Being a COPD caregiver is no simple or straightforward task; it requires empathy, endurance, compassion, and creativity to fulfill the many different roles and responsibilities that the job requires. It often demands a great deal of time and self-sacrifice, while also requiring a seemly endless well of energy and patience.
This can be a heavy burden for caregivers to bear day after day, causing frustration, exhaustion, and emotional strain. As a result, many caregivers find themselves in disarray, feeling so drained and overwhelmed that they neglect their own personal needs.
This kind of burnout is detrimental to your health and well-being, and adds unnecessary suffering to an already difficult task. It can also lead to negative psychological changes—like reduced patience and poor concentration—that could affect your caregiving abilities, too.
Because of this, part of being a COPD caregiver is learning how to cope with the physical and emotional burdens of the job without draining yourself in the process. However, that's easier said than done, especially if you have a very dependent loved one or patient who needs full-time care.
It's easy to get so bogged down by worry, stress, or the weight of caregiver responsibilities that your own needs fall by the wayside. But when you put so much of your time and energy into caring for someone else, it's important to remember to care for yourself, too.
That's why we created this guide specifically to help caregivers of people with COPD find better ways to cope, stay healthy, and practice effective self-care. Inside, you'll find a variety of useful strategies for improving your own well-being, including tips for reducing stress, finding sources of support, and finding time for yourself in-between demanding caregiving tasks.
Utilizing these and the other techniques in this guide can help you stay you afloat when you feel overwhelmed and help you keep up the strength to face whatever challenges come your way. When you have the means to keep your head above water, you'll find that the hardships of being a COPD caregiver are much easier to bear.
The Sacrifice that Comes With Giving Care
Some COPD caregivers are professionals who are hired either full-time or part-time to provide care to a COPD patient (usually) in their home; these are known as “formal” caregivers. In most cases, however, people with COPD are taken care of at home by their loved ones, which are known as “informal” caregivers.
In fact, most caregivers are close family members and spouses who make huge sacrifices to be a caregiver out of necessity, compassion, or love. Some caregivers even have to leave their families, jobs, and normal lives behind in order to to be able to move in with their sick loved one and take care of them full time.
That's because taking care of someone with COPD can be a very demanding job, requiring long hours and a great deal of flexibility. A COPD caregiver never knows when they'll need to rush their patient to the hospital or provide extra care during a symptom flare-up.
In many cases, being a caregiver requires you to take on a wide variety of responsibilities that go far beyond basic care. People with advanced COPD, in particular, sometimes need intensive, full-time assistance with all the major aspects of daily life.
Here are some of the common responsibilities that come along with being a COPD caregiver:
- Providing Basic Medical Care:
- Administering COPD medications
- Sanitizing and preparing medical equipment (e.g. oxygen delivery equipment)
- Assisting with COPD treatments like breathing exercises, chest percussion, etc.
- Assisting with exercise, walking, and other physical activities
- Responding to emergencies
- Coordinating and keeping track of all aspects of COPD treatment
- Providing overnight care
- Facilitating Professional Medical Care
- Transportation to and from appointments
- Attending doctor's visits
- Advocating for their patient
- Managing medical bills and hospital visits
- Working on health insurance claims and negotiating with agents
- General Home Care
- Preparing meals
- Bathing and dressing
- General housekeeping responsibilities
- Providing emotional support
To learn more about what it takes to be a caretaker for someone with COPD, you can find more tips and information in this guide: How to be a Helpful Caregiver for Someone with COPD.
Being a Caregiver Can Take a Huge Toll
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Being a full-time caregiver, in particular, comes with an unimaginably large weight of responsibility that can be difficult to bear. It requires a great deal of self-sacrifice and the willingness to spend day after day putting the needs of someone else first.
The physical toll of being a COPD caregiver can be huge; the responsibilities are time-consuming, ever-persistent, and sometimes physically demanding. Because of this, many caregivers fall behind on important health-related activities and suffer from poor sleep, poor diet, and lack of exercise.
Being a caregiver for a loved one with COPD can also be a very heavy mental and emotional burden. It often requires you to give empathy and compassion while putting your own worries and feelings aside, which takes a substantial amount of mental effort to keep up over time.
