Hi my name is Elizabeth Dickson and welcome to the caregiver space. This space is for caregivers of patients with EHE. Since EHE is relatively new to the medical scene, it is hard to predict outcomes of patients care and requirements.
I have been a caregiver to my spouse who has EHE, for almost 14 years now. I have seen his cancer’s name change several times. At the time he was one of only a handful actually diagnosed and followed. We were told his prognosis was fatal, but they were unable to determine an exact time. The medical community literally was at a loss of how to treat him, let alone determine the stage of the cancer. He is currently the only one on record who has also lost his vision from this cancer. All of this was very sudden for us, within a matter of a week he was blind, unable to function, and sentenced to death. I was young, in college and had just started my career. I was not prepared for this, let alone him. Being thrown into a different life where I am the sole person responsible for daily functioning and transporting was certainly overwhelming, but I had no other choice. I was young, afraid, alone, and had no guidance as to what to expect or even do.
At the time, caregiving was still in the background as far as health concerns and psychological aspects. Most medical professionals didn't see it as anything to be concerned with. Well, times have changed, there has been numerous research studies concerning the actual physical and psychological repercussions of caregiving. Studies have shown caregivers, especially women, are more prone to heart attacks, high blood pressure, diabetes, and severe depression than their non-caregiving counterparts. Studies have also shown the health and well being of the caregiver can directly impact the immune functions of the cancer patient they care for.
As caregivers we tend not to think of our own health or psychological well-being, because we carry with us “caregivers guilt”; a real tangible feeling that our problems cannot be as bad as the person we are caring for. The good news is that many oncology clinics are now implementing treatments for caregivers and recognize the importance of the caregivers’ health along with their patients’ health. Around the world caregiving for family members is steadily rising, and different countries are now trying to implant programs and resources for caregivers.
Being of the EHE community, we have to recognize that our patients do not “fit in a box”, and more than ever we must tend to our own health to be able to continue the care of our loved ones. The focus of this space is for you to be able to find resources to help you cope with the responsibilities presented before you. Resources for health and well-being, resources on current and past research, and resources through other EHE caregivers. We are here to be resources for each other, to help one another learn.
I work for Imerman Angels which is a non-profit that connects cancer patients and cancer caregivers with each other, for support through direct one on one contact. I am not a counselor, but a fellow caregiver with experience in our field and a shoulder to lean on. My background is in Psychoneuroimmunology and clinical psychology. As always I am always available through Imerman Angels to talk with one on one, if you prefer one-on-one contact. All you need to do is contact them and ask for your EHE liaison or request my name.
There is also a link to the EHE Caregivers Facebook group where you have the opportunity to talk directly with other caregivers, as patients and family are not permitted. This is your group to talk freely about situations or circumstances that affect you. Sometimes we cannot talk with our patients about our feelings or frustrations. This group is for you to be able to freely express your thoughts, opinions, or complaints with others who might have the same feelings. The hardest part is to understand that we are all human and we can’t be happy all the time taking care of someone. Typically we deal with the frustrations of our patients, we are the ones the anger and frustrations are directed too, not intentionally, but out of frustration. We need an outlet as well and that’s the aim for this space and group. The ultimate goal is to assist you so you can provide the care you wish to give.
The Caregiver Space is a wonderful site with tons of resources and forums for whatever situation you are experiencing. There are other links to research, databases, and even health sites you can find on this site. It is a must for finding resources for the lay caregiver.
Imerman Angels is for anyone whether a cancer patient or a caregiver to find direct support through other patients/caregivers. Call or email to receive one one one support.
A great website to find research and current and past national reports (USA) and links to other countries reports. This is the USA’s official registry with The International Alliance of Carer Organization.
This organization provides peer support, education, and resources for family caregivers
Looking for an organization in your country other than the USA? This is the worldwide alliance of caregiving conglomerate. Just click on the IACO Members list to find out if your country has an organization. This is the international database for caregiving around the globe.