The Starter Guide to Family Caregiving - A Comprehensive Olera Guide

Article Summary

This article provides a comprehensive guide to family caregiving, offering resources and tools to help caregivers get started.

Key takeaways:

1. Prioritizing one's own care is essential for long-term success as a caregiver.
2. Caregivers should make a plan to meet their own basic needs.
3. Examining underlying beliefs and barriers can help caregivers better understand their own needs.

Introduction

Getting started as a caregiver can be daunting. From financial considerations to medical care planning, there’s a lot of ground to cover. It can be hard to know where to even begin!

We’ve compiled this guide in order to lay out some helpful resources and tools that can help you along your journey. This comprehensive guide offers all the basic information in one spot.

There's also a quick-start version intended for those who are mainly after the big picture at this point.

As you read through, just take what feels right to you and leave the rest – at least for now. It may be helpful to revisit the guide later and see what stands out to you then.

Table of Contents

1. Be Your Own Caregiver: Commit to Your Own Care
2. Learn What to Expect
3. Have the Hard Conversations
4. Make an Advance Care Plan
5. Assemble a Team
6. Develop a Care Plan
7. Identify Financial – and Other – Resources
8. Organize Responsibilities with Checklists
9. Sources and Further Helpful Reading

Be Your Own Caregiver: Commit to Your Own Care

There’s a reason prioritizing your own care is listed first. Taking care of your own physical and mental health is absolutely critical for long-term success as a caregiver!

Protect Your Health – and Your Ability to Provide Good Care

There are endless examples and piles of research about the negative effects that can occur when you neglect your own needs in order to meet the needs of your loved one.  Caregivers are significantly more likely to experience negative physical and mental health conditions including:

• Stress
• Anxiety
• Depression
• Exhaustion
• Chronic health conditions
• Substance dependence or abuse
• Frustration, guilt, anger, and other difficult emotions

The blunt truth is that if you neglect your own needs, you simply won’t be able to care for your loved one as well as you can when you’re healthy and whole. And the more stressed, sleep-deprived, and run-down you become, the harder it is to keep a clear perspective, make a plan, or respond as needed when life throws you a curveball.

Set Yourself Up for a Successful Caregiving Experience

Research tends to emphasize the negative effects of caregiving, with good reason, because they’re widespread and can be very serious!

However, there are also a lot of caregivers who cope really well with their responsibilities. They report little or no strain from their caregiving tasks. They tend to view caregiving as an overall positive experience that gives them a sense of pride, purpose, and other benefits that outweigh the hardships.

A wide range of factors affect how stressful family caregiving can be, and many of these are simply out of your control. For example, higher stress tends to occur for caregivers who:

• Feel they had no choice in whether or not to accept a role as a caregiver.
• Have a strained relationship with their loved one.
• Provide care for a loved one with dementia.
• Have poor coping skills or little support.

Regardless, you can reduce the stress and risks associated with caregiving by seeing to it that your own needs are met and that you have the knowledge, support, and resources you need to do the job.

Start by making a conscious decision that, not only will you be your loved one’s caregiver, you’ll be your own as well! By doing so, you set up yourself – and your loved one – for the best possible outcome.

Make a Plan to Meet Your Basic Needs

Just as you’ll tend to your loved one’s physical, mental, social, and emotional needs, being your own caregiver means that you’ll ensure your own basic needs are met on an ongoing basis.

• Get plenty of sleep
• Exercise daily (even 5-10 minutes of physical activity is better than none)
• Eat a healthy diet
• Make and keep your medical appointments, including preventative care
• Tell your doctor that you’re a caregiver, and share any concerns you may have
• Arrange for regular breaks or periods of respite
• Seek social support for yourself
• Set up ongoing spiritual and emotional support.
• Some people find that routine support from a therapist, spiritual leader, or a good friend is helpful. Others prefer writing in a journal, making time to pray or meditate, or spending time in nature daily.
• Pay special attention to your emotional health if you:
  • Struggle with watching your loved one suffer, change or decline.
  • Have difficulty meeting everyone’s needs.
  • Find life extra-demanding these days.

Create a Healthy Routine

Create a routine that supports your health, so that to the extent you can, you’re doing it without a lot of thought. This will put you in a better place more often with less effort.

It may also help to do one or more of the following:

• Set up a weekly check-in with a therapist or good friend to help keep you on track.
• Schedule time for health, relaxing or restorative activities in your calendar.
• Include “caregiver support” in your loved one’s care plan and support team.
• Create your own care plan and support team.

