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A Caregiver’s Guide for Family and Loved Ones

According to the CDC, informal caregivers, such as family members or friends of elderly or ailing people who need assistance, are “the backbone of long-term care.” Many families cannot afford professional care or would prefer to take care of their loved ones themselves. Caregiving is no easy task, and you may feel unprepared for the challenges you and your family could face in the coming months or years.

Whether you’re considering becoming a caregiver, are already providing care, or are a healthcare provider with concerned families of the ill and elderly asking for advice, you probably have a lot of questions. This guide explores the most common questions caregivers and their families have and provides suggestions and resources for making their caregiving roles as simple as possible.

When Is it Time to Tell My Loved One I Believe They Need a Caregiver?

Having a conversation with a loved one who is aging or has a serious condition about their need for care can be difficult. Many people don’t want to be a burden or rely on their family for support, and it can be hard to broach the subject with them—but, it may be necessary. So how do you know when it’s the right time to suggest that additional help may be useful?

If any of the following is true, it may be time to start the conversation:

  • A loved one has a serious disease, such as dementia, aggressive or terminal cancer, Parkinson’s, or Alzheimer’s
  • They’re having difficulty remembering critical or everyday things, such as if they took their medication, how to get to places they’ve been to many times, or if they turned off the stove
  • They can no longer accomplish essential tasks, such as bathing themselves, cleaning, and cooking, either for physical reasons or because they forget to do so
  • Their bodily functions are no longer well within their control
  • They’re showing inexplicable personality changes, particularly anger, frustration, depression, or aggression

Don’t wait until a crisis occurs to have this conversation. Choose a calm moment when no major issue has just happened or when an argument is occurring. Speak with your loved one about how they feel and what areas they might like help with. And remember—you’re talking to an adult, not a child, no matter what diagnosis they may have. Discuss how getting help will improve their lives, rather than focusing on what they can’t do.

How Can I Prepare for the Role of Caregiver?

At some point, many of us will take on the role of a caregiver for a loved one. Parents, spouses, and other family members will age or suffer from serious diseases that require additional assistance. Even very young people may need full-time care. This may be one of the most rewarding roles you take on, but it can also be incredibly challenging.

This section will discuss how to prepare for this job, what types of challenges you’ll face, and how to ensure your own mental health doesn’t suffer.

Get Organized

As a caregiver, your goal is to ensure your loved one receives the best possible care and support to meet their needs. This includes physical needs, such as making sure they have enough to eat, legal considerations, and medical decisions.

Before becoming a caregiver, take time to get organized and gather the resources and documents you need.

Gather important information.
Be sure to verify facts you may need, such as your loved one’s full legal name, name change history, details about marriages and divorces, social security number, place and date of birth, past employment, and contact information for their closest family members, friends, and medical team.

  • Documents: For the above, you should obtain their birth certificate, social security card, and marriage certificates, divorce decrees, and name change records from the counties in which they occurred. Keep these in a safe location.

Set up a schedule.
What does a standard day look like when you become a caregiver? Is there a medication schedule you need to follow? Are you living with your loved one, or will you travel to them? If you have other responsibilities (such as children or pets), how will those responsibilities impact your ability to provide care? Make a list of weekly or monthly appointments and obligations to stay organized. Ask your loved one about their needs, but don’t forget your own obligations and mental health needs.

Conduct a financial review.
Review your loved one’s finances to understand what bills need to be paid, including utilities, car or mortgage payments, and services like cable, internet, and phone. You should also find out if they have any income or investments. Make a list of accounts, investments, and other critical financial information, such as their 401K, social security and Medicare, tax returns, deed for their home or rental agreement, car title, and lockboxes’ locations and their keys or codes.. Be sure you know who to contact regarding all of these. This is also a good time to see if they have any unclaimed money and work to get that sent to them. Remember that these are all still theirs and, if they’re capable, they choose what is done with them. If they’re no longer capable of these decisions, be sure you have the legal right to make decisions and remember that all decisions are for their benefit—i.e., all money still goes to them.

  • Documents: For the above, make sure you have copies of at least one bill for each place owed so you can access account numbers, documents proving the existence of income, investments, and all other accounts, and physical copies of all deeds and titles (you may need to request these or print them from the provider’s website if they’re not readily available).

Learn about local resources.
Caregiving is a marathon, not a sprint. Look for resources that may help with medical treatments, trips to doctor’s appointments, food delivery, and entertainment. For example, there may be services that can take your loved one to their weekly doctor’s appointments or deliver library books. You may also be able to find adult daycares, where your relative can engage with others and participate in activities while you work or perform other tasks. Relying on your community can benefit both you and your loved one. In some locations, informal caregivers can get a small “salary” for their work from the county or state.

