Critter Corner: Nursing Home Preparation

Dear Baxter,

My father will be moving to a nursing home next month. What do you suggest we do to prepare for this big move?

Thanks!

Bea Forehegos

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Dear Bea,

The move to a nursing home is more like a journey than an event, for most residents, caregivers, and families.  After you have chosen a facility, it is wise to do as much preparation as you can. Some things you might consider are as follows:

● Make a list of all the requirements that will come from the nursing home, and try to see what can be done before admission.

● Make another list of all the things that the move will entail — who has to be contacted or what services have to be shut off or relocated.

● Become informed — Read as much as you can on the subject and discuss your fears and concerns with others who have gone through the experience before. Try to have an understanding of what your rights are with regards to nursing homes and care. One of Mr. Farr’s books, The Nursing Home Survival Guide, is a good resource.

● Make a plan for the move — how it is going to happen, what will be taken, who will organize the resident, or who will even tell him or her that it is happening.

● If you are the caregiver and/or a family member, make a plan for yourself as to what kind of support you will need during this time, and the time immediately following it. Sometimes when a room or bed in a nursing home becomes available, you have very little time before the move.

● If there are several family members who are involved in the caregiving, it might be wise to have at least an informal meeting as the process is unfolding, so that everyone is caught up and on the same page. Be prepared for the fact that not everyone will handle this process emotionally in the same way, even if you are all agreed that it is necessary. If there are divisive issues about money or care, you may have to get professionals involved to protect you and your loved one. Please see our trusted referrals for names of local professionals that can help!

Emotional preparation

Prior to the move, the prospective resident should be involved in as much of the decision-making as possible. Fear of the unknown can make an admission more difficult. Both the caregiver and resident should be able to spend some time in the facility, with the staff, other residents, and other family members until some kind of comfort is developed. That could mean, if allowed, going to activities, having a meal there once a week or a couple of times, going to the family council or family information night meetings, or meeting with the  activities  director before admission.  Add many facilities, there is a chance to experience this type of preview by using temporary respite care services at the facility. In some cases, more cognitively aware residents can go to a resident’s council or be “buddied up” with a present resident.

If your father has not done Long-Term Care Planning (even when he is already receiving long-term care), please call Mr. Farr to make an appointment for an initial no-cost consultation.

Hope this is helpful!

Arf Arf,

Baxter

Overcoming Emotions: Moving Mom to a Nursing Home

Q. My aging mother has lived in her home since I was a child. My family loved the neighborhood so much that we never moved, and when I got married and had my own family, we bought a house a few blocks away. Now, dad’s been gone for many years, and mom has had home health care for the last several years, along with me acting as her primary caregiver. But now, mom’s dementia has gotten worse to the point where she’ll likely need nursing care in the not-so-distant future for her physical ailments and mental decline.

In my opinion, a bed in a facility with 24-hour supervision would ensure greater safety for her — but at the same time — less freedom for her and more guilt for me. My wife, siblings, and most of mom’s close friends agree with my assessment of the situation. When I spoke with my mother about this, she also seemed to be accepting of the situation. Right now, I am feeling a mix of relief and sadness, and am having trouble overcoming the emotions involved with this move. It’s hard to accept mom moving out of the family home and into a nursing home, and it’s also hard to relinquish my caregiving role and admit failure. Do you have any suggestions?

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A. Many family caregivers become emotional over nursing home placement. Some regard it as a failure to care for a loved one, while others see it as the ultimate loving and responsible act when safety becomes paramount. Some hold both views and feel powerfully conflicted.

A five-year study explored the effect of long-term care placement on 180 family caregivers (Schulz et al., 2004). Family caregivers were assessed both before and after their relative was placed in a long-term care facility to determine the impact of this transition on the caregivers.  Despite the anxiety, stress, and negative perceptions of the situation that many of them had beforehand, the following occurred for the majority of the caregivers:

● Involvement with Loved Ones: Caregiving family members remained highly involved with their relatives following admission to a long-term care facility. Following placement, about half of spousal caregivers visited daily and an additional 45% reported at least weekly visits. Among non-spousal family caregivers, a quarter visited daily and an additional two-thirds report weekly visits.