Examine Any Underlying Beliefs and Barriers

One of the hardest, yet most important, steps for many family caregivers is to examine underlying beliefs that may be operating below the surface, often without any conscious awareness. Common beliefs that many family caregivers share include:

• “It’s selfish to put my needs before my loved one.”
• “No one can take care of my loved one as well as I can.”
• “I’m the only one who can/will do this.”
• “I owe it to my loved one to do this.”

Many underlying beliefs aren’t ever put to words. Commonly shared emotional barriers for caregivers include:

• Being unaware of their own needs.
• Feeling afraid – or unsure about how – to ask for help.
• A deep-seated feeling of inadequacy or unworthiness.

Examining these types of deep, subconscious beliefs can be difficult and may be most successful with the guidance of a professional counselor.

Learn What to Expect

Understanding your loved one’s needs can empower you to better meet them, and it can be an important step in preventing problems before they arise. When you have a better idea of what to expect, you may feel more calm, capable, and in control – which can be a welcome feeling for a caregiver!

Get Familiar with Health Conditions

It’s important to learn about your loved one’s medical conditions so that you’ll know how to best support them.

• Research information online
• Talk to your loved one’s doctor or health care providers

Learn New Skills and Techniques

If your loved one requires support with mobility, personal care, wound care, injections, or other medical treatments, be sure that you know how to assist them safely. Without the proper knowledge, training, and equipment, they – or you – risk being injured.

• Talk to their health care provider and ask about training opportunities.
• Read online or take an in-person caregiving skills class.

Evaluate Home Safety

Make a point to evaluate the safety of your loved one’s home and learn about what’s needed to protect your loved one from an accident or crisis.

• Select one or more online checklists and perform a safety walkthrough yourself. Examples include:
  • Fall Prevention Checklist from the CDC
  • Comprehensive Home Safety Assessment from Franklin Templeton
  • National Institute on Aging’s Home Safety Checklist for Alzheimer’s Disease
• You may prefer to use an online app or service like Home for Life to call on an experienced eye and helpful advice.
• Talk to the doctor about a PT/OT Home Safety Evaluation – especially if there have been serious concerns about safety, falls, difficulty getting around the home, or changes in mobility.
• If a physician or primary care provider orders a home safety eval, Medicare may pay for a physical or occupational therapist to come to the home and assess for any changes that might be needed to keep your loved one safe in their environment.

Discuss Your Loved One’s Wishes

Talk to your loved one about their wishes regarding care, and their goals or priorities related to comfort, health, or treatment. Ask about what they consider important to a good quality of life so that you can support and advocate for what they really want if later they can’t. This might mean some hard or awkward conversations, but they’re often necessary – and worth it – to really understand their wishes.

Have the Hard Conversations

Discussing the tough topics with your loved one when they’re still able to participate and make their wishes known can alleviate a lot of conflict and heartache if a medical emergency should suddenly strike. Families who haven’t discussed these subjects ahead of time are often left scrambling to make decisions – and frequently not all agree about how a situation should be handled.

Depending on your circumstances you may need to discuss different concerns with your aging loved one. For example, if they’re relatively healthy, the discussion may proceed differently than if they’ve just survived a stroke, or have been diagnosed with dementia or a terminal condition.

Potential topics you might need to discuss include:

• Safety concerns
  • Driving
  • Need for home modification
  • Need to move or start in-home care
• Changes in memory or cognition
• Legal and financial issues
  • Financial vulnerability and potential for exploitation
  • Financial decision-making authority
  • Medical decision-making authority
• Health and medical concerns
  • Need for additional personal care support (perhaps due to incontinence, poor hygiene, weight loss, or other concerns)
  • End of life planning

These conversations can be so hard for a number of reasons. Many people fear and resist thinking about their own mortality. Others value their independence and resent the intrusion into their privacy. Many seniors don’t see any problem and really don’t want to talk about it.

Every situation is different, but here are a few general tips to consider as you think about starting a tough conversation. Choose those that feel helpful.

Set Conversations Up to Succeed

Give careful consideration to how you might set the conversation up for the best outcome. What’s the best time or place to bring it up? Find the right moments. Who should – or shouldn’t – be involved? Would your loved one respond best to a sensitive one-on-one conversation, or to having the whole family present?

Start Talking Early

It may help to use a story from the news, a book, TV show, or movie as a starting point to discuss the general topic of aging, health, and the importance of forward planning. If you or your loved one knows someone who has struggled in this area, this could be another powerful talking point.

Really Listen to their Point of View

You’re trying to understand what’s important to them, not convince them to change their mind (in most cases, anyway). To that end, it’s important to focus on listening and understanding their point of view. Don’t interrupt. Ask questions to ensure you understand.

