A caregiver is a person who provides the necessary support and care to someone suffering from illness. In many cases, this person does so without compensation because they are caring for a loved one. They are crucial for the physical and emotional well-being of the patient, and can have a significant impact on their recovery. Often, a parent, spouse, adult child, or partner will be the primary caregiver for someone suffering from long-term illness. This is particularly common for individuals with limited resources.

Caregivers help those suffering from serious illnesses with basic daily tasks such as cleaning, eating, dressing, and running errands. Caregivers also frequently double as financial, personal and legal assistants. As the person fighting illness faces increasing challenges throughout the healing process, they often need help with these and other common tasks to sustain their way of living. Banking, keeping up with work related tasks, communication with stakeholders and treatment providers, and making important decisions in addition to day-to-day medical care; the list can be quite demanding. As fulfilling and enriching as it can feel at times, caregiving for cancer patients at home is not an easy task. It comes with its own set of challenges for the caregiver as well as the patient.

What is it like being a caregiver?

Being a caregiver can be very fulfilling, and can create a deep bond between the caregiver and the loved one. Knowing that you are playing a significant and meaningful role in another person’s life, provides a great sense of enrichment and accomplishment. Caregiving provides you the opportunity to express your love to that person during one of the most challenging and difficult times in their life. The experience can also teach you a lot about yourself.  While you may struggle, you very likely will also discover some hidden strengths you never realized you had.

Being a caregiver also creates opportunities to interact and create new relationships with other people or families who are going through similar challenges as you. Through support groups, medical center interactions, and local volunteer programs, you will likely end up meeting people you will build life-long connections with.

One of the primary challenges for a new caregiver, however, is accepting that you will have very little time for your own needs. Caregivers keep a very taxing schedule just to keep up with their normal life.  While you are helping to support someone else, it’s easy to let taking care of your own needs slip away. Since caregiving is frequently more physically and emotionally taxing than people are prepared for, there are some things you should keep in mind. 

Caregiving can be very challenging and at times even an unexpectedly frustrating experience. Caregivers are prone to feeling deep sadness and emotional distress as support diminishes over time but need may not. They will frequently face feelings of exhaustion, isolation, and a loss of freedom they had no time to prepare for. Not only are they saddened by the current condition of their loved one, but they also have to cope with losing the normalcy and freedom they are used to in their own life. While facing long hours with few breaks and sometimes little cooperation from the very loved one they are caring for, caregivers can easily become prone to high stress levels.  This stress over time can even lead to developing physical complications. Fatigue, stress-related pain, depression, and sleep problems are just a few. things to watch out for during your caregiving experience.

Because caregiving can be so demanding both emotionally and physically, it is crucial to plan ahead to create ways find joy in your caregiving experience. It is important to make sure both you the caregiver, and your loved one come through the experience as healthy, happy and whole as possible.  It is also important to remember part of planning to be a caregiver, is creating the support you need for yourself. Your loved one will need a lot of support to get through this, but so will you.

Some things you can do to prepare include:

1.  Gathering as much of a support team as possible.  Although you may need to be the primary caregiver, there are many people in your life that can play smaller roles.  Friends, family, co-workers, and people from groups you belong to like churches and activity groups can provide critical support.  They may not be able to provide every day help, but a consistent two hour break every day can make a huge difference in relieving stress and loneliness.  People want to help, let them.

2.  Prepare a self-care plan while you are preparing a health-care plan for your loved one.  Scheduling treatments, doctor visits, meals and medication for the patient is critical, but so is scheduling time for yourself.  Make sure you don’t get so caught up in being busy that you forget to give yourself little joy breaks when possible.  The patient needs to rest to recover well, and so do you.

3.  Find ways to share joy with the patient.  It’s too easy to get caught up in the stress of medical care.  Have a time to share memories, music, meals, or games.  Take time to finally organize those family pictures or journals.  The patient might not have many physical capabilities or much energy, so put the time you can to use feeling good with each other.

4.  Get organized.  Make lists of medications(with doses and what they were prescribed for), treatments(and when they are scheduled), meal requirements, doctors(and what they treat), medical history, power of attorney contacts, and any other important contacts that are easy to carry everywhere you go.  Being asked questions you aren’t prepared to answer, or forgetting schedules for medications and treatments will only add undue stress to your experience.  Knowing where the power of attorney is an carrying a copy, knowing if there is a DNR, and being aware of how to proceed if the worst happens are also important elements to being prepared and reducing excess stress and worry.

5.  Look for outside help.  Search for organizations that can fill in care gaps or provide support with meals or shopping.  They exist in most communities.  Also research financial assistance to make sure being a caregiver doesn’t impact your own financial situation negatively.  Compassionate care benefits, caregiver tax credits and more exist to help make sure you don’t take on undue financial burden during this difficult time

What if you aren’t prepared to be the caregiver?

Depending on your family situation, you might find yourself in the caregiving role whether you are prepared for it or not. You may not have been prepared to assume this role, or be in the best position to handle the responsibilities. Most people will feel obligated to take on the caregiver responsibility even if it will put undue strain on their life. Being prepared to manage the overwhelming feelings that can come with caregiving out of a sense of obligation can make all the difference in your experience.  Doing what you can to prepare can make the difference between coming through the experience a stronger and more developed person, or total disaster.

