According to APA (2009):
“Family caregivers operate as extensions of health care systems performing complex medical and therapeutic tasks and ensuring care recipient adherence to therapeutic regimens. They operate as home-based “care coordinators” and personal advocates for care recipients. As health care costs and utilization continue to rise, individuals facing physical, mental or behavioral challenges are increasingly dependent on the ability of family or other informal caregivers to operate competently as formal health care providers. Yet, despite their important function in our society, caregivers do not receive adequate training, preparation, or ongoing support from health care systems.”
In other words, caregivers have the big responsibility of being there for their loved one who suffers from an illness. Often times, this involves taking care of the physical needs of the sick person, which is why they are referred to as extensions of the health care system. Aside from advocating for their loved ones, caregivers coordinate treatment by doing things like scheduling doctor’s appointments, facilitating collaboration of care between the various doctors, attending various appointments and therapies, and being present during any crisis situations such as emergency room visits.
It is very true that often times, caregivers do not get the support or resources they need to maintain stability in the midst of their caretaking responsibilities. Caregivers are extremely important and need support from the medical facilities that are involved as well as family and friends.
The loved ones of the chronically ill also experience the impact of the chronic illness. According to Nazon (2013), the family of the chronically ill person must adjust to increased stress, changes in the nature of the relationship, changes in the family structure, changes in each person’s role in the home, and loss of income. All of these various things have a significant impact (Nazon, 2013). Let’s address these various areas further:
- Changes in the nature of the relationship: Various aspects of the relationship may change depending on duration and severity of the illness. For instance, if a husband is helping to care for his wife, there may be a change in their level of intimacy including decreases in the frequency of sex. The couple may not be able to “date” or engage in quality time together. Furthermore, the relationship may be dominated by the need for the sick individual to be dependent upon her spouse.
- Changes in Family Structure: The increasing need for additional help may change the structure of the family. For instance, if the sick person needs help beyond the capabilities of the home, it may be necessary to include rehabilitative services such as a home care facility outside of the home. This could be either temporary or long term. Another example could be if a family needs to bring someone additionally into the home to extend more help. This could involve, for instance, a mother coming to stay with her adult child, the spouse, and grandchildren to help because the spouse works full time to meet the financial demands of caring for the family.
- Changes in each person’s role in the home: Chronic illness may cause the need for changes in the role that each person plays. If a wife/mother is stricken with an illness that causes a decrease in functioning, she may not be able to perform tasks that she was capable of in the past. Caring for the children may be more challenging. Family activities such as going to the park or movies may experience decline. In a situation like this, the husband/father may have to take on some of the responsibilities that were previously executed by the wife. He may have to perform household tasks that he was not responsible for in the past. Changing roles take adjustment and may feel unnatural at first.
- Financial Loss: Often times when there is declining health, there is a loss of income in various ways. First of all, the person who is ill is probably no longer able to work. In an acute illness situation, after treatment such as surgery, the person is able to return to work eventually. However, with a chronic illness, often times the sick person is unable to return to work. In this case, the family loses that income and the household becomes a one income household. Secondly, depending on healthcare resources; a lot of the financial resources from the caregivers income may be used towards medical expenses. Even if the family has health insurance, money may be spent towards copays and expenses not covered by the health insurance. Additionally, it is common for a family to seek out the help of a medical expert with expertise with that particular illness which often times requires travel. For instance, many Cushings patients have to travel across the country or to another state to get adequate diagnosis and treatment. This requires that money is spent towards travel and lodging expenses. Finally, another possibility is that the caregiver must leave his/her job in order to take care of the spouse or the other family member full time. This would also result in a loss of income.
HelpGuide.Org (2012) provides certain tips for caregivers:
- Learn as much as you can about your loved ones’ illness and also how to be a caregiver. The more you know, the less anxiety you will have about your new role.
- Connect with other caregivers and get support from them. You also need support and it will help to gain a sense of relatedness with others.
- Trust your instincts. Although it is important to listen to the advice of medical doctors, you know your family member best, so always trust your gut.
- Encourage Independence for your loved one. Though your loved one depends on you, help provide tools that will help your loved one be as independent as possible.
- Know your limits. Assess your limits and be clear about how much you are able to do. Perhaps share responsibilities with others.
