How To Thrive As an Informal Caregiver: Support and Help When You Need It

Being an informal caregiver is a remarkable and selfless role where individuals take on the responsibility of caring for their loved ones who can no longer care for themselves due to disability, illness, or aging.

Informal caregiving requires compassion, commitment, and dedication. However, it can also be physically, emotionally, and mentally demanding, leading to burnout and exhaustion in today’s fast-paced world where work, family, and personal commitment are taxing.

Often, it can be challenging to find a balance, and the caregiver’s health suffers in the long term.

Whether you’re new to informal caregiving, or you have been on this journey for a while, Amy’s Eden has put together this guide to help you navigate your journey with resilience and grace. You’ll find tips, resources, and strategies to help you thrive and overcome obstacles along the way.

What Is An Informal Caregiver?

An informal caregiver also called a “family caregiver” or a “primary caregiver” is an unpaid individual who cares for a family member, spouse, relative, or friend that can no longer provide their care may be due to disability, illness, or aging. Care is usually provided in the home environment of the care receiver or caregiver.

If you fall into this description, you’re not alone. Approximately 38.9 million caregivers or 16.6% of Americans provide care for adults aged 18+. If you’re an informal caregiver for older adults, which is the focus of this guide, you’re also not alone. It’ll surprise you to note that about 32.4 million Americans provided unpaid care to an older adult aged 50 and above as of 2015.

Informal caregivers are the backbone of the caregiving industry, sacrificing their time, and resources to ensure their loved ones are cared for and lead a better quality of life.

A 2014 study indicated that informal caregivers for older adults provided an average of 75 hours of assistance per month. In 2014 the economic value of unpaid caregivers was $470 billion exceeding the value of paid home care and total Medicare spending in the same year.

These statistics show that informal caregivers are doing one of the most selfless acts one human being can do for another. You’re amazing, you’re a superhero!

Importance of providing care for elderly parents

As we age and our health declines, we become more prone to illnesses and have decreased mobility. We might also experience a decline in our cognitive abilities. All of this over time make caring for ourselves challenging, so we need someone to step in and provide assistance.

It’s the same with our elderly parents or relatives. Caring for them when they can no longer care for themselves is one of the noblest things to do. It gives them a sense of belonging, gives them peace of mind, and helps them lead a high quality of life as they advance to their twilight years.

For caregivers, it can provide a sense of purpose and create a deeper bond with our elderly loved ones or relatives.

Responsibilities of an Informal caregiver

As an informal caregiver assisting an older adult, your responsibilities may include some or all of the following.

• Personal care: You may have to assist your loved one with activities of daily living (ADLs) that they are no longer able to perform on their own. These include bathing, grooming, toileting, eating, and transferring.
• Nutrition: Seniors need to eat a well-rounded diet or a health-specific diet as they age. Often, cooking or meal preparation might become a chore for your loved one, and you may have to step in to help. If you are unsure about what diet is beneficial for your loved one, consult a nutritionist.
• Household chores: Limited mobility, pain, or illness can hinder an older adult from carrying out basic household chores such as sweeping, doing laundry, or doing the dishes.
• Shopping and running errands: mobility or vision issues may make it difficult for your loved ones to run their errands, and you may have to assist in this area.
• Medication management: Assisting your loved one to ensure they are on track with their medication is crucial. You can give them reminders to take their medication and restock their prescriptions.
• Companionship and emotional support: Social isolation and loneliness are prevalent in older adults. You can be a companion buddy for your beloved senior, join them in their favorite hobbies, play games, talk a walk, create memories, and have fun times.
• Health and fitness: Regular exercise is essential for seniors. However, seniors may not be as motivated to exercise. You can encourage them to exercise by designing an exercise routine they can do at home. Making exercise fun, and involving other friends or relatives may encourage them as well.
• Communicating with other healthcare team members: Your loved one will likely have a personal doctor, physical therapist, nutritionist, or fitness coach that is involved in their care as well. You may be responsible for ensuring appointments are met and scheduled, and instructions from these people are carried out.
• Managing finances and providing financial support: You may have to step in to manage your loved one’s finances and estate when they can no longer do so. You may also have to provide financial assistance especially when insurance, savings, or health coverage falls short.

