The True Cost of End-of-Life Care

The True Cost of End-of-Life Care

My father’s Alzheimer’s is getting worse, and I know I will eventually have to take over his care. I want to be prepared financially. What should I expect in terms of cost? 

When caring for someone with Alzheimer’s, you learn to expect the unexpected. But you can take action to prepare for the costs of care, which often surge as Alzheimer’s advances.

First, the emotional costs are astronomical, and most caregivers don’t fully realize it until they’re in the thick of it, finding themselves spent, regardless of the monetary burden. But measured in dollars, the average cost of care for someone with Alzheimer’s is nearly $60,000 annually, says Connie Chow, founder of DailyCaring.

Location Matters

Alzheimer’s is notoriously unpredictable and affects each person differently. Similarly, the actual costs of caring for the disease will vary based on where your loved one lives and what level of care she needs, Chow notes.

“One of the most remarkable things about the cost of care is how wide the range is,” says Michael Guerrero, co-founder and senior benefits adviser for Elder Care Resource Planning. Private home care can range from just $10 an hour to $15,000 monthly, he says.

Per month, assisted living generally costs between $2,500 and $8,500, while independent senior living communities are a bit less, between $1,500 and $2,500, and nursing homes range from $7,000 to $12,000.

Try using the Genworth cost of care tool or this aging care calculator to get a more accurate number for your location.

Go Where the Care Is

If you’re caring from a distance, you may need to consider a move. While you can arrange home care remotely, you’ll need a backup if the worker doesn’t show up for a shift or if the companion is not a good fit for your loved one.

Even when an older adult transitions to a full-time care setting, the primary caregiver is still very much involved in healthcare decisions and, depending on what the community provides, may also need to arrange transportation to doctor’s visits and other appointments.

Visiting the loved one is important too, not only for your relationship, but also to ensure the elder adult is receiving quality care. So, if you choose a residential setting, keep this in mind. At the end of a long work day, will you be able to travel an hour one way and back to check in with Dad? If you live further out, can other family members or close friends get to the community quickly should an emergency or health crisis occur?

Planning Is Everything

Guerrero recommends creating a care plan so you don’t pay for more — or less — care than you actually need.

Is around-the-clock care in assisted living absolutely necessary, or could you invest in home care services for the hours your loved one needs the most help? Can you pay a neighbor you trust to check in on Mom a few times a day?

Maybe you just need coverage while you’re at work. If so, adult day care is a highly affordable option — the national average is $1,473 a month — and provides the added value of social engagement for your parent.

Specialized Alzheimer’s care in assisted living is usually at the highest end of senior living costs. The already steep price tag can get even higher if your loved one needs more support than what the base package provides; supplementary services are typically charged a la carte.

For example: If Dad has a tendency to wander — the Alzheimer’s Association estimates 6 in 10 people with dementia will wander at some point — you may need to bring in private duty care for closer supervision.

Guerrero suggests combining options from public sources (VA pensions, Medicaid) and private ones (home equity, life insurance) for your care strategy. This is especially important because someone with Alzheimer’s can live for up to 20 years after diagnosis — though the average ranges between four and eight years, according to the Alzheimer’s Association.

Consider the Emotional Costs

Full-time care in a nursing home or an Alzheimer’s community may be the best option for your parent at some point, but don’t rush it. It carries its own set of emotional and logistical costs, like having to downsize a parent’s belongings or the loss of your parent’s independence and privacy.

People with dementia can have extended plateaus — periods where they maintain a certain level of daily function — before you see a decline. If you’re still able to manage the care in your or your parent’s home, take advantage of options like family participation, respite care grants, privately hired aides, and adult day programs that can reduce costs greatly, Chow says.

As the primary caregiver, you may even be eligible through state and federal programs to receive payment for the care you provide, which could help offset the potential costs.

But if the balancing act of working, raising a family, and caregiving is stretching you too thin, consider the value of your own health and the financial cost of emergency care should a crisis occur.

You can’t predict the future, but you can prepare for it. And when you do, factor yourself into the caregiving equation because you’re a key component in making it work.

  • Cori Carl

    All of this can be incredibly difficult to deal with, emotionally and financially. The Caregiver Space is a community where other caregivers swap tips, share their experiences, and support each other. It’s at thecaregiverspace.org.