What's more, it can be heartbreaking to see someone you love fighting a chronic disease that causes so much suffering, physical limitation, and pain. It can be almost unbearable to watch a loved one's physical decline from a distance, but it's even harder when you're by their side every day as they struggle more and more to breathe.
Because of all these things and more, it's no wonder that COPD caregivers are vulnerable to burnout, exhaustion, depression, and a variety of other physical and psychological symptoms. In fact, the toll is so significant that it's caught the attention of researchers who have conducted extensive studies on the effects of being a caregiver for someone with COPD.
For example, one large study of 461,884 informal COPD caregivers found that suffered a wide range of problems that were directly related to their caregiver responsibilities:
- 35% had a health-related problem
- 83% had problems with their social lives and leisure time
- 38% of working-age caregivers experienced problem with their jobs or careers
Other studies have identified some more specific physical and mental impacts that caring for someone with COPD can have:
- Physical Health and Lifestyle Impacts:
- Loss of freedom
- Social isolation
- Sleep disturbance
- Relationship difficulties
- Loss of intimacy
- Mental health Impacts
- Uncertainty and confusion
- General psychological distress
These difficulties for caregivers only increase with the severity of their loved one's or patients' COPD, as patients with more advanced symptoms require more care. And because COPD is a degenerative disease, people with COPD inevitably become more dependent over time, adding even more weight to the physical and mental burdens that their caregivers must bear.
Other studies have looked at some of the general needs that caregivers have with regards to their caregiver role and the hardships it brings. These studies reinforce the idea that COPD caregivers face some specific challenges that other types of caregivers do not, due to the prolonged, degenerative and unpredictable nature of COPD.
For example, COPD exacerbations are inevitable for people living with the disease, and the threat of symptom flare-ups—which can be life-threatening in serious cases—constantly looms overhead. This can cause a great deal of worry and stress for caregivers, who must always be prepared for sudden changes in their patient's or loved one's condition.
Of course, being a caregiver is about much more than just sickness and hardship and suffering—it can also be meaningful, rewarding, and a powerful act of love. Caregiving can also be an opportunity for personal development and bonding, and can even bring families closer together.
Even so, getting through the difficult parts of caring for someone with COPD isn't an easy or simple task. That's why you need a variety of personal coping strategies and sources of outside support that you can lean on when things get tough.
Coping Strategies for Caregivers
Taking care of someone with a chronic disease can be both physically exhausting and mentally draining. This is especially true if you are a full-time or primary caregiver for a loved one with COPD.
If you're not careful, you can easily get burned out or overwhelmed, which isn't good for you or the person for whom you are responsible for caring. That's why it's so important to keep sight of your own well-being and find strategies to help you balance your own needs with your care-giving responsibilities.
In the following sections, we offer some practical strategies that can help you keep strong through hardships and avoid falling into the common slump of burnout and fatigue. That way, you can keep yourself healthy and sane while continuing to be the best caregiver you can be.
Know the Signs of Burnout
The best way to avoid getting burned out and fatigued is to recognize the early warning signs. For example, you might be on the road to burnout if you notice you're feeling exhausted, overwhelmed, or struggling more than usual to cope with stress.
Here are some common signs of burnout you should watch out for:
- Feelings of dread or disillusionment regarding your work and responsibilities
- Chronic stress or anxiety
- Poor performance and/or productivity (in work and other responsibilities)
- Poor sleep and/or fatigue
- Intestinal issues or poor appetite
- Excessive cynicism and/or irritability (both on the job or in other aspects of life)
- Changes in appetite
- Body aches and pains
- Increased irritability, impatience, or being quick to anger
- Lack of interest in activities and recreation
- Use of drugs, alcohol, or other unhealthy habits as a coping mechanism
Burnout isn't good for you or the person you are caring for, so you should take these symptoms seriously when they occur. Don't brush them off until they gets so bad you can no longer ignore them; instead, take action to improve your situation before it gets out of hand.
As soon as you begin to feel your emotional fortitude or energy stores waning, it's time to take a step back and figure out what to do. The first step is to identify what the problem is, or what in your life you are missing: Are you doing too much? Are you losing sleep? Are you having trouble managing anxiety or stress?
