The 2023 Ultimate Guide to Caregiving

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What is a Caregiver?

A caregiver is someone who helps an elderly person or person with an illness or disability carry out daily tasks that the person otherwise struggles with doing independently. This can be a professional, family member, or close friend, and the amount of support necessary varies depending on the person being assisted.

Family Caregiver

Those who volunteer their time to care for those close to them, such as family members or friends. These caregivers do not usually receive pay for their support and typically work another job in addition to assisting their family members or friends.

Long Distance Caregiver

Family caregivers that cannot be there physically to support their loved ones. These caregivers assist from afar, providing emotional support to primary caregivers, managing finances, or arranging for other care to be provided.

Professional Caregiver

Those hired to provide care. Professional caregivers are usually not personally related to the person receiving care, and the amount of assistance they can provide varies depending on their certification.

Types of Professional Caregivers:

Typical Caregiver Duties

The duties of a caregiver can vary widely depending on the situation. Here is a list of what you might expect to do as a caregiver:

The wide array of possible duties can be overwhelming, especially for family caregivers who are new to caregiving and work additional jobs. Be sure to first assess the needs of the care recipient and create a care plan with the help of family members and medical professionals to ensure you provide the best care possible.  

How Do I Become a Caregiver?

For family caregivers, being a caregiver may not necessarily be a career choice. Your family member or friend may grow old, have an illness, or undergo a surgery, and you may offer your assistance or be the only one available to take care of them. In this case, technically anyone can become a caregiver.

However, if you’re looking to become a professional caregiver, this section will provide you with everything you need to know to start on that career path.  

Certification

Required training to become a CNA also varies by state. The federal minimum for training requirements in the United States is 75 hours, but some states require up to 120 hours. To find more information about training requirements in your state, click here.

Training usually consists of learning about patient care, basic medical procedures, and human physiology, as well as how to assist in activities of daily living, such as bathing and grooming. You will also learn basic medical procedures such as checking vital signs and monitoring infections.

This training is typically available through community colleges, trade schools, and sometimes hospitals and nursing homes. Most students applying for CNA programs are required to obtain a high school diploma or GED and pass a physical exam and criminal background check. The physical exam is intended to ensure you are capable of heavy lifting and do not have any communicable diseases. 

Getting the Job

After receiving proper training or becoming certified, there are a variety of ways to become a paid caregiver. You can be hired by an assisted living facility or nursing home, find in-home work through a home care agency, or be hired directly by a family in need of a caregiver.

• Being hired by a facility: You will be further trained, paid, and supervised by the facility if hired. It’s easy to find a facility in your area by online searching ‘assisted living near me’ or ‘nursing home near me.’ Contact them directly or search on job boards to see if there are any openings.
• Working through a home care agency: Home care agencies can help you find in-home caregiver jobs. Like a care facility, a home care agency will train, pay, and supervise you. To find an agency near you, click here.
• Being hired directly by a family: If you don’t wish to go through a facility or agency to become a caregiver, it is possible to be hired directly by a family in need of assistance.

Websites like care.com will connect you directly to a family, or you can check help wanted sections in the newspaper or ads on bulletin boards in common gathering places like libraries or places of worship. If you go this route, you could be paid either directly by the family or by the state. 

Being Paid by the State

If you are hired by a family directly, you may be paid by the state if the person receiving care needs Medicaid to help pay for care services. Caregivers receiving pay from the state are referred to as Individual Providers (IP) and must meet additional training and background check requirements as well as sign a contract with the state’s Department of Health and Social Services.

If a person using Medicaid to pay for care services wishes to hire you as their IP, they will contact their social worker or case manager. The case manager will conduct a care assessment and come up with a plan detailing the care tasks you will be authorized to do and the number of hours you will be paid for.

For more information on getting a caregiving job, care.com provides great resources on interviewing and writing a resume.  

According to AARP, about 41 million Americans are caregivers for an ailing or aging loved one without pay. On average, they will provide this care for 16 hours a week, which can be time-consuming, emotionally draining, and make it hard to work a full-time job or any job at all. It’s important that these caregivers are aware of the resources available to them to help them financially while they care for their loved one.

Medicaid

It’s possible that your loved one is eligible to receive Medicaid coverage for in-home care. The programs vary by state, but if they are eligible, some states will pay family caregivers. Unfortunately, they often exclude legal guardians or spouses, and some will pay only if you do not live in the same house as the care recipient.

