Author Archives: Dianne Savastano

The Emotional Rollercoaster of Adult Care

Recently, I observed an interaction between a son, Josh, and a healthcare provider caring for his dad, William. Josh said to the provider, who was recommending a treatment protocol to William, “My dad refuses and so I let him refuse.”

It moved me.

We work with many adult children of older parents who hire us not only to help their parents, but to help them, too, as they take on more responsibilities and decision-making surrounding care. The emotional toll can be significant.

In Josh’s case, I sensed a feeling of resignation in his choice of words and tone. We had a discussion afterwards and he contrasted caring for his parents with caring for his children:

With children, he explained, you look forward to them becoming more independent and your goal is to lay the foundation for them to make good decisions in their own best interest. With aging parents, you watch them become less independent and you have a much harder time influencing their decisions.

“It’s not easy to change a dad who has always minimized everything a doctor has ever told him and seldom executed any recommendations, especially those geared toward preventive healthcare!”

A Range of Emotions

The emotional toll caregiving has on individuals cannot be understated; it can put a strain on even the most positive and capable individuals, like Josh.

Over time, I’ve seen him get angry with his parents, saying such things as:

“I just don’t get why you won’t go for a walk every day, just a short walk. You know, if you lose your mobility, you lose everything!”

Some days, his emotional response is one of frustration:

“Okay, I know I have to respect your wishes and I will, but I completely disagree with you. Because you know what, I find myself resenting the position you are putting me in because when you fall, or the inevitable crisis happens, I’m the one that will have to care for you. I certainly will because I love you with all my heart. But knowing something may have been preventable will eat away at me!”

In the many years we have supported families, strong emotions are often on display.

Sometimes, there is resentment by the adult child who takes on primary responsibility for the care of a parent, and whose siblings either don’t offer to help or question their judgement.

In more positive sibling circumstances, there is respect and gratitude, when each takes on what they do best and what they can contribute. One may be able to provide skillful hands-on care, while another admits feeling embarrassed to physically assist and so instead manages the finances.

In other instances, there are adult children who have been estranged from their parents. They never imagined the day when they would be forced to take on responsibility for a parent’s declining health and do what needs to be done — but without feeling any sort of satisfaction from the experience.

Still others confide that their parents had always been there for them, and feel it is a privilege to offer care now that the relationship has flipped.

And, of course, there are often feelings of guilt, either for not having done enough, or for not having done “the right thing.” Josh practically forced his parents to move when their environment became an unsafe one for his father, something he feels his parents have never forgiven him for. “Maybe I should have waited for the crisis to happen — then maybe they wouldn’t hold the move against me still.”

Finally, there is often a generalized fear about what the future may hold. “Things might be fine for now, but what happens when my dad can’t manage the medications and I have to figure out how to make sure he is taking the right things at the right time? I know he feels he’s losing control and I don’t want to make that worse. But if I don’t act, I fear what will happen next!”

Some Practical Suggestions

If any of these emotions resonate, here are some suggestions for managing them…

  • Have a conversation. If you can, try to talk about your feelings with your loved one. Josh and William always had a good relationship. As things were changing, they talked about feelings of loss and fear in the context of advice William had provided to help Josh raise his own kids. Honesty, without anger, goes a long way.
  • Find support. You don’t have to go it alone — confide in a spouse, sibling or close friend. There is a good chance that they have experienced similar emotions and can fully empathize with what you are going through. Recognize, too, that there are things you can control and things you can’t.
  • Share responsibilities. It’s hard to do everything. See if you can hand off some things to a sibling, grandchild, friend, members of the community, or even some paid assistance.
  • Acknowledge your limitations. Perfection is not possible. For example, you may make a commitment to walk away when angry… but then not succeed. In those circumstances, step away, reflect and, when you can, apologize, explaining to both yourself and your parents that you may not have been at your best when you became frustrated and angry. Parents are pretty good about forgiving children — chances are, they’ve done it many times before while raising us. As Josh confided to me during an upbeat moment, “I’ve tried to do my best for my parents. And I think I’ve done a pretty good job over the years!”

