The 2020 Ultimate Guide to Caregiving
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In life, we do a lot of things without thinking too much about them. Every day, we bathe, go to the bathroom, get dressed, prepare food, and run errands, and for much of our lives, we do it all independently.
However, for some, it may not be as easy to carry out these daily tasks. Whether it be due to aging, illness, or surgery, there are many people who need help taking care of themselves throughout the day. Caregivers can be a necessary resource to provide the assistance and support they need to live well.
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.
Types of Caregivers
There are three types of caregivers, usually differentiated by their relationship to the person receiving care, the type of assistance they provide, and whether or not they receive financial compensation for their help.
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.
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:
- Assistance with personal care: This can include assistance with tasks such as eating, bathing, getting dressed, going to the bathroom and grooming.
- Housekeeping: The person receiving care might need help with the upkeep of their home, including laundry, dishes, taking out the garbage and vacuuming.
- Meal preparation: This can include going grocery shopping, monitoring nutrition, and cooking
- Transferring: The person receiving care may need help getting in and out of bed, their wheelchair, etc.
- Transportation: You may be responsible for transportation to and from doctors appointments and other errands
- Medication monitoring: This can include making sure the person receiving care takes their medication at the proper dosage and at the right time of day and assisting with medication administration
- Medical care: If certified to do so, you may be responsible for assessing the care receiver’s medical needs and providing them with the necessary day-to-day medical assistance. If not certified, you may be responsible for arranging care from a medical professional.
- Management of finances: Typically a duty for family caregivers, you may be tasked with managing your loved one’s finances if they are unable to do so.
- Emotional support: Of course, in addition to all of the practical duties, you will also serve as a companion to the person receiving care. While they are a patient, they are a person first and foremost. Whether they are a family member, friend, or client, be sure to interact with them and build or foster your emotional connection with them.
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.
Skills You Need to Become a Caregiver
Being a caregiver can be stressful, but it can be especially hard if you don’t have the right skills for the job. Here’s a checklist of some of the qualities and skills you should possess if you want to become a caregiver:
Communication skills are important as a caregiver. Not only will you have to communicate with the person receiving care if they are capable of writing or speaking, but you will also be expected to communicate regularly with their family members and medical professionals.
Caregivers need to remain calm in the face of many stressful or strenuous situations. Whether you’re treating a client with significant physical or communication issues, the person under your care is being rude or uncooperative, or an accident requiring cleanup occurs, patience is a must.
Empathy & Compassion
In ‘caregiver,’ the word ‘care’ doesn’t just describe the work you’re doing. With this job, you should genuinely care about helping those who need it, and you should be able to connect with them and tune into their emotions to provide them with the best support.
Caregivers need to be observant in order to do their jobs well. You should be able to assess your client’s needs even if they don’t communicate them to you as well as notice changes in your patient’s condition so you can report those changes to family members and medical professionals and adjust your care accordingly.
Being a caregiver involves fulfilling many different duties, and you should be able to manage your time wisely so that you can get everything necessary done during your shift.
As a caregiver, you may be responsible for helping your client bathe or go to the bathroom, so your own personal hygiene is imperative. You should also be capable of helping with minor cleaning tasks around the house, such as vacuuming and laundry.
It’s likely that problems, or even crises, will arise while you’re working as a caregiver, and it is important that you are able to remain calm and think on your feet in these kinds of situations.
Caregiving can be a difficult job, but approaching it with a positive outlook can help make it a better experience for both you and your client. When you remain positive on the job, the quality of your care is better and your client is more likely to look forward to seeing you every day.
Communication skills are important as a caregiver. Not only will you have to communicate with the person receiving care if they are capable of writing or speaking, but you will also be expected to communicate regularly with their family members and medical professionals.
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.
Can I get Paid as a Caregiver for a Family Member?
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.
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.
If your loved one is a military veteran, they may be eligible for 4 different plans that could help you financially.
Veteran Directed Care: Similarly to Medicaid, Veteran Directed Care provides monetary support for long-term care services. It is available in 37 states, the District of Columbia, and Puerto Rico for military veterans of all ages and provides them with a flexible budget to choose the services they require. The veteran can choose any caregiver, including any capable family member.
VA medical centers determine eligibility for this benefit. Click here to find a center nearest you for more information.
Aid and Attendance (A&A) Benefits: These benefits are intended to help cover the cost of a caregiver for veterans that qualify for VA pensions.