Focus on their Quality of Life

Stay focused on what they feel is important for their quality of life. Do they want to avoid suffering at all costs? Is their independence so important that they’re willing to sacrifice some safety? Do they have a certain goal in mind that they want to accomplish, such as supporting their spouse or seeing their grandchild graduate from college?

Make an Advance Care Plan

Advance care planning is the process of learning about what kinds of medical decisions may need to be made in the future, preparing for them, and communicating one’s wishes to others.

Advance care planning lets your loved one make their wishes known in the event that they can no longer speak for themselves. It makes it much more likely that they will end up receiving the kind of care that they’d like, and it can alleviate a lot of stress and strife among members of the family.

Unfortunately, when tragedy strikes, families are all too often left struggling to figure out what to do – and often, not everyone is on the same page. Headache and heartache abound when family members disagree about how to handle tough situations. Because the unforeseen can happen at any time, starting the advance care planning process as early as possible is strongly recommended.

Learn About the Advance Care Planning Process

Helping your loved one with the advance care planning process entails:

• Learning about which decisions may need to be made should they become incapacitated
• Making decisions about possible future care scenarios
• Choosing who can manage finances, if they become incapacitated
• Choosing who can make medical decisions, if they become incapacitated
• Discussing these decisions and wishes with key loved ones
• Documenting the decisions in a legally-binding format
• Storing the original documents in a safe-yet-accessible place
• Providing copies of the documents to the healthcare proxy, doctor and medical providers, and other key people.
• Revisiting the documents/decisions periodically (every 10 years or so, or when there are changes in health or circumstance)

Document Advance Care Wishes

Once advance care decisions have been made, it’s vital to document them in such a way that they'll be honored by healthcare providers and financial institutions, should the need arise. The major documents you should familiarize yourself with are included here.

Understand Advance Directives

“Advance directive” is a term that can refer to any type of legal document that declares an individual’s wishes for their future medical care.

These documents vary from state to state. You can obtain your state’s basic advance directive forms from many health care providers, eldercare attorneys, state health departments, your local Area Agency on Aging or download them from:

• AARP
• CaringInfo
• Prepare

Prepare is a free service that aims to help make medical decision-making easier for people. It can be a good resource for those who need a little help walking through the process.

When creating an advance directive, it's a good idea to consult with your loved one’s doctor, geriatric care manager, or another health care provider who's very familiar with end-of-life matters.

When your loved one creates advance directives, they should:

• Follow their state’s requirements so that the advance directives will be valid.
• Discuss wishes with their health care provider, loved ones, and at least one person who will be able to make decisions for them should they become incapacitated (known as a health care proxy, agent, or representative).

TIP: Medicare pays for advance care planning discussions with the doctor through their annual wellness visit.

Some common types of advance directives are described below.

Durable Power of Attorney: A power of attorney (POA) document grants a person – called an agent – authority to act on your loved one’s behalf. This could allow the agent to manage bank accounts, sell property, file taxes and handle other financial matters. POAs are sometimes limited to specific matters or to a specific period of time.

A “durable” power of attorney remains in effect even if your loved one becomes mentally incapacitated.

A durable POA won’t allow the agent to make medical decisions about your loved one’s health. They’ll need a Healthcare Power of Attorney for that.

Durable Power of Attorney for Healthcare: A durable power of attorney for healthcare names the person who can make medical decisions for your loved one in the event that they become unable to do so for themselves. The person they name is called their health care proxy, representative, surrogate, or agent.

Your loved one should NOT just choose whoever happens to live closest to act as their proxy. It’s important to choose the right person for the job.

The person selected as a health care proxy should:

• understand their values and wishes.
• be willing and able to advocate for them in tough situations, if needed.

Living Will: A living will is a legal document that describes which types of medical treatments your loved one would – or wouldn't – want to be used to keep them alive should they become terminally ill or permanently unconscious.

Each state has its own forms and rules regarding exactly what’s covered in a living will. Generally, they address areas such as:

• Cardiopulmonary resuscitation (CPR) if the heart has stopped beating
• Use of a ventilator if unable to breathe
• Use of tube feeding (and for how long) if unable to eat or drink
• Dialysis to remove waste from the body if kidneys aren’t able to do so
• Antibiotic or antiviral medication to fight infections
• Pain management
• Comfort Care (supporting comfort as the end of life nears)
• Organ, tissue, or body donation

POLST: A POLST is a document intended for individuals who are seriously ill, very frail, or near the end of their life. It is an order that must be signed by a health care provider such as a doctor or nurse practitioner. The POLST instructs other health care providers – such as paramedics or hospital staff – to refrain from life-sustaining treatment, such as CPR.