Once you've defined the problem, solving it is a matter of finding some viable strategies to give yourself what you need. For example, you can improve poor health habits by figuring out how to make a bit more time in your day for self-care. If your trouble is coping with anxiety or stress, you could address it by seeking mental health counseling or participating in a caregiver support group.
You can find many other helpful ideas and solutions in this guide and in the many caregiver resources linked throughout. It may take some time to find a good set of strategies that fits into your daily routine, but the sooner you start searching and trying, the sooner you can find a balance and begin to see results.
Don't Underestimate Self Care
It's easy to get so sucked into your role as a caregiver that you start to neglect other aspects of your life. Because of this, it's important to pay attention to your own needs as well as those of your loved one or patient, and to develop a personal set of strategies for self-care.
Self-care is a broad term that can apply to just about any activity you do in the pursuit of your own health and well-being. In fact, pretty much all of the tips and strategies in this guide can be considered a form of self care.
A good self-care strategy is varied, balanced, and helps you work toward a more fulfilling and well-rounded life. You should aim to find activities that address both your physical and mental needs, in a way that helps you both maintain and improve your quality of life.
To illustrate what self-care looks like, we've provided several examples of common self-care categories below. However, these examples are far from exhaustive; self care can (and should) reach into many other categories and aspects of life that are not mentioned in this list.
Some Basic Examples of Self-Care:
- Physical Self-Care: These are activities that help you improve your physical well-being, such as exercise, healthy sleeping habits, healthy eating habits, etc. For example, setting aside time to exercise and cook healthy meals ,or staying home from work when you are sick, are both forms of physical self care.
- Emotional Self-Care: These include activities that help you manage and cope with emotions, such as relaxation exercises, emotional expression, and practicing psychological coping mechanisms. For example, taking time to journal and express your thoughts every day is a form of emotional self-care.
- Social Self-Care: This includes activities that help you connect with other people, such as keeping in touch with friends, attending social events, and nurturing both new and existing relationships. For example, scheduling some time to call and chat with a friend once a week is an example of social self-care.
- Spiritual Self-Care: This type of self care helps you find meaning and connect with your personal values and beliefs. It can include things like practicing religion, exploring your spirituality, and finding meaning in the natural world. For example, practicing mindfulness meditation or participating in a religious ceremony are examples of spiritual self care.
Don't be afraid to get creative; there is no right or wrong way to do self care as long as it helps you take care of your needs. Once you find some strategies that seem helpful and appealing to you, write them down somewhere you can find them later. That way, you'll always have your own personal self-care toolkit to reference whenever you need.
However, coming up with the strategies is the easy part; often, it's making time to actually do your self-care activities that proves most difficult. Luckily, a little creativity and flexibility can go a long way toward helping you find ways to work some self-care into your daily routine.
You can find more self-care tips and suggestions throughout this guide, and in other posts in our Respiratory Resource Center blog. You can also find a variety of ideas and examples of self-care activities from other online resources, including the ones below:
- Self-Care for the COPD Caregiver
- Taking Care of YOU: Self-Care for Family Caregivers
- Developing a Self Care Plan from ReachOut Schools
Take Advantage of Small Chunks of Time
When you're a full-time caregiver, making time for yourself can be a daunting challenge. The idea of finding time for self care and relaxation might even create more stress if you feel it's too difficult or impossible to do.
However, it's almost always possible to dig up at least a little extra time that you can use to focus on yourself. Even if all you have is a few minutes here and there, teasing them out, seizing them, and using that time wisely can make a difference in your day.
It might help if you break down self-care activities into smaller chunks that you can slip in to smaller time slots throughout the day You could, for example, take a few minutes of quiet between caregiving tasks to read, meditate, journal, or just sit down and unwind.
For hobbies and self-care activities that take longer, you may need dedicated some larger stretches of time. Finding those hours might require more careful planning and prioritization, but remember: you are worth every bit of time and effort you put into taking care of yourself.
Make Yourself a Priority
Unless you specifically make an effort to practice self care and prioritize your own well-being, chances are that you'll fall behind. When caring for someone else absorbs so much of your time, it's just too easy put off your own needs and neglect self care.
In order to avoid this, it's important to make yourself and your self care a priority. That means truly valuing yourself and your well-being—not just mentally or theoretically, but showing it with your actions and how you plan your days.
