The world gets so hung up over the person experiencing chronic disease, that we are often guilty of neglecting the needs of the primary caregiver to this person. Caregiving is an equally demanding, mentally exhausting, and overwhelming task.
What’s worse is that caregivers are rarely given their fair due, while they toil away in the background dealing with their own share of demons. At Caring Voice, we have always tried to attribute equal importance to the caregiver’s needs.
That’s precisely why we created a guide for first-timer caregivers or anyone who’s undergoing a stressful period due to the demands of caregiving to their near and dear ones. This guide will help them understand how to cope, how to control stress and how to regain a sense of balance and hope in their lives.
Why do caregivers need care?
Caring for a loved one is rewarding for sure. But it can be riddled with stressors, particularly if you are dealing with a long-term situation. Often, you may be forced to put your own priorities on the backburner while giving care. Also, the emotional toll that it can take on someone slowly snowballs into a massive one.
We have witnessed caregivers who have had to dedicate decades of their lives to caregiving. In some situations, you may be forced to witness the family member or the loved one’s health slowly deteriorate, while you are a mute spectator, despite all the efforts that you took.
This is why caregivers need care too. If these situations are not addressed, or if the early signs are left unchecked, it can slowly begin to form deep rooted mental agony. It can also cause burnout and lead to a state of mental exhaustion. When it gets to a situation like that, both you and the person receiving care are suffering equally.
Self-care is a necessity
A lot of caregivers and the people close to them view self-care as a luxury that they cannot afford. However, it’s the reverse. It’s not a luxury at all. Instead, it is a necessity. You need to work towards securing your own physical and mental well-being, exactly like you ensure that the person you are caring for takes their meds on time, or visits doctors on time.
The first thing to do is watch out for signs of burnout.
Some early signs and symptoms of burnout
Stress and burnout can cause some strange symptoms. Many of these may overlap with other common conditions, forcing you to trivialize them. But it is these early signs that when spotted, can help prevent these conditions from escalating into something more severe.
Here are some of the common and uncommon signs of stress amongst caregivers.
- Anxiety & Irritability
- Lethargy all day.
- Poor sleep.
- Anger problems
- Constant health problems
- Poor focus and concentration.
- Feeling resentful towards life and people
- Resorting to alcohol, smoking, or even eating to cope
- Putting important responsibilities on the backburner
- Refusing to socialize.
- Refusing to take out leisure time
- Poor energy levels
- Easily catching a cold, flu, and infections
- Constant exhaustion even after sleeping for hours.
- You feel like you don’t care about yourself anymore
- You spend your entire day caregiving. But you are dissatisfied with everything in general
- You are getting irritable even with the person that you are caring for
Coping with it
Let’s get some facts straight. If you are a caregiver, life is not going to be stress-free. That’s out of the question. But it need not be a stress magnet either. There are numerous ways in which you can cope with your situation. Some are easier than the rest. But if you follow up with it, it will definitely help take off the load from your shoulders.
Empower yourself
You feel angry, depressed, and burnt out when you feel powerless about the situation. When caring for a chronic illness or geriatric care, this is a common situation. You expect things to change, but they don’t. You feel trapped as if you took up more than you wanted to. But you cannot abandon the responsibility anymore. Take a moment to reflect on it and tell yourself that you are not powerless. The negative thought is a chain that activates in your mind and the more you dwell on it, the more you get trapped into it.
You may not always get the physical help or the financial assistance you seek. But there are ways to get more happiness and bring hope into your life.
Acceptance is the key
When you witness your loved one slowly slip away and have to do it repeatedly, day after day, you tend to get into a pattern of negative thinking. You keep investing a lot of energy in situations that are beyond your control and you are unable to change. You keep thinking, ‘Why this happened to me. Once again, this is a trap that will spiral you down into a dark place. Don’t feel sorry for yourself. Don’t blame the world for the situation.
Instead, embrace the situation. It’s a choice that you made. A conscious decision. You might experience resentment from time to time. But whenever this thought originates, take a pause and think about why you chose to provide care to this person in the first place. Maybe it’s a partner. Maybe a parent. Maybe it’s just the way you are. The values that you want to imbibe in your kids. Use these thoughts as motivation.
Think of the positives
Believe it or not, there’s a silver lining in this. Caregiving often changes people for the better. Their grit, resolve, persistence, patience, everything improves. It makes them stronger people than they were.
Start activities that interest you
Caregiving should not be the sole focus of your life. At times, it may get very overwhelming. You may feel that there’s no room for anything else. But you should seek rewards from activities that you love. Look for other activities that refresh your mood and give you a sense of purpose. It can be time spent with friends, family, or just some time in a church.
