Caring for the Caregiver
Being a caregiver for a person with cancer takes its toll on one’s health, and even more so when the person with cancer is your child.
Caregivers of Children with Cancer (usually the mother) are faced with far more stress, as they usually have to give up their job, spend endless hours at their child’s bedside in the hospital – sometimes for weeks or even months at a time, make endless trips to doctors, clinics and hospitals, and still try to be there for the rest of the family. Childhood Cancer unfortunately often ends in divorce, which places even more of a burden on the mother and the stress becomes far worse and can often turn into depression or burnout.
While it is natural to want to stay by your sick child’s side and meet the needs of their siblings and other family members – all at once, this is a virtually impossible task, and unless you give both your mind and your body a break once in a while, you could well end up with caregiver-burnout!
When one continuously cares for others while under tremendous stress, one can begin to feel that you’re in over your head and have little control over the situation – this can cause the stress to begin taking a toll on your health, relationships, and state of mind—eventually leading to burnout.
When you are burned out, it’s tough to do anything, let alone look after your ill child, which is why taking care of yourself is not a luxury; it is a necessity! There are plenty of things you can do to rein in the stress of caregiving and regain a sense of balance, joy, and hope in your life.
Caring for a loved one can be very rewarding, but it also involves many stressors. And since caregiving is often a long-term challenge, the stress it generates can be particularly damaging. When the caregiving goes on for years and there is minimal hope that your child will get better or if, despite your best efforts, their condition is gradually deteriorating, it can be particularly disheartening.
Caregiver Stress develops whenever you start to feel that your responsibilities are greater than the time, energy, or other resources that you have to meet them. It is no wonder, then, that stress is so common among caregivers of people coping with cancer, who face so many competing demands.
Finding ways to manage stress can help you feel better, protect your health, and make you better equipped to care for your loved one.
Research shows that the stress of caregiving can take a serious toll on the emotional and physical health of caregivers. Emotional effects tend to show up first. You may feel worried and anxious, for example, or irritable – more likely to snap or overreact to things that might not normally bother you. It’s important to seek support early.
Physical symptoms of caregiver stress may include tension, headaches, sleep problems, and weight changes, and can leave you vulnerable to a wide range of problems, including depression, anxiety, and burnout. Long-term stress has also been found to suppress the immune system. This increases your chances of developing chronic health problems, such as heart disease or high blood pressure. You may also experience a worsening of existing health conditions.
If you don’t get the physical and emotional support your need when you need it, both you and your Child with Cancer will suffer, which is why managing your stress levels is just as important as making sure your Child with Cancer gets to their doctor’s appointment or takes their medication on time.
Signs and Symptoms of Caregiver Stress & Burnout
By learning to recognise the signs of caregiver stress, you can take steps to deal with the problem and prevent burnout. If you recognise that you have already hit breaking point, you can take immediate action.
Once you burn out, caregiving is no longer a healthy option for either you or the person you’re caring for, so it’s important to watch for the warning signs.
Common Signs & Symptoms of Caregiver Stress
- Anxiety, depression, irritability
- Feeling tired and run down
- Difficulty sleeping
- Overreacting to minor nuisances
- New or worsening health problems
- Trouble concentrating
- Feeling increasingly resentful
- Drinking, smoking, or eating more
- Neglecting responsibilities
- Cutting back on leisure activities
Common Signs & Symptoms of Caregiver Burnout
- You have much less energy than you once had
- It seems like you catch every cold or flu that’s going around
- You’re constantly exhausted, even after sleeping or taking a break
- You neglect your own needs, either because you’re too busy or you don’t care anymore
- Your life revolves around caregiving, but it gives you little satisfaction
- You have trouble relaxing, even when help is available
- You’re increasingly impatient and irritable with the person you’re caring for
- You feel helpless and hopeless
Finding Balance in Your Life
Since it’s easier to accept a difficult situation when there are other areas of your life that are rewarding, it’s important not to let caregiving take over your whole existence.
Invest in things that give you meaning and purpose—whether it’s your family, church, a favourite hobby, or your career.
