Episode 46 – 4 Keys to the Challenges Faced by Family Caregivers

By the time we finish today’s show 327 elderly people will be treated in an emergency room for a fall – that’s one fall every 11 seconds. Now, I’m sorry to say this next piece, but three of them will die from that fall. One every 19 minutes.

Those jolting statistics come from the National Council on Aging. Many of us have dealt with elderly loved ones who have fallen. In fact, one in four elderly persons experiences a fall each year. Whenever any of these personal and health safety issues arise, inevitably they draw attention to a wide range of medical, legal, and financial issues, too.

In this episode, you will learn:

Smart planning can help ensure your loved one’s good with continued care
What a caregiving plan must address
How caregiving impacts the rest of the family
Why a team approach can produce the best caregiving plan
How to get started with a caregiving plan

Tune in now to learn about smart planning techniques to protect your loved ones!

Resources:

Bautis Financial: (862) 205-5000 | Caregiving Resources

Those jolting statistics come from the National Council on Aging.

Many of us have dealt with elderly loved ones who have fallen.

In fact, one in four elderly persons experiences a fall each year.

Beyond simply falling, there are other personal health and safety mishaps for the elderly that many of us have heard about or experienced.

Such as:

Wandering away from home,
unexplained car scrapes, or even full-blown car accidents.
Faltering nutrition,
dangerously neglected home repairs,
stoves left on or freezers left open,
missing or wrong medication,
and neglected personal hygiene, among others.

That’s just a small list of unlucky accidents.

Other issues that can give rise to a caregiving crisis are chronic conditions or suddenly emerging illnesses.

The most common ones include

diabetes,
arthritis,
kidney and bladder problems,
dementia,
Parkinson’s disease,
glaucoma,
lung disease,
cataracts,
osteoporosis,
breast and prostate cancer,
Alzheimer’s,
macular degeneration,
depression,
and heart disease.

Whenever any of these personal and health safety issues arise, inevitably they draw attention to a wide range of medical, legal, and financial issues, too.

For example, some key questions include,

“Are our loved ones’ health and medical care really being monitored?”
“Are we certain that they have all the recommended legal safeguards in place for decisions about their care and estate matters?”
“Do we know how our loved ones plan to pay for late-in-life care?”
“Is there a plan in place that actually makes sense?”
“Are the finances in place to pay for what’s needed?”
“What happens when the elderly family member can no longer stay in her home?”

So we begin to notice here just some of the issues and topics that come to light following the emergence of a caregiving challenge.

This was the longest introduction I’ve done for my one of my shows, but on today’s show we are going to talk about four keys to making a difference in a family caregiving challenge

Families spanning generations often reach certain stages of equilibrium and happiness which can last for quite some time, but then something happens, usually to the oldest generation. A caregiving crisis hits and few families know what to do. Stress increases as family harmony and happiness dissipate.

Many of the people I work with are part of the classic “sandwich generation.” They’re putting their kids through college, they’re trying to save for retirement, and now they suddenly face new pressures and challenges taking care of one or more elderly parents.

The consequences of unplanned caregiving for elderly family members can be devastating. Those consequences hit people on all levels – personal, professional, and emotional. Sometimes families get torn apart when a caregiving challenge becomes a crisis. When there is no planning and a crisis hits, it can have a big impact on people’s financial plan across multiple generations, impacting grandchildren, adult children, and of course our oldest loved ones.

One of the things I’m hoping everyone gets out of this show is how to start putting a caregiving plan together. At the end I’ll talk about a resource that you can use to help do this.

Now, when it comes to caring for an aging loved one, most families don’t have a plan until there is a problem. The lack of planning doesn’t have to mean there is a lack of commitment. Like most things it’s never too late to begin the discussion.

A caregiving plan should address the personal, medical, legal, and financial matters all wrapped up in the lives of our elderly loved ones. And it’s something that you should work with your family and associated professionals to create

It’s no different than creating a financial plan. But the hardest part about it is getting started.

Key #1 Ensure Your Loved One’s Good, Continued Care With Smart Planning

This means that you have to guarantee that right when a crisis hits, even as you wonder “Oh no, what’s happening?” that the first focus is making sure that your loved ones are getting the care they need.

