Caring for the Caregiver

Research has shown that emotional support is as important to a cancer patient as the physical treatment that they receive, and the support of caregivers is a vital component in their successful recovery. If you are caring for your loved-one as they are going through cancer treatments, you know how all-consuming your role can be. Many caregivers are surprised to find themselves not only physically exhausted, but mentally and emotionally drained as well.

Besides the stress of simply being there for your loved-one around the clock, you might also experience increased feelings of isolation and loneliness due to your single-minded focus. Calling on friends and neighbors to give some relief - even if only for an hour here and there - is vital. A caregiver needs to care for themselves as well in order to provide effective support for the patient.

If you're a caregiver who does not have other people in your life to offer support, seek out support groups, counselors, or even online information that is available to help replenish your emotional state. A good source for information online is the National Family Caregivers Association. Don't hesitate to ask friends for help if they don't offer - many people want to help but don't know what to offer.

There are also agencies that specialize in caring for patients that can be contracted on a monthly, weekly or even an "as-needed" basis. Look online or in your local phone book for "home health", "in-home care", and "personal assistance" companies. Some have nurses on staff to assist those who need medical care at home, while others offer non-medical services like running errands, doing your shopping, or house-cleaning. If you are in Northwest Arkansas, you can call us for a list of local agencies that offer services in our area.

If you or someone you know are experiencing emotional difficulties resulting from caring for a cancer patient, call us. Hope Cancer Resources offers counseling to cancer patients and their families and caregivers at no-cost. Our social workers are available for consultation Monday-Friday, 8 a.m. - 5 p.m. at 479-361-5847.

What about the Caregivers?

There is plenty of information out there about dealing with cancer as a patient. Magazines such as Cure and Coping with Cancer, and their accompanying websites, provide wonderful support to patients about the reality of life with cancer and follow them into recovery and survivorhood. There are support groups for different kinds of cancer diagnoses (see ours here), books to read, and products aimed at making a cancer patient more comfortable and better prepared to cope with their journey.

But what about the caregivers? Very often, cancer patients are dependent on spouses, siblings, children, or just close friends. Patients need help navigating the sometimes overwhelming array of new physicians and medications and the added scheduling burden of frequent visits to different doctors and medical clinics. Functions that used to be managed easily by the patient like doing laundry and mowing the lawn become highly scheduled and doled out to volunteers pulled from family members and friends. Behind all of this scheduling and dietary monitoring and pill-sorting and equipment renting is usually one specific person who takes on the bulk of the burden.

Caregiving can exhaust even the strongest individual very quickly. But the physical tasks that are required are not the only causes of fatigue. The emotional burden of maintaining a positive outlook around your loved ones or just having to be the "keeper of the information" can also be extremely tiring. If you are a caregiver don't forget to consider your own needs for down-time.

Take advantage of all those offers of help and be specific. Now is not the time to say "Oh, we're fine... thanks for your offer." If someone asks what they can do - give them a short list. Ask "What are you willing to do?" In some cases, leaving the house for anything other than a medical appointment can be daunting or even impossible depending on a patient's condition. Would they mind going to the grocery store with a shopping list for you? How about picking up your dry-cleaning and running a package by the post office? If they are offering to help - let them.

Something that often comes as a surprise to caregivers is the range of emotions that accompany the journey. It's not just the patient who has to deal with these feelings, but sometimes the caregiver has a harder time showing them. There is a mis-conception that a caregiver needs to remain strong and not let their emotions get the best of them. Here is some info from the National Cancer Institute that deals with this subject:

It's common to feel stressed and overwhelmed at this time. Like your loved one, you may feel angry, sad, or worried. Try to share your feelings with others who can help you. It can help to talk about how you feel. You could even talk to a counselor or social worker.