  • Writer619

    And this is why this country SUCKS in taking care of its people unlike the Scandinavian countries where ALL of this is provided at low to no cost. I dealt with this with BOTH my parents and sadly I will probably be next… hopefully years down the road but I have no children so I won’t be getting any help or support from them like my parents had in me. At least they had me! And i would gladly pay more taxes toward THIS type of thing if it meant we were ALL taken care of. But this country and its…. “Oh that’s socialism…that’s communism!” Bullshit! If only Bernie had won over the Orange Reality Star Buffoon we have in office now this MAY have evolved. America will NEVER be great again until it learns how to take care of its people as a whole!

    • Lori K Oliver

      In a communist state you are not allowed to say “this country SUCKS.” There are tradeoffs. If Bernie had won the House and Senate…and Supreme Court would render his leadership impotent. The president doesn’t run the country. The House, Senate, Executive and Courts run the country. You don’t want to pay for your parents care, do you? You want other people to pay for it. I don’t care about your parents. I care about my parents. I don’t want to pay for your parents. I need the money to care for my parents. I would NEVER ask you to pay for my parents’ care. Your ideals are messed up. Take some personal responsibility, and stop disparaging this country. It does not suck. You suck. So there. ~plllpppbbt!~

    • Writer619

      You don’t want me to call you what you are lady! Okay…maybe I will say it…you woman…are a horse’s ASS! My reference in my post was that Bernie (or ANYONE!) trying to suggest that we do this…or Single Payor Health Insurance too (which we SHOULD have or at least the option for it)… would be called a Communist or Socialist just like you are doing here (and Bernie was called that when that is NOT what he is!) Doesn’t surprise me! What the HELL do you think…all you dum dum right wingers…that social security…. and also medicare is? Government run insurance to HELP our people past 65 and it works! Oooooohhhhh but that’s “socialism” right? Well…sometimes a little bit of socialism is okay. I know many selfish people like yourself…including my own brother…the me, me me people like yourself… who would pass a dying person on the street and thumb your nose at them and would not help them. AND as I stated…I would gladly pay more in taxes so that ALL of our people are okay. That would include my parents (who are gone now) …your god damn parents …and anyone else’s parents who can be helped by MY taxes. We should CARE about our fellow people…but sadly so many of us do NOT! You madame…are a selfish bitch.

    • Lori K Oliver

      I am so so sorry I inflamed this conversation as I have. As I read your reply I thought, “why is Writer619 so off the rails? What did I say?” And then I read it through your eyes. And okay yeah, I can see how my words might have taken on a tone I didn’t mean to convey. Again, sorry. That part at the end, where I said, “You suck. So there. ~pllpppbbt~” was, I thought, kind of a jovial (albeit juvenile) way to end it on a silly tone. Unfortunately we are not close enough buddies for the gag to have worked. I overstepped. These days we all witness so much rage and ire that it makes us tip all too easily. We have all but lost our sense of humor, our tolerance, our ability to see it from the other person’s perspective. In no way did I expect this level of outrage. I take responsibility for having tipped you, but your rage was primed by others, not me. I just got a faceful of it. Deep in your heart you want to convey this point, I believe: we should band together as a nation and help those of us who need help the most. I hope I got that right. Also, the fact that the “rich get richer” disturbs you. That notion is disturbing even to people who ARE rich, I can tell you that. Heck, by some standards I’M rich. I have a home, a car, a big screen tv–I can even afford to take a cruise if I want to–that sounds like a rich lifestyle, I guess. But I’m not rich enough to pay more in taxes. Taxes eat my income up like a magician makes a dove disappear. Poof! Gone! And then I see how the taxes are spent and I wonder if government bureaucrats are the best people to be handling the money. But then you see a guy who is a bajillionaire running the country (with the help of the rest of the team of bureaucrats) and it kind of makes sense. Put a successful person who doesn’t need money for himself see what he can do to rise the economic tide. A rising tide raises all boats. So in that case, it would be GREAT if the rich got richer. When people get rich other people get jobs. Way back when (during the dot com boom) our family had enough extra income that we were able to hire a housekeeper, a gardener, and a window washer! When the economy collapsed those folks lost their jobs because we couldn’t afford to spend money on those services. We stopped eating in restaurants–except for special occasions–so those waiters lost tips. We didn’t travel. Hotels and airlines and restaurants suffered because of it. We didn’t stop paying our taxes, but our taxes were much lower because our income was lower, our investments paid lower dividends (if any) and our home lost 30% of its value. We were still “rich” by some peoples’ standard, but not rich enough to provide work for other people anymore. Having lived through that, it showed me how it is all interconnected. When you pull on a string over there, it puckers over here. Gaps and tears happen when the fabric of the economy is stretched beyond the breaking point. Each regulation ties a knot in the net. And a hole appears somewhere else. That is oversimplification, of course, but the ideal situation is to loosen restrictions not tighten them. Open up competition and trade. Free up the market place. Make opportunity the star of the show, not governmental regulation. When people are given a chance to shine they will shine. When people are given a fishing pole they will fish. But give them a fish and they will eat it and come back for the next meal. In fact, that is one way the socialist network grows, by creating dependency, and taking the responsibility of caring for our neighbors away from us. And shaming and poo-pooing those who want riches, to work for riches, to create new things, and who hire people to help them. I am not a selfish bitch. I am certainly not selfish. Although I can be a bitch. I am generous…ask anyone…kind, funny, silly, and I can take a punch. If I were ever rich-rich again, I would still be all those things. My personality won’t budge an inch. Sure, I might take TWO cruises, or buy a newer car, or eat out more often, but I won’t stop caring for my fellow man. I’ll HIRE my fellow man to take care of my yard, wash my windows, and clean my house. And I’ll continue to mentor young girls so they can live their dreams. And donate to charity. And volunteer in my community. I’m not a horse’s ass. I’m a great gal. Rich or not, I am a good person. And I want the government to stand back and let me be the best person I can be. So there. ~pplllbbbt!~