It means showing yourself compassion, and recognizing that you deserve take care of yourself. It means believing you deserve the time to focus on your physical and mental needs, and believing you deserve the time to do things that make you feel happy and well.
Looking after yourself shouldn't be optional, and you should treat your own self-care like any other non-negotiable activity in your life. This is the true first step to successfully putting any of the strategies in this guide into practice; without it, you might never get around to using them in the first place.
Take a Break
All caregivers, even (and especially!) full-time caregivers, both need and deserve occasional breaks. In fact, taking some time off to recharge is not only good for you, but, in the long run, it can also help you be a better caregiver overall.
Unfortunately, many caregivers feel such a weight of responsibility that they feel selfish or even neglectful for spending any time away. However, if you don't get a break from that responsibility every so often, at least, you are bound to end up burned out and fatigued.
Of course, taking time off isn't always simple; in many cases, you will need to arrange for someone else to care for your patient's while you're gone. However, with a little planning, creativity, and delegation (which we'll discuss more in a later section), you're bound to be able to find another person to work in your stead.
Even if you can't get a full day off, it can be extremely refreshing just to get an afternoon or evening away. When you do, try to make the best of the time by focusing on you, letting go of any feelings of worry, stress, or responsibility for awhile.
Remember that taking some time for yourself is a necessity for your own health, and it isn't the same as abandoning your loved one or your duties. You deserve the opportunity to take care of yourself, and your loved one deserves a caregiver who isn't too burned out and exhausted to give them the care they need.
Practice Relaxation Techniques
Being a COPD caregiver often comes with a lot of stress and emotional strain. If you don't have strategies you can use to wind down, relax, and relieve that stress, it can take a huge toll on your health and well-being over time.
That's where relaxation techniques come in; they have long been the go-to recommendation from doctors and mental health professionals for coping with anxiety, stress, and other negative emotions. What's more, many relaxation techniques are quick and simple to learn, perfect for working into a busy caregiver routine.
Relaxations activities are designed to help you relax, clear your mind, and separate yourself from worries and stress. Many focus on utilizing the mind-body connection, a scientifically-supported concept regarding the ability of your mind to influence your body, and your body to influence your mind.
For example, when you feel stressed, it can cause physical reactions like muscle tension or altered immune system function. These physical effects, in turn, send signals to your brain that reinforce stress and other negative feelings. This creates a negative cycle of both physical and mental stress, but this cycle can be mitigated and interrupted by relaxation techniques and mind-body exercises.
Taking the time to focus on mental and physical relaxation can interrupt the downward spiral of stress and help you find relief. It can also give you a much-needed break from the worry, sadness, and grief that often comes with caring for someone with serious chronic disease.
Here are some examples of quick relaxation exercises you can do in 10 minutes or less:
- Practice mindfulness meditation (you can follow along with several free guided meditation sessions here)
- Do some deep breathing exercises
- Practice progressive muscle relaxation
- Do a body scan
- Take a few minutes to stretch your body and loosen up your muscles
Here are some examples of relaxation exercises that you can do in 30 minutes or less:
- Mind-body exercises like yoga or Tai Chi
- Do a longer mindfulness meditation session
- Take a 15-30 minute walk
There are many other activities that can help you relax and let go of stress, such as reading, taking a hot bath, or spending time in nature. Take some time to explore what does and doesn't work for you, and don't forget to use them in times of emotional distress!
Seek Help for Mental Health Problems
The stress and strain of being a COPD caregiver can lead to some serious emotional and psychological symptoms that you shouldn't ignore. In fact, it's quite common for caregivers to struggle with anxiety, depression, and other mental illnesses that can take a serious toll.
These mental struggles are natural and understandable, and it's okay if you're not able to able to manage them on your own. That's what counselors and psychiatrists are there for: to provide the help and support you need to regulate your emotions and develop healthy strategies for coping with whatever psychological difficulties that life and caregiving throws your way.
Give Yourself Some Credit
As a caregiver, it's easy to get so focused on the things you need to do or should be doing that you never think about how much you've already achieved. However, you shouldn't forget that you are providing a vital, admirable service that makes a huge difference in your patient or loved one's life.
People with COPD often regard their caregivers as heroes and saviors, people they (sometimes quite literally) could not live without. So give yourself some credit, and pause for a moment every so often to appreciate all the sacrifices and accomplishments you've made.