The forms vary from state to state. In some places they are called by other names, such as POST, MOLST, or MOST. They aren’t yet fully available in every location. You can find out more at the National POLST Directory, or talk to your loved one’s doctor about whether a POLST is available in your area, and whether it would be appropriate in your loved one’s case.

Assemble a Team

More and more, family caregivers are realizing that trying to do and be everything in a caregiving role is unrealistic. And, while the drive to do so may come from a noble place, the truth is that our loved ones generally benefit more from a team approach to meeting their needs.

Success lies in building a good quality care team.

The concept of a care team originates in the healthcare field. It’s the group of professionals who contribute their unique skills and specialties to the patient’s care. Rather than several individuals providing services separately, members of a care team must communicate with one other on an ongoing basis to collaborate and coordinate their efforts.

A good team approach is now widely recognized as a key component of delivering high-quality care to patients. And, now, more than ever, experts are recognizing the critical role family caregivers play on the care team.

Simply being integrated into an existing care team can leave caregivers feeling at the mercy of others. Instead, some family caregivers choose to consciously build a care team to support their loved one’s needs and preferences in the ways that work – and feel – best to them.

These caregivers take an active role in ensuring all members of the team are in communication and all on the same page in regards to their loved ones’ needs and wishes.

Consider Who’s on the Team

Each support team will be unique. They’ll be made up of a different selection of members, who participate to different extents, and with varying frequencies. Some team members may provide occasional expertise or advice, while others may be involved on a daily basis.

Some teams (or at least, key portions of the teams) find it works well to meet regularly. They appreciate the opportunity to go over any changes, share helpful techniques they’ve discovered, or otherwise realign themselves on the same page. Other teams don’t need such a high level of involvement, and may just check in with each other periodically, or as the need arises.

Most teams benefit from a leader who can oversee and organize the team. The leader may then delegate certain responsibilities to others based on their skills, availability, and willingness.

The size, makeup, and dynamics of your loved one’s team will likely evolve with their needs over time. It might include:

• Family members
• Friends
• Neighbors
• Members of your loved one’s church or faith community
• Charity or support programs
• Your loved one’s primary care provider
• Medical specialists
• Pharmacist
• Home care aides or privately paid caregivers
• Various therapists
• Adult day program staff
• Geriatric care manager
• Elder law attorney
• FInancial planner
• Hospice or palliative care team

Pharmacists

Pharmacists are underused resources that can offer great value to your loved one’s care team. Is your loved one falling or experiencing sudden or unusual changes in appetite, behavior, condition, or sleep patterns? Talk to their doctor of course, but the pharmacist can also offer valuable insight regarding any medications that might be playing a part.

Compile a list of every medication they take – including over-the-counter medicine and vitamins or supplements – and ask the pharmacist to review it for any concerns. Drugs often interact in unexpected ways with one another, and the medications may build up to toxic levels in older bodies much faster than in younger ones. Often the pharmacist can pick up on things the doctor might have missed.

Seniors taking more than five medications are at the highest risk for unintended, negative medication effects. It’s a good idea for them to get in the habit of requesting a comprehensive medication review from the pharmacist with each new prescription.

Many Medicare and insurance plans offer Medication Therapy Management programs at no cost – and, as a bonus, they can often identify lower-cost alternatives for the seniors they serve.

Home Care Aides

Hiring a home care aide strategically can be a very smart move. In addition to helping with personal care, home care can assist with transportation, shopping, errands, housekeeping, or companionship.

It can get expensive quickly, but using a strategic approach to scheduling home care help can ensure your loved one gets the most bang for their buck – and it can provide valuable opportunities for respite, extending your ability to give care at the top of your game.

For example, hiring a home care aide to take your loved one to church, a movie, or out to lunch each week can provide them with a valuable outing, and you with an opportunity to take a yoga class, unwind, or otherwise recharge your battery.

Therapists

Depending on your loved one’s conditions and needs, they could end up working with a variety of therapists. In many cases, the therapist will work with your loved one over a period of time. They can be very good members of your loved one’s care team during that period, providing feedback, advice, and guidance your loved one may need to reach their goals.

• Physical therapists can help them rehabilitate from injuries, manage chronic pain, or improve strength, balance, or mobility. Physical therapy can be provided in the home or in a special gym.
• Occupational therapists focus on helping people accomplish the things they want in spite of any disabilities or challenges. Through a combination of teaching skills, recommending special equipment, and other techniques, they help seniors with disabilities drive, dress, cook for themselves or otherwise become more independent and lead a more fulfilling life.
• Speech therapists work with seniors after a stroke or other condition that affects their ability to speak, but they also work extensively with those who have difficulty swallowing.