● Performing Caregiving Tasks: The majority of caregivers who visited their relatives on a regular basis performed tasks similar to those carried out when the care recipient was living at home, such as managing money, arranging medical care and transportation, and providing social support. More than 50% of both spousal and non-spousal caregivers report participating in the physical care of the resident.  In addition to visiting and participating in care following placement, family caregivers took on new tasks such as interacting with administration and staff of the facility as the advocate for their loved ones.

● Anxiety/Stress Relief: Family caregivers continued to experience some stress (but to a lesser degree than before), despite favorable impressions of the care their family member was receiving and an improvement in their own social life.

How to Deal with the Stress and Anxiety

Most caregivers feel it’s a privilege to care for their loved one, and don’t necessarily want to be relieved of the job of providing the care, even if it’s physically and emotionally draining, but often it’s inevitable. Acknowledging the possible mix of emotions including grief, loss, guilt, and relief, may allow for a healthier adjustment after nursing home placement of a loved one.

Here are thoughts for dealing with the many emotions that arise around this difficult family decision:

● Try looking at the situation differently: Rather than focusing on “your failure as a caregiver,” understand that sometimes professional care is necessary for the safety or comfort of your loved one and/or for you to have some life apart from caregiving.

● Acknowledge that you’re coping with a significant adjustment: While this doesn’t change the situation, it can help to give yourself permission to pause and understand the challenge you’re facing.

● Practice letting go: If your loved one is being well cared for, do what you can for your loved one, and then move forward with your own life.

● Reassure yourself that your job is to provide the right care:  The “right” plan should meet a parent’s needs now and in the future, while taking into account the needs and capabilities of other family members. If the care that best meets that formula is nursing home placement, then that is the prudent choice for everyone.

● Help your loved one adjust to the facility: Work together to identify meaningful activities and routines for her to help facilitate the adjustment.

● Find little, and perhaps new, ways to express your care and love. Maybe you can bring the newspaper, pictures of your kids, or flowers to your mom to brighten up her room.

● Know that caregiving changes but continues: You may no longer need to administer your mother’s medication or cook her meals, but you can still make sure her nursing home room is clean, her nurse’s aides are responsive to her, and that she is reasonably content. You can still help your mother live as fully and safely as possible as she ages.

Medicaid Complexity in Virginia and other States

Nursing homes in the metro DC area cost between $10,000 – $12,000 a month. This amount is catastrophic for most of us. The Medicaid program is our country’s largest health and long-term care benefits program, covering one in six Americans, including 70% of nursing home residents and 20% of persons under age 65 with chronic disabilities. Unfortunately, Medicaid laws are the most complex and confusing laws in existence, and impossible to understand without highly experienced legal assistance. Without proper planning and legal advice from an experienced Elder Law attorney, such as myself, many people spend much more than they should on long-term care, and unnecessarily jeopardize their future care and well-being, as well as the security of their family. Please read the Medicaid Complexity page on our Website for more details.

Medicaid Planning in Virginia and other States.

Medicaid planning can be started while you are still able to make legal and financial decisions, or can be initiated by an adult child acting as agent under a properly-drafted Power of Attorney, even if you are already in a nursing home or receiving other long-term care.  In fact, the majority of our Life Care Planning and Medicaid Asset Protection clients come to us when nursing home care is already in place or is imminent.

To protect your family’s hard-earned assets from the disastrous costs of nursing homes in our area, the best time to create your own long-term care strategy is NOW.  Generally, the earlier someone plans for long-term care needs, the better.  But it is never too late to begin the process of Long-term Care Planning, also called Lifecare Planning and Medicaid Asset Protection Planning.

If you have a family member nearing the need for long-term care or already getting long-term care or if you have not done Long-Term Care Planning, Estate Planning, or Incapacity Planning (or had your Planning documents reviewed in the past several years), please call us to make an appointment for a no-cost consultation:

Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 202-587-2797

Medicare Recipients Will Be Less Vulnerable to Sticker Shock in Hospitals

Over the course of a day or so, Karen’s right arm began feeling weak and her speech began to slur. She was convinced she was having a stroke, so she called 911 and was rushed to the nearest emergency room. She remained in the hospital for nearly 48 hours to undergo testing, since it was unclear whether she had a stroke, a fainting spell, or something else. She assumed she was admitted, due to the longevity of the stay, the tests that were run, and the attention from physicians. It turns out she was in “observation status,” or an outpatient designation used to monitor patients during periods of medical uncertainty. She found this out the hard way, when she received a hefty bill in the mail (none of which was covered by Medicare).