There are several feelings you may experience as a caregiver. As Dr. Karen talks about in her Ask Dr. Karen series, you are likely to experience the 5 stages of loss just like the person you are caring for, the person with the chronic illness. These stages include denial/isolation, anger, bargaining, depression, and acceptance. Remember, these stages are not linear and you can experience them more than once and also more than one stage at one time. Let’s recap these stages (Kubler-Ross, 2003):
Stage I: Denial and Isolation
For a caretaker, denial is the process in which you suppress your real feelings and emotions about your loved ones illness. There may be some avoidance involved with this and you may not want to face the reality of your loved ones health. After a while, denial is no longer useful, so you may isolate. This may involve engaging in behaviors such as avoiding phone calls, stopping attendance to spiritual services or family functions, and closing yourself off from people who attempt to reach out to you.
Stage II: Anger
As a caretaker, you may express anger at others and also express anger at God. You may wonder why it is your loved one who is suffering with this illness, such as Cushings. You may wonder why God would allow your family to go through this.
Sometimes, without being consciously aware, you may direct anger towards the person you are taking care of or the identified sick person. Your loved one may perceive your anger and you may not have language to describe your experience. You might not even be aware of your anger at the time. Also, if your loved one is in the angry stage himself, you may become hostile as a reaction to his anger. If dealing with a rare disease that has been misdiagnosed, you may be angry about the lack of understanding from the medical doctors directed at your loved one and at your family.
Stage III: Bargaining
When anger no longer works, we may turn to bargaining. We may consciously or unconsciously take responsibility for our loved one being sick. This magical thinking gives us a greater sense of control in a situation that feels very out of control. We may think that, perhaps because of a rough patch in your marriage, for instance, your loved one became sick.
You may also bargain with God. You do this by trying to make a deal that if you do something, God will cure your loved one in exchange. This also takes on accountability for making your loved one well. After a while, you will realize that bargaining does not work or help.
Stage IV: Depression
Depression can come with a great sense of loss. There is so much loss experienced within the family when a loved one is sick. There may be changes in the relationship. Perhaps the roles have changed and you now have greater responsibility with the children or household tasks. Financial loss can also take a huge toll on the family, elicit much stress in the home, and lead to depressive feelings. Feelings of depression may also increase if there is a demonstrated lack of understanding on the part of our extended families, friends, and church community. This can feel very lonely to the caretaker. Also, as the symptoms increase in your loved one and they become more depressed, you may feel increased feelings of sadness.
Stage V: Acceptance
This is the stage when one accepts what is happening. It is not to be confused with being happy with what is happening. However, the denial, anger, bargaining, and depression no longer exist.
Remember that even if, as the caretaker, you are at a point of acceptance, your loved one may not be in the same stage. This may be hard to deal with if you eagerly want your loved one to be in a different place. However, try to remain mindful that your loved one needs to process whatever state they are in.
HelpGuide.Org (2012) addresses other emotions that you may experience as a caretaker. These include:
- Anxiety and Worry: It is normal to feel anxious about the mounting responsibilities that you have as a caretaker of your loved one. You may also worry about the possibility of your loved one getting sicker and what will happen if symptoms worsen. Additionally, you may worry about what will happen to your loved one if something happens to you.
- Resentment: You may develop resentment towards your loved one even if you know it is irrational, in that they cannot help being sick. Resentments may revolve around the losses you and/or the family experiences due to the illness. Resentments can also be directed at family or friends who do not hold the same responsibilities for your loved one. You also may just be resentful and angry at the world in general.
- Guilt: You may take on accountability for your loved one being sick, even though you know that it is irrational. Also, you may feel sorry for the resentment and other feelings you have. Additionally, you may think that you should be a better caretaker or do more.
Remember that all of these feelings are normal. It is important to process these feelings with someone. You should probably not try to process them with your loved one who has the illness. Rather, talk to an empathic family member or friend, church counsel, or professional psychologist or mental health expert.
Absolutely yes! Please do not feel bad for asking for help! Remember, you are human and have limitations. If you burn out because of overextending or not accepting help from others, you are more likely to develop resentments towards the loved one you are taking care of.
You may feel embarrassed to ask for help or even afraid of rejection. These are normal feelings as well. Not everyone will understand. However, there are people who are more than happy and willing to lend a helping hand to you. There are resources that offer tools to help delegate tasks. Caring Bridge is an organization that helps sick ones and their families share information about their medical journey with other friends and family. On their website, you are able to develop a “support planner” which allows you to ask volunteers to be available to perform certain tasks either once or on a consistent basis. This will help to alleviate some stress. The website is http://www.caringbridge.org
The most important thing is to take care of yourself and your own needs. I know that with all of the busy demands and daily routines, this may be very difficult, but it is very important. This includes emotional, social, and physical needs.
