Caregiver Magificence

I'll be speaking next week on this very topic.
"Mental Health Implications for Caregivers: Ageing, Serious Illness, &
Legal Considerations"
co-sponsored by the NGO Committee on Ageing

This program focuses on the importance of care giving and the stresses and
impact on mental health. Panelists will share specific challenges they
faced in caring for loved ones with serious illness including end of life
decisions. Mental health and legal issues will be presented. Strategies
will be discussed that may be useful for other care givers in making this
challenging time easier for themselves and, ultimately, those around them.
Thursday, September 10, 2009
2:30 PM - 4:30 PM

The Church Center
777 United Nations Plaza (44th Street between 1st & 2nd Avenue)
11th Floor - Hardin Room

Caregiver Magnificence
by Christine Sotmary M.S.

Family Caregivers are usually unremunerated, recruited by default, and asked to give up much of their previous life.

Tasks are but a small part of those sacrifices that these Caregivers are asked to organize. They accompany their loved ones to their medical appointments and wrestle with the health care bureaucracies such as insurance companies. They must also be sure that their loved ones follow prescribed medical treatment plans: they must run to the pharmacy to get prescriptions filled, make sure their loved ones take their meds, follow lifestyle prescriptions for eating and exercising, and so much more. When conditions worsen there is a variety of medical procedures that need to be learned, like wound dressing, giving injections, and then of course Caregivers may be called upon to see to their charge’s personal hygiene, which we all know can get quite involved.

If siblings, sons or daughters live some distance from their ailing loved one they have to find or hire someone else to do all this and worry about whether it is being done correctly or at all.

The progression of disease adds to the unpredictability and instability of these relationships. Personality clashes with a loved one may arise as a patient becomes more enfeebled, and behavioral changes can make even simple conversations difficult, frustrating and stressful.

Until someone is called on to be a Caregiver, there is no way to know how they will handle the situation. Often there are many other responsibilities the Caregiver is already juggling; this will have a telling impact on how well a “rookie” Caregiver takes to his or her new responsibilities.

Once the task is taken on, over time full time caregivers share a surprising similarity in their experience. These similarities have been referred to as the Caregiver's Syndrome. One notable shared experience is that of excess devotion. Such excessive commitment often causes the caregiver to put their own needs, plans for the future, emotions, and even health to the side, and the idea of taking even the smallest break is out of the question.

Excessive devotion often leaves the caregiver zapped of the energy and will to call on friends or family members and take a “time out”. Much-needed stress reducing activities like preparing favorite recipes, exercising, reading, etc., are also neglected. It’s an all-too familiar scenario where life takes a back seat to duty, where an outside life falls away and the world shrinks to but a few rooms in the home. The entire identity of the Family Caregiver seems to dissolve into caring for the loved one. They often ignore urgings to come out of their cocoon, feeling guilty and worried that they are shirking their duty. As familiar as these behavioral patterns are, it is just recently that we have begun to identify them as an aspect of the Caregiver’s Syndrome.

There are several possible ways to explain why it is so difficult for Family Caregivers to take time for themselves. Time away might mean time to think and be introspective, and that may be intimidating. When one's whole identity is wrapped up in caring for another, stepping away in order to reconnect with their sense of an individual self may be difficult, indeed. Fully recognizing what one has given up may be crushing and lead to great sadness and/or fear for the future, especially when the inevitability of loss is confronted. In fact, brain chemistry is changed by the experience of being needed so deeply and the Caregiver may suffer withdrawal symptoms when that intense giving is suspended, even for a few hours.

In time, the Family Caregiver who remains in this cocoon becomes starved for affection, for connection with others, for relief from their burdensome duties. As the stress wears on them, their ability as a Caregiver becomes compromised and they no longer feel positive about their life. Many vent their frustration by showing exasperation and becoming impatient, even abusive towards the one person closest to them, their loved one, the one who trusted them to love and protect them. For the Caregiver, there may seem to be no way out.

Having been a caregiver for my partner for 8 years as he journeyed along the path of Alzheimer's Disease, I can assure you that we need to give to the Caregivers, too. I did find many ways to take care of myself but I also experienced the pitfalls common to almost all Family Caregivers. I rejected many opportunities to take a break from my caregiving, not trusting surrogates to do the job with the same devotion that I had invested. I wasn’t even aware that I needed any help. In retrospect I can see clearly now that I too had been experiencing the Caregiver's Syndrome.

We desperately need to create an infrastructure of resources that Family Caregivers can access. Many other people faced with crises, such as veterans or cancer survivors, have coping and healing resources to avail themselves of, and now the time to heed the S.O.S. of Family Caregivers is at hand.

Imagine a world where Family Caregivers put themselves on the front line of the Healthcare Crisis! They have first hand knowledge of the failures of the Healthcare system, and have to go through their own crises when that same system creates obstacles in the way of getting or paying for services. Being a Caregiver makes navigating these rough waters a challenge but by using their experience and their awareness that a change must come, their voice gains legitimacy and the imperative to be heeded. With their activism, we would come to see a world where Family Caregivers are embraced as heroes by their communities.

Caregivers receiving acknowledgment and appreciation from neighbors and family members for doing this wonderful work would take the shape of gifts, prepared meals, time out for haircuts, help with finances or trips to the movies, transportation to doctors, shared responsibility, a meaningful antidote to the isolation that now exists for individual Caregivers. These volunteer community services can be coordinated by local hospitals, senior centers, nursing homes or faith-based institutions. There are even former Caregivers who are looking for ways to give back. One positive way would be to become a Caregiver Advocate. In time, Caregiver Advocates could become as common as Patient Advocates now are.

Right from the early days of their caregiving, a Family Caregiver would learn that they are not alone and that they need to share their duties with others, and that it isn't healthy for them to do this alone. There can be Caregiver centers created as places to come together, support each other and get quality information for making life easier. Meditation classes, singing workshops, or group walks in nature have all been proven to reduce stress and that would then give Caregivers the energy to continue to do their tasks in a loving, gentle manner.

As the awareness of the need to support Family Caregivers grows, so the likelihood grows that we, as individuals, institutions, organizations, and, ultimately our leaders, will step up to the plate and create an infrastructure of support that will greatly enhance the experience and the lives of both these magnificent Caregivers and their loved ones.

For more information:
Unplug and Get Your Groove Back blog
Coaching for Caregivers website
Acupuncture and Nutrition website
Caregiver Memoir