For Medicare beneficiaries such as Karen, hospitals are “observing” without admitting – sometimes for more than 48 hours. In the past, beneficiaries may subsequently receive short-term rehabilitative care in a skilled nursing facility, without realizing that Medicare will not pay for it and get stuck with out-of-pocket costs that can amount to many thousands of dollars. However, starting on August 7, a new law will go into effect that makes it mandatory for hospitals to notify patients whether they are in “observation status.”

The NOTICE Act Officially Goes into Effect in Less than a Month

Last year, President Obama signed the NOTICE Act into law, requiring hospitals to inform Medicare patients who are in the hospital under outpatient observation status that they haven’t actually been “admitted” to the hospital and what that means in terms of cost-sharing requirements and subsequent coverage eligibility.
The law aims to eliminate the confusion and surprise of out-of-pocket costs for Medicare beneficiaries who might not realize that simply spending the night in the hospital doesn’t make one an inpatient—and may leave one vulnerable to unexpected charges.

As a reminder, under the Notice of Observation Treatment and Implication for Care Eligibility (NOTICE) Act:

• Medicare patients who have been in the hospital for more than 24 hours are required to be notified of their status within 36 hours of when they start receiving services as an outpatient;

• Hospitals are required to provide patients with verbal and written notification of their status and will have one year to comply with the law from the date it is enacted;

• Hospitals must explain the individual’s status as an outpatient and not as an inpatient and the reasons why;

• Hospitals are required to explain the implications of that status on services furnished (including those furnished as an inpatient), in particular the implications for cost-sharing requirements and subsequent coverage eligibility for services furnished by a skilled nursing facility;

• Notices must be written and formatted using plain language and made available in appropriate languages;

• Notices must be signed by the individual or a person acting on the individual’s behalf (representative) to acknowledge receipt of the notification, or if the individual or representative refuses to sign, the written notification is signed by the hospital staff who presented it; and

• Clinicians will also have to explain how Medicare covers people under observation and clarify that a “non-inpatient” status may have personal cost implications. The law leaves out non-observation outpatients such as emergency room patients.

Although the federal law is set to go into effect next month, a handful of states have already written laws of their own requiring hospitals to notify patients of their outpatient status.

Be Advised: The Form Might Not Tell You All You Need to Know

When it comes to providing notice to patients, the newly required form is crucially important, as it should help observation patients avoid ugly financial surprises. However, according to AARP, the form that was recently unveiled by Medicare officials does not tell patients what they really need to know.

This is why AARP says the form falls short:

• It’s confusing: Most people will have an extremely hard time understanding the form- especially explanations of Medicare’s observation coverage rules.

• No personalized explanation of status: The cookie-cutter form requires only a generic statement on why doctors are not formally admitting the patient.

• Limited usage: Non-observation outpatients do not get the form, despite facing similar financial consequences as observation patients.

Fortunately, Medicare can still fix the form to give people under observation and other outpatients clear and meaningful information before the law goes into effect, and AARP is advocating for them to do so.

You Should Still Inquire About Your Status

Remember, form or no form, if you or a loved one are in the hospital for more than a day, be sure to ask hospital personnel what your status is. Keep asking because it can be changed from day to day. If you are told you are in the hospital under observation status, you can ask the hospital doctor to be admitted as an inpatient and explain the medical reasons that you need to be admitted. This will not guarantee anything, but it can’t hurt.

Medicaid Planning in Virginia and other States.

What if you or a loved one need long-term nursing home care now or in the future? To protect your hard-earned assets from these catastrophic costs, the best time to create her own long-term care strategy is NOW. If you have not done Long-Term Care Planning, Estate Planning, or Incapacity Planning, please call us as soon as possible to make an appointment for a no-cost initial consultation:

Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 202-587-2797

Critter Corner: New Mental Health Bill Introduced in Congress

Dear Commander Bun Bun,

I am a caregiver for my brother, who has schizophrenia. I heard something about a bill to help caregivers like myself and those with mental illnesses. Do you know anything about it, and if so, can you provide information?