    • llr

      Take personal responsibility for your parents having Alzheimers ??!!! How can one influence whether one’s parents have Alzheimers ??!!!

    • Lori K Oliver

      I don’t mean you should take responsibility for a family member getting Alzheimers, but rather take responsibility for caring for them…especially a parent. Not everyone can do that. They’ll need financial help. But if the government is held financially responsible for every person with Alzheimers they also get to dictate the care. You want the government to pay, but I’ll bet you don’t want them to tell your mom she has to move, get rid of her dog, stop smoking, quit drinking, and sit in the chair they provide for her…or get the funding pulled. No. Government control is a bad thing. Do not trade your liberty for cash and prizes.

    • Linda Keet Tillinghast

      For those without children or other family members who can help you when you are sick and need assistance, long term care insurance, if you can afford it, is very important to consider purchasing for yourself. Also, make sure you have named someone you trust to serve as your power of attorney for financial affairs.

    • Writer619

      I have long term care insurance. But yes good advice.Thanks.

  • Heather Gray

    This is all such good information, due to my mom’s poor health, I entered the “sandwich generation” earlier than most and she moved in with us shortly after our youngest was born. She got much more ill 6 years after moving in with us, and I had young children (16, 12 and 8) at home when I finally had to make the decision to put her into assisted living. My oldest child is special needs so I was truly sandwiched!! Putting my mom in assisted living was not only the singlemost hardest decision of my life. it was the most expensive. BUT for the sake of my sanity, my healthy, and the mental health of my children it was the only logical choice. My mom had strokes and many other health issues and eventually a portion of dementia came along with it. My children were being cheated out of a good childhood experience because their mom was constantly taking care of their grandma. Don’t get me wrong, I loved my mother very much and would do anything for her, but it was literally as if I had to choose between being a mom or a caregiver… juggling/maintaining both roles took a great toll on my marriage, and my health too. My kids literally grew up with grab bars in the bathroom, what a dichotomy. When we put her in the assisted living place It was “self pay’ for a year until she could be declared “poor enough” to be on Medicaid. The cost of assisted living was $4,000 a month!! 4 times my mortgage payment~ She was there for only 15 months before she was diagnosed with lung cancer. Was ill for only 5 weeks , admitted to hospice care on a Sunday and just passed away on March 24th. I am reeling from the loss of my beloved mother, and so are my children. They are grieving so hard for their grandma that was with them almost their entire lives, and involved in every aspect of their daily lives. I think everyone should read your article and be aware of what the choice/options are. While giving the eulogy at my mom’s funeral, I told everyone I almost felt as if I was her parent, and roles were reversed because I was taking care of her right alongside taking care of/raising my own children.