Seniors with swallowing difficulties may cough when eating or drinking. Other times, it can be less obvious, and it may look more like drooling, frequent heartburn, regurgitation, weight loss, or spitting out food. Talk to the doctor with any concerns. The doctor will order a speech therapy evaluation if needed.

• Talk Therapists, sometimes called psychotherapists, can be a great support for seniors who are struggling to adapt to difficult changes in their lives. Depression, anxiety, grief, and sleep issues are common challenges among older adults.

Look for a therapist who is experienced with the challenges of aging and the specific challenges your loved one is facing. Some therapists meet in person and others will meet over the phone or via video conferencing.

Without special permission, a therapist may not be able to discuss your loved one’s sessions with you. It may be helpful to look for a family therapist who specializes in helping adult children care for their aging parents. A skilled therapist can help everyone navigate changing roles and power dynamics, and facilitate communication both ways.

Lastly, don’t forget about the importance of talk therapy for you, as the caregiver! You may come to view your therapist as part of the caregiving team as you balance the load of responsibility, stress, and any emotional turmoil that may arise.

Day Program Staff

Adult day programs can be nothing short of a lifesaver for seniors with dementia and their families. Day programs offer supervised programs which focus on providing stable and therapeutic group settings, in which multiple seniors get together to socialize and enjoy meaningful activities. Because the same group usually meets over time, participants benefit from the opportunity to build relationships with others in similar circumstances.

Day programs can be a great source of support for family caregivers, and as professionals who are familiar with your loved one’s unique needs and circumstances, their staff can be a valuable source of information and insight for your care team.

To find a day program in your area, contact your local Area Agency on Aging (AAA), or use the Eldercare Locator.

Geriatric Care Manager

A geriatric care manager, sometimes called an aging life care professional, can be an outstanding addition to your loved one’s care team. A geriatric care manager is a professional – usually a nurse or social worker – who specializes in guiding seniors and their families through the aging process.

Geriatric care managers are familiar with the challenges of aging and are experienced in discussing difficult topics. They’re familiar with services and resources and can help create short and long-term plans for care and support needs. They can also help tremendously with communication and insight when family members live far away.

Elder Law Attorney

You may want to include an elder law attorney on your loved one’s care team if they have complex legal or estate planning needs or concerns about elder abuse or fraud.

Elder law attorneys can also help with a variety of other needs, such as Medicare, Social Security, or disability claims or appeals. However, in some cases, other types of financial planners can handle such issues for a lower fee.

Financial Planner

Getting your loved one’s financial future in order can be a critical part of developing their plan of care, and there are many types of financial planners that can help your loved one do just that.

A certified financial planner (CFP) is a popular choice because these professionals have demonstrated a high degree of education and experience as part of their certification, and they are bound by strict ethical standards. Eldercare resource planners, Medicaid Planners, veterans benefits advisors, registered financial gerontologists, and geriatric care managers are other popular options.

Palliative Care or Hospice Professionals

If your loved one receives services from palliative care or hospice, be sure to include their nurse, social worker, or other professionals on the care team!

Both palliative care and hospice emphasize comfort and seek to relieve suffering.

Palliative care is a resource for anyone living with serious illnesses such as heart failure, cancer, or dementia. The palliative care team supports the patient and family’s medical, emotional and social health, and ensures that they understand the various options available to them.

Hospice is a Medicare-supported service for individuals believed to be within the last six months of their life. Many people wait for the final few days to bring in hospice, but starting the service earlier is strongly recommended when possible. It can mean the difference between a rough and rocky road, and a supported, peaceful end-of-life experience – for the person on hospice and their family.

Both hospice and palliative care are exceptional programs that tend to be greatly underused. Talk to your loved one’s doctor to find out if a referral would be appropriate.

Ask for Help from Friends and Family

It’s really hard for some family caregivers to ask for help – or even to accept help when offered. For some, it’s due to deep-seated beliefs about self-sufficiency or other issues. For others, the problem lies more in feeling generally overwhelmed or unclear about where to start or how to go about it.

Identify any barriers

The first step in asking for help is to understand what, if anything, might be stopping you from doing so. What are your barriers? Understanding what they are can be an important part of overcoming them.

Define all the needs

The next step is to determine what, exactly, the needs are. Write down any tasks, or specific areas where you could use help.

• Handling finances
• Paying for care
• Transportation
• Medical appointments
• Respite care
• Bathing or personal care

Be as specific and complete as possible, so that when someone is willing, you’re ready with options for exactly how they could choose to help.

