Being a caregiver can be one of the hardest things to do. Here Glenda Britton, Registered Holistic Nutritionist, shares a comprehensive guide with caregiver tips on what to expect when you are caring for someone with a chronic illness, including tips for how to be a better caregiver, some potential pitfalls, and finally tips on how to take care of yourself.
Like many others, I have been on both sides of the caregiver conundrum. I have cared for chronically and severely ill individuals, and I have also been sick and in need of someone to take care of me. I’m certainly not an expert on caregivers, but given that I’ve lived both roles, I’m certain my experiences can shed some light on how to approach the role of the caregiver.
First of all, it’s important to acknowledge that being a caregiver can be challenging and life-altering. There will be complicated emotions, setbacks and trying moments. Here’s my tips on what to expect and do’s and don’ts when caring for someone with a chronic illness.
What to expect when caring for someone with a chronic illness
Caring for someone with a chronic illness has unique challenges. It may be difficult to understand how someone can seem okay one day and worse than ever the next. But keep in mind that these ups and downs are challenging for both the caregiver and the sick individual. It can be hard to measure how much someone is suffering when there may be no obvious physical signs that identify how severe an illness is.
- Everyone is unique, but common sentiments among people with chronic illnesses can include distress, poor memory, brain fog, insomnia, exhaustion, being overwhelmed, flat emotions, agitation or a low libido.
People with a chronic illness may be grieving because they are coping with the loss of the life the once had. At the same time, a caregiver can also experience grief because they’ve also lost their freedom. Because grief is complicated and filled with unexpected emotions like anger, guilt, self pity and sadness, life can feel tense. It’s important to recognize that these feelings are normal. Once the caregiver and the patient accept this rollercoaster of emotions, the changing feelings may become easier to deal.
- Inflammation in the body can be the root of a chronic illness. That inflammation can be caused by food sensitivities, toxic exposure, stress or any combination of those triggers. Basic lifestyle interventions involving diet, supplementation and reducing toxic exposures have repeatedly been shown to work! And the best part? There aren’t side effects to making your environment healthier. Taking steps to improve both your diet and lifestyle and that of the person you are caring for will help both of you!
- Many people want to help those with a chronic illness or their caregivers, but they don’t know what to do or how to help. Their failures can result in frustration, anger or people just pulling away, which can leave the ill person and the caregiver feeling isolated and alone.
Tips on How to Be A Better Caregiver
Try to be patient.
Patience really is a virtue, especially when it comes to being a caregiver! There will be times when it doesn’t seem like you can continue to give of yourself. Follow through with self-care and carve out time for breathing, meditating, going for a walk or eating well instead of taking out your frustrations on the person you’re taking care of.
Be in the know!
Learn as much as possible about your loved one’s condition. Being armed with knowledge will help you provide the best care. Knowledge can provide the courage and power you need during a difficult time.
Remember the person inside.
The person you are caring for may seem or look different. Maybe they no longer laugh as easily, forget things or even appear lazy and unmotivated. They may see changes in themselves, which can be scary and frustrating. Negative emotions can manifest themselves in unusual or difficult behaviors like yelling or even refusing to speak. Despite these changes, try picturing what the person you are caring for was like when they were well. Remember that your loved one is still there inside their ailing body. Keep the faith that they will once again be healthy and back to themselves in the future.
Approach caregiving with your heart.
Being a caregiver is an important job! If you let your heart lead your actions, you will have a positive impact on the life of someone else. Being a caregiver should be something you want to do, not something you have to do.
The person you are caring for may be physically or mentally impaired, but it’s important to remember that they still have an opinion. Even someone who is unwell can teach you important life lessons. Respect their opinion and take time to consider their perspective.
Try to be as sensitive as possible to non-verbal signs and symptoms your loved one may display. Even though they may be unable to verbalize it, they may have a critical health problem or personal care need that you can help address.
Trust in your ability to be a caregiver.
Have faith that you are able to be a caregiver. There is no perfect way to be a caregiver, and perfection isn’t necessary. What is important is that you are doing your best. There will always be some days that are better than others.
Know your limits.