While caring for a loved one will never be stress-free, the following tips can help you to lighten the load and feel more balanced:
The number one contributor to burnout and depression is feeling powerless. This is an easy trap for a caregiver to fall into, especially if you feel helpless to change things for the better. It is important that you realise that you are not powerless – especially when it comes to your state of mind.
While you may not always be able to get the extra time, money, or physical assistance you’d like, you can always get more happiness and hope.
- Embrace your Caregiving Choice – Acknowledge that, despite any resentments or burdens you feel, you have made a conscious choice to provide care. Focus on the positive reasons behind that choice. These deep, meaningful motivations can help sustain you through difficult times.
- Focus on What You Can Control –You can’t wish your child’s cancer away or force anyone to help out more. Rather than stressing out over things you can’t control, focus on the way you choose to react to problems.
- Celebrate the Small Victories – If you start to feel discouraged, remind yourself that all your efforts matter. You don’t have to cure your loved one’s illness to make a difference. Don’t underestimate the importance of making your loved one feel more safe, comfortable, and loved!
Get the Appreciation You Need
Feeling appreciated can go a long way toward not only accepting a stressful situation, but enjoying life more. Studies show that caregivers who feel appreciated experience greater physical and emotional health. Caregiving actually makes them happier and healthier, despite its demands. But what can you do if the person you’re caring for is no longer able to feel or show their appreciation for your time and efforts?
- Imagine How Your Loved One Would Respond If They Were Healthy -If they weren’t preoccupied with illness or pain (or disabled by dementia), how would your loved one feel about the love and care you’re giving? Remind yourself that the person would express gratitude if they were able.
- Applaud Your Own Efforts – If you’re not getting external validation, find ways to acknowledge and reward yourself. Remind yourself of the good you’re doing. If you need something more concrete, try making a list of all the ways your caregiving is making a positive difference. Refer back to it when you start to feel low.
- Talk to a supportive family member or friend -Positive reinforcement doesn’t have to come from the person you’re caring for. When you’re feeling unappreciated, turn to friends and family who will listen to you and acknowledge your efforts.
Ask for Help
Taking on all of the responsibilities of caregiving without regular breaks or assistance is a surefire recipe for burnout. Don’t try to do it all alone.
Tips for getting the caregiving help you need
- Look Into Respite Care – Enlist friends and family who live near you to run errands, bring a hot meal, or “baby-sit” the patient so you can take a well-deserved break. In-home services can also be provided by volunteers or paid help, either occasionally or on a regular basis. Or you can explore out-of-home respite programs such as adult day care centers and nursing homes.
- Speak Up – Don’t expect friends and family members to automatically know what you need or how you’re feeling. Be up front about what’s going on with you and the person you’re caring for. If you have concerns or thoughts about how to improve the situation, express them—even if you’re unsure how they’ll be received. Get a dialogue going.
- Spread The Responsibility – Try to get as many family members involved as possible. Even someone who lives far away can help. You may also want to divide up caregiving tasks. One person can take care of medical responsibilities, another with finances and bills, and another with groceries and errands, for example.
- Set Up A Regular Check-In – Ask a family member, friend, or volunteer from your church or senior center to call you on a set basis (daily, weekly, or as often as you think you need it). This person can help you spread status updates and coordinate with other family members.
- Say “Yes” When Someone Offers Assistance – Don’t be shy about accepting help. Let people feel good about supporting you. It’s smart to have a list ready of small tasks that others could easily take care of, such as picking up groceries or driving your loved one to an appointment.
- Be Willing To Relinquish Some Control – Delegating is one thing, trying to control every aspect of care is another. People will be less likely to help if you micromanage, give orders, or insist on doing things your way.
Give Yourself a Break
As a busy caregiver, leisure time may seem like an impossible luxury. But you owe it to yourself—as well as to the person you’re caring for—to carve it into your schedule. Give yourself permission to rest and to do things that you enjoy on a daily basis. You will be a better caregiver for it.
There’s a difference between being busy and being productive. If you’re not regularly taking time-off to de-stress and recharge your batteries, you’ll end up getting less done in the long run. After a break, you should feel more energetic and focused, so you’ll quickly make up for your relaxation time.
