I'm New to Caregiving - What Now?

Introduction to Caregiving

Caregiving can be both rewarding and challenging. Caregiving involves providing support and assistance to individuals who may be elderly, disabled, or facing health issues. This role comes with a wide variety of responsibilities ranging from medication management, physical assistance with daily tasks, and more.

As a new caregiver, it’s important to understand that your role is not just about physical assistance; it also involves emotional support and self-care.

What Comes Next

Caregiving is not just a change in responsibility; it is also a change in your identity when someone is suddenly dependent on you. Knowing ahead of time what to expect can be the difference between navigating blindly and having a plan. Here are some of the things to come.

Accepting the Role

Truthfully, accepting a caregiving role is not always a choice. Even when it is something you choose to step into for a loved one, the weight of the responsibility can be overwhelming at the beginning. Having complex emotions around it are entirely normal, and it doesn't make you a bad person. This is a lifestyle change and adjusting can bring up a variety of feelings.

Anger/Frustration

Becoming a caregiver can be overwhelming, especially at first, as the sudden change in responsibilities can lead to anger and frustration. You might feel a loss of your previous lifestyle, which can cause resentment toward your situation or the person you care for. Watching a loved one struggle can intensify feelings of helplessness and rage. The lack of support from others can further isolate you, making it harder to cope with the demands of caregiving. Juggling tasks like medical appointments and daily care can result in both physical and mental exhaustion. These emotions are a natural reaction to a difficult transition, emphasizing the importance of self-care and having support systems in place during your caregiving journey.

Anxiety/Stressed

You may find yourself constantly worrying about your loved one's condition, wondering if you are doing enough to help them. The responsibility of managing their needs can feel daunting, leading to sleepless nights and persistent thoughts about what might go wrong. As you navigate this new role, you might also struggle with feelings of uncertainty, questioning whether you are making the right decisions or if you are adequately supporting them.

Guilt

As a caregiver, you may often find yourself grappling with feelings of guilt. It's common to question whether you are doing enough or if you are providing the right kind of support. This uncertainty can be overwhelming, especially when the responsibilities of caregiving are new to you. You might feel torn between your own needs and the demands of those you care for, leading to a sense of inadequacy. Remember, it's important to acknowledge these feelings rather than suppress them. Guilt can stem from the fear of not meeting expectations, both your own and those of others. A level of guilt doesn't mean you are doing bad, if anything it means you care enough to be worried.

Grief

As you step into the role of a caregiver, you may find that the transition brings a profound sense of grief, not just for the loved one you are caring for, but also for your own identity. You might grieve the freedom and spontaneity that have been replaced by routines and obligations. This shift can create feelings of isolation, as you navigate a landscape that often feels foreign and overwhelming. In this new role, it's common to experience a sense of mourning for the relationships and activities that may have taken a backseat. You may feel a deep sense of sadness for the person you are caring for as their condition progresses. You may be grieving the expectations you had for your loved one, and your own life. Acknowledging this grief can help work through it. Remember, it’s okay to seek support and to honor both your feelings and the journey you are on.

Connect with Your Loved One

Understanding your loved one's condition can significantly improve the care for them, and for you. Knowing what symptoms to look out can prepare you for what to do when they happen, and when to reach out for help from a medical professional.

Do Some Research

Ask your loved one's doctor for suggestions on resources where you can find more information. Some offices may be able to print out information sheets or follow up care sheets giving you an overview of the diagnosis. Seeking out professional sources online can also be beneficial. Rather than opinion-based blogs or news articles, focus on diagnosis specific websites and medical articles from reputable sources. It can be easy to want to Google prognosis or "homeopathic ways to cure" an incurable condition, but in the beginning, stick with the basic understanding of the condition rather than spiraling trying to solve it.

Understand the Changes

Knowing symptoms is the first step to understanding changes. With some degenerative diseases, like Alzheimer's and Parkinson's, behavior changes can happen. With other diseases like cancer or multiple sclerosis, physical changes happen long before cognitive changes do. In all of these scenarios, understanding why changes occur can help to separate the actions from the person.

A common outcome with brain diseases are changes to a person's personality. Someone who may have once been warm and kind can suddenly be brief and cruel. Understanding that these changes are not deliberate is important, especially when your loved one acts out of character. Changes in dependency level like going from being full mobile, to limited mobility can also change your loved one's temperament because just like you, they are going through changes they haven't yet come to terms with.

Expect Tough Times

Even when you're further in the process of taking care of your loved one, there can be times when something unexpected happens. This sudden change can bring up some of the previous emotions and even new ones. Just like with the beginning of your caregiving journey, with each change in symptoms, abilities, and routines with your loved one over time it will get easier. In the meantime, though, taking care of yourself if equally as important.