Even music can be very rewarding in case you are interested.
Let go of things you cannot change
Rather than focusing and dwelling on the things that are beyond your control, focus on the things that are in your control instead. You cannot ask for more than 365 days in a year, can you? Similarly, focus on how you choose to react to the situation, rather than getting hung up over it.
Celebrate life
Do you feel that none of your efforts matters because your loved one’s health keeps deteriorating anyway? Maybe you are underestimating the power of just making them feel loved, special, and tending to their everyday needs. Don’t get stuck with this negative chain of thoughts. Instead, keep reminding yourself that every effort, no matter how small, is important.
Get the appreciation you need
Probably, the biggest problem that people experience during stressful situations is a lack of appreciation. No matter how small, appreciation can go a long way in improving your emotional state, and subsequently your physical health. Caregivers when appreciated, learn that it actually makes them happier, despite the grueling demands. But in some situations, the person that you are caring for may no longer be in a physical condition to show appreciation for the effort you take and the time you invest.
In such situations, an easy way to deal with it is to imagine how this person would respond to your care and love if they were in fact healthy. If they weren’t debilitated, or afflicted by this condition, wouldn’t they feel amazing about the love and care they receive from you? Time and again, caregivers just need to remind themselves that this person, although unable to express it now, will definitely express gratitude if they could.
With this thought in mind, give yourself a pat on the back. Most of the time, we are critical about ourselves and beat ourselves up over things that are not in our control. Don’t do this. Appreciate your own efforts. Applaud yourself. If you do not get external validation for something, find ways to do this yourself. Keep reminding yourself of the effort you are taking. If you can’t remember this, write it down. Did you know that Cognitive Behavioral Therapy or CBT has proven benefits for helping reduce stress and anxiety? You might want to check out the 8 best apps for mental health that we have listed over here.
Last but not the least, speak to a friend, a family member, or a colleague. You don’t necessarily have to get positive appreciation from the person that you are caring for. It can come from external sources too. Sometimes, even a person who can listen to your problems with a patient ear can help soothe frayed nerves.
Seek Help
Caregivers often get into the trap of thinking that they have to fulfill all caregiving responsibilities by themselves. That’s not true. This is one of the reasons for burnout. You, of all people, should know that it is emotionally and physically burdening. So, don’t feel awkward taking breaks.
Respite Care – Do you have friends or family, who can chime in while you go out to run errands? Someone who can watch the patient while you take some time off for yourself? Maybe they can get you a hot meal? If you cannot find anyone in your circle, look for paid help. There are volunteers who can do this, as well as paid services for in-home nurses who can look after the patient in your absence. If you have multiple responsibilities, this can be a long-term engagement. Else, you can do this from time to time, whenever you need a break.
Express Yourself – It’s not necessary that the people around you, even your close friends understand how you feel. The only way to do this is to speak up and express yourself. Communicate frankly about what’s going on in your mind and of the person that you are caring for. If you have ideas on how you can better the situation, or if you have concerns that can be remedied by the person you are speaking to, start communicating. Initiating dialogue is the first step. Most of the time, we do not initiate conversations for fear of how they might be received.
Divide the tasks – Unless you are living alone with the person that you are caring for, divide the tasks amongst family members. Even if they are not in the immediate vicinity, they can still chime in occasionally. The tasks should ideally be split up evenly. If you are responsible for medical assistance, someone else can chime in with bills. Another person can run errands, or get groceries, and so on.
Stop Refusing Help – Another pattern that we have noticed with caregivers is that they tend to refuse help even when someone offers it with good intentions. Sometimes they are shy about it. Other times, they don’t want to burden others. Accept help with grace. You can also create a list of the priority tasks for the week that others can chime in with. Maybe it’s as simple as reading a book to the person you are caring for.
Don’t be controlling – When someone helps you, it’s fine to delegate. But trying to control every aspect of what they do is not acceptable. It’s just annoying and eventually, people are going to stop helping. It’s okay if someone wants to help and it’s not according to the high standards that you set for yourself.
The importance of taking breaks
Leisure time is extremely important for caregivers. Especially because they constantly battle negative emotions and have to live in a stressful environment watching a loved one undergo a painful phase of their lives. We understand that it may seem like an impossible task to take a break. A luxury that you can no longer afford. But tell yourself this, that you deserve it. So does the person that you are caring for, because they depend on you being at your physical and mental best. If you are just going to burn out, it’s eventually going to affect their care too.