This list above is by no means exhaustive. You may also be responsible for other duties not listed here. Juggling caregiving responsibilities and personal responsibilities like work and family can be challenging, and in some cases, caregivers have to seek some form of external help.

Difference Between Informal and Formal Caregiver

A formal caregiver is a paid caregiver. In other words, they are given monetary compensation for the care they provide. Most family caregivers transition to formal caregiving when their caregiving responsibilities are overwhelming, when the care needs for their loved one goes beyond their expertise, or when they are not able to provide care for some reason, say distance.

Paid caregivers are trained and equipped to provide long-term care for older adults. They work in a variety of settings including:

• The home of the care receiver
• Assisted living homes
• Nursing homes
• Memory care homes
• Adult daycare centers
• Hospice homes

Types of formal caregivers

Depending on your loved one’s need, there are different types of paid caregivers you will need.

1. Companion Caregivers: They provide companionship to older adults to combat feelings of isolation and loneliness. They also assist with light housekeeping, meal preparation, and running errands.
2. Personal Care Assistants: These caregivers offer support with activities of daily living such as bathing and grooming. They also provide companionship, perform house chores, and assist with transportation. Personal care assistants and companion caregivers do not provide any form of medical care but can help with medication reminders.
3. Home Health Aides (HHA): If your loved one requires some form of medical care but not 24/7 medical attention, HHAs are the caregivers to seek. In addition to personal care, they offer basic medical care such as medication management, checking of vitals, wound dressing, weight monitoring, and incontinence care.
4. Certified Nursing Assistants: CNAs perform the responsibilities of Home Health Aides. In addition to those responsibilities, they are in direct contact with doctors and other healthcare team members to ensure the overall medical health of the care receiver.
5. Other formal caregivers: They include doctors, registered nurses, physical therapists, occupational therapists, nutritionists, and other health care providers who work together to ensure general care and well-being for older adults.

If you’re looking for a caregiver for your loved one, you can reach out to us to find the perfect caregiver who is trained and equipped to provide exceptional care.

Challenges Faced by Informal Caregivers

Being an informal caregiver, regardless of how rewarding it can be, comes with its share of challenges. While each caregiving journey is unique, the emotions experienced are often universal. Feelings of guilt, stress, isolation, and exhaustion can become all too familiar.\

Below are some of the common challenges family caregivers of older adults face.

Time and schedule management

On the caregiver’s list, there are always a thousand and one things to do. If you’re not trying to provide care for your loved one, you’re trying to meet up with other responsibilities that demand your attention like family, work, or business. Trying to create this balance and manage time effectively can be overwhelming, and caregivers often find themselves stretched thing leading to a sense of being overwhelmed.

Physiological and emotional distress

A 2023 study indicated that almost half of the caregivers involved in the study who provide care for at least 40 hours per week were diagnosed to have depressive symptoms.

Providing care for a loved one can trigger a range of complex emotions. You may experience feelings of

• guilt
• sadness
• frustration, and
• helplessness.

Witnessing your loved one’s condition decline, feeling you’re not doing your best, or that you’re ignoring your other responsibilities can lead to increased stress, depression, and anxiety.

If you’re having intense emotions like continuous sadness and helplessness, you may be experiencing caregiver depression, or they can increase your risk. Learn about the 10 signs of caregiver depression and how to prevent it.

Physical Demands

It’s estimated that 17-35% of family caregivers view their health as fair or poor, and 11% report that caregiving has caused their physical health to deteriorate.

Depending on your loved one’s condition, caregiving tasks may include physical assistance such as lifting and bathing. This can impact your physical health and lead to injuries, chronic pain, or sleep deprivation if self-care is not prioritized.