To find someone to contact for specifics about your state’s Medicaid program, click here.

If your loved one qualifies for Medicaid and you enroll them in this in-home care benefit, a case manager will assess their needs and draw up a care plan for them. Then, a budget will be provided and the care recipient will select a caregiver. If your state allows you as a family member to be selected, you can then receive payment from the state.  

To receive this benefit, complete the A&A application and explain in detail why a caregiver is needed. The form can then be mailed to the pension management center in your state or turned in in person at your regional VA benefits office.

The veteran must be enrolled in VA health services, and the caretaker must be 18 or older and can be any family or step-family member, including spouses and extended family, or full-time housemate of the veteran.

Stipends vary widely depending on how much time is spent taking care of the veteran, and if you are eligible for this program, you can also receive access to health insurance, training, coverage of travel expenses related to the care, and up to 30 days of respite care yearly.
This program is set to be expanded for families of all veterans, but as of November 2019, that expansion has yet to take place.  

Even if you are not eligible for any financial assistance programs, you may still have options to receive extra income as a family caregiver. If your loved one qualifies as your dependent, you can claim them on your tax return and receive tax exemptions.

To qualify as a dependent, your loved one must have a yearly income of less than $4,200 (2019 tax year, may be subject to change). This does not include non-taxable income such as social security. They do not have to live with you, but you must be responsible for at least half of their living expenses.

For more information, this tax tutorial from the IRS may be helpful. 

• Key information, like the patient’s insurance policy number, emergency contacts, and a list of contact information for their medical team and other professionals involved in their care.
• Medication log, including the names of medications, their dosages, the date of last refill, the prescribing doctor, and any issues the patient has had with any of the medications listed. 
  
• Treatment log, with a list of treatments, their dates, the doctor associated with the treatment, and any side effects or issues related to the treatment.
• Copies of lab reports and blood tests for easy quick reference at medical appointments.
• DVDs of MRIs, CT scans, and pathology reports, which can be used to get a second opinion or if seeking new treatment.
  
• Calendar of past and future doctor, therapy, and treatment appointments. Any other important schedules.
• Resources and information, including any information or forms provided by the doctor and any research done on the illness.
• Health history, including any allergies, dietary restrictions, and past illnesses or other illnesses the patient is being treated for.
• Notes and questions section for notes to write down during appointments or questions to be answered by the doctor.
• A care plan for easy reference to any pertinent information, including parts of the plan involving other caregivers, financial information or other aspects of the agreement. 
  

You might consider keeping all of this in a large, three-ring binder with dividers for each section and always having it readily available in case of emergencies. Be sure to have lined notepads that are three-hole punched so any notes taken during can easily be slipped into their appropriate sections.

Care Zone - This app provides you with one convenient place to keep a calendar and to-do list, store medication and insurance information, keep a journal of health updates or important information, and share everything with other caregivers or family members safely and securely. It is free and available for both iPhones and Androids.

CaringBridge - CaringBridge allows you to create a personalized, private website to share important information and updates with family and friends in one easy and secure place. It also provides a place to ask for help from loved ones and even start a fundraiser to cover medical costs or the cost of care. It’s free and available for iPhones and Androids.

Lotsa Helping Hands - This app allows you to create a community of people that can help take care of a loved one. With Lotsa Helping Hands, you can create a calendar and assign tasks to different community members, share updates and announcements, and post messages of love and support for everyone involved. It is free and available for iPhones and Androids.

Medisafe - Medisafe is an easy-to-use app that allows you to keep track of medication information and sends you personalized medication and refill reminders. It also provides you with important drug interaction warnings and medication coupons for discounts at drugstores throughout the U.S. It is free and available for iPhones and Androids.

eCare21 - This app lets you monitor your loved one or client’s vitals, sleep, and other important health information with devices like FitBits and smart watches. The app itself is free to download and available for iPhones and Androids, and monthly subscriptions start at $7.95.

Key In-Home Factors to Consider When Caregiving

In-home caregiving poses a challenge in and of itself. Certain conditions require changes in the environment to improve the quality of life while offering independence. Knowing what to look for as well as the right tools/products to have in place can help ensure the person you're caregiving for is safe and able to perform most day-to-day tasks.