The vet must meet one of the following requirements to receive these benefits:
- Requires help with tasks of daily living such as bathing and eating
- Is confined to bed because of a disability
- Is in a nursing home because of physical or mental incapabilities
- Has very limited eyesight, even with corrective lenses
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.
Housebound Benefits: If a veteran qualifies for VA pension and is housebound due to a permanent disability, they may qualify for Housebound Benefits to supplement the pension. The application process is the same as for A&A benefits, but you cannot receive both at the same time.
Program of Comprehensive Assistance for Family Caregivers: This provides financial assistance to family caregivers of veterans who were traumatically injured in the line of duty on or after Sept. 11, 2001, and need supervision or assistance with activities of daily living.
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.
Long-term Care Insurance
If your loved one has long-term care insurance, it may cover the cost of in-home care. While some plans may not extend that coverage to paying family members living in the home, you may find it useful to speak to the care recipient’s insurance company to see if that benefit is available to you.
There are many other programs potentially available to you, and it may be difficult to find them or sort through their eligibility criteria to find the best one for you. This program locator will ask you a few simple questions and help you find any financial assistance programs in the United States that you or your loved one may be eligible for.
Dependent Tax Exemptions
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.
Being Paid by Your Family Member
If they have the income or independent funds to do so, consider asking your loved one to compensate you for your assistance as they would a professional caregiver. Though it may be awkward and uncomfortable, it could be what you need to relieve some of the financial stress you may be experiencing. If your loved one reacts negatively to the request, consider a session with a neutral third party present, such as a family therapist.
Draw Up a Family Care Plan
Whether your loved one is paying you through financial assistance or their own personal funds, it can be helpful to draw up a family care plan that lays everything out in writing and acts as a contract so there are no misunderstandings. It should include wages, the services you will provide, the length of time they will be provided, and any other important information. Consider involving other family members or loved ones so they’re also aware of the details of the situation and agreement.
Be sure to also keep an ongoing professional record of dates of work, services performed, and the amount of the payments. This will be useful when reporting the income on your taxes or if your loved one applies for Medicaid. It is important that you report the money you receive on your taxes, as failing to do so may prevent your loved one from qualifying for Medicaid in the future.
Staying Organized as a Caregiver
As a caregiver, it can be incredibly hard to keep track of everything, from medical information to care plans, and make sure everyone who needs that information is in the know. The University of California, San Francisco’s Orientation to Caregiving suggests organizing all necessary information in one place, including:
- 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.
Apps for Caregivers
You might also consider compiling a majority of this information in a secure app that allows it to be available anytime, anywhere to any authorized person. Luckily, there are many apps that can help you stay organized and reduce stress so that you can focus on providing the best care. Some of these apps include:
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.
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.
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.
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.
Selecting the Right Mobility Tool
When it comes to choosing a mobility tool, there are two key factors to look at: health and lifestyle.
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).
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.
Mobility Tools: Uses, Pros, and Cons
Selecting the right mobility product is important to giving one the needed support to stay mobile. Below, we've broken down the various mobility aids and products to help with stability and support. When going over the right choice, be sure to involve the person you’re taking care of and consult a doctor.
Those that have a minor walking injury on one leg but can still walk.
Lightweight and portable, prevents loss of balance
Not weight bearing, only provides one side of support
Those coming out of surgery or with a temporary injury requiring no weight to be applied to a specific side
Offers great support, portable for easy storage
Can be hard to use when starting out, takes away accessibility of arms
Those that have balance and walking issues in need of support
Offers a stable source of support, folding walkers offer portability and easy storage, features storage pouch for extra accessibility
Can create problems if trying to use in a compact space
Those that have greater problems with walking, standing, and balance
Rolls for effortless use, can double as a chair with a seat, offers more accessibility with storage pouch under the seat, folds up for easy transport, brake system offers even more support and functionality
Larger size makes it less suitable for compact spaces
Those that cannot put weight on their foot or ankle, those with short-term injuries or coming out of surgery
Its design makes it easy to use and mobile-friendly, easy to use in compact spaces
Obstacles such as small inclines, bumps, steps, etc can be troublesome, use for long periods of time can become uncomfortable
Those that struggle to sit down or stand up
Extremely portable and universal for most chairs
Only provides support for the lower body, additional balance support may be needed
Those with standing/walking issues that move around a lot but are not necessarily standing or active
Lightweight and portable making them easy to store in the car or when transporting
Their larger size makes them not suitable for compact spaces when in use, stairs and other inclines can be an issue
Those with walking issues that can put little to no weight on their lower body
Provides the maximum support for those with walking issues, designed with comfort in mind for long-term use, most fold up for easy storage and transportation
Their larger size makes them not suitable for compact spaces when in use, stairs and other inclines can be an issue
One of the significant disadvantages of 'aging in place' or living at home with any health condition or disability is the lack of accessibility. Most living spaces are not designed for those that struggle with day-to-day tasks. As a caregiver, it's essential to keep this in mind.