Summary

The emotions described above are real and they need to be acknowledged. And they are ever-changing, often daily.

Try to remember that caring for others in our lives can be incredibly satisfying, extremely negative, and a little bit of everything in-between. All of this is to be expected.

Common Misunderstandings Shared by Families in Crisis

It happened again last week.

I received a call from a distraught daughter, Jean, whose mom had suffered a stroke and was in an acute care hospital. Her mom was quite ill, experiencing several complications of the stroke, and had lost much of her functional ability.

Jean had flown home from a business trip, her sisters were planning to fly in over the weekend, and her dad was spending all his time at the hospital. Jean had two young children at home and a husband who was also traveling. Her family was under a great deal of stress.

Jean had received a phone call that morning from a hospital-based case manager . Apparently, the inpatient team had discussed her mom’s transition from the hospital to rehab and asked where she wanted her mom to go.

Jean was beside herself with anger and frustration:

How can “they” possibly be talking about my mom leaving the hospital? She’s still so sick!

What’s a case manager? I thought the doctor decided when a patient leaves the hospital.

Doesn’t insurance pay for 100 days in a hospital?

How do I know where she should go?

What’s rehab?

Can they just discharge her like that?

Many Common Misunderstandings

In these scenarios, there is a lot of information to assimilate in a very short time. The need for an appropriate plan of care intersects with Insurance/Medicare coverage and healthcare consumers who have never faced such a crisis may find themselves overwhelmed.

One common misunderstanding is the belief that individuals can stay in an acute care hospital for as long as the doctor wants them to.

In fact, there are certain criteria that any patient must meet to warrant an inpatient stay in an acute care hospital and for that stay to be covered by insurance. Some of those criteria are:

  • The patient must be admitted to the hospital on the recommendation of a licensed practitioner with authority to admit patients.
  • Medical records must contain sufficient information to justify admission and continued hospitalization. Detail is required to be sure that services are medically necessary, defined as, “Services or supplies needed for the diagnosis or treatment of a medical condition that meets accepted standards of medical practice.”
  • Medical records must document the admitting diagnosis and be dated, timed and authenticated properly by the ordering or attending practitioner in accordance with state law and hospital policies.

In terms of the discharge decision itself, physicians make recommendations as part of a team. Their responsibility is to outline an appropriate plan of care for the condition at hand, but they also need to be knowledgeable about the criteria that must be met for an inpatient stay — and work within those parameters.

In an inpatient environment, physicians work alongside case managers who have responsibility for working with an individual and family to plan for discharge. Discharge plans usually fall into one of the following categories:

  1. Discharge to home with no assistance; follow-up with their doctor as an out-patient
  2. Discharge to home with in-home services
  3. Discharge to an acute rehab setting for continued care
  4. Discharge to a skilled nursing facility (SNF) for short-term rehab
  5. Discharge to a long-term care facility (nursing home)

The first two categories are self-explanatory. It’s the last three that are confusing.

Discharge to an acute rehab setting for continued care

When an individual remains ill and requires the continuous oversight of on-site physicians and nurses, 24 hours a day, an acute rehab setting can be the next step. In such facilities, patients not only receive medical and nursing care, but they also receive rehabilitation services from physical therapists, occupational therapists, and speech therapists.

One requirement to be in such a facility is that the patient needs an intensive rehabilitation therapy program, generally consisting of three hours per day of therapy, at least five days per week.

Discharge to a skilled nursing facility (SNF) for short-term rehab

The transition to a skilled nursing facility may occur following a stay in an acute care hospital or an acute rehab setting.

In an SNF, physicians provide oversight but are not on site 24 hours a day. Nursing care, PT, OT and speech therapy is available, and patients are required to participate in rehab for 1-1½ hours per day.