TIP: If you’re short on time and energy, consider which of the things you do tire you out and which energize you. Enjoy cooking but hate shopping? Dislike washing dishes, but enjoy walking the dog? Those that sap your energy should be added to your list of things you’d like help with.

Consider potential helpers

Think about who might be able to help out with some of the things you listed. Don’t limit yourself as you initially brainstorm potential helpers.

As you decide on who to ask for help from, lean towards those who will contribute positive energy, and a patient, flexible attitude.

Make specific requests

When asking for help, it often works best if you can be very clear about exactly what you need, how long it will take.

Online caregiver communities – such as CaringBridge or Lotsa Helping Hands – can also help organize and coordinate care. These types of sites can assist caregivers in many ways, such as allowing you to post tasks that family members can sign up for.

Develop a Care Plan

Each member of the team plays a unique role in supporting your loved one. A care plan is a document that describes each member’s role, along with your loved one's needs and preferences regarding their care and activities.

A good care plan can help the team communicate and coordinate appointments or services.

It can ensure everyone – your loved one, any family members, health care providers, and other supporters – are all on the same page.

Care needs can change suddenly when a crisis strikes and having your ducks in a row can go a long way toward reducing stress and disagreements later on.

Care plans can be a powerful tool for organization and communication throughout the care team. You can download Olera’s care plan template to get started.

Identify Financial – and Other – Resources

There are many types of resources available, but finding them isn’t always easy or straightforward. What’s available often varies according to your situation or location. Luckily, there are a number of resources for helping you find resources – we’ve compiled many of them here for your convenience.

Seek Community Resources

Each community has its own selection of senior supports and services, such as transportation services, Meals on Wheels programs, financial assistance, day programs, and many other helpful resources. These tools can help find what’s available near your loved one.

• Your local Area Agency on Aging
• Community Resource Finder
• Eldercare Locator

Find Financial Assistance

Talk to your loved one’s financial planner to determine which options may be right in your situation.

Annuity

Purchasing an annuity from an insurance company can guarantee a regular monthly payment for the rest of your loved one’s life, but it might not be worthwhile for seniors in poor health or who don’t expect to live a lot longer.

Employer-Based Programs

Just a few states offer paid family leave at this time, and not all employers or employees in those states are automatically eligible for coverage. However, there’s a lot of attention on the need for family caregiver benefits these days, and many companies are taking note.

So, if you work for an employer, it’s worth asking their human resources department if they have any paid leave options or other programs for family caregivers!

Other programs that employers may offer to caregivers include:

• Flexible working hours
• Work from home options
• Job sharing
• Unpaid or personal / vacation time off (including federally protected time off through FMLA)
• Reduction to part-time work status
• Counseling services
• Educational classes on caregiving topics
• Subsidies for elder care services
• Caregiver support groups
• Flexible spending accounts
• Access to digital tools to help with caregiving, such as
  • Atlas of Caregiving’s Care Map
  • Care Coordination Technology to Manage Home-based Care I CareGeneral
  • Care@Work Employee Benefits Programs
  • Care3

Free Medical Transportation

The Medicaid program will provide transportation to medical appointments for eligible individuals. Typically Medicaid beneficiaries are considered eligible, but not all appointments are considered necessary, so check with your Medicaid caseworker or state Medicaid office to be sure.

Other community programs also offer transportation benefits at times, so check with your local Area Agency on Aging or the Eldercare locator if your loved one would benefit from transportation support.

Long-Term Care Insurance

Since Medicare and health insurance don’t typically cover the costs of long-term care, some individuals have chosen to purchase long-term care insurance for this reason.

LTC insurance policies and benefits vary greatly. They may cover some or all of the costs of:

• Skilled nursing care
• Residential care in a setting such as assisted living or adult foster home
• Adult day programs
• In-home care

It’s rare, but sometimes LTC insurance policies will pay family caregivers for in-home care.

If your loved one has already purchased LTC insurance, be sure to examine their policy closely, or meet with their agent, to ensure you fully understand what is covered, and what criteria must be met before any benefits are paid out.

If your loved one doesn’t already have LTC insurance, the premiums are likely to be unaffordable, if they’re even available at all.

Medicaid

Medicaid is often confused with Medicare, but the two are entirely different programs. Read a little more about the basics of each here.

Medicaid is a program for low-income individuals run jointly between the federal and state governments. The name of the program, and many other specifics vary from state to state. Find contact information and any alternative name of your state’s Medicaid program here.

Medicaid is primarily a health insurance plan for individuals with very low income and few resources. Medicaid also pays for nursing home care for eligible, low-income individuals as well. Under limited circumstances, they may also pay for other long-term care options with their long-term care waiver program.

