help much, but I sympathize with your predicament. We took out LongTerm Care Insurance years ago that covers in home as well as care in a facility. My husband has dementia and after a deductible period they started to pay for care at home. Could you manage getting someone a few days a week for a few hours to help you? I was resistant to it but boy am glad I did. How about a senior center day care. Most have shuttle services that can pick her up.

Have you looked into mom applying for SSDI that would provide some income that would pay for caregivers.

Do not quit your job! Instead of having one big problem you will now have two.

Look into all your options. You may not LIKE them but you being the caregiver is OFF THE TABLE.

Why are you considering this? Does the family member refuse outside help? Because they are in no condition to refuse anything. This is not your problem to solve.

What is the family member in need doing to resolve this situation? Are they insisting you quit, or did you just volunteer because no other solution was mentioned? My father would announce he had a problem then look at me expectantly for a solution that required absolutely no effort on his part. After a while I learned to throw the ball back in his court and ask him what HE planned on doing about it.

Help them find a solution but don't be the solution.

Omg selfish people in this article! FYI my mother had pancreatic cancer we moved her into my sisters home an WE BOTH CARED FOR HER OURSELVES! 24 hr care !
we took turns I was a single mother of a teenager
I drove 55 miles between my house an my sisters daily to help care finally I stayed 3-4 nites an days
letting my teen at home to care for his needs with my neighbor watching him
i would go back an forth my sister DID QUIT HER JOB TO CARE FOR OUR MOTHER TOO!
after all our mother stayed home caring for us growing up for almost 20 yrs of our lives! Its about love choices an what your willing to give to help another living human being!
where’s all this selfishness materialistic greedy people from?

Yes YOU CAN!
take out cobra insurance if u have work insurance you could loose plus there’s family care leave the federal an state laws have an you can be paid to do this and you can go work for homecare agency takes tests an be paid by them to care for your loved one this is fairly new check it out

don't quit your job. You need to preserve your income and benefits. Who will care for you when you are 70, 80, 90 more? If family member can manage on their own for several hours per day, overnight, let them. Have sandwiches in the fridge and make the home environment as easy and simple as possible. Get rid of clutter, put every bill on autopay, and don't be stonewalled by resistant elders. Just do it. Ask for all the free help you can. Neighbors, friends, the elusive (often) family. Whatever help they will commit to, take it. Don't be afraid to ask specific requests and tell them the details of your situation. Please consider helping us with : Do the grocery shopping weekly. Go to home store for air filters. transportation to Dr. Appts. Take care of the lawn weekly, monthly, be specific. Clean the bathrooms and kitchen and floors with X cleaner once a week. put the trash and recycling bins out weekly. general organization of closets and paperwork, weekly. Come sit for a few hours while they sleep and you get time away. They do laundry and fold and put away while sitting. Make a meal once a week that is appropriate for the ones in care. You tell them what that is. The real stuff. Not cakes and cookies and flowers, and games. Get additional help from caregivers as much as possible. Get on hospice if they will accept for the help they can provide. do not be bullied by an elder or sick person who just wants you and won't cooperate with coordination of care. If that's the case, step back and away as soon as possible . Agencies can provide quality care but it can take time to find the right Caregivers. Private care is good. Look for local referrals. Read obits. Call local senior center for referrals to caregivers. Also, local hospice often has a list of caregivers. Call and ask. As far as affording caring for family at home, with paid caregivers. It is expensive. If you can easily cover some hours while they are sleeping and have few needs and it doesn't interfere with your job or sleep, do it. Personally, I need to protect my nights and sleep time. You will learn the ins and outs of agencies and private care. There is a steep learning curve, in my experience, but learn everything you can from others who have gone before to save yourself the pain. Ask. The more current the better. This forum is filled with good experience and real world advice.

Missyf: NEVER quit your job as you'll need to save for your own elder years. Your family members pay for their own care.

Missyf: I empathize with you about finding a balance between taking care of your mother and quitting your job. I am so sorry that your mother has cancer. Do not quit your job as you are young and you will need your Social Security benefits for your retirement.

Please check with your state/county office to see what benefits your mother can get such as Medicaid or if she can get Social Security disability benefits. If your state has the PACE program, you can apply for this and they will provide care for your mother while she is living at home. If your mother qualifies for Medicaid, PACE will be 100% free for her and they will take her to all of her appointments and provide the care for her. To be in the PACE program, your mother’s residence must be in the area that they cover. If your mother gets on the PACE program, they will take care of her during the day and you can work during those times and be home in the evening when PACE brings her back home.

Hoping you will find a solution to your problem.

For Missy F:

Without any details, it's difficult to share relevant guidance. Every situation is unique due to age, dis-ease by type and progression, and ... finances. Whether or not you are solo, in a relationship (spouse/partner) and if they share your family-care values also has a great impact on your choices. Some partners/spouses also can't digest the life change/impact.

No matter what guidance you choose to pursue, be proactive and prepare with Plan A, B (back-up) and C (a second back-up). It's important to plan ahead for possible scenarios based on levels of care, what your mom wants (can't make her do anything unless you have conservatorship - costly), and what fits for you to remain solvent - financially, mind, body and spirit.

If the dis-ease is a form of Dementia, then in-home assistance requires funding the care - hiring someone to manage the processes that become difficult (or not at all possible - medication management, remembering to eat, and preparing meals) in stages 4 and 5.

Consider if your living space supports your mom living with you (stairs, second bedroom, size of bathroom to navigate care. Of course this can only be considered if she agrees to do so. With that logistical set-up, meals and meds are easily managed. The only thing that needs managing is any personal care throughout the day. You also need to consider if you are physically able to assist her (if needed now or later) with showering, lifting to get to and use the bathroom, etc.

If she doesn't have any assets, then when the transition to skilled care is needed, you can apply for her to be accepted into a Medicaid approved location. Be prepared for a waiting list. Get on a list ASAP. Liaising with social workers can assist with streamlining and moving that arduous process along. Her primary doctor can assist with establishing that relationship. Be prepared to keep copious notes, copies of documents you'll need to present (most recent five years of financials) when applying for her financial aid.

The key question for any type of county, state or federal assistance is whether or not your mom can manage her daily care of toileting, bathing, dressing and feeding. In spite of the decades long standing "one-in-five persons will have some form of dementia" statistics, state and federal programs still do not recognize the life threatening need for in-home assistance for persons with Alzheimer's. The medicare/medicaid assistance is only possible when the person is in late stage 5, or 6 - when the person needs assistance with daily life functions - eating (rather than not remembering to eat) toileting, bathing, dressing.

Until she reaches eligibility for state/federal assistance, perhaps you could arrange for a local friend or neighbor to check on her while you are off-site at work. Living over 6,000 miles away, I've split up medication management for my mom between two of her friends. Both live 25 and 60 minutes from her, yet once a month either one assists with refilling the medication dispenser. By the way, if you need a dispenser, get the 31 day set up - much easier than navigating days of the week. Don't rely on an "automatic reminder dispenser" as it has too many risk factors. If Alzheimer's is the dis-ease, they all to easily ignore the alarm/voice, remove the pills only to set them on the counter or toss them. On the phone, getting the water glass, hearing her take them is the only distance option.

Whether she is or is not living with you, there will be a need for you to manage her financials and medical appointments. This is easy enough with a DPA and an HCP (for health). Just keep a good calendar and set up a spreadsheet with the worksheets for her monthly budget/expenses, and all vendors, healthcare providers, insurance, etc.. This is essential to track EVERYTHING. I can't stress this last point enough. Don't even try to keep any details in your head.

Hope this guidance from a two-person caregiver helps you find your path.