How it feels to take care of someone chronically ill

How to take care of yourself while taking care of someone else with a chronic/terminal illness

Unfortunately, it’s not rare for someone to encounter a family member’s experience with a chronic illness. These family members, such as those who are suffering from Alzheimer’s Disease or Parkinson’s Disease, often lose the ability to take care of themselves completely and are forced to become entirely reliant on someone else. Taking care of someone who is chronically ill is a full-time job, not only in the physical aspect – needing to support everyday functions – but also can be extremely emotionally trying. The life of a caregiver for someone living with chronic illness requires patience, perseverance, compassion, and endurance, and it can be easy to forget about your own needs. If this experience resonates with you, you’ve got to make sure you are dedicating the time and energy to take care of yourself first, so that you can continue on with strength and hope.  

How it feels to take care of someone chronically ill

When you’re caring for someone chronically ill, it can be easy to get caught up in “What can I do?” that you forget to regard your own needs. It’s okay to feel tired, depleted, sad, hopeless, or feel like you’re on an emotional rollercoaster. The prolonged stress and the physical and mental demands of caregiving would take a toll on anyone. It is especially draining when you have to juggle work and personal responsibilities while performing your caregiving duties. It’s common for caregivers of terminally ill family members to often disregard their own health. So it comes as no surprise that they report experiencing sleep deprivation, poor eating habits, little to no physical exercise, and exhaustion.

Then what’s the point?  

The whole experience does come with certain challenges but it can be also very rewarding. Going to such lengths to take care of someone else demonstrates deep love and commitment, and it pays off when we see those we love doing better, even if it is for a small fraction of the time.

Why is it important to take care of yourself first?

When someone close to us is chronically ill, it can be difficult to strike the balance between caring for them and caring for ourselves. It’s always important to take care of yourself first, and it’s especially crucial when you have to care for someone who is chronically ill. The key is knowing your limits and learning your needs. Taking care of yourself means making sure that your needs are met first, and only then can you effectively meet the needs of others.

But how?

1. Identify beliefs that are holding you back.

We often hold on to certain beliefs about ourselves and others that act as barriers to our self-care. Beliefs such as seeing ourselves as “selfish” when we put our needs first or not feeling worthy of asking for help, can stand in the way of our journey to taking care of ourselves. As a result of these barriers, we tend to ignore our needs in pursuit of helping those around us. It then becomes draining and overwhelming when those around us need an inordinate amount of help and support, which leads us to throw our needs completely aside. It’s important to be aware of these beliefs and address them in order to allow ourselves some time to take a breather.

It’s also important to be aware of what we can and cannot provide. Taking care of a chronically ill loved one can stir up feelings of guilt because we strive to be the “perfect” caregiver: which is entirely unrealistic. Rest assured that you are doing the best that you can with the tools that you have.

2. Reduce and manage unnecessary stress.

It’s important to recognize the first signs of stress. Some of these may include irritability, sleep disturbances, or problems in memory. Not only will this help you be aware of the sources that cause the stress but it may also prevent you from reaching an overwhelming degree of stress. There are some circumstances where we don’t have a say in how things go, and that’s okay to accept, we just need to also be aware of the things we do have control over that can potentially make the caretaking process easier. 

If this resonates with you and your experience, there are some actions you can take to reduce your stress levels during this time, such as taking regular walks or exercising, making the time for the activities you enjoy, or reaching out to a friend for a cup of coffee. Other activities can be found here.

3. Ask for help, and accept it when it comes.

It’s easy and it may come naturally to some of us to reply with “thank you, I’m good” when asked if we need help. We may feel that it’s a burden for others to come to our rescue because every person has their own share of problems, right? We will consistently be surprised by how many of the people around us, who love and care for us, want to be there, as much as we are there for them. During this difficult time, there is no shame to reach out to someone for help, not only because we simply cannot handle everything on our own, but also because by nature we need each other and our community to lead a full life. Asking for help can start with little things, like helping you arrange dinner, so that you don’t have to worry about it when taking care of your loved one, or asking someone to take over for an hour or two so that you’re be able to recharge, and fill up your cup again. People may be able to support you by taking some things off your plate such as going grocery shopping, picking up kids from school or work, making to do lists, or planning the social gathering.  

4. Take breaks regularly, and meaningfully.

Taking regular breaks, without feeling guilty, will help to avoid burnout. Some carer support services can help you to take a step back from your role. You could find a volunteer to stay with your loved one while you take a short break. If you need a longer break, you could book some time with respite services for the person you are caring for, so you can have some time away to rest. While you do take a moment to rest, be sure to do it meaningfully and with the intention of doing something that replenishes your energy.  

5. Build healthy habits and routines.

Maintaining healthy habits and routines can give you the energy and vitality you need for your role as a carer. Habits such as a healthy sleep schedule, regularly exercising, and ensuring proper nutrition can make all the difference in the world. There are a number of wellness dimensions you can seek to feel better, and you can read more about them here.

6. Talk about it.

It’s easy to hide under an “I’m fine”, but think about it – is that really helpful? Friends and family can offer significant support and will be wanting to hear you out. If you are finding the situation is starting to feel overwhelming, you may find it helpful to speak with a healthcare professional such as a counsellor or therapist. Often someone without an emotional connection to you, or the person you care for, will help you see things clearly. Joining a support group may also help you feel less lonely or isolated.

Remember, it is a full-time job.

Taking care of a chronically-ill loved one can feel like a full-time job because it technically is. You’re doing the dishes, cleaning the house, preparing food, helping them with personal hygiene… Before you know it, your day is over and you haven’t done much for yourself.

It’s easy to get wrapped up in wanting to help people when they’re dealing with illnesses and chronic conditions. After all, seeing someone you love struggle with a disease can really bring out the desire and the feeling of responsibility to take action, and do something. However, it’s important to remember that you have limits—physically, mentally, and emotionally.

Even if your loved one is not able to express gratitude or appreciation for your efforts, because they may have a condition that prevents them from understanding what you do for them or why it’s important. Remember that it’s okay to feel tired, exhausted, sad, heavy, or drained—that’s what happens when you pour from an empty cup.  

A Word from O7 Therapy 

If you have a loved one who is struggling with a chronic illness, try to remember that you are not alone. Whether you have to physically care for them or not, this is probably one of the hardest things you’ve ever had to go through, and it can be very easy to feel worn out. There’s no right way to feel because this is an incredibly difficult time in your life, just remember that getting help and taking care of yourself is the most important thing you can do for both yourself and your loved one. 

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