Stairs

Are the stairs easy to climb? How steep are they? Is there a bar to grab on to? If mobility is a big challenge, consider installing a stairlift. You can find a review of the best stairlifts here. If there are smaller steps through the house or outside, ramps provide an excellent solution for easy access.

Tight Spaces

If the person you're caregiving for needs more significant mobility products (such as walkers, wheelchairs, etc.), they may have trouble moving in tight spaces. A great way to solve this problem is by installing grab bars or having furniture/stands they can grab on to when walking through those spaces. You also may want to consider widening halls if possible.

Doors

If someone has trouble walking and requires assistance, it's essential to take note of any doors that may be difficult to maneuver. Consider installing assistive technology such as push-button door openers to make things easier.

Health

When it comes to health, ask how hard it is for them to get around and how much support they need to walk, change from sitting to standing, etc. If they have only minor problems, then consider items like canes. If mobility is more of an issue, walkers, rollators, or wheelchairs may be in consideration. Consult their doctor to see what solution is best based on their condition(s).

Lifestyle

When we mention lifestyle, we're talking about any hobbies, how active one is, and other factors that involve mobility. Lifestyle is essential considering two people with minor mobility issues may spend different amounts of time on their feet. A person with a less active lifestyle may only require a cane, while a more active person may need a rollator to support walking/standing for long periods.

Carex offers a whole line of daily independent living aids that are created for small tasks that can be difficult with certain conditions.

Safety

According to Lifetime Home, falls are the number one cause of injury for people 65 years and older. Not only that, but their environment causes 30-50% of falls they're in (i.e., poor lighting, trip hazards, no support). This makes home safety a top priority for caregivers. We've compiled the top problems that seniors face when living at home and the solutions you can provide.

View Image Transcript

• Falls are the #1 cause of injury for people 65 years and older
• * Not only that, but their environment causes 30-50% of falls they are in (i.e., poor lighting, trip hazards, no support)

These three problems are just the top common hazards that are in play for seniors and those with disabilities. It's always important to consider other factors that may be unique to one's specific condition. 

Bathroom safety proves to be the most important precaution when it comes to in-home safety. Not only because most accidents happen here, but also because those in need of assistance are more likely to be alone in that area of the home.

Caregiving at the Doctor or Hospital

As a caregiver, you may be responsible for taking your client or loved one to doctor appointments or treatments at the hospital, and your role often involves more than transportation. It’s important to know how to prepare and what to expect before these occasions so that you can provide your best support.

Doctor's Visits

Treatments at the Hospital

In addition to doctor’s visits, you may also be responsible for supporting your loved one or client through treatments or surgery at the hospital. This process can be complex, and knowing what to expect can help eliminate some of the stress involved.

End of Life Care

Even with the best care and attention, there, unfortunately, may come a time when medical treatments can no longer cure or manage the care recipient’s illness. They enter the late stages of the illness and approach the end of their life, and during this time, comfort becomes the sole focus of their care. This is often referred to as late-stage or end-of-life care, and it’s important you understand your role and how to make your loved one or client’s final days as comfortable as possible.

Planning Ahead

This stage of the patient’s care can be stressful for everyone involved, and it can be helpful to have planned for it in advance while the care recipient was still capable of providing their input. If you can, speak with the patient in advance about their personal values and wishes for their end-of-life care so you know what to provide if the time comes.

It can also be helpful to put these wishes in writing with a set of official documents called advance directives, which include a living will and a medical power of attorney. According to University of California, San Francisco’s Orientation to Caregiving, you can get these forms from your doctor, legal offices, or state departments, and once they are signed and dated, they become official, legal documents.

Living Will

The living will is the document within the advance directives that lays out how the patient wishes to be cared for at the end of their life. If they are unable to communicate their wishes when the time comes, any guess-work is removed and caretakers are to refer to this document. This should include any information regarding the patient’s choices on do not resuscitate (DNR) orders, artificial nutrition and hydration, life-sustaining equipment, pain medication and other palliative care, and organ and tissue donation instructions. 

Medical Power of Attorney

The medical power of attorney is a form that assigns someone that the patient trusts, usually a spouse or family member, as the patient’s health care proxy. This will be the person who makes all decisions regarding end-of-life care in the event that the patient is unable to express their wishes themselves. The chosen proxy should agree to be chosen and must sign the form in addition to the patient.

Having these documents ready, as well as having any wills, deeds, and beneficiaries in order, will be helpful in reducing stress in the event that end-of-life care becomes necessary. Websites like Gentreo can help you draw up and organize these documents easily so that they’re ready when you need them. 