Discharge to a long-term care facility (nursing home)

If someone reaches a plateau and stops making physical progress toward measurable goals, or if a person is unable to participate in rehab activities at all, case managers will seek out family members and discuss plans for the next transition. Sometimes, that leads to a long-term care environment for “ custodial” care.

Strict Criteria Apply

In all non-home scenarios noted above, insurance/Medicare coverage is always dependent upon meeting specified criteria for a given level of care. Objective and measurable goals are set for demonstrated physical progress and must be reassessed constantly. In an acute rehab setting or skilled nursing facility, as with a hospital stay, a case manager begins preparing for the next transition immediately upon admission.

As for coverage duration, families are often surprised to learn that “100 days of coverage” is not a guarantee, but rather a maximum number of covered days in a skilled nursing facility if one meets the required criteria along the way.

In an acute care hospital, original Medicare covers up to 90 days per benefit period and offers an additional 60 days of coverage with a high coinsurance. The 60 reserve days are available to you only once during your lifetime.

In all circumstances, one must meet the required criteria.

Summary

I know firsthand how stressful emergency situations can be. Family members who experience an acute hospitalization with a loved one are bearing great responsibility to support and advocate on their behalf. And, because these events are never planned, they require everyone involved to learn a great deal in a very short time.

Expect and ask for the information you need by developing open and positive relationships with all involved. The health care professionals you encounter desperately want to teach and assist, even when it may not feel that way.

The more you know and understand, the more qualified you will be to take control in these difficult circumstances.

Medicare: What You Need To Do Now

By Camille Barron

Once again, Medicare Open Enrollment Season is here. If you’re 65 or over, you’ve probably had enough of the mail and endless TV commercials promoting this or that Medicare product. It’s tempting to toss it all aside and keep the status quo. After all, your insurance has been working for you, so why change it, right?

Unfortunately, that approach is a mistake.

Each year, between October 15th and December 7th, you have a chance to evaluate your current Medicare plans and decide whether to stay where you are or change coverage. It’s important that you not overlook this opportunity.

The specifics of your coverage might not be the same as before and there could be costly consequences if you simply let your insurance continue without further examination. And, since this is a once per year event, if you don’t like what you end up with, you’ll have to wait an entire year to make further adjustments.

As a quick review, Medicare consists of several components. Listed below are each of these and what they cover.

Part A

Inpatient care, such as hospitalization, skilled nursing facility or hospice

Part B

Outpatient care, including office visits, outpatient surgery, lab work and testing

Part D

Prescription drug coverage

Part C

Known as Medicare Advantage, this packages Parts A, B and typically D into a single policy

Medicare Supplement

Also known as Medigap, this supplements Parts A and B, which cover approximately 80% of medical costs.

Depending on your coverage, there are important elements to be aware of:

1) If you have Parts A and B (AKA, “Original Medicare”), and Part D, combined with a Medicare Supplement plan:

Pay particular attention to Part D, your Prescription Drug insurance.

If you simply let your Part D plan renew, you may find yourself with higher drug costs or without coverage altogether on a certain drug.

It is estimated that more than half of those insured will experience premium increases if they remain with their current plan next year. This is because prescription drug insurers make changes to their drug formularies and pricing every year, affecting coverage, premiums and out-of-pocket costs.

In addition, changes at the federal level will alter the Part D Coverage Gap, also called the “Donut Hole,” in 2020. People who take expensive brand name drugs will pay approximately 25% of the costs of their prescriptions between the time they meet their plan’s initial coverage limit of $4020 and when they spend a total of $6,350. These limits increased in 2020 from $3820 and $5100, respectively. Those insured will have to spend more before their out-of-pocket costs drop to 5% in the Catastrophic phase. On average, this will translate into a price increase of $400 for many people.

Whether you’re happy with your Medicare Prescription Drug plan or not, it’s important to revisit your Medicare Part D choices every year. (We offer a Part D review to all our Medicare clients during Open Enrollment. If you haven’t signed up, now is the time.)

2) If you have Parts A, B and D, but no Medicare Supplement plan:

Pay particular attention to your potential for high out-of-pocket costs.