Find Common Ground

When things get tough, finding common ground with your loved one can help improve cooperation, and avoid unnecessary conflict. If your loved one is of sound mind, having a conversation with them about their comfort level can be helpful to get an idea of how to start.

Does your loved one want help with bathing yet?

Do they prefer to cook their own meals or have assistance with them?

Do they prefer the home A/C be warm while you prefer cold?

While they may seem like silly questions, in tense situations like transitioning into being a carer and your loved one into the role of being "cared for", even minor misunderstandings can suddenly be a catalyst for an argument. Getting a firm understanding before you really begin can prevent these disagreements long before they happen. Having a written agreement or written expectation list can help. Give yourself reminders of why you are caring for this individual and how important they are to you. Set aside time for you both to bond like listening to familiar music together, taking a walk, reading separate books side by side in silence. These small moments help build up positive emotions that truly counter the negative long term.

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Attend Your Own Needs

Your loved one's care is important but so is care for yourself. My favorite analogy is

"You can't pour from an empty cup."

How can you give to someone else, when there is nothing left of you to give? This is one often overlooked part of caregiving: self-prioritization.

Caregiver Burnout

Unlike work burnout, there is a unique type of burnout that comes with caregiving. When someone relies on you to meet their needs, it is much harder to walk away and take time to yourself. Recognizing the signs of caregiver burnout are important and continuing through it can not only increase the stress, but it can also lead to personal behaviors you may not normally do. One of the most common causes of elder and disabled abuse is caregiver burnout. Some signs to look out for are: Fatigue, micromanagement, emotional detachment, quick to anger. Physical signs may begin to appear also in the form of frequent headaches, unexplained body pains, weight loss or gain, and being sick more often. All of these are side effects of stress, which is the core foundation of caregiver burnout. While this is a high-level overview, we will go more in depth of caregiver burnout in a later article.

Self-Care

It's easy to fall into the self-care trap where every article tells you to "eat healthy foods, exercise, get 8 hours of sleep", which only leaves you feeling more stressed because now you have to somehow fit all of this into your day too. That's not realistic for most of us, and that's okay. Instead of focusing on running a mile or going to the gym, lay down on the bed and do simple side lying exercises like clamshells or leg lifts. The purpose isn't just for the physical health, but because exercise even in minor forms increase dopamine in the body. It has been shown to improve mode and provide energy, which at this stage is much needed.

Eating healthy seems simple enough, but when it requires you to cook and meal prep and grocery plan suddenly its yet another overwhelming list of tasks. Focus on eating things that are simple to make, like apples with peanut butter or a turkey sandwich on whole wheat bread. They are low effort, nutritious, and most of all: simple. If you notice yourself eating more than usual, it may be a form of stress eating. Low calorie options like crushed ice with flavoring or frozen grapes can help with the urge to eat, without adding another concern to your plate.

Beyond the physical health, mental health is incredibly important.

Taking brief time to talk to someone, blocking out a 30-minute chunk to read a book (not doomscroll the internet!), enjoying a long hot shower -- all of these small periods of time add up. One of the best pieces of advice given to most new parents are "Sleep when the baby sleeps". It is not too far off with caregiving, that sometimes you have to fit in time for yourself when your loved one is settled in.

Forgiveness

One of the biggest aspects of self-care, is self-forgiveness. You're not going to be able to do it all, all the time. Sometimes you might forget a medication dose, and it feels like you've failed your loved one. You haven't -- they may have done it before and likely you have forgotten your own before. Reach out to the doctor's office or read dosage instructions and modify your plan. Getting frustrated happens, it's okay to walk away. It doesn't make you a bad person it makes you human. Forgive yourself, take a minute to recuperate, and move forward. When it feels overwhelming, reach out for support.

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Find Caregiver Support:

Start early and find resources in your area that can help in your caregiver journey. Insurance sponsored home health aides, private help, and volunteers can provide a much-needed break. Possible options include but are not limited to:

Adult Day Care

Being with a loved one 24/7 is just not realistic. For loved ones who are less able to be alone, adult day care may be a good alternative to a home health service. Adult day cares provide social interaction and usually have planned events during the day to keep participants engaged. Some programs offer meals or community outings. Usually, programs run 6 to 8 hours a day and some states offer transportation to and from for a small fee, or sometimes free.

Home Health Services

A common option for relief is hiring an in-home carer, or a home health aide. These types of caregivers are mainly provided through caregiving agencies with specific requirements to be able to work with your loved one. While some people opt to use websites like Care.com, others may prefer working with a company that can run insurance for payment. There is no wrong option as long as you have peace of mind, and a break.