Financial Strain

Four in ten informal caregivers (38%) experience moderate to high financial strain from caregiving. 45% have had at least one major financial impact such as:

• Running into debt,
• Stopping savings, and
• Inability to pay bills or afford necessary expenses like food.

The reason for the above is not far-fetched. Some family caregivers may have to reduce or quit their employment resulting in loss of income, and a potential strain on their financial ability. Others may have to actively support the financial aspect of their loved one’s care such as medical treatment, medications, and specialized equipment.

Lack of Information, Education, and Training

“Caregiving is like on-the-job training, but nobody has the manual”.

This is so true for most family caregivers. Research reports that 85-95% of caregivers are untrained and lack the needed caregiving knowledge and skills.

Most family caregivers never planned to be caregivers; they just found themselves in that role unexpectedly. Hence, many know nothing about their loved one’s condition, and overall health requirements. This lack of information can make caregiving more challenging, leading to feelings of uncertainty and inadequacy.

Social Isolation

Your caregiving responsibilities may limit your social interaction and activities. The constant demands of caregiving can leave little to no time to pursue your interest or maintain relationships. This can lead to feelings of loneliness or lack of emotional support.

Burnout and Self Neglect

Constantly attending to the needs of another person without taking time to care for oneself can lead to caregiver burnout, which is a state of intense physical, emotional, and mental exhaustion. Caregiver burnout hinders your ability to provide effective care and manage your life outside of caregiving.

If you have been a family caregiver for some time now, you may relate to one or more of the above challenges. The first step is knowing that these challenges can occur, or identifying that you’re already experiencing them. The next step is to learn coping strategies to help you thrive in your role.

If you’re experiencing caregiving challenges right now, understand that you’re not alone. Numerous caregivers have experienced these challenges and used the strategies we’ll be discussing below to reduce or eliminate them.

Learn to ask for help and accept help

You can’t do everything by yourself, so, it’s okay to ask for help and learn to accept it when it’s being offered. Get other family members or relatives involved in the care, and delegate responsibilities accordingly.

Take a time out

You must prioritize self-care if you don’t want to end up with caregiver burnout or depression. Don’t feel guilty when you need to take out time for yourself. You’re not a superhuman, you also need downtime to recharge your caregiving batteries. This can in turn boost your mental health.

During your time out you can engage in your favorite hobby, take a walk or do whatever makes you feel good and happy. This can include:

• Journaling
• Practicing mindful meditation to clear your thoughts
• Reading a good book
• Going on a vacation
• Learning a new skill

Learn to manage your time

Time management is crucial as you have to balance caregiving and life outside caregiving. If you’re finding it difficult to manage your time, the following tips can help.

• Make a daily to-do list
• Do the most important/difficult tasks first
• Delegate tasks to others
• Do similar errands at the same time
• Plan personal outings and self-care way before time, and find support while you’re away
• If possible have specific recurring days or times dedicated to personal care and stick to it.
• Understand that sometimes things may get beyond your control, and that’s fine

Learn to cope with negative emotions

Negative emotions such as feelings of guilt, anger, jealousy, sadness, and helplessness may come up in your caregiving role. However, you must identify the root cause of these emotions and find ways to address them.

Let’s take a look at how to address some of them.

• Anger: Caregiving is demanding, and occasionally you may feel angry and frustrated at yourself, your loved one, or other relatives. Combat anger by engaging in activities that help you release tension such as exercise, journaling, or talking to a trusted friend or therapist.
• Guilt: Guilt may arise from different situations such as feeling that you’re not doing enough, taking out time to relax, or feeling frustrated and resentful. While guilt is a natural response, you must challenge and reframe those feelings. You can do this by accepting yourself and your limits, acknowledging that it’s okay for you to relax and have some “me-time”. You can also seek professional help in unique cases.
• Jealousy: you may experience feelings of jealousy towards those that are not burdened with caregiving responsibilities. You may experience envy when you see others pursuing their goals, or enjoying a carefree lifestyle while you’re struggling or forfeiting your dreams or goals. In this case, it may help find moments of joy in your caregiving responsibilities, join support groups, and ask others for help so you can spend some time doing things that bring joy to your life.
• Sadness: Witnessing a loved one’s decline in health or experiencing the loss of their previous abilities can evoke deep sadness. However, allow yourself to seek comfort from friends and family, and activities that bring you joy.