As you walk through the house, look at the features that may give them issues. This includes small details such as doorknobs, light switches, the height of cabinets, etc. Ask them if they can easily access things. If the answer is no, then consider products/equipment that might make it easier.
Here are a few accessibility items designed to make small tasks easier:
Reacher Grabbers: These are designed to offer an extended arm to reach for things that are high up. They feature a grabber piece at the end to make grabbing objects easier.
Overbed Tables: Perfect for anyone that may be bedridden or in need of a hard surface.
Easy Key Turner: Designed for those with arthritis, poor dexterity, or a weakened grip.
Carex offers a whole line of daily independent living aids that are created for small tasks that can be difficult with certain conditions.
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.
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.
Did you know that, according to the National Institute of Aging, 80% of falls happen in the bathroom? For that reason alone, we've dedicated an entire section of this guide to bathroom safety. Try the following tips:
Install the right bath/shower
Most older homes have bathtubs/showers that are not as easy to get in and out of. This poses a high risk of tripping and falling. Installing either a walk-in shower or tub can help reduce the risk of injury. Here's a review of the best walk-in bathtubs for seniors.
Install a grab bar
Grab bars can be installed in the shower/bathtub or around the toilet to offer support when moving in and out as well as sitting and standing.
Keep toiletries in one spot
Keeping regularly used items such as toothbrushes, toothpaste, and medications in one spot will help keep from having to rummage through drawers and cabinets.
Use a bath mat
The floors of bathtubs and shower can become slippery, especially if they're made of tile. A bath mat will offer grip and support.
Install a hand held shower spray
Bathing for seniors and those with disabilities can be troublesome when having to move around in the shower. Hand-held shower sprays offer flexibility when bathing.
Install a raised toilet seat
Using a traditional toilet can be hard for seniors when sitting and standing. A raised toilet seat reduced the range that they have to sit and stand. Raised toilet seats with handles offer even more support.
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.
Gather Necessary Information
Before seeing any medical professional, you will want to have all relevant information with you and organized so you can find it if necessary. This way, you can bring up any issues the care recipient may be having following a treatment or procedure or with their medication, and if the doctor has any questions for you, you have all of the facts ready.
Earlier in the guide, we suggested compiling all of this information in a physical binder or in an app or apps on your portable device to keep it handy and arranged neatly. Be sure to bring whatever you use to organize the patient’s information with you when going to doctor appointments or to the hospital.
Communicating with the Care Recipient
Communicating with your family member or client, if they are able, allows them to provide their own input and have a role in their own care. Talking to them before doctor appointments, in particular, helps to avoid conflict and misunderstandings between the two of you during the conversation with the doctor.
Before the visit, AARP suggests talking with the care recipient about what they hope to accomplish with the visit. This way, you come to a mutual understanding and have the same goal, whether it’s to have certain questions answered or to share new symptoms or issues with the doctor. This also gives you the opportunity to discuss any issues that may be sensitive to the care receiver and negotiate what will and will not be brought up to the doctor so that no one is caught off guard.
It can also be helpful to discuss what your role will be during the visit and how much your family member or client would like you to participate. The visit will go much smoother if you are both on the same page about when you should be in the exam room with them and which issues you should bring up versus which ones they would like to.
“The idea is to agree on the session's agenda as much as you can before arriving,” says Barry J. Jacobs of AARP.
Write Down Any Questions
Once you’ve discussed the visit with your loved one or client, you’ll want to write down any questions or concerns either of you have and bring them with you to the appointment. Leave some space for the answers between each question and indicate which questions or concerns are most important to the both of you. With it all down on paper, nothing will be forgotten and you will get all of the answers you need.
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.