Being a good caregiver does not mean you have to respond immediately to every issue. If there is a problem that isn’t urgent and you can’t get to it right away, acknowledge the request and tell your loved one you’ll help as soon as possible. Setting boundaries will help you both define the caregiver relationship.
Live in the present.
Try not to get caught up with an endless list of tasks! It’s okay to take time to walk away from your to-do list and try to understand how your “patient” is feeling. Spending time with the person you are caring for and enjoying their company can be healing for both of you.
Communicating with touch can be healing.
Giving a hug, holding a hand or patting an arm can go a long way in helping someone feel reassured, secure and calm if they’re anxious.
Try not to be judgemental.
Remember that the person you are caring for did not choose to be sick. It’s likely that they have a strong desire to be independent and to regain control of their life. Try to put yourself in their shoes and imagine the challenges of being sick and unable to do what you may want to do.
Teamwork is an important part of caregiving.
Build a team of family, friends, community support workers and medical professionals so you are not isolating yourself as you care for someone else. Make sure everyone on the team is on the same page. Having a support network will just make you a better caregiver.
What NOT to do
And just as I suggest certain things to be sure you’re doing… there are also things you should avoid! Here are some tips of what NOT to do as a caregiver.
Do NOT avoid sharing with others that you are caring for someone.
It is healthy and appropriate for you to confide in someone about what is going on in your life. Oftentimes caregivers, and especially men, don’t feel comfortable sharing with others that they are caring for someone at home. Talking about your challenges can help.
Do NOT pretend that your life has not changed.
The caregiver needs time to grieve the loss of their previous life. It’s okay to go through the emotions of this experience.
Do NOT attempt to be invincible.
All caregivers will have bad days, which include days where they just don’t want to be caring for anyone else. While you may feel guilty for thinking this, recognize that no one can keep up the role of a caregiver 100 percent of the time. Remind yourself that you are human and take comfort in knowing that you’re doing the best you can.
Try NOT to feel reluctant to share your challenges with the person you are caring for.
It may seem that it’s better in the long run to protect the person you’re caring for from your own feelings of doubt and guilt. However, opening up about some of your struggles with the person you’re caring for gives them the opportunity support you a little but, too. In the end, you may get some support and encouragement, and the person you’re caring for will feel like they’re giving something back to you.
Try NOT to isolate yourself, even if the person you are caring for his housebound.
Try to get a friend or family member to help you so you can have a break, leave the house and connect with others. If this is not possible, try looking into local community programs for support.
Self-Care Tips For The Caregiver
In addition to caring for your loved one, it is important to take care of yourself. If you aren’t physically and emotionally healthy it will be very difficult to tackle the job of taking care of someone else. If you don’t know anyone in your community and you don’t have family nearby, taking a break from caregiving and setting boundaries can be impossible. Try looking online for respite services in your area. Remember: If you don’t take care of yourself, you will not be able to care for anyone else. You do not have to feel guilty about your own self care.
Here’s how caregivers can make sure they’re taking care of themselves:
- Carve out the time you need. It may be that you need a short break once each week or you may need a break once a day. Try to go for a walk at least three times per week for 10 minutes.
- Before visiting someone who is unwell, take a moment to breathe deeply and center yourself. If you aren’t in a good place mentally, someone who has very dark thoughts and is complaining about their health can easily bring you down.
- Ask for help. Others may think you have everything under control. They may not realize you need a break if you don’t ask for it.
- Eat well! Sometimes caregivers pour their efforts into preparing healthy meals for the ill person. Be sure to feed yourself well, too! Ensuring your body has the vitamins and nutrients it needs will make it easier for you to cope with a stressful situation.
- Integrating a body/mind/spirit practice into your life can also be helpful for a caregiver. Consider simple breathing exercises, guided meditations or even a warm bath and a cup of tea to help you relax and restore your energy.
- It’s okay to be honest with yourself and others about how difficult caregiving can be.
At the end of the day, there is no perfect way to be a caregiver, and there’s no such thing as a perfect patient! Even though it may feel overwhelming, with some love, patience and advocating, the caregiver role can be manageable. Just remember that you are doing a wonderful thing in helping someone with a chronic illness. And take care of yourself too!
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