If you rely on Medicare Parts A and B for your medical insurance and forego adding a supplement, Medicare pays approximately 80% of covered medical expenses.

Once Medicare has paid its share, you are responsible for the remaining 20%.

While this cost-sharing arrangement may save money by eliminating the monthly premiums associated with Medicare Supplement plans, it places a financial burden on people with serious health problems.

Medicare does not place an upper limit on one’s out-of-pocket costs under Parts A and B. This means some individuals without supplemental coverage could face a significant financial burden because their 20% share is unlimited.

There is an additional risk for people who don’t have Medicare Supplement coverage. In most states (other than Massachusetts), there is an initial window in which anyone applying for this coverage is guaranteed acceptance regardless of health history. Anyone who waits until after that to apply needs to answer health questions. Depending on their responses, they may not be able to obtain coverage or may be accepted at a higher rate.

3) If you have a Medicare Advantage (Part C) policy:

Pay particular attention to whether you will have access to your current providers.

Medicare Advantage Plans (also known as Medicare Part C) are package policies that combine Medicare Parts A and B with medical insurance and, typically, prescription drug coverage. If you have a Medicare Advantage policy, your premiums are likely lower than what you’d pay for a Medicare Supplement.

That’s the good news.

Unfortunately, what you don’t pay in premiums is made up in out-of-pocket costs such as deductibles, copays and coinsurance which you pay at the point of service.

As with other Medicare products, Medicare Advantage plans may make changes to their premiums and out-of-pocket costs each year. People who have been satisfied with their coverage may find themselves spending more than expected when their policies renew.

Perhaps the greater risk individuals face by not looking closely at their Medicare Advantage plans is that their providers may no longer be in their plan’s network. Those with PPO (Preferred Provider Organizations) policies may continue to see their doctors but will pay a higher amount for an out-of-network provider. HMO policyholders have no coverage for going outside their plan’s network. For people with HMOs who are happy with their doctors, it’s a difficult decision between changing to a new provider or not changing, but having to pay the entire cost of their doctor’s visits themselves.

If you currently have a Medicare Advantage policy, make sure to examine the premium, deductible and out-of-pocket costs for both healthcare and prescriptions, to see if any of these have changed. And be sure to check the provider network to make sure your doctors and preferred hospitals are still in-network.

Conclusion

It can be overwhelming and confusing to navigate the changes to Medicare. But it could be costly to keep the status quo.

We encourage you to spend the time revisiting your Medicare Choices for 2020, during the Annual Open Enrollment Period (October 15th through December 7th), to make sure you are getting the best value for your insurance dollar. If you need help, please contact us.

Recommended Reading: Long-term Caregiving

One challenge Jack encountered was that Bill was seeking care from multiple health systems; his medical records were not easily accessible in one place. Jack is considering the use of a tool called Backpack Health.

Backpack Health is a mobile and web tool that makes it easy for individuals to manage, own and share health information for themselves and their families.

App users can link their Backpack Health profiles to patient portals, making it easier to keep track of both clinical and personal health data.


The (Possibly) Forthcoming Elder-Care Revolution is a sobering article about the politics of long-term caregiving. An excerpt:

“Levitsky found that the lack of public outcry for long-term care didn’t reflect an absence of need. Instead, it was driven by a widely held belief that caregiving is a family responsibility, tied up with what it means to be a good son or daughter. And because it’s so time-intensive and takes place in the home, caregiving is often extremely isolating, making it hard to see it as a systemic issue.”

Read the full article, here.

Recommended Reading: Food as Medicine and others

This is a terrific example of the impact lifestyle changes can make on one’s health. Food as Medicine!


The identification and management of Urinary Tract Infections (UTIs) in older adults is something we manage all the time. It requires patience to adequately diagnose and treat. This article highlights some of the challenges with options for treatment.


Elder Abuse is a growing problem. This piece highlights the impact of the lack of resources to deal with the demand for services.