In most cases, except in the case of an emergency, your loved one or client will be admitted for treatment or surgery through the hospital’s admitting office, according to Charles Patrick Davis, MD, PhD of eMedicineHealth. Often, you will speak with an admissions counselor and provide them with the necessary information regarding the stay. They may instruct you to bring your loved one to the hospital before the stay for preliminary tests, such as X-rays or ECG. This preliminary period is a good time to ask the admissions counselor or doctor any questions you have about the stay.
Some questions the University of California, San Francisco’s Orientation to Caregiving suggests asking include:
- What is the routine timeline for the surgery or treatment?
- What is the expected length of stay in the hospital?
- What condition should the patient be in when leaving the hospital (activity level, ability to eat and drink, pain)?
- What signs or symptoms should I be aware of once we return home?
In the case of an emergency admission, you will go through the emergency department rather than the admitting office.
The patient will then be placed under a certain level of care at the hospital depending on their needs. For example, they may be placed in the Intensive Care Unit (ICU), which is reserved for those who need the most care and attention. If they need close monitoring but not intensive care, they will be placed in the telemetry or step-down unit. Otherwise, it is likely they’ll be placed on a general surgery or medical floor. They can be upgraded or downgraded from their placement at any time and transferred to another unit or floor depending on their condition.
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.
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.
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.
One of the major decisions made as a patient’s illness progresses is when to move them into hospice care. Hospice care is a form of palliative care (care that is focused on relieving or managing painful symptoms) that is for patients whose life expectancy is six months or less. Under this care, the focus is no longer on attempting to cure or slow the illness, but instead on alleviating pain and making the patient as comfortable as possible.
Usually, the patient will ultimately decide when they wish to be moved to hospice care, whether that be at the time the decision is made or through their living will. They will also decide if it is best for them to receive this care at home or at a facility like a hospital or in-patient center. According to University of California, San Francisco’s Orientation to Caregiving, this decision is not always permanent. “If the disease goes into remission or a cure becomes available,” it notes, “a patient can stop hospice and begin aggressive curative attempts again.”
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.
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.”
In addition to helping manage physical symptoms, patients in hospice care need mental and emotional support. Nearing the end of one’s life, especially if conscious and alert during this time, can be overwhelming and depressing. It’s imperative that the patient be supported and that emotional pain is given equal attention to physical pain.
The patient may feel afraid of the unknown of what comes next or worry about the loved ones they are leaving behind. They may be scared of being alone in the end or may already feel isolated from those around them. Although it can be hard to hear, encouraging them to talk about these feelings can help.
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
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.
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.
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 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.
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?
Being a caregiver can be incredibly stressful and tiring, especially if the person receiving care has rapidly deteriorating health and requires almost all of your time and attention. Because of this, caregivers can become burnt out and mentally, emotionally, and physically exhausted, potentially developing anxiety and depression or even become sick themselves.
Your health and mental wellbeing matter too, and it’s important to be able to understand burnout, recognize the signs, and know what you can do to prevent or treat it. If you aren’t taking care of yourself first, it will be impossible to provide the best care to your client or loved one.
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
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- 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
RECOGNIZING SYMPTOMS OF CAREGIVER BURNOUT
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:
- Withdrawal from friends and family
- Loss of motivation and interest in activities previously enjoyed
- Feeling blue, irritable, hopeless and helpless
- Feeling like you’re losing control of your life
- Changes in appetite, weight or both
- Changes in sleep patterns
- Getting sick more often
- Frequent headaches
- Feelings of wanting to hurt yourself or the person for whom you are caring
- Emotional and physical exhaustion
- Inability to concentrate
- Difficulty making decisions
- Irritability or impatience
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:
- anxiety and irrational fears
- difficulty making decisions
- increased use of drugs and alcohol
- lack of concentration
HOW TO PREVENT OR TREAT CARETAKER BURNOUT
It’s important that you remember to take care of yourself so that you can prevent or treat burnout before it severely harms you or gets to the point of compassion fatigue. “Think of the emergency briefing,” says Heather Ford, Licensed Professional Counselor for Destiny Springs Healthcare. “Airline passengers are advised to put on their oxygen masks before helping others. Caregivers need to heed the same advice.”
Below are a few examples of ways you can relieve some of the stress of caregiving and take care of yourself first so that you can best be there for the ones who need it.
Advice from Other Caregivers
We asked other caregivers for their best advice when it comes to caregiving. Below you’ll find a wide variety of advice ranging from professional caregivers to caregivers caring for family members.
