Informal Caregivers

March 10, 2010

What/Who are informal caregivers? Informal caregivers are family or friends who deliver care to cancer survivors, both short- and long-term. Informal caregivers can come in many capacities and for many reasons, but they all have one thing in common. Informal care givers are not properly trained to deliver the care they are asked/required to deliver. For the purposes of this discussion, I am not describing informal caregivers who are in fact paid for their service. Caregivers can be called on to perform relatively benign tasks, such as assisting a survivor with daily activities associated with living but made more difficult by cancer or treatment (e.g., using the bathroom, showering). However, caregivers are also often required to perform more risk-associated activities, such as monitoring treatment side effects, managing pain with medicine and therapy, managing nausea or fatigue, administering medicine, deciding whether to call the doctor or go to the hospital, or even making decisions regarding chemotherapeutic or adjuvant agents. In the long-term, informal caregivers might be asked to assist with physical-therapy-like activities or the might serve as a counselor, helping a survivor to deal with the mental health issues resulting from cancer and treatment.

The first and most obvious problem is that many caregivers are not trained to do the things they often do, and this could lead to dangerous mishaps. The second most obvious problem stems from something survivorship advocates discuss regularly. Survivorship is an experience which extends from the survivor and touches many other people. The survivorship experience certainly touches the family and friends who care for the person who was diagnosed. The person who was diagnosed might encounter some form of the fatigue, emotional stress, or mental health concerns we discuss so often, but consider that the caregiver, a person who is so close the diagnosed person, might encounter some of those very same issues. Now consider the dangers inherent in this caregiver/ survivor relationship. At the very least caregivers have a burden on them that might make their job as caregiver more difficult? The first thing I think worry about in terms of long-term care is: How is a caregiver expected to help a survivor deal with the emotional fallout from cancer if the caregiver is experiencing equally intense feelings?

Suggestions I want to be absolutely crystal clear. The following are my suggestions to deal with this systemic problem on an individual level. These suggestions stem from observing survivors and caregivers. I am not an expert, and I am not a survivor. Moreover, I have not been a caregiver. So with that in mind, consider these three brief suggestions:

ACKNOWLEDGE THIS IS HARD Caregivers and survivors can acknowledge that both short–term and long-term survivorship are difficult on both survivors and caregivers. Albeit for very different reasons, caregivers too might be fatigued, run-down, or emotionally drained. The first step to accessing help for this is acknowledging it exists. I have met many caregivers who have confided in me something like “I don’t feel right about complaining.” In my opinion, this is the entirely wrong attitude to have.  The most unselfish reason is that a fatigued or emotionally drained caregiver is not a caregiver who is delivering the best care possible. Acknowledging the situation, at whatever stage it is in, may allow for both the survivor and the caregiver to achieve a better quality of life.

ASK FOR TRAINING It is ok to ask for training. So, is a physician going to teach a caregiver how to choose which medicines to give when and when to make changes in dosage? Absolutely not. That is the doctor’s job. Likewise  a psychologist will not teach a caregiver to deliver cognitive therapy to deal with a survivor’s anxiety. That is the psychologist’s job. But the physician and the psychologist will be more than happy to teach caregivers to mitigate some of the problems before they become full-blown and require professional attention. The physician should be happy to sit down and explain the drug cocktail, the possible side effects, and offer at-home solutions to alleviate some anticipated problems. The psychologist can offer coping techniques and a deeper understanding of the anxiety, depression, or other survivorship-related mental health effect. In any event, it is normal and ok to ask professionals (e.g., physicians, nurses, therapists) for advice or even simple training. This can apply to the challenges faced in both acute and long-term survivorship.

TAKE BREAKS Caregivers can and should take breaks. Cancer is a lifelong thing. I’ve heard this from so many survivors, so I couldn’t even begin to estimate how many. Caregivers (the family and friends charged with taking care of cancer survivors in the acute and long-term phases of cancer survivorship) may also deal with cancer for a lifetime – yet in a very different way. It seems to me that caregiver burnout is something with which every caregiver should be concerned in both acute and long-term situations. Caregivers – like survivors – like everyone else walking this earth are only human, and as such no one, not survivors, caregivers, nor health professionals, should ask caregivers to be anything more than just that – human.

This blog post was inspired by the following article (senior author Dr. Julia Rowland, Director of the Office of Cancer Survivorship at the National Cancer Institute) from the journal, Psycho-Oncology:

van Ryn M, Sanders S, Kahn K, van Houtven C, Griffin JM, Martin M, Atienza AA,

Phelan S, Finstad D, Rowland J. Objective burden, resources, and other stressors

among informal cancer caregivers: a hidden quality issue? Psychooncology. 2010

Mar 4. [Epub ahead of print] PubMed PMID: 20201115.

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