Step 1 is to gather important information about the care recipient’s medical needs and conditions. There are many different questionnaires that you can use to better understand your loved one’s needs and challenges, and you’re going to want to assess the biggest concerns and priorities of your loved one. Obtain as much information as you can about the care recipient’s medical needs and conditions, monitor their quality of health, and maintain communication with their care providers. All of those things are important to understand and get in place right from the beginning.

Time is of the essence. Things can change rapidly, so you also want to quickly check if the legal issues around health care and your loved one’s estate are addressed. We’ll talk more about this in a moment, but the reason time is so important is because at any moment, your loved one could lose his or her legal capacity to make health care and legal and financial decisions. And when that happens, a whole world of painful complexity enters your family’s world. So this is an important piece of your immediate concerns.

Once you’re satisfied that your loved one’s immediate healthcare is being addressed satisfactorily, you need to have a caregiving discussion with your loved one. Remember to ask what’s important to them while they are still healthy and able to express their wishes. You must be prepared for the unexpected.

Something to keep in mind – having a discussion about money and aging with loved ones may be difficult, but it is key. It’s essential that everyone have this conversation by age 60.

Next we are going to move on to the second key.

Key #2: A Caregiving Plan Must Address Medical, Legal, Financial, and Personal Issues

Let’s take a look and what exactly is a caregiving plan. Your caregiving plan provides a framework for discussing all the “what ifs” that may unfold in the very near or further out future.

It outlines your care recipient’s wishes and priorities, and it assesses needs in medical, legal, financial, and personal areas. And then, the plan organizes all the resources that are available to your family to provide help.

Medical

Let’s look first at medical needs.

A good baseline in assessing your loved one’s health and medical needs is to review their abilities to perform the activities of daily living. This is a standard you see when it comes to long-term care assistance, but it’s also just a good diagnostic tool. Do they need help with eating or bathing or dressing or going to the bathroom? Or being transferred from the bed to a chair?

Based on your review of those activities, questions may arise about the need for in-home help. Depending on your situation, your options could include a visiting nurse, outside helpers like Seniors Helping Seniors and other organizations, or a more traditional in-home health aide – either a family member or friend, or someone the family hires.

All of this can be coordinated by an Elder Care (or Geriatric Care) Specialist, somebody who manages these issues and more for your family.

Inevitably, as you start to look at this, one issue that comes up is insurance, and you want to know what is available to defray the cost of caregiving. This means a review of what insurance policies your care recipient currently holds.

There are many things to take into account for this topic, such as

health insurance,
Medicare,
life insurance, and
possibly long-term care insurance.

And for these policies, be sure to request in-force illustrations to confirm the premiums, the death benefits, the loans and the cash values.

Long-term care insurance will certainly pop up, and you may need to pay special attention to that as you review your care recipient’s long-term care funding options. Long-term care is defined as, “Needing assistance to handle some of the basic activities of daily living or requiring substantial supervision due to impairment.”

We reviewed before what the “daily activities” are, and you need to decide what will happen when the care recipient is unable to handle some of those activities. Is there long-term care insurance, or life insurance with a long-term care rider, or other approaches that can help? You’ll want to look at all this and weigh the options, and seek professional advice for choosing what suits the care recipient’s needs best.

You might not be aware that if your loved one isn’t poor or on disability, their health care insurance is likely going to be Medicare, and Medicare DOES NOT cover long-term care. A lot of people get confused by that. Only income-qualified Medicaid covers it, or people who are on disability.

Review all Medicare policies, because you need to understand that it’s not one policy, it’s actually several separate private and government programs. We’ve all heard of Medicare Part A and B and D and the supplements and Medicare advantage, and it can really get your head spinning.

On top of all that, you need to review how premiums are being paid and get a clear handle on when the upcoming renewal dates are, because that is critical and you don’t want to have coverage lapse because you didn’t know what was supposed to be paid when.

Those are the highlights of what needs to be addressed for the medical aspects of creating a caregiving plan. Now, let’s turn to some of the legal issues.

Legal

A good place to start is reviewing and updating critical documents. These include things like Power of Attorney, Health Care Agent and health care directive, a will, and trusts. Of course, your financial advisor and your attorney should be able to assist you with these documents.

The health care directive and the Power of Attorney should be considered top priority. So let’s take a closer look here.

A care recipient can designate a Health Care Agent as a surrogate or proxy to make medical decisions, if at some future time the care recipient is unable to make decisions herself. The agent can be a close relative or friend, but should be someone known and trusted by the care recipient. In most states, the agent can make decisions any time the care recipient loses the ability to make medical decisions, not just decisions about the end of life.