Thanks,

Bill Forus

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Dear Bill,

Nearly 10 million Americans have serious mental illness (schizophrenia, bipolar disorder, and major depression); but millions are going without treatment as families struggle to find care for loved ones.  Last week, the House voted 422-2 in favor of HR 2646, the Helping Families in Mental Health Crisis Act to help with the situation.

The Bill, which is driven by Tim Murphy, R-Pa., a clinical psychologist, is a huge step toward the first major overhaul of the federal government’s approach to mental health in years. Murphy, backed by advocacy groups all over the country, is focused on changing federal policies that make it difficult for family members to get help for a troubled relative.  Since the Sandy Hook school shootings in 2012, Murphy has lobbied his colleagues to focus more attention on early assessment and intervention.

The bill, if passed into law, would:

● target resources where they can best improve the mental health system;

● push for more dollars to combat serious mental illness;

● establish greater accountability measurements to make sure funding is used effectively, and that outcomes are improved;

● give judges an easier path to require treatment;

● amend privacy laws to make it easier for caregivers to seek treatment for mentally ill patients;

● address effective discharge planning to ensure a timely and smooth transition from the hospital to appropriate post-hospital care and services;

● provide additional psychiatric hospital beds for those experiencing an acute mental health crisis and in need of short term (less than 30 days) immediate inpatient care for patient stabilization;

● advances early intervention and prevention programs;

● provide community-based alternatives to institutionalization for those with serious mental illness, such as assisted outpatient treatment and other assisted-care community approaches;

● focus on suicide prevention;

● advance integration between primary and behavioral care; and

● increase program coordination across the federal government.

The Bill was passed by the House and was received in the Senate on July 7. Read more about the Bill here.

Hop this is helpful,

Commander Bun Bun

Help! My Husband Was Recently Diagnosed with Bipolar Disorder

Q. I was 25 years old when I met my now husband, Elliot. We became best friends and two years later, then we got married and had a baby. Fifteen years and three children later, I began to notice lots of changes in his personality and mood. He agreed to see a psychiatrist, got a second opinion from a neurologist, and ultimately his diagnosis was Bipolar II. Our marriage was thrown for a ride, with a lot of sleepless nights, thoughts of divorce, and lessons learned about trying to keep loving someone with this kind of mental illness.

Elliott’s diagnosis threw a real wrench into our lives and our planning, but I love him and want to care for him and work it out. I know you mentioned once that you have a family member who was in a similar situation. Do you have any suggestions for us, and how we can plan for the future?

A. Twenty million American families have at least one family member with special needs, including my own family.

Bipolar Disorder, also known as manic depressive illness, is a mental illness characterized by mood swings between the two psychological pulls of depression and euphoria. Bipolar II is a milder form of the disorder that is characterized by longer low periods and less dramatic manic periods.

A recent report showed about 6 million people (2.4% of people worldwide) have had a diagnosis of Bipolar Disorder at some point in their lifetime and that the U.S. has the highest lifetime rate, at 4.4%. According to Dr. Igor Galynker, director of the Family Center for Bipolar Disorder at Beth Israel Medical Center, there’s hope for most who have been diagnosed with Bipolar Disorder. “It is not curable, but it is treatable with medications and psychotherapy,” said Galynker. In other words, people with Bipolar illness, such as one of my close family members, can have productive lives like anybody else once they’re in treatment and compliant with treatment.

Caring for a Loved One with Mental Illness

Currently, as many as 8.4 million Americans are providing care to an adult with an emotional or mental health issue. In fact, according to AARP, there are about as many family caregivers of adults with mental illness as there are family caregivers of adults with dementia.

AARP reports that these mental health caregivers don’t often share their stories, because in some circles mental illness still carries a negative stigma and family members want to protect their loved ones from stereotypes and potential discrimination. Half of these caregivers say it is difficult to talk about their family member’s illness with others and that they feel alone.