Medicaid’s self-directed personal care assistance programs may pay family caregivers for their services in certain circumstances. These programs are sometimes called Cash and Counseling Programs or have other specific names in different states.

Medicaid is an incredibly complex program with an ever-evolving set of rules that vary tremendously based on your situation, state of residence, and even how you choose to apply.

The vast majority of recipients don’t immediately qualify for Medicaid. Most work with an advisor to help them achieve eligibility. However, individuals with less than $2,000 in countable assets, and less than $2,000 per month in income, can usually apply directly, without assistance.

Medicare

Medicare is a government-provided health care plan for seniors and certain people with disabilities. There are four distinct parts of the program, and your loved one will need to select one of many coverage options.

• Part A - Hospital insurance includes hospital inpatient care, skilled nursing care, and hospice services.
• Part B - Medical insurance covers services from doctors and health care providers, outpatient care, preventative treatment, and durable medical equipment (for example, wheelchairs, walkers, or hospital beds)
• Part C - Medicare Advantage Plans may offer extra benefits or lower costs than Original Medicare (Parts A and B), but there are fewer medical providers in their network. Your loved one will need to choose between Original Medicare and a Medicare Advantage Plan.
• Part D - Drug Coverage Your loved one will need to select one of many Medicare drug plans (unless it’s bundled in their Medicare Advantage plan).

There are monthly premiums, copayments, deductibles, and other out-of-pocket costs with Medicare, and Original Medicare doesn’t limit how much your loved one might pay out of pocket each year. Because of this, many seniors opt for supplemental coverage – known as Medigap – for these costs. Medicaid can provide supplemental coverage for eligible low-income individuals.

Medicare eligibility is primarily based on age, so most American citizens and permanent residents are eligible once they reach age 65. You can use this official U.S. government calculator to determine whether your loved one is eligible for Medicare, along with their expected premium.

Reverse Mortgage

If your loved one is set on aging in place in their own home, a reverse mortgage can provide a lump sum or source of monthly income. It won’t need to be repaid as long as they live in their home, as it’s repaid when the home sells. Definitely discuss this option with a financial planner before deciding on it, and be wary of disreputable lenders.

Social Security Benefits

There are three main types of Social Security benefits. Learn more about them here.

Disability benefits - See Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI), below.

Retirement benefits - See Supplemental Security Income (SSI), below.

Survivor benefits - The surviving spouse of an eligible worker may be able to claim Social Security survivor benefits.

Social Security Disability Insurance (SSDI)

The SSDI program is an insurance program that workers pay via Social Security taxes. Your loved one may be eligible for SSDI benefits if they:

• Have worked long enough
• Have worked recently enough
• Meet the SSDI’s strict definition of disability and stringent qualification requirements.

The SSDI also has special benefits for individuals with Blindness or Low Vision, as well as for veterans.

Refer to the Checklist for Online Adult Disability Application to find what information your loved one will need to compile in order to apply for disability benefits.

Low-income individuals who don’t meet the work requirements for SSDI may still be eligible for disability benefits through the SSI program.

Supplemental Security Income (SSI)

The Supplemental Security Income (SSI) program offers monthly payments to eligible low-income individuals who are 65 or older, as well as to those who are blind or disabled.

Supplemental Nutrition Assistance Program (SNAP)

The Supplemental Nutrition Assistance Program (SNAP) – formerly known as food stamps – provides funds for eligible individuals to buy food. Eligibility and program details vary from state to state. Get more information or apply to your state’s SNAP program here.

Veterans Services

The Veteran-Directed Care Program aims to keep veterans out of nursing homes where possible by providing supports for them to stay at home.

Veterans who are housebound or need help with daily activities may be eligible for a monthly stipend through the VA Aid and Attendance or Housebound benefits.

Veterans who sustained a serious injury in the line of duty before 1975 (or after 2001) may be eligible for a variety of resources – including health insurance and a cash stipend – through the Program of Comprehensive Assistance for Family Caregivers (PCAFC).

Find more information about VA Caregiver Support Programs here, or through a VA facility near you.

Other resources for veterans and their caregivers include:

• The National Association for Veterans and Families (NAVF)
• The National Resource Directory (NRD)
• After Deployment / Health.mil

Look Ahead at Long-Term Care Options

There are many options for long-term care beyond nursing homes and in-home care. Adult foster homes, assisted living, residential care, and group homes are some of the more common options.

Senior housing placement agencies can be helpful for finding a good match for an individual senior’s needs. Most don’t charge families because they’re paid by the facilities they partner with for referrals. They can be a good resource but bear in mind that they won’t refer you to anyone outside of their network.