The agent and the care recipient need to discuss values and quality of life issues relating to big decisions about treatment and future medical situations. The care recipient should explain what she is asking of the agent and talk about why she picked him or her. The healthcare agent needs to know about the quality of life that is important to the care recipient and what medical treatments she would want in certain situations. These discussions are important because situations could occur that the care recipient can’t anticipate, and the agent may need to base a decision on what she knows about the care recipient’s values and her views of what makes life worth living.

These are not simple questions, and people’s views may change. So the care recipient should talk with the agent in depth and repeatedly over time.

For similar reasons, a legal proxy is also needed. Be sure that your plans also address the Power of Attorney issue.

There are two types of Power of Attorney. There’s a durable Power of Attorney, an agent who is authorized to act immediately upon creation of the Power of Attorney. And then there is something called a springing Power of Attorney, in which the agent is authorized to act on the care recipient’s behalf only when specific criteria for legal incapacitation is met.

As I mentioned earlier, many people are surprised to learn that Medicare does not cover long-term care. Only Medicaid does, for those people who are income qualified. The cost of long-term care can deplete your loved one’s finances if they’ve not planned for it. There are ways to achieve coverage through a Medicaid asset protection, but the rules are very stringent and complex. You’ll need financial and legal advice if you want to explore this approach.

Another important legal issue to address is the estate plan. Find out if the care recipient has a will and an estate plan. Do the documents need to be updated? When a will isn’t sufficient, you might also look at a trust and other options.

Financial

Those are the key legal issues you’ll want to review in your caregiving plan. Now let’s take a look at the financial stuff.

Take a detailed look at your loved one’s finances. Look at what their tax situation is, as well as their sources of income, recurring expenses, and assets and liabilities. Also, you’ll want to know the financial professionals in their lives who have been providing advice and services over recent years.

Alright let’s dive into some detail. When you’re reviewing income and expenses, identify all the sources of income. Are there any pensions? What about the IRAs, and what’s going on regarding minimum distribution? Is there an annuity in place, or more than one annuity? Is there life insurance, and what’s the situation with that? What about investments? Is there rental income? Savings and checking accounts as well. Whatever sources of income there are, you need to go through all of them.

On the other side, expenses to consider include how is housing being paid for? How is transportation being paid for? What are the regular health care expenses? What’s being spent each month for food and entertainment?

You also need to look at it from the perspective of assets and liabilities. What’s the situation? Do they have a home, and is it paid for? Is there a mortgage or even a second mortgage? Do they have a second home, and if so, what’s the status with that? Do they have rental property? What’s the situation with cash, the money market, the CDs? Is there any land, bond, equities, et cetera?

Create a list of all the assets they have, some of which produce income and some of which don’t. And then on the liability side, list the mortgages, the credit lines, credit card debt, property tax, and all the things like that.

Another piece of the puzzle is taking a look at current investments and savings. Identify all the savings and investment accounts that are held by the care recipient and your family. What is the asset allocation of those investments? Is it appropriate? Does the allocation really match the care recipient’s risk profile at this point in time? Again, a financial advisor can answer questions for you and create strategies for investments if not already in place.

It’s also critical that you review the titling and beneficiaries on all those accounts. You’ve got to confirm that is done and done correctly. I’ve seen so many mistakes made in this area over the years. It’s really painful when somebody passes away and it turns out that the beneficiary on a big account is someone the loved one didn’t want to receive it but no one had looked at the account in years. You want to confirm that the beneficiaries and contingent beneficiaries on all these accounts are in place, that they’re up-to-date, and that they reflect the care recipient’s desires and needs.

You need to do this not just for investments but also for insurance, annuities, and everything else. Because again, mistakes are found too late and they can be painful and embarrassing, and you just don’t want that to happen.

Naturally, as part of your review, you’re going to want to identify the financial professionals involved in your loved one’s life. Who is the accountant, who is the insurance agent, do they have an estate attorney, do they have a financial advisor, is there a bank rep involved? And any other professionals that come to mind?

It’s also important to review the tax situation. Understand how taxes are being paid on income and property, and who’s filing them quarterly and annually. If there is in-home help, are the proper taxes being withheld or is it outsourced to a company? If it’s somebody you’re paying directly, you need to figure out the tax issues.