Whenever you start to feel frustrated, discouraged, or helpless—as many COPD caregivers do at times— take the time to reflect on your efforts and achievements, and remind yourself of all the good you've done so far. Doing this can help you cope better with stress and guilt, and help you keep a positive spirit when the daily strain of work and worry begins to beat you down.
How to Get Support
The burden of being a COPD caregivers is not something that anyone should have to cope with completely on their own. That's why it's important to find sources of support you can reach out to when needed, whether it's a dedicated caregiver support group, counseling, or simply a fun group activity to help you get away from the stress.
Join a COPD Caregiver Support Group
Many caregivers find that their family and friends struggle to understand what they're going through, which makes it difficult for them to provide the kind of support a caregiver needs. As a result, many caregivers end up feeling isolated and misunderstood.
That's why it's important to get support from other caregivers—people who can relate to what you are going through and understand what it's like to care for someone else with a chronic disease. You need people with whom you can share your worries, experiences, and stories, and receive personalized advice and support.
Luckily, there are a variety of different support groups specifically for COPD caregivers that offer all of these things and more. Many of these groups are remote and based online, but some places have local caregiver support groups that meet in person, too.
You might be able to find a caregiver support group in your area if you ask around your local hospitals, rehab centers, faith communities, and other organizations theat deal with healthcare, COPD and age-related diseases. You might also find more information on local groups through area-specific online forums and bulletin boards (e.g. Craigslist or Nextdoor) or via online searching tools.
Online support groups come in a variety of different formats, including:
- Phone-based support
- Online forums and chat rooms that host support sessions at specific dates and times
- Less-structured support communities that operate similarly to other social networks.
Several online support groups are run by COPD and respiratory disease advocacy organizations, such as the American Lung Association. Here are some links to some online support groups and communities for COPD caregivers and caregivers in general:
- COPD 360 Social is a large online community that is open to anyone affected by COPD, including COPD caregivers and people with the disease. You can participate in the group by following the activity feed, asking and answering questions, read the latest posts from the COPD digest, and more.
- COPD-Support offers a range of services for both COPD patients and caregivers, including an online forum (with board dedicated specifically to caregivers) and a community-driven email list.
- Caregiver Online Support Group from the Family Caregiver Alliance: an email-based support group for caregivers for people with a wide variety of chronic diseases. According to their website: “The group offers a safe place to discuss the stresses, challenges, and rewards of providing care for a loved one.”
Socialize and Join Group Activities
While caregiver support groups are important, they shouldn't be the only thing getting your through the day. You need to have other outlets in your life, such as hobbies, group activities, and recreational social outings.
The idea is to spend time with yourself and other people in a setting where there isn't any pressure to think or talk about any of your caregiver responsibilities. It provides a different kind of support, the kind that can help you feel relaxed, rejuvenated, and allow you to just be yourself.
Doing normal activities like these can help you keep in touch with the parts of yourself and your life that don't revolve around your caregiver role. Remember, who you are is much more than just your work and responsibilities; nurturing your hobbies, interests, and social relationships are all important parts of living a full and balanced life.
The last thing you should do is trap yourself in a bubble where everything in your life revolves around COPD care. Even though your free time may be limited, it's important to find time—on a regular basis—for activities that give you some much-needed mental and physical distance between you and your caregiver role.
Taking care of someone with COPD—especially severe COPD—isn't a one-person job. Even if you are the primary caregiver for a loved one with the disease, you can't be expected to do everything all on your own.
That's why you should always be looking for options to delegate tasks to others. Whether it's family, friends, or both, chances are there are people around you who are willing to offer a hand.
It can be extremely relieving to get even a few tasks off your plate, and it can go a long way toward helping you avoid burnout and fatigue. Even if you feel nervous about trusting others with important responsibilities, you can probably find some simpler duties that are easy to pass along to someone else.
For example, errands like delivering a meal, picking up prescriptions, or driving your loved one to appointments generally don't require any special instruction or skills. These are great responsibilities to delegate because they are clear, discrete tasks with a predictable time-frame you can plan for.