Prioritize Your Physical Health

How do you take care of others when you’re not in the best physical health? It’s necessary to adopt healthy lifestyle choice that keeps you in optimal health. Some of these include:

• Get plenty of exercise; walking, running, cycling, swimming, yoga, or dancing. Exercise helps manage stress, and keeps your weight healthy
• Get enough sleep; you’ll feel refreshed each morning with fantastic energy to dominate your day.
• Eat healthily, and reduce alcohol intake
• Quit smoking or using drugs
• Find ways to reduce stress
• Find humor and gratitude in small things
• Get regular medical and dental checkups
• Get an occupational therapist to show you how to lift your loved one properly (e.g from a wheelchair to the bed) to prevent injury during caregiving

Get Respite Care

Respite care is temporary care for your loved one while you take that much need break to relax and unwind. Respite care can be provided in a home environment, an adult day care center, a nursing home or assisted home, or a center dedicated to respite.

You can hire an independent respite caregiver or work with a caregiving agency that will provide a caregiver to fill your shoes while you’re away.

At Amy’s Eden, we have professional respite caregivers who have been trained and vetted. Our respite caregiver takes the burden of worrying about your loved one while you’re away. We care for them, just as you would.

Join Support Groups

Caregiver support groups can offer encouragement and validation and provide you with real-life strategies to cope with difficult situations. Think of them as a close-knitted group of individuals on the same journey as you. You can talk about your challenges and negative emotions you might be feeling, and get answers or strategies to cope. You may also find opportunities for caregiver training or program.

If you’re constrained with time, and can’t attend a physical support group or community, online groups on social media such as Facebook or Twitter, or other online forums can be beneficial.

Resources and Support for Informal Caregivers

Numerous not-for-profit organizations and government agencies have resources geared toward supporting informal caregivers and their families.

Below are some of them.

• Aging Life Care Association: They help caregivers and their families navigate the nuances of caregiving. You can find an aging life care expert who can work with you and provide answers in times of uncertainty.
• Eldercare Locator: You can use this resource to get access to services for yourself and your loved one. You can also reach them at 1-800-677-1116.
• Meals on Wheels America: Enter your loved one’s zip code to receive meals delivered to their doorstep.
• AARP Prepare to Care: This is a series of resource guides to help caregivers implement a caregiving plan for their loved ones.
• Family Caregiver Alliance: They offer a comprehensive range of resources for caregivers including caregiving tips, elder rights, connections to support groups, and more.
• Alzheimer’s Association: If your loved one has Alzheimer’s or dementia, this association has in-depth caregiving resources including what to expect, daily care, and how to get support.
• National Alliance for Caregiving: They partner with other caregiving associations and groups to provide resources that help family members cope with the challenges involved in caring for a loved one

In addition to these resources, a quick search on Google plus your loved one’s city or state can bring up more caregiving resources that are beneficial to you and your loved one locally (e.g. Caregiver Resources Nevada).

Take Away

Informal caregivers and real-life superheroes; and this is why at Amy’s Eden, we dedicate enough time to create guides like this to help them thrive in their caregiving role.

While providing care for your loved one, ensure you prioritize self-care, as you need downtime to engage in activities that bring joy to you. Remember, you don’t need to feel guilty about taking a break, as you can easily employ the services of a respite care caregiver to provide adequate care while you’re finding relief.

Amy’s Eden respite caregivers are equipped to provide high-quality care for your loved one in their own home. Feel free to contact us today and learn more about how we can help.