Likewise, you’ll also want to inquire about elderly employer tax benefits, if in fact you are hiring somebody to come in as a caregiver. There are medical care and dependent care deductions, and that sort of thing. Like I’ve said, this is an area where it’s important to seek professional help. Your financial advisor and your accountant can be extremely helpful in situations like this.

Once you’ve completed a survey of your loved one’s finances, then, as part of the caregiving plan, you need to create a financial plan and a monthly budget. Understand your care recipient’s monthly cash flow. Where is all the money coming from and where is it going out? You also need to ensure that all the bills are being paid on time. Who’s going to be doing this?

It is important to continually monitor spending and bank accounts, because oftentimes, money starts disappearing, going out the door for a variety of reasons. Sometimes dementia is undiagnosed, or somebody is caught up late at night buying a gazillion things from QVC. Or sometimes a less-than-savory situation of financial exploitation is going on. You want to be able to monitor what is happening.

That covers the financial piece to some degree. But you also will need to address the personal side of things.

Personal Needs

Look closely at the personal needs of your loved one and what living options appeal to them. All right, everybody wants to stay in their home as long as they possibly can, but when the end of that road comes and something else has to happen, what are the other options? Is it moving in with a family member, or is it moving to a retirement facility or some sort of assisted living? Or another option?

Make sure that your loved one is taking advantage of all the benefits that they qualify for. Many families aren’t aware of all the benefits available. AARP is a good resource that can help you determine if your loved one does qualify for some additional benefits.

Your loved one may also want to write a letter of instruction that goes beyond the will or any sort of legal document. This is a letter that serves as a reminder to the family of the sentiment behind your loved one’s wishes. It has no legal authority, but it’s like a final message from a loved one. It’s intended to be the latest, most up-to-date version of what they want to say and what’s important to them, conveying those values that we were discussing before.

The letter of instruction may also address charities they like, as in, “Please, I loved the library, make sure that the library gets some money.” Or maybe there are tangible assets like that autograph from Bruce Springsteen that’s been on the wall all these years, who is really going get it?

There are other things, usually more mundane but very important things, such as usernames and passwords and final arrangement wishes. Sometimes people say, “Be sure that the bagpipes are playing when they bring me down the church steps.” Animal care is another thing that’s usually important to people. And sometimes people want to write their obituary or write, “In my obituary say that I played third base for the coal mining team when I was 19 years old and just starting out life.” All that kind of stuff.

This may not be everybody’s cup of tea, but you want to be sure that you give your loved one the opportunity to deliver a letter of instruction that will be part of their final affairs.

One other important thing to address on the personal front is to make sure that all these documents we’ve mentioned are complete and up-to-date. Then you want to make sure that they’re all in one safe place, because you want easy access to them when the time comes.

Since you want them all in one spot and you want that spot to be secure, you might consider using a digital vault that will store electronically and securely all these important documents.

Okay, so that gets us through the heavy technical stuff for now. But many of you are probably thinking to yourself something like, “Wow, all right, but what about the stress and strain it puts on the rest of the family, especially me?”

Key #3: Caregiving Impacts the Rest of the Family – That Needs Planning, Too

That brings us to our key insight number three. Caregiving always impacts the rest of the family, in a big way. And that really needs planning too; it needs to be addressed. It can’t just be the unspoken elephant in the room.

Let’s take a look at some of the statistics. Becoming a caregiver is a likely occurrence for almost everyone. The latest AARP surveys says that there are 34.2 million elder caregivers in the US. That number is expected to grow as the population ages. And 75% of all caregivers are female, with an average age of 46, according to the Institute on Aging.

Deciding to become a caregiver is a huge decision, and sometimes it occurs suddenly when something unexpected happens to your loved one.

But remember, you’re not alone and it’s important that you recognize that the caregiving plan really must address the caregiver’s needs, too. Because when this stuff hits, it’s challenging. There are demands on your personal and professional life, there can be loss of income plus additional expenses, and stress at home and disharmony within the family. And almost inevitably, burnout and other emotional effects hit.

This issue needs to be addressed right from the beginning. As I said, it’s not an easy task, but caregivers often get caught up in delivering care, and feel that it is something they have to do. But it can cause them to forget about their own needs and wants as well.