Being busy is one thing and being productive is an entirely different thing. You need to take time off. It will help you recharge your batteries. It will improve focus, it will improve your productivity and it will allow you to get more things done in lesser time in the long run. Studies reveal that even small breaks help improve energy levels and focus. So, don’t worry that you are going to lose time. You will more than makeup for it.
Socializing is extremely important for more reasons than one. It helps you stay positive. It is a welcome change from the stressful environment. Moreover, the caregiving might be temporary. But it is relationships, be it friends or relatives that are sustainable. If you don’t find time to go out and socialize, invite your friends over for a small cup of coffee.
Share your thoughts. Even expressing what you feel and what you are undergoing at present can provide you with catharsis. Contrary to what you believe, you won’t burden people at all by sharing your thoughts. Instead, most people will be happy that you trust them to share your deepest thoughts with them. This will actually strengthen the relationship, rather than weaken it.
Make a list of activities that you enjoy. Do you have hobbies that make you happy? Music, gardening, walking with your pet, spending some time in your workshop, watching the game, anything that keeps you engaged and your mood up, should make this list. Now prioritize them in terms of the happiness they bring you and start finding time for them.
Pamper yourself every now and then. Even a small break from the cycle can be very rewarding in reducing stress and in improving your overall mood. Just go for a massage. Get into the bathtub with some bath salts and soak in for an hour. Ask your partner to give you a rub. Head to the spa. Eat out. Do whatever it takes to make yourself feel special.
Laugh. It’s not as hard as it seems to be. Besides, it comes with a bevy of proven benefits. It’s a de-stressor and it’s free. Watch a funny video, a movie, read some jokes, spend time with people who can make you laugh. Look around you. There’s humor everywhere in life. You just need to shift your perspective a little.
Most importantly, get out of the house. A change of environment, even for a brief period can do wonders for your mood. Being trapped indoors is not only unhealthy, it also opens you up to negative thought patterns. Go for a walk. Spend time outdoors.
Don’t neglect your own health
Your body is like a machine. When it’s brand new and shiny, it can endure everything that you throw at it. But after a while, it needs to be maintained. You need to give it the right fuel. You need to give it periodic rest. You need to ensure that you spend time on its upkeep. Or else, it starts to throw niggles at you. The niggles might be tiny at first. But it can quickly escalate into major ones.
Don’t neglect your own medical appointments. We have seen caregivers who are so busy with caring for the patient that they skip their own medical appointments. Never forget that your health is connected to the care that you are providing to the person you love.
Get active. Start exercising. Stress and exercise are at the opposite ends of the spectrum. When you are stressed, you don’t feel like exercising. When you exercise, you don’t feel stressed. Choose the latter. Don’t think that you need to hit the gym and spend hours grueling either. Start small. Take a small walk in the neighborhood. Even 10 minutes is fine. Then slowly add to it and keep increasing it until you hit 30 minutes. If you cannot spend 30 minutes on the trot, then split it up into three 10-minute sessions. Exercising regularly will also help if you feel fatigued a lot.
Practice mindfulness and meditation. Mindfulness helps you detach yourself from the anxiety or stress you are experiencing and take a look at the world from a distance. It helps you realign your thoughts, identify triggers and change the way you react to them. You can also try Yoga, deep breathing, or other relaxation techniques. What’s amazing about mindfulness is that you can do it even in the middle of a stressful, busy day. All it takes is about 5-10 minutes.
Nourish yourself. Don’t neglect your meals. Ensure that you eat enough veggies, lean protein, dietary fiber, healthy fats, and complex carbs. Reduce your sugar intake and also caffeine, if you are using too much of it. Both of these are addictive and can provide a quick respite. But it is followed by an equally fast crash. Eating healthy will also ensure that your immune system functions normally and you do not experience frequent bouts of illness.
Ensure that you get at least 6-8 hours of sleep. Some people are hard-wired to function until the wee hours of the morning. If that sums you up, then finish your mandatory sleep quota during the day. Either way, don’t skimp on your sleep time. When you sleep less than what’s required and it builds up over a period of days and weeks, it starts to affect all aspects of your life. Your mood, memory, focus, immunity, everything will be compromised.
In case you find it too cumbersome to organize everything, check out the list of free apps for healthcare that we have listed over here.
Look for support groups
Did you know that there are others like you who are also experiencing the same thoughts as you are? You can meet, share and interact with such people in support groups. You can share your problems, learn innovative ways of managing things, get ideas and even help others. Remember what we said about getting acknowledgment and validation? Support groups are full of people who empathize with you.