- Maintain Your Personal Relationships – Don’t let your friendships get lost in the shuffle of caregiving. These relationships will help sustain you and keep you positive. If it’s difficult to leave the house, invite friends over to visit with you over coffee, tea, or dinner.
- Prioritise Activities That Bring You Enjoyment – Make regular time for things that bring you happiness, whether it’s reading, working in the garden, tinkering in your workshop, knitting, playing with the dogs, or watching the game.
- Find Ways To Pamper Yourself – Small luxuries can go a long way in relieving stress and boosting your spirits. Light candles and take a long bath. Ask your spouse for a back rub. Get a manicure. Buy fresh flowers for the house. Or whatever makes you feel special.
- Make Yourself Laugh – Laughter is an excellent antidote to stress—and a little goes a long way. Read a funny book, watch a comedy, or call a friend who makes you laugh. And whenever you can, try to find the humour in everyday situations.
- Get Out Of The House – Seek out friends, family, and respite care providers to step in with caregiving so you can have some time away from the home.
Take Care of Your Health
Think of your body like a car. With the right fuel and proper maintenance, it will run reliably and well. Neglect its upkeep and it will start to give you trouble. Don’t add to the stress of your caregiving situation with avoidable health woes.
- Keep On Top Of Your Doctor Visits – It’s easy to forget about your own health when you’re busy with a loved one’s care. Don’t skip check-ups or medical appointments. You need to be healthy in order to take good care of your family member.
- Exercise – When you’re stressed and tired, the last thing you feel like doing is exercising. But you’ll feel better afterwards. Exercise is a powerful stress reliever and mood enhancer. Aim for a minimum of 30 minutes on most days—break it up into three 10-minute sessions if that’s easier. . When you exercise regularly, you’ll also find it boosts your energy level and helps you fight fatigue.
- Meditate – A daily relaxation or meditation practice can help you relieve stress and boost feelings of joy and well-being. Try yoga, deep breathing, progressive muscle relaxation, or mindfulness meditation. Even a few minutes in the middle of an overwhelming day can help you feel more centered.
- Eat Well – Nourish your body with fresh fruit, vegetables, lean protein, and healthy fats such as fish, nuts, and olive oil. Unlike sugar and caffeine—which provide a quick pick-me-up and an even quicker crash—these foods will fuel you with steady energy.
- Don’t Skimp On Sleep – Cutting back on time in bed is counterproductive—at least if your goal is to get more done. Most people need more sleep than they think they do (8 hours is the norm). When you get less, your mood, energy, productivity, and ability to handle stress will suffer.
Join a Support Group
A caregiver support group is a great way to share your troubles and find people who are going through similar experiences each day. If you can’t leave the house, many Internet groups are also available.
In most support groups, you’ll talk about your problems and listen to others talk; you’ll not only get help, but you’ll also be able to help others. Most important, you’ll find out that you’re not alone. You’ll feel better knowing that other people are in the same situation, and their knowledge can be invaluable, especially if they’re caring for someone with the same illness as as your loved one.
Local vs. Online Support Groups for Caregivers
Local Support Groups
Online Support Groups
|People live near each other and meet in a given place each week or month.||People are from all over the world and have similar interests or problems.|
|You get face-to-face contact and a chance to make new friends who live near you.||You meet online, through email lists, websites, message boards, or social media.|
|The meetings get you out of the house, get you moving provide a social outlet, and reduce feelings of isolation.||You can get support without leaving your house, which is good for people with limited mobility or transportation problems.|
|Meetings are at a set time. You will need to attend them regularly to get the full benefit of the group.||You can access the group whenever it’s convenient for you or when you need help most.|
|Since the people in the support group are from your area, they’ll be more familiar with local resources and issues.||If your problem is very unusual—a rare disease, for example—there may not be enough people for a local group, but there will always be enough people online.|
To find a community support group, check the yellow pages, ask your doctor or hospital, or call a local organisation that deals with Children with Cancer. To find an Internet support group, visit the websites of organisations dedicated to Children with Cancer.