Legal considerations.
As a caregiver, you may need to make medical or financial decisions for your loved one or handle issues if they pass away. Consider whether you should obtain power of attorney, which gives you the legal ability to make decisions on behalf of your loved one. These decisions may vary based on the state you live in, whether you’re their closest living relative, and if your loved one can make decisions on their own. If their will is out of date and your loved one is still able to make changes, encourage them to do so—but let them do it totally independently of you. If the person you’re caring for is still able to make voting decisions, check out your local laws about how you can assist them with this process—don’t vote on their behalf, even if you know their views. It’s worth consulting with a lawyer for all of this. If you can’t afford a lawyer, resources like Rocket Lawyer can help answer questions and draw up paperwork for a low fee.

Creating a binder or folder that includes a schedule and important legal, financial, and medical information. Keep it in a safe place where people can’t find it without permission, but you can easily grab in in case of an emergency like a fire or tornado. (Note: Fireboxes aren’t necessarily fire or water proof, simply resistant to these things, and should be taken with you in case of emergency.)

Learn About Their Situation

People you care for may be simply experiencing the normal process of aging, but they also often live with disorders or diseases. Both can impact their physical needs, their emotional wellbeing, and the support they may need from you. Understanding their challenges will better prepare you to provide care. Researching the aging process or disease or condition can also help you spot signs regarding if their situation is improving or declining.

When it comes to understanding diseases or conditions, research side effects of any medication your loved one takes so you can make informed decisions about their symptoms and care.

Cancer

According to the World Health Organization, “cancer is a leading death worldwide.” However, there are many types of cancers and a vast array of treatments, symptoms, and prognosis.

Start by learning about the type of cancer your loved one has and their prognosis. Are they receiving treatment? If so, what side effects can they expect? What other accommodations may they need, like special diets, restricted activities, or even a separate bathroom?

Work with your loved one’s medical team to understand what signs or symptoms indicate an emergency or worsening condition. For example, headaches, seizures, or swelling of the belly may mean the cancer has spread.

Finally, look for resources related to the specific cancer your loved one has. Resources and support groups related to that type of cancer may help both you and your loved one navigate your new normal.

Alzheimer’s

Alzheimer’s is a debilitating, progressive disease that destroys short- and long-term memory and other critical mental functions. The mental decline is often slow and can be traumatic for loved ones as well as the patient. Alzheimer’s can result in anger, depression, and many other mental health issues. Patients may be confused or afraid and lash out. Treatments are available, but there is currently no cure.

As a caregiver for someone with Alzheimer’s, take the time to research signs and symptoms of progression and consider what that may mean for their care. Common symptoms of Alzheimer’s include memory loss, challenges solving problems, difficulty understanding spatial relationships, poor judgment, confusion about time, and repeating questions. These can provide unique challenges for caregivers. For example, some Alzheimer’s patients may wander from home or become violent. Understand the limits of care you can provide at home and have a plan for the next steps if you need additional help.

Caregivers should ensure they and their loved ones are physically safe and be sure to take care of their mental health. Look for local support groups through the Alzheimer’s Association or call their 24/7 hotline for support and information at 800.272.3900.   

Parkinson’s

Parkinson’s is a progressive disease affecting the central nervous system. It often starts with a tremor in one hand. Patients may suffer from slowed movement, stiff muscles, and loss of balance. Symptoms generally develop slowly, but the disease is progressive and often worsens over time. Eventually, some patients may struggle to perform daily activities and care for themselves.

Caregivers to a loved one with Parkinson’s may help with daily activities such as meal prep, bathing, giving medication, providing emotional support, and taking them for medical treatments.

The Parkinson’s Foundation provides a list of caregiver resources, including a helpline for medical care references and emotional support. Call 1-800-4PD-INFO (473-4636) or email [email protected] for help and assistance.

Other Common Medical Issues

Even if your loved one doesn’t have an illness or condition, elderly or otherwise vulnerable people often experience unexpected health issues.

Diabetes
Elderly people are prone to developing diabetes, even absent other health problems, and signs can include constant thirst or hunger, frequent urination or infections, and unexplained weight loss, among others.

Hearing Loss
Asking people to repeat what they say or complaining about them being quiet or mumbling, having a particularly hard time understanding women and children when they speak, and turning up the volume on audio are signs of hearing loss. Interestingly, hearing issues can increase the risk of dementia, so it’s important to address these problems quickly.

Heart Attack
Chest discomfort or pain, lightheadedness, stomach issues like nausea and vomiting, pain in their back, neck, jaw, arm, or shoulder, and shortness of breath can all indicate heart attacks.

Stroke
Stroke symptoms are usually abbreviated as “FAST“.

  • Facial drooping
  • Arm weakness
  • Speech difficulty like slurring or saying things that don’t make any sense
  • Time to call 911.

