When I decided to start a chronic illness support group, I consulted with a number of people for advice. One of the people was a former government colleague/friend who had been treated for myeloma. He participated in three different support groups and gave me a number of tips about the activities and discussions of each group and how they helped the members.
My friend’s wife also participated as a member in some group meetings in her capacity as a caregiver. Even though caregivers do not have the chronic illness, it is hard work taking care of the patients when they are ill, being their extra sets of ears and eyes, and being their advocates. I realized this must take an emotional toll on them over the long haul of the patient’s chronic illness, and I concluded caregivers need support just as much as the patients. So that caused me to wonder exactly who is it that takes care of the support giver?
I searched the term caregiver on the American Heart Association’s webpage. There is an article entitled “Caregivers must safeguard their own health to help others.” This brought to mind a very basic concept that is familiar to many of us who have flown on airplanes. During the safety presentation, the flight attendant covers the use of oxygen mask in an emergency. He or she always tells passengers that when the masks drops down, we need to make sure that we put our own mask on first before helping others with their masks. So it is the same concept – just as you won’t be able to help those under your care if your air is running out, your assistance to those with chronic illnesses will be compromised if your own energy and optimism is running out.
There was a point covered in the article that never dawned on me: sometimes the pressure on the caregiver initially multiplies when the patient gets a medical boost through technology. The example given was that of a heart patient who is provided a left assistive ventricle device. His or her quality of life will likely have a dramatic improvement. So it seemed to me that the impact on the caregiver should be improved as well and that they should be basking in the new found boost to the heart patient.
But think about it. This is a new device that the caregiver has to help safeguard and monitor, and this can add to the stress that the caregiver already experiences. And although it isn’t referred to in the article, there may be in some patients an odd emotional response to having a sudden surge in health. From my own experience, when I start to see improvement, my anxiety may ratchet up a bit. Why does this occur? I think it is because the life of a chronic illness patient is filled with a constant roller coaster ride through peaks and valleys.
So when the coaster once again reaches a peak, it can be a very exhilarating event. But if you have a memory that combines with the tendency to be anxious, you’re just waiting for that drop to the valley of despair. Your caregiver may sense this and have to deal with the very real apprehension that you are beginning to feel. In other words, they may have their own anxiety about overseeing a patient’s new device or treatment and at the same time trying to keep the patient’s anxiety level under control. This has to be wearing and intimidating for the caregiver.
These are just the psychological tolls that can be exacted on the caregiver. What about the physical toll? The Federal Government has a website on caregiver support. It is found at: usa.gov/disability-caregiver. It provides a list of other government websites and resources designed to support caregivers, to include the Department of Veterans Affairs; various agencies of the National Institutes of Health; the Consumer Financial Protection Bureau; and the Office of Women’s Health of the Department of Health and Human Services. There is also a link to a site that will provide information on where to find support at the state and local levels.
This is truly a website of great value because it leads you to an endless array of websites where you can find answers to questions, tips, resources, you name it. I found myself just clicking on webpages that took me to other webpages that took me to even more webpages. I probably would still be clicking on sites if I didn’t stop to write this post.
The Office of Women’s Health webpage intrigued me because it showed me that caregiving may create a vicious circle. What do I mean by that? The website for the Merriam Webster dictionary defines a vicious circle as: a chain of events in which the response to one difficulty creates a new problem that aggravates the original difficulty. According to a factsheet found on the webpage for the Office of Women’s health, here are two of the vicious circle risks:
To avoid falling into the vicious circle of chronic illness, many of the webpages provided tips that reminded me that the symptoms and remedies for caregiver burnout resemble those for patients of chronic illness. The Office of Women’s Health website has a fact sheet entitled “Caregiver Stress”. It presents the following as symptoms of stress, many of which I experience with my own chronic illness:
The same fact sheet provides guidance on how to stay on top of your health and hopefully out of the category of “chronic illness patient”:
In my research, I also learned that the website for the American Association of Retired Persons (AARP) has a wealth of information about caregiving. One very helpful article was entitled “Caregiver support groups offer valuable help”. This article offered a number of tips to help caregivers find support groups that meet their needs. There was a very important fact stated up front that I think each caregiver needs to hear: “If caring for a loved one leaves you frustrated and angry at times, that's normal — but you don't have to go it alone.” So caregivers please take comfort in the fact that it is okay to feel angry and frustrated when you are a caregiver.
I think people tend to feel guilty if they have this reaction, but we need to face the fact that caregivers are (1) human, (2) under a lot of physical and emotional stress, and are facing a reality that the loved one they are caring for may never get better. If a caregiver seeks the support of a group, he or she will find that many other people have the exact same feelings. So this will validate not only that you are normal but that you are not alone. As is the case with our chronic illness support group, you can vent frustrations and gain insights from your fellow members.
As I found when we set up our chronic illness support group, there are a variety of groups out there –some target a specific illness while some are more general; some have facilitators while some are led by peers; some are in-person while some are on-line; etc. This tells me that there is no right or wrong group – only one that fits best for you. There was one tip that matched a very important rule observed by our group – confidentiality is key, and the members need to know that what they say in the room stays in the room.
The AARP had a really great tip that had never occurred to me.
Melanie discovered that she had heart failure in 2013. Since that time, she has been learning how to live with the condition, and how to achieve balance and personal growth.