Here we see the sad truth that caregivers are susceptible to depression and anxiety. 23% of caregivers have depression and 33% anxiety. Caregivers need to take care of themselves too, and be supported by the entire family.

Some of you here tonight are caregivers, and hopefully you know to stay on top of your health, to address your basic needs by getting rest and exercise. Don’t be afraid to ask for help. Look to join support groups. They are out there, and we can help you find them if you need assistance.

Caregivers and families may want to take advantage of services specifically aimed at their situation.

This could be something like getting a geriatric care or elder care manager involved. There are visiting nurses, in-home aides, adult daycare, and a variety of other services. It’s important that you’re aware of these services so that you consider working them into the caregiving plan whenever possible.

There are also organizations and services to help the caregiver. There are people who can organize healthcare information for your family and negotiate bill payments, others who locate and hire nurses and therapists, or schedule and attend doctor appointments, and others who run errands, cook, or offer companionship.

There’s also help available in the form of technology. The most well-known are personal emergency response services like Life Alert or GreatCall, where the care recipient wears a device where they can press a button and get help right away. These have really advanced in abilities and stylishness over the past several years, so I recommend that you look into them even if you think Mom would never wear it.

There are also medication reminders, medication being a critical piece of well-being. You probably already know of Skype and Facetime and other services that will let you check in and say hello. Finally, many websites or apps offer a digital vault to store medical information like your list of doctors and prescriptions and other things like that. Many technologies exist, and they do relieve some of the burden of the caregiver.

For some of you, the help we’ve discussed will enable you to preserve your job and this is a great thing. Keep working if it’s possible, although of course sometimes it’s not. If you are employed, inquire about benefits such as the Family Leave Act. The key piece is that you maintain communication with your employer about what’s going on.

So now you may be saying to yourself, we don’t have expertise in all these areas. How can we possibly start to address these complex issues, not to mention afford it?

Key #4: We Need a Team Approach to Produce the Best Caregiving Plan

That brings us to key number four, which is that we need a team approach to produce the best caregiving plan. This is everything in your loved one’s lives coming together at the end. It’s a lot of different things, from a lot of different disciplines, all coming together.

It’s easy to feel overwhelmed, and putting together all the pieces of the puzzle can be difficult and time-consuming. The most important thing is that you don’t take on the caregiving challenge alone, because you can’t, really.

It’s important to work with others in your family. As you build a team of people who can assist you and create this plan, you need to include other family members, the care recipient him or herself, and anybody else who provides emotional support. It’s a difficult time of life, and these are difficult issues, but nonetheless they have to be addressed.

You definitely want to seek professional advice when developing your caregiving plan. Your team at varying times will draw from people in various fields who are trained and experienced with addressing these complex issues. That will likely include financial advisors, an estate attorney or other attorneys, insurance experts, CPAs, geriatric care managers, and so on.

We’re getting close to finishing, so let’s review. You know the four key challenges. It’s a complicated stage of life for your loved one, and for you and the rest of your family. Not planning will increase the challenge and problems. The key issues that need addressing, we’ve run through them, are medical, legal, financial, and personal. And you know, it really does require a team approach to succeed.

Some of these things may be running around in your mind at this point because they’re common reactions when people sit down and look at all these issues.

Common reactions when people sit down and look at all of these issues

“I have never done this before and it is very complicated…”
“The stakes are too high here to ignore the issues – mom’s (or dad’s) health, wealth, and well-being need to be attended to.”
“I don’t have enough experience in health care for the elderly to manage these issues.”
“We’re going to need help understanding the financial issues or legal issues involved here…”

Getting Started with a Caregiving Plan

These are natural, so don’t be concerned. It is complicated, but it can be solved, so let’s talk about getting started with a caregiving plan.

I think you can see now that this stage of life is extremely complicated, and not planning ahead will bring on an array of difficult and painful experiences for the whole family. We know that it’s imperative to do all we can to guarantee continued good care for our loved ones. Some of them will have a long, slow, and relatively safe decline, while others will go through quick, shocking episodes of illness and deterioration. We’ve got to have in place the best, most workable plan.

It’s the one comprehensive way that everyone involved, all generations, can be assured that care for their loved ones will be handled well.

In the show notes and in the episode website page – agentofwealth.com/46 I have a link to the Best of Caregiving Resources Guide. It’s a 32 page document that has all of the forms, checklists, and documents you need to put together a caregiving plan.