The best advice I could give someone who is or will be in a caregiving mode is to set aside time for fitness for the caregiver and also the one being cared for in whatever capacity they can handle. It is essential to have a positive and healthy escape from the overloaded giving side of caregiving and to invest time into the receiving end which somehow recharges, refreshes and re-energizes after a simple walk or meditation or stretching. Fitness also benefits the one being cared for by either helping them to be more physically able to help out the caregiver or just releasing mood enhancing hormones that provide for a more stable environment which is critical in a situation where one person is dependent on the other. It is helpful for the caregiver to sometimes take a break from the situation and do their own workout and other-times, the workout can be used as a time to bond with the one being cared for, as in the situation of a child or elderly parent. Go for a walk together, do chair exercises or stretch together and connect with them on a level that is more symbiotic than dependent.
I was the caregiver for my father when he was dying of cancer and my workout saved me. I have been a personal trainer to several clients who were bedridden and their families would pay me to come and stretch them and do light band exercises. This time was so beneficial not only for my clients but it also allowed the family time to decompress and brought joy in the midst of a stressful situation. I am also a mom to two boys both with ADHD and ASD and again, my workout has been a lifesaver for my own sanity but also for my sons. The workout is a positive energy release for them and fitness has only enhanced quality of life for us all. Exercise is my #1 tip for people in a caregiving role.
Focus on the now. Most care recipients' worlds get smaller as they become more infirm, and that's okay. That's not something you can fix as a caregiver, and you shouldn't feel bad that you can't. Find what still has meaning to your caree, and scale whatever that is to what they can handle today. Bring pieces and people from the outside world to your caree and let them interact at their current level. Let go of feeling like you should be doing more; be as kind to yourself as you are to your caree. Also, learn proper lifting and transfer techniques! Good technique can be a huge help to keeping the caregiver uninjured as they provide care.
I have been a caregiver for both of my parents. As a caregiver, we usually put our own needs on the back burner, in order to meet the needs of our loved one. We lose sight of what is important to us--what are MY hopes and dreams, MY goals and aspirations? We think it is selfish to focus time and attention on our own needs. However...
...Nothing is further from the truth. Unless you are paying attention to your own well being, there is no way to help your loved one--or others around you.
When you are a caregiver, it is CRITICAL to take time just for yourself each and every day. Even if you can spare just 30 minutes from your hectic schedule, do it...even if it means locking yourself away where no one can disturb you. Do something that is soul satisfying just for you--something that nourishes your inner being, and helps you to reduce stress, and keep your mind and body in balance. Meditate...listen to music...read a book you enjoy...work in your garden....take a run or go for a walk. Whatever brings you joy--just DO IT! It is important that you do not lose sight of yourself while you are in the caregiver role.
I am a mom to 8 children ranging in age from 4-17. My son Lucas is 15 and has profound special needs including limited mobility, he's primarily non-verbal, and incontinence. He needs assistance in every aspect of his life. The anxiety, stress and emotional toll of caring for him has definitely unfolded in my life throughout the years and even more so as he ages and goes through puberty. My husband and I are intentional about addressing our mental well being and needs in the midst of the chaos and part of our process involves hiring help so that we can steal away for a date night every week for a couple of hours to regroup, spend time together, and exhale. We strongly recognized our need for a break a few years ago and out of this overwhelm I created a non profit called The Lucas Project which provides respite days for special needs caregivers. Providing a solution to the problem has been therapeutic as I help myself by helping others. Self care is also a big priority for me. I walk, alone, almost daily, attempt to do yoga a few times a week, and enlist help with daily activities from my other children. Finally, community. I've been able to cultivate an online community of strong, resilient women who are raising kids with special needs and we rely heavily on each other for support, resources, and encouragement.
In these uncertain times it’s important to have your own affairs in order in the event something happens to you. Who would know how to care for your loved one? Who is the back up? Where is a playbook detailing your daily schedule to care for your loved one along with contacts? You must plan ahead for yourself and the loved one you are caring for - finding support services is essential to building your own team.
As a family caregiver for my mom, I learned that there is only so much in your control. When you realize what is and what is not, it makes your journey easier, your stress and anxiety less. As an expert in the field and someone who lost his sister who pre-deceased mom and was her caregiver, it is paramount to make a wellness plan for yourself. Do not be too busy taking care of someone else and neglecting yourself.
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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