You probably have many feelings as you take care of your loved one. There is no right way for you to feel. Each person is different. The first step to understanding your feelings is to know that they're normal. Give yourself some time to think through them. Some feelings that may come and go are:

• Sadness. It's okay to feel sad. But if it lasts for more than 2 weeks, and it keeps you from doing what you need to do, you may be depressed.
• Anger. You may be angry at yourself or family members. You may be angry at the person you're caring for. Or you may be angry that your loved one has cancer. Sometimes anger comes from fear, panic, or stress. If you are angry, try to think of what makes you feel this way. Knowing the cause may help.
• Grief. You may be feeling a loss of what you value most. This may be your loved one's health. Or it may be the loss of the day-to-day life you had before the cancer was found. Let yourself grieve these losses.
• Guilt. Feeling guilty is common, too. You may think you aren't helping enough. Or you may feel guilty that you are healthy.
• Loneliness. You can feel lonely, even with lots of people around you. You may feel that no one understands your problems. You may also be spending less time with others.

Talk with someone if your feelings get in the way of daily life. Maybe you have a family member, friend, priest, pastor, or spiritual leader to talk to. Your doctor may also be able to help.
Here are some other things that may help you:

• Know that we all make mistakes whenever we have a lot on our minds. No one is perfect.
• Cry or express your feelings. You don't have to pretend to be cheerful. It's okay to show that you are sad or upset.
• Focus on things that are worth your time and energy. Let small things go for now. For example, don't fold clothes if you are tired.
• Remind yourself that you are doing the best you can.
• Spend time alone to think about your feelings.

At Hope Cancer Resources, our licensed social workers and counselors are able to schedule individual appointments with you and/or your loved one to help you cope with the varied physical and emotional challenges that accompany a cancer diagnosis. Don't hesitate to reach out to those around you. We're here to help.

"In Sickness and In Health"

In the days leading up to Valentine's Day we are bombarded with images of hearts and flowers, aisles crammed with candy and cards and love-themed gifts intended to prove the devotion of the giver. It's a time to intensify already growing feelings, or to reinforce those feelings that have already been there for a time... It's a time to sell a lot of candy and cards!

But sometimes the feelings that send people scrambling to the local Hallmark store the week before February 14th can be at risk of faltering in the face of illness. The mental and physical fatigue that can result from stress and tasks added to the "to-do" list of a caregiver is potentially devastating to even the strongest relationships. At the very least, it can put the caregiver at risk for needing their own mental health support, and they shouldn't be afraid to ask for it.

We're all capable of imagining the emotions a cancer patient might experience as they embark on their journey of treatment and recovery, but a study published in the Journal of Clinical Oncology and reported on Newsmax.com explored the stress levels of caregivers and found them at risk for their own emotional challenges. Thirteen percent (13%) of the people in the study acknowledged feelings that signaled problems such as anxiety disorder, depression, and post-traumatic stress disorder. It's easy for the outside world to focus on helping the patient as they fight the disease and not realize that a very intense battle is going on in the head and heart of the caregiver as well. Caregivers deal with a multitude of feelings, including:

• fear - of losing their loved one;
  
• anger - about their loved-one's diagnosis and/or for the added burden they they are being required to bear;
• inadequacy - at not being able to do enough to help, or not doing it all well enough;
• grief - for the loss of the "normal" life they were living before the diagnosis; 
• guilt - that they are healthy, or they they are feeling some of the feelings listed above.

The best thing friends and family can do is offer to relieve the caregiver on occasion to allow them some time away from the stress of their duties. For some, it will hard to even admit that they need this help, but it's vital that the caregiver be allowed to need support as well as the patient. It may help to attend a support group for caregivers or to speak to a counselor one-on-one to share fears and frustrations. A good counselor will help them recognize that their needs are important, and that caring for their loved-one is a demanding task - one that requires someone who is also taking care of themselves.

If you are a caregiver and would like information on support groups in your area, check with your oncology clinic staff. Seek out the services of a licensed social worker or counselor to discuss your options for self-care. If you are in Northwest Arkansas you can contact us for assistance. Our licensed social workers are here to help you through this very difficult time - you might meet with them once and feel better equipped for your journey, or you may need someone to offer support on a long-term basis. Either way, we're here to help.

Remember that your love will help your loved-one see light at the end of the tunnel on some very difficult days, but it's okay if it's not enough to keep you from becoming exhausted. Taking care of you will help you take care of them.