If you find yourself in a position where other family members, friends, the cancer care team or anyone else has placed you into a caregiving role that you don’t feel able or willing to fill, there are steps you need to take. In such cases, you should figure out where your strengths and weaknesses lie, and speak them out as soon as possible. This will help to deal with potential problems as early as possible, and also to find people to build your support network and help you where you need it the most. Having others to fill in your weak spots and being upfront about your capabilities will ensure that you are able to successfully fill this role.

Reaching out to a professional about your caregiving situation and finding support groups as soon as possible will also help you get proven support, strategies, and solutions to make the process as successful as possible. Don’t underestimate the importance of reducing the stress and frustration of having a difficult role you didn’t ask for. 

Don’t forget how critical it is to create situations where you can share your caregiving responsibilities among friends, family, and other members of your social circle. Identifying and connecting with family members, friends or any other capable and willing person who can support you as soon as possible, and being honest about your situation, can take some of the burden and make a huge difference. 

This will help free up some time for you to continue to live your life, and can make a tremendous positive difference in the experience for both you and the patient. Don’t forget they see when you carry stress too, and that adds to their burden as well.  Simply taking a few duties off your plate or giving yourself a free hour here and there, can significantly reduce your burden and levels of stress, making a more enjoyable and successful experience for everyone.

Again, Remember to Take Care of Yourself Too

Caregivers have to deal with a lot. Emotional distress caused by having to witness your loved one suffer, financial worries, future uncertainties, making tough decisions, unplanned lifestyle changes, etc. etc.  It is almost constant emotional turmoil. In order to successfully manage the cocktail of overwhelming emotions and elevated stress levels, it’s important to have a plan for self-care in place at all times. Not having one or not implementing the self-care plan you have, can seriously affect your physical and mental well-being. This can create unnecessary additional stress and a constant feeling of failure or being overwhelmed.

It is critical for you to take good care of yourself and seek the support you need during your time as a caregiver.  Simple things like journaling during down-time, having a plan to get adequate rest, creating windows of free time(even small ones) where you can focus entirely on yourself are just a few positive focus points. Don’t forget how critical social time can be too.  Caregiving can be isolating and create loneliness.  Creating time where loved ones can support you and focus on you, can make all the difference in your experience.

Dealing with Depression

Caregivers often experience depression. This is quite understandable, considering the stress involved with caring for patients at home. It is imperative to deal with these symptoms early, to help the caregiver better cope with this new role. There are some steps you can take to help keep yourself happy and fulfilled. Creating daily rituals for self-care and mental health will support your emotional well being.  Consider adding these to your caregiving schedule, many of which can be shared experiences with the patient:

– Regular exercise

– Eating a healthy diet

– Support from family and friends in providing care for the patient

– Consulting a mental health professional, counselor, or writing down your thoughts and challenges daily

– Getting spiritual support, (i.e.-engaging in prayer, religious activities, and meditation)

– Engaging in recreational activities with other people

There are many positive, healthy ways to prevent this kind of depression, make your mental health a priority.

Other Types of Activities You Should Practice for Well-Being

Engaging in activities that relax you and make you feel better, are a great starting point. For example:

-Watching comedies or uplifting films

-Taking walks

– Activities that engage other people like going out to lunch with a friend

– Activities that provide a sense of accomplishment, like a hobby or completing a project

All of these small positive activities can really make a difference when you are feeling inadequate, isolated or down. 

Consulting A Mental Health Specialist

If you ever feel overwhelmed by the responsibilities and feelings that come with caregiving, then you might want to seek professional help. It is important to seek a mental health specialist, when or if you ever start feeling depressed or completely overwhelmed. It is normal to get these feelings in a caregiver situation, but it is critical to address them.  If you start to constantly feel angry or like hurting someone, including yourself, if you experience increased dependency on alcohol and drugs, or you start giving up on yourself or feeling worthless-then a healthcare professional is only a call away.

Take  Regular Breaks

Even though you are a caregiver, it does not mean that you must be by the patient’s side at all times. You need to find and make some time for yourself to unwind. Your health is just as important in the assurance of helping your loved one to get the best possible care.  

Understand that the patient probably needs some space from time to time to deal with their own emotions as well.  We all want to be there for people who are struggling, but sometimes what they need the most is time with themselves to process their situation.  They probably also feel a sense of guilt for taking up so much of your time, so if they tell you to take some time for yourself, do it.

If you find yourself in a situation where you just can’t take a break, consider getting respite care to help fill in for you, so you are able to take care of your own needs and handle other things.

Identify Things That You Can’t Do

You obviously cannot be expected to handle everything by yourself. Seek help in those areas that you are unable to handle alone. It is always important to reach out to others. Bearing the burden alone won’t do you, or your loved one any favors. People want to help, but during such challenging and emotional times they may not know how.  Make it clear what you need, and let people help.

Seek Emotional Support for Yourself

Getting support from your loved ones is crucial for your wellbeing, and that of the patient. You can also join a support group. Here, you will be able to interact with others suffering from cancer, speak to their caregivers, share your experiences and support each other. It is a much better feeling to know that there is help out there, and that you are not alone.

Join Our Community

Medgift support pages aren’t just about raising money, they are about finding the support you need to be successful in every aspect of caregiving.  Start a support page for yourself and your loved one HERE, or email us any time to let us know how we can help HERE.

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