If your loved one is not capable of making this emotional decision and does not have a living will, it may be up to you to decide when to move them to hospice and all of the details involved with it. If this is the case, discuss the decision with other family members and try to remember what your loved one’s values are. Make decisions that reflect what you believe they would have wanted from their care.

Managing Pain

One of the main goals of end-of-life care is to help the patient feel as comfortable as possible by managing any painful symptoms they may have. The patient may experience dry or irritated skin, nausea, loss of appetite, breathing problems, temperature sensitivity, and fatigue, and as a caregiver, you can assist nurses and other specialists in relieving some of the pain these issues cause.

To help with irritated skin, you can gently apply alcohol-free lotion or lip balm, or place a damp washcloth over affected areas. Circulating air by opening a window, using a humidifier, and adjusting the patient’s bed position can all help with difficulties breathing. Pay attention to your loved one or client’s non-verbal reactions to temperature, such as shivering or curling up when cold and trying to push off covers when warm, and help them by adjusting the room accordingly. Assist them with any activities of daily living and try to make them as simple for them as possible.

Medication can also be helpful in managing pain and painful symptoms. “Don't be afraid of giving as much pain medicine as is prescribed by the doctor,” the U.S. National Institute on Aging (NIA) notes. “Experts believe that care for someone who is dying should focus on relieving pain without worrying about possible long-term problems of drug dependence or abuse.” There are also medicines that can relieve nausea and other digestive problems that can often be caused by pain medication.

If your loved one or client loses their appetite, try not to worry. Help them eat their favorite foods or serve them smaller meals throughout the day. If they refuse food, though, NIA advises not to force them to eat. “Going without food and/or water is generally not painful, and eating can add to discomfort,” NIA notes. “Losing one's appetite is a common and normal part of dying.” 

Soothe their fears by reassuring them that everyone will be okay after they pass, and that the things and people they once took care of will still be taken care of by others. It can also be helpful to let them know you’re there and connect with them through simple physical contact like holding hands.

Make the environment soothing and pleasant to be in by playing their favorite music at a low volume. According to NIA, “Near the end of life, music therapy might improve mood, help with relaxation, and lessen pain.” Think of the kinds of moments they found pleasant throughout their life and try to emulate them in their final days, whether that be by reading a passage of their favorite book or surrounding them with the people they love.

Ultimately, being present and compassionate toward the care recipient is what helps. Always talk to them and not about them, let them know you’re there, and do what you can to support them

Spiritual Support

Some patients may find it beneficial to bring meaning to the end of their life and have support in doing so. This could mean resolving issues or disagreements with those close to them or being told how they’ve impacted the lives of their loved ones. Friends and family members can also help by discussing how much they value the patient and recalling memories with them that they look back on fondly.

If the patient is religious, they may find it helpful to talk to a religious leader of their faith, such as a priest or rabbi. Praying with them or reading religious texts to them can also bring necessary comfort.      

Saying Goodbye

Although it’s a sad and stressful time, some people find hospice care to be a gift because it allows them time to prepare for the loss of their loved one and to say goodbye. You shouldn’t wait until the last minute to say goodbye, as the time someone passes can’t be predicted, but you don’t have to put pressure on yourself to say it all at once either. You can take your time to say what you need to over the period they’re in hospice.

According to The Four Things that Matter Most by Iyra Brock, those who are dying have a need to express four things before their death: I love you, thank you, forgive me, and I forgive you. You and other loved ones may find it beneficial to express the same four sentiments throughout the process of saying goodbye.

Even if you don’t know if the patient can hear you, speak to them anyway. According to caring.com, “Many experts believe that even loved ones who appear to be unconscious or uncommunicative may be aware that you are present and speaking to them with love.” Not only that, but saying your goodbyes to them out loud can be helpful in giving you closure whether your words are heard or not. 

Guilt, Grief, and Relief

After a loved one you’ve been taking care of passes, it’s natural to feel a mix of emotions, from guilt to sadness to even relief. These emotions can be intense and inconsistent, and they will vary by the day. Be sure to allow yourself the time it takes to process each emotion you may be feeling.

Guilt

Caregivers can often feel guilty after their loved one or client has passed. It may feel like despite your best efforts, you have still failed. You may think back and focus on any time you may have made a mistake or reacted poorly. It’s important to remember that death is a natural part of life and, ultimately, not a failure. Be gentle with yourself and remember that you did everything you could, even if you weren’t perfect.