Urinary Tract Infection (UTI)
Confusion, fever, painful urination, and lower abdomen tenderness can indicate UTIs in the elderly.

You should also be on top of their oral care and watch out for signs of substance abuse. Any unusual behaviors or complaints of pain or illness should be considered serious.

Talk to Your Family

Before making the final decision about being a caregiver, host a family meeting. Talk about expectations and concerns with your family members and your loved one.

A particularly important person in this discussion is anyone who lives with the person needing care but who can’t provide care themselves, such as an elderly spouse. They’ll be watching this person they love deeply deteriorate and experience medical emergencies, and they’re at a high risk of becoming a victim if their loved one’s condition involves physically or emotionally abusive behaviors (as is common with dementia). The emotional strain on them can be terrible and may even devolve into depression. If they want their loved one to be moved into a facility or for both of them to be moved into one together, this should be seriously considered, especially if the caregiver won’t be living with them. If they want to stay at home with their loved one, be sure to help them find an appropriate support group.

Discuss any concerns you or other family members might have, and outline what roles each family member will take. For example, you may be the main caregiver, but an adult child or spouse may retain the responsibility for making medical or financial decisions.

Once everyone is in agreement, write down expectations and schedules, giving copies to each person. Plan to meet at set intervals, such as monthly or quarterly, to reevaluate the situation and ensure everyone’s needs are being met (including yours, as the caregiver).

Finally, be kind to one another. Recognize that the decline of a loved one is difficult and emotional for everyone involved. Try to maintain your composure and consider taking a break if the conversation becomes unproductive.

Find a Support Group

Taking care of yourself is critical to providing the best care possible. Look for support in your family and community so you—and your loved one—can continue to live a happy and fulfilling life. Friends, family, church groups, and neighbors may offer the support you need. Don’t try to do it all on your own. Create a list of supportive people and services, so you know who to call when you need help. Don’t wait until you’re overwhelmed to lean on your support team.

Talk with Your Loved One’s Health Professional

As a caregiver, you may need to manage your loved one’s treatments and make medical decisions on their behalf. This may include being present at doctor’s appointments, obtaining and learning about prescriptions from pharmacists, facilitating therapy, and seeking out specialist care.

The first step is to ensure you have the legal authority to coordinate care. This may involve seeking power of attorney, depending on your relationship with your loved one. For example, a spouse may not need a power of attorney to make medical or financial decisions. However, a friend or other family member may be required to hold power of attorney to make medical decisions.

Next, make a list of questions to ask your loved one’s medical team. For example, you might ask:

  • What prescriptions will I need to fill?
  • What are the side effects of any medication they take?
  • How often should medication be taken?
  • Are there other treatment options we can consider?
  • What can they eat?
  • What are their physical capabilities?
  • Are there signs or symptoms should I watch for?
  • What is their long-term prognosis?

Create a folder or binder with critical medical information so you have easy access to insurance cards, medical history, and other information their medical team may need.

What Are Some of the Challenges I Should Anticipate?

Caring for another person may be one of the greatest challenges you face. Understanding potential challenges can help you prepare for the future. Each family and caregiver will have their own unique experiences. However, there are several common challenges. For example, your loved one may resent being cared for and lash out in anger. You both may struggle with the changing roles if you’re caring for a parent, as they’re used to caring for you.

You may sometimes resent the time required to care for your loved one, even though you understand that it’s not their fault. These complex emotions may create feelings of guilt or anger. You may suddenly be unable to participate in activities you enjoyed, such as travel or spending time with friends. You may suffer from stress, isolation, and even depression. None of this makes you a bad person, but you should avoid sharing these feelings or reacting with anger to the person for whom you’re caring.

A few other challenges caregivers may face include:

  • Burnout from providing care that leaves little time for other activities
  • Depression and a drop in mental health
  • Financial strain due to loss of work or having to help with the cost of medical treatments
  • Lack of privacy and difficulty setting boundaries
  • Lack of sleep due to stress or a loved one who wakes up frequently
  • Lack of training, which makes providing adequate care a challenge
  • Physical and emotional stress, which can take a toll on your body and your mental health
  • Time management struggles

Many of these challenges can be eased by building a support network.

What Can I Do to Prevent Burnout?

One of the most important—and, admittedly, most challenging—things you can do as a caregiver is to take care of yourself. Unless you’re mentally and physically doing well, you can’t provide the care your loved one needs. To help prevent problems, do the following:

Take care of your physical health.
Get an annual physical and flu shot, consider getting a pneumonia or shingles vaccine, and verify that you’re up to date on all other vaccines. This will help both you and your loved one stay healthy, as they’re at risk for developing illnesses and could pass them on to you—or vice versa.

Make time to work out.
Anything that gets you moving, like walking, running, spinning, or even dance classes, can help you stay healthy and boost your energy.