This dynamic is confirmed in new research conducted by National Alliance for Caregiving (NAC) in partnership with Mental Health America and the National Alliance on Mental Illness (NAMI). Since not many real life accounts are available, the findings offer a look into what those who care for a loved one with mental health issues can expect based on participants’ responses:

• Mental health caregivers spend an average of 32 hours a week providing support, compared to 24 hours that the average caregiver spends. That is a whole eight-hour workday more.
• The duration of their caregiving is more than twice as long (nine years compared to four).
• Mental health caregivers help with medications, shop, make meals, arrange transportation, manage paperwork, search for services, make appointments — and more.
• Half say that the care recipient is completely or significantly dependent on them for financial support. It is no wonder that they report higher levels of financial strain than non-mental health caregivers.
• 3 out of 4 report high levels of stress.
• It is often difficult to find even basic care from a clinician with mental health expertise, or at least one with a basic understanding.
• The majority of people receiving care (58%) are between the ages of 18-39 and it is often a parent taking on care of the adult child (45%).
• The main conditions requiring care are bipolar disorder (25%), schizophrenia (25%), depression (22%), and anxiety (11%).
• The majority of caregivers (55%) reported that they were included less than they felt they should have been in care conversations with their loved one’s providers.
• Caregivers indicated that the most helpful policies or programs would be mental health service coverage parity (31%), care navigation (30%), and caregiver education (15%).
• About half of mental health caregivers reported that their loved one was sent home “too early or too quickly” from the emergency room, hospital, or other facility after a mental health crisis situation (49%).
• Nearly half (48%) of caregivers said it was difficult to talk with others about their loved one’s mental or emotional health issues.
• Four in 10 caregivers struggled to find an accurate diagnosis for their loved one.
• Families whose loved one had found an accurate diagnosis reported that it took 11.8 years, on average, to get there.
• Treatment is also an issue. A majority of caregivers found that it was difficult to find the right drug and dose, and fewer than four in ten caregivers (37%) reported that their loved one’s medication was effective in providing the help they need.
• Caregivers noted several barriers to accessing health care services and long-term services and supports, including day programs, peer support, case managers, in-patient treatment centers, and low availability of services in rural areas.

Resources for Caregivers of Loved Ones with Mental Illnesses

Family caregivers for adults with mental illness face remarkable challenges providing appropriate support for their loved ones. Family members often feel responsible, or may be held responsible by legal and social service systems. The burden of care can be substantial, and often lasts a lifetime for committed family members, including parents of adults with mental illness, spouses, partners, siblings and, with later onset disorders, children. Here are some resources:

• A summary of interventions available to assist caregivers for adults with mental illness and other family members has been developed by the Family Institute for Education, Practice and Research
• Education, training, and support services are available through the NAMI.
• A website for children in a household with a mentally ill member from the Mental Health Association of Southeastern Pennsylvania.
• The University of Illinois at Chicago offers the Journey of (JOH) Family Education Course.
• Caregivers and Mental Illness: Living with Schizophrenia (World Federation for Mental Health, 2014) considers caring for those with severe mental illness across the lifespan, including a section on caregivers of older adults.

Special Needs Planning

A Special Needs Trust or a variant called a Sole Discretion Trust is often an essential tool to protect a mentally ill individual’s financial future. This type of trust preserves legal eligibility for federal and state benefits by keeping assets out of the mentally ill person’s name while still allowing those assets to be used to benefit the mentally ill person. Read more here.

When it comes to special needs planning and guardianship, you want to ensure that your family member with mentally illness will remain financially secure even when you are no longer there to provide support. A Special Needs Trust is one type of vehicle that provides funds with which a mentally ill person can maintain his or her quality of life, while still remaining eligible for needs-based programs that will cover basic health and living expenses. But many people with mental illnesses such as Bipolar Disorder are never officially declared to be “disabled,” and that’s where other types of trusts such as the Sole Discretion Trust is often more appropriate for this type of special needs planning. We invite you to make an appointment for a free initial consultation to learn more about special needs planning:

Fairfax Special Needs Planning: 703-691-1888
Fredericksburg Special Needs Planning: 540-479-1435
Rockville Special Needs Planning: 301-519-8041
DC Special Needs Planning: 202-587-2797