The Administration for Community Living (ADL)’s No Wrong Door program offers objective, person-centered assistance to ensure you and your loved one have the information you need to make an informed decision regarding long-term care options.

Other good resources for finding the right long term care setting include:

• Your Guide to Choosing a Nursing Home or Other Long-Term Services and Supports
• LeadingAge’s Aging Services Directory
• Where You Live Matters

Consider Tax Benefits

Talk to a tax advisor about possible tax benefits for seniors or family caregivers such as:

• Claim your loved one as a dependent
• Create a flexible spending account or health savings account
• Deduct allowable medical expenses
• File as Head of Household status

Explore Other Places to Find Resources

• AARP Foundation's Local Assistance Directory
• The National Council on Aging's Benefits Checkup
• Your local Area Agency on Aging (AAA)
• Paying For Senior Care’s Paid Caregiver Program Locator National Respite Locator

Organize Responsibilities with Checklists

Work your way through these checklists to get off to a great start on your caregiving journey. Not every item will apply to every situation, so disregard those that don’t apply in yours.

Keep the documents in a safe, yet accessible place. More caregivers are finding that secure online storage services can be a good solution, especially when sharing care duties with siblings.

Legal & Financial To-Do’s

Talk to an attorney familiar with your loved one’s state for any questions relating to their estate, financial or legal matters!

• Create a caregiver budget, track your spending, and assess how caregiving may affect your financial situation
• Ensure Estate Planning is Complete
  • Durable Power of Attorney
  • Last Will and Testament
  • Trust documents

Gather Information

Gather the following information and documents:

• Birth certificate
• Spouse’s death certificate
• Marriage certificate
• Divorce decree
• Social security card
• Social security benefit or payment information
• Military discharge papers
• Citizenship papers
• Deed to cemetery plot
• Property deeds
• Vehicle titles
• Medicare policies
• Medicaid information
• Health insurance policies
• Life insurance policies
• Long term care insurance policies
• Vehicle insurance policies
• Homeowners / Renter’s insurance policies
• Other insurance policies
• Retirement plans
• Pension benefits
• Tax records from the last 3-7 years (including supporting documents)
• Bank statements
• Credit card statements
• Investment statements (IRAs, mutual funds, etc)
• Stock and bond certificates/statements
• Loan information or agreements
• Mortgage documents
• Utility/other bills/statements
• Passwords/identification numbers for bank accounts, credit cards, and other online accounts. Store in a secure location, such as an online password manager!

Medical

Complete Advanced Care Planning Documents

• Durable Power of Attorney for Healthcare
• Living Will
• POLST

Gather Medical Information

• Complete list of medications (including over the counter medications and vitamins/supplements) along with their dosages and instructions for use
• Allergy information
• Past medical history and information on past surgeries
• Current health conditions

Compile Information and Documents for Each Health Care Provider and Organization

• Contact information
• Billing information
• Upcoming appointments
• HIPAA releases
• Primary care provider
• Medical specialists
• Dentist
• Eye doctor
• Audiologist / Hearing aid provider
• Mental health provider
• Home care
• Physical therapy
• Occupational therapy
• Speech therapy
• Palliative care
• Hospice

Sources and Further Helpful Reading

National Alliance for Caregiving Mission - Resources

How to Receive Pay when Becoming a Family Caregiver

Where Family Caregivers Can Get Financial Assistance

Caregiver Financial Assistance

Legal Checklist to Help Caregivers as Their Parents Age

National Caregivers Library Checklists & Forms

Financial Steps for Caregivers

Tips and Resources for First-Time Family Caregivers

Taking Care of YOU: Self-Care for Family Caregivers

Advance Care Planning: Health Care Directives

5 Tips to Help You With End-of-Life Planning

10 Tips on Planning for Aging Parents' Needs

How to communicate with your aging parents about their health (and get them to listen)

9 Types of Issues to Address When Helping Aging Parents

How to Assemble a Caregiving Team

Build Your Caregiving Teams

Effective Ways to Build a Caregiving Team - First in Care Home Health Agency, Inc.

Building Your Care Team - Caregiver.com

How to Share Caregiving Responsibilities with Family Members

Tips for Family Caregivers Managing Someone Else's Money

19 Evidence-Based Benefits of Advance Care Planning

Author Bio

Laura Herman is an elder and dementia care professional who advocates for better senior care in America. This article has been reviewed by TJ Falohun, co-founder and CEO of Olera. He is a trained biomedical engineer and writes about the cost of healthcare in America for seniors.