Taking care of emotional needs includes doing things like talking to others and getting emotional support, writing in a journal or doing other creative expressive things like drawing or painting, engaging in mindfulness exercises or meditation, and taking time to process your emotions on a daily basis.
Taking care of social needs includes not allowing yourself to isolate from the outside world, having fun by doing things like watching funny movies, fully engaging in things that are important to you like work or engaging in hobbies that you enjoy, and being involved in a social organization or being a part of a church community.
Taking care of your physical needs involves making sure that you are healthy. Often times, caregivers neglect their own physical and mental health because they are so engaged in taking care of their loved one. My mentor once told me that “you are no good to your family if you do not take care of yourself”. This is so important. Physical health is a part of this. Concrete ways of doing this include eating right and engaging in regular exercise, getting adequate sleep and rest, and avoiding drugs or excessive alcohol. Also, you want to keep up with your own health care. Get regular physicals. Finally, don’t ignore signs of distress in your own body, such as symptoms of the flu (HelpGuide.Org, 2012).
Yes! Caregiving in general is a big responsibility. However, caregiving for someone with a rare disease can feel like an even bigger task. According to the Caregiver Action Network (2014), caregivers in the rare disease community face some exceptional hurdles including having overwhelming tasks to manage and even having to educate medical providers and the medical community about your loved ones rare disease. “So you need information, education and tools that can help you manage the many daunting tasks you face”.
I suggest that you follow all of the caregiver tips that have been talked about before. In addition to that, you can do things like obtain as much information as you can about the rare disease so that you can feel empowered to help your loved one with advocacy. Also, reach out to rare disease organizations, especially around the illness that your loved one suffers from. Such organizations include the National Organization for Rare Disorders (NORD), the National Adrenal Diseases Foundation (NADF), and Cushings Help, Org.
You also want to feel empowered as you go through this process. It may feel frustrating if others, including friends, family members, and even doctors do not understand the issues specific to the rare illness. Follow all of the guidelines of empowerment so that you don’t feel helpless in helping your loved one
Yes, support groups can be a great outlet for caregivers. Often times, caregivers do not take time for themselves to process whatever feelings and emotions come up for them. Do what you can to research support groups in your area. You can either attend a support group in person or, if you are limited in terms of physical restraints or time restraints, you can also join online support groups for caretakers or loved ones of the chronically ill. You will find that being a part of a support group helps you to integrate a positive experience in your life!
Yes! Here are a few websites that address issues concerning caregivers. I encourage you to explore these sites:
- Caring Bridge is an online resource that allows you and your family to update interested family and friends on developments related to the illness and your loved one. The loved one can create a profile and add you as an author or you can create the profile yourself. On the site, you can provide a welcome page with a summary, updates, pictures, and even journal entries. Additionally, you can create a support planner in which you ask others to help with important tasks. http://www.caringbridge.org
- Medicare has a page dedicated to caregivers, filled with resources such as articles and lists of local resources available for the family. http://www.medicare.gov/caregivers
- Caregiver Action Network provides support for people who are caregivers for chronically ill individuals. Additionally, they provide specific support to families dealing with rare illnesses and the special considerations involved when caretaking for someone with a rare disease. http://www.rarecaregivers.org
- National Alliance for Caregiving is a website dedicated to providing support to caregivers. It is “For, About, and By Caregivers”. They also have a national magazine that reaches those who need consistent resources and support for caregiving issues. http://www.caregiver.com
- American Psychological Association is the ethical umbrella for Licensed Clinical Psychologists across the country. They have many resources to help in this time of need, including relevant publications as well as a list of licensed professionals in your state. http://www.apa.org
American Psychological Association (2009). What do family caregivers do? Retrieved January
1, 2014 from http://www.apa.org.
American Psychological Association (2012). How to help a friend or a loved one
suffering from a chronic illness. Retrieved May 3, 2012 from http://www.apa.org
Caregiver Action Network (2014). Caregiving information you can use right now.
Retrieved March 1st, 2014 from http://www.rarecaregivers.org.
HelpGuide.Org (2012). Caregiving support and help. Retrieved February 1st, 2014 from
Kubler-Ross, E. (2003). On death and dying: What the dying have to teach doctors, nurses,
clergy, and their own families. New York, NY: Scribner.
Nazon, M. (2013, April 20th). Dealing with emotions in chronic illness. Presentation conducted
at the 8th Annual Convention for Adults with Pituitary Disorders. MAGIC Foundation.