Schedule time off.
Caring for another person can be draining, both emotionally and physically. Work with your support system to ensure you get time to rest and pursue your own activities.

Check into family leave benefits.
Your workplace may offer extended time off, either with or without pay. Taking leave could reduce your stress and give you time to take care of yourself and your loved one.

Outsource tasks.
Can you delegate any tasks to another family member or hire someone? For example, a relative may not be able to help with day-to-day care but could drive your loved one to their weekly doctor’s appointment, freeing you up to relax or take care of other necessities.

How Do I Know When It’s Time for a Hospice or Long-Term Care Facility?

Hospice and long-term care facilities are for people who need more attention than a caregiver can provide.

Long-term care facilities aren’t just for the elderly but for anyone who needs constant assistance, such as younger people who live with paralysis. Retirement communities are for older people who need limited care but could benefit from some assistance Assisted living is for those who need daily help, but not constant medical attention. Nursing homes provide intensive medical care. Long-term care strives to ensure people can live as independently as possible, often in their own apartments or homes on the grounds, and offer a variety of activities and social events. Research what kind of facility meets your loved one’s needs—for instance, not all can provide Alzheimer’s care, even in the early stages.

Hospice care focuses on treating a patient’s pain and symptoms as they reach the end of their life. Patients in hospice care are given medication and treatments designed to keep them comfortable, rather than improve their conditions or provide lifesaving measures. Unless medically necessary, they aren’t confined to a bed all the time—hospices provide many activities and social interaction.

Choosing to have someone move into hospice care is especially challenging. Here are a few signs it may be time to consider hospice care for your loved one:

  • They ask to be moved into a hospice, particularly if they do so when lucid.
  • Treatments are no longer working, or the person can no longer tolerate aggressive treatments.
  • Your loved one’s symptoms are getting too hard for you to manage without medical training.
  • They need more help than you have time or resources to give. In the early stages of caregiving, you may have visited a few times a week or for a few hours a day. Many elderly or terminally ill patients ultimately need round-the-clock care.
  • Your loved one is refusing food or is losing weight for no apparent reason. Reduced consumption of food may indicate increased pain, trouble digesting, difficulty swallowing, or, in the case of dementia, even forgetting how or why to eat. This frequently requires 24/7 monitoring by professionals.
  • You’re emotionally unable to handle it any longer. This is not a failure—if anything, this self-awareness can ultimately improve the quality of life for your loved one, as they may pick up on your stress and sadness. Hospice care does more than just provide treatment for the last few weeks of life. It can also provide family and caregivers with much-needed support, medical supplies, counseling, emotional support, and help with household tasks.

Before beginning the conversation about hospice care, take the time to understand what’s available in your state. Income levels, local support groups, and insurance coverage may also impact your hospice care options.

What Resources Are Available to Help Me?

There are many resources available to help you navigate the challenges of being a caregiver. If your loved one suffers from a disease or condition, look for resources related to their diagnosis. If they’re simply in need of assistance due to their age, there is help for that as well. In addition, your loved one’s medical team may have a list of local resources available to you.

A few resources to look into are:

AARP’s Caregiving Resource Center
A website that provides access to resources, guides, tips, and support for aging patients and their families

Administration for Community Living (ACL)
A government organization dedicated to helping the elderly and those with disabilities live where they want with the support they need. Resources include online tools, resources, and connections to programs for support

Alzheimer’s Association
Tips and resources for family members navigating the challenges of caring for a loved one with Alzheimer’s, including a live chat and 24/7 support line

American Association of Caregiving Youth
A non-profit organization dedicated to aiding and supporting youth caring for loved ones with chronic conditions, disabilities, and the elderly

ARCH National Respite Network and Resource Center
An organization that promotes the development of quality respite and crisis care programs and helps families locate services in their community

Care Zone
An app designed to help manage medications, track symptoms, and more with automatic reminders, medication delivery, and the ability to track information such as blood glucose, weight, and blood pressure

Caregiver’s Survival Guide: Caring for Yourself While Caring for a Loved One
This is a book based on the personal experience of Dr. Robert Yonover’s life caring for his paralyzed wife, raising two children, and building a successful scientific career. It offers guidance, hope, and advice for those facing similar challenges.

Family Caregiver Alliance (FCA)
An organization dedicated to improving the quality of life for caregivers and those they care for with assessments, care planning, skills training, wellness programs, respite services, and legal and financial consultation vouchers

Local support groups
Search for “caregiver support groups in <your city>” to find local resources for caregivers in your area. Having someone to talk to about the challenges you face can make a world of difference.

Rosalynn Carter Institute for Caregiving
A website and resource center founded by First Lady Rosalynn Carter to provide resources, information, and training for the 53 million Americans who provide care for their loved ones