You can also look for other ways to outsource certain tasks, like laundry and shopping, to outside services. For example, many grocery stores offer online ordering and delivery for only a small fee, and many laundromats offer affordable wash and fold services (and sometimes free home pick-up and delivery).
There are also a variety of technology tools designed to make it easier for family caregivers to coordinate, schedule duties, and update one another on their loved one's care. The website Lotsa Helping Hands, for example, allows you to create your own online hub to keep family, friends, and loved ones on the same face by posting updates, reminders, and requests for specific types of support (e.g. transportation to a doctor's appointment).
Know When it's Time to Hire Extra Help
There sometimes comes a point in COPD care where the work becomes too much for family caregivers to manage on their own. If this happens, consider hiring some additional outside help (often referred to as respite care) to shoulder some of the burden.
There are several different options to choose from, including in-home care from a home health aide or care outside the home at a healthcare facility or adult day care center. For overnight or longer term care, you can book your loved one into an assisted living facility that offers temporary residential care.
Of course, these services come at a price, and the fees for respite care may not be covered by medicare or private insurance. Some facilities and health aids charge by the hour for daytime care, while overnight facilities generally charge by the day.
If you are worried about the cost, doing some research and price-shopping might allow you to find a service that fits into your budget. It might also be worth asking other family members to pitch in, or to speak with your loved one's insurance representative directly to see if you have any options for getting some of the costs covered by insurance.
Even though it can be expensive, it's important to consider the difference that respite care could make in your life, and how it might fit in to your long-term plan for your loved one's care. In some cases, respite care is the most cost-effective solution for someone who needs more care than their family can give; it can allow you to continue treating your loved one at home and avoid having to pay for more extensive and expensive care (e.g. in a permanent residential facility).
Other Caregiver Resources
In addition to support groups and online communities, there are a variety of other caregiver resources you can access online, including caregiver wellness guides, educational materials, newsletters and more. These resources are full of all kinds of helpful tips, inspiration, and practical information you can use as a caregiver for someone with COPD.
Here are some great online resources to get started with:
- Caregiver Well Being: this is a collection of articles from Johns Hopkins Medicine with lots of practical advice for caregivers on how to cope and take care of yourself while caring for someone else.
- The Caregiver Action Network: this website contains a variety of helpful caregiver resources, including many for COPD caregivers specifically, including videos, personal stories, and helpful articles related to caregiver wellness and tips for providing care.
- The Family Caregiver Council: this website is a portal that can connect you to a wide range of caregiver organizations and resources, including practical coping advice for caregivers and tips for managing tough caregiver responsibilities.
There are also a variety of blogs, articles, and other written materials created both by and for COPD caregivers. These writers share a wide range of personal stories, struggles, and sincere insights based on real-world, personal experiences with caregiving.
It can be incredibly encouraging just to read about other caregivers' journeys and to know you're not alone. Connecting to their stories can also help you put your own experiences into perspective, and perhaps even help you feel a little less anxious and overwhelmed.
Here are a couple links to books and articles that delve into caregivers' personal experiences:
- The Caregiver Space is an online support space created by and for caregivers of COPD to share their experiences and insight. You can find many inspiring articles written by caregivers and even contribute your own posts if you so desire.
- Check out this list of books about caregiving curated by Seniors Matter.
- Read about the lives and experiences of dozens of fellow caregivers on the Family Caregiver Alliance website.
There is nothing ideal about having—or caring for—a loved one with COPD, but it doesn't have to lead to burnout or despair. Being a caregiver shouldn't mean giving up your own happiness or putting your well-being on hold.
Even when it's difficult to find the energy and time, it's vital to keep your own needs and desires in perspective. If you don't take care of yourself, you make yourself much more vulnerable to stress, exhaustion, and all the other negative impacts that being a caretaker can bring.
Luckily, if you have the right kinds of strategies to turn to, like the ones we've reviewed in this guide, you'll find that that the burden of being a COPD caregiver is much easier to bear. These outlets are vital for keeping yourself both physically and mentally well, and for avoiding the dreaded pits of burnout and and fatigue.
Having a variety of support and coping methods can not only improve your quality of life in general, but can also improve your ability to be an effective caregiver. When you look after your own well-being instead of letting your responsibilities drain you dry, you'll be happier, healthier, and much more capable of handling the hardships of caring for someone with COPD.