Insurance Sponsored Programs

Health insurance is an overlooked option for resources outside of home health. Some plans cover additional benefits such as meal delivery, mobility equipment, transportation, and even monthly benefit cards to help with groceries and utilities. While not all plans offer the same benefits, calling your loved one's insurance can help uncover additional benefits they are already paying for, that can be used to support you and their journey.

Meals on Wheels

Meal planning is hard enough for one person, but when you have to plan for yourself, your family, and now your loved one it can be overwhelming. Multiple meals, buying groceries for two households, keeping meals fresh and rotated to avoid sickness - all of these are additional time you may not have every single week. Meals on Wheels is a volunteer run program that offers free, discounted, or sliding scale paid meals for adults over 60. Having nutritious meals available for your loved one not only helps you, it also helps prevent self-neglect in your loved one making food easy and accessible.

Respite/ Relief Programs

One of the most under-utilized options is respite services, which are private paid or state funded programs that provide caregiver relief on a periodic basis. Some respite programs allow a few hours or around the clock care depending on your approval and budget. Finding a respite provider longe before you need it can help you plan for the adjustment later in your caregiving journey. Find respite services in your area here.

Other Support

Churches, Veteran Affairs, and state funded case workers are all options to look into to provide support for both yourself, and your loved one. Many religious associations offer free phone calls or check ins. Case workers often work with your loved one's interests in mind and advocate for their best treatment and care. While veteran benefits may have some additional steps to be accessible, it does not hurt to look into their offerings for additional support.

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Long Distance Care When You Can't Be There

Sometimes caring for a loved one comes with a different type of hurdle: distance. Being further away from your loved one can add an additional layer of worry. Thankfully, as time has progressed staying connected is easier than ever.

Home Security Systems

In a world where doorbell cameras are the norm, it's not a stretch to use home security as a method of assisting your loved one. While doorbell cameras can be helpful to make sure you know who is coming and going at your loved one's residence, it is not the end all. Notification systems that alert when doors open, window security alarms, and indoor cameras can all be beneficial in keeping up while being distant. The ability to see your loved one via camera or be notified if the front door opens at midnight can help handle concerns in real time. This can especially be useful for wandering individuals. An important note is that while this option may be beneficial, privacy is still a concern and formal consent or legal permission to add cameras inside a home may be needed.

Virtual Doctor Visits

With some insurance companies, telehealth visits are covered. Not only does this eliminate the need for transportation for your loved one, speaking with the doctor beforehand can also guarantee you can be a part of the virtual visit through a computer or mobile link. Being present to advocate and ask questions provides important support, and it keeps your informed. This accessibility is also incredibly beneficial for people with mobility concerns who may struggle with tradition doctor offices.

Local Medical Transportation

When virtual doctor visits are not an option, medical transportation may be an option. Some cities/ counties offer transport for their residents, especially those over age 65. Other locations may offer private pay services or appointment pickups through insurance. Calling the insurance to ask if it is a covered service is a great first step. When none of these options are available, setting up an Uber or Lyft for you loved one can also help to alleviate some of the worry about them being able to get proper medical care without having to wait for you to bring them.

Medical Alert Systems

You've likely seen the commercials for LifeAlert, a wearable necklace device that can call 911 with a button, but did you know there are far more options for medical alert systems? Some options like the wearable necklace can be helpful if your loved one falls and is unable to get up. Bay Alarm Medical provides an alert watch button or an alert keychain for real time emergencies in and out of the home. Another option is the wearable Medical Guardian that uses eSim cards, much like a cellphone, to provide access to 911 anytime. Even large name brands like ADT, yes the home security company, offer fall detection and in home medical alert systems.

Neighbors/Friends/Churches

If your family member is part of social circles, or is familiar with people in their neighborhood, it doesn't hurt to provide your contact to those individuals to have a second, third, or fourth set of eyes that keeps your loved one in mind. Even just observing if the weekly trash went out, or the mail isn't piling up can significantly improve outcomes in noticing something wrong. Local police stations or fire stations may also have registries for individuals with mental or physical ailments that make them a higher risk. Registering your loved one with programs like Smart911 can also simplify the process if an emergency ever did occur by having important information on file.

Video and Phone Calls

Planning regular time to connect with your loved one is important. Regular communication helps to keep a bond while you care from afar, but even more importantly it can help you know if something is abnormal. Having regular scheduled times to call or video chat keeps consistency and gives your loved one something to look forward to. It also prevents long periods of time between contacts, which can be crucial for those with a higher risk of falls or wandering.

The beginning stages of caregiving can be daunting, but with time and patience it will get easier. Knowing the tasks that come with caring for your loved one help set a foundation for where to start, and how it will progress. Building up skills and learning the basics can help provide you with the tools to give the best possible care.

When you're ready for the next step, check out tasks you can expect to do in your Caregiver Responsibilities.

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