You might find it helpful to express these feelings of guilt through a letter to the person who has passed. In it, you can apologize to them, say things you may not have been able to say while they were alive, and tell them anything else you may be thinking. Save the letter to reread later to help you process what you’re feeling.  

Grief

Grief is a natural part of the healing process after a loved one passes away, even if you’ve had time to anticipate the loss and grieve before they’re gone. Though some days are easier than others, the intense feelings of sadness can seem all-encompassing and never-ending, and you may try to avoid them or distract yourself. Everyone grieves differently, but allowing yourself to feel and acknowledge your grief is important.

Although those around you may expect you to be done grieving after a couple of weeks, the grief process can actually last much longer. According to caregiver.org, “Recent research has shown that intense grieving lasts from three months to a year and many people continue experiencing profound grief for two years or more.” It is not unusual to still be processing the loss months later, so try not to entertain the idea that your grieving is “lasting too long.”

However, if you are still struggling to re-integrate yourself back into daily life after six months, you may find it helpful to speak to your doctor. They can recommend treatment, such as therapy or medication, that can help you get back on your feet. Talking to those close to you about the loss or attending a bereavement support group can also help you express and work through the intense feelings of grief.   

Relief

Caregivers can often have conflicting feelings of relief in addition to their guilt and grief after the care recipient passes away, which can be just as hard to process and accept. Caregiving, especially for people with terminal illnesses, can be a demanding and draining experience. Even though it may seem contradictory to the other feelings you may have, it’s normal to feel grateful that it’s over and that you can return to the life you had before the responsibilities of caregiving.

Remember that feeling this way doesn’t mean you’re grateful that someone has died or that you regret helping them. It’s not unusual to look back negatively on the caregiving experience while still lovingly remembering the person you cared for and the moments you spent with them. “When a caregiver accepts that harboring some negative feelings about caregiving (not the care recipient) is normal and expected,” clinical psychologist Barry J. Jacobs of AARP says, “she is more likely to feel comfortable with the relief.” Though these feelings are complex, they are real and valid. You worked hard and did your best, and you deserve to have that breath of relief at the end, even if it’s bittersweet.      

How do I Take Care of Myself as a Caregiver?

Causes of Caregiver Burnout

According to Cleveland Clinic, there are a variety of reasons a caregiver can become burnt out. These include:

• The general strenuous and overwhelming demands caregiving puts on the caregiver’s body, mind, and emotions
• List item
• Role confusion, or the difficulty separating the caregiving role from other relationships you may have with the person receiving care, such as spouse, child, or friend. 
  
• Unrealistic expectations, such as expecting their care to have a positive effect on the health of the patient, even if they have a progressive disease like Altzheimers
• Lack of resources or training to effectively control and manage the loved one’s care
• Unreasonable demands, either from themselves or the care recipient, such as viewing the caregiving as their exclusive responsibility
• Being unable to recognize burnout, eventually causing it to get out of hand and harm their ability to function 
  

It’s important to know the signs of caregiver burnout so that you can recognize when to help yourself or get help. According to Cleveland Clinic and Healthline, symptoms of caregiver burnout can include:

Sometimes the stress of caring for someone and witnessing their suffering every day can also cause what’s called Compassion Fatigue. This often occurs suddenly and is characterized by the difficulty or inability to feel compassion and empathy toward others.

According to Healthline, some warning signs that you may have or be at risk for compassion fatigue are:

• anger
• anxiety and irrational fears
• difficulty making decisions
• exhaustion
• hopelessness
• increased use of drugs and alcohol

• isolation
• insomnia
• irritability
• lack of concentration
• negativity

About the Author

Stephanie Schwarten is a freelance writer and editor with a Bachelors degree in Professional Writing. She specializes in content marketing as well as both developmental and copy editing. 

About Carex Health Brands

Carex is your one-stop shop for home medical equipment and for products that assist caregivers with providing the best possible support and care for their loved ones. Carex Health Brands has been the branded leader in in-home, self-care medical products for over 35 years. Our goal is to improve the lives of our customers by bring them quality products that bring dignity back to their lives. With our three nationally distributed brands, Carex Health Brands serves national, regional and independent food, drug and mass retailers along with wholesalers, distributors and medical dealers.

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