Tuesday, November 23, 2010

Holiday Help for Family Caregivers ...

Family caregivers spend endless time and energy caring for loved ones who are ill, disabled or frail and are often unable to participate in the usual traditions and activities of the season. Thoughtful assistance and gifts from those who love them can make all the difference to the quality of their holidays.

Here are some ways you can help the family caregivers in your life:

1. Ask what's needed or wanted before you shop, bake or make plans. Every caregiving situation is different and the needs of each caregiver are different as well. I remember receiving several lovely packets of bath salts and oils one Christmas while caring for my husband. They would have been wonderful to use had we had a bathtub!

2. Consider that while the gift of an afternoon's concert, play or special event might be much appreciated, it needs to come with the second gift of someone qualified to stay with the care recipient so the ticket can be used.

3. Gifts of food can bring real relief from the monotony and fatigue of cooking, but remember to ask, first, regarding personal preferences, allergies and dietary restrictions. We frequently passed on to others casseroles whose salt content was too high for my husband to eat. (Including a copy of the recipe can help to reduce anxiety in this regard.)

4. Try to avoid gifts that need assembling, that are outside the caregiver's previous experience or that are very complicated (technological devices with multiple functions) unless the caregiver has asked for it, specifically. (Impaired cognitive function is a hallmark of caregiver stress and most caregivers find it hard enough to remember where they put their keys , let alone how a new device works.)

5. Avoid giving anything that will need special care - this includes anything from a delicate plant to "a nice pet to keep you company". Now is not the time to inadvertently add to the caregiver's burden.

6. Consider safety in all gift giving. eg No glass figurines, knife sets, or barbecue lighters for caregivers of children with aggressive or impulsive behavioural disorders, unless there is safe storage space that is out of sight.

7. Consult with the caregiver before buying gifts of perfume or other scented materials that might aggravate allergies or respiratory conditions. (Their own or that of the care recipient.)

8. Consider gifts of your time and presence - "gift certificates" for mowing the lawn or shovelling the walks on a regular basis or for sitting with the care recipient so the caregiver can get out for errands or respite, or for short biweekly or monthly visits for a chat and support. (But be sure that you can follow through with whatever you promise.)

9. Offer to buy and put up the Christmas tree or other decorations - but be sensitive to the loss involved in changing a holiday tradition. Check at each stage in the process to see if that step is something that the caregiver would rather do alone. Perhaps you could buy and set up the tree and lights and then leave the decorating to them or perhaps they will want you to do the whole job. Just keep asking.

10. Offer transportation to shopping malls or to doctors appointments. Return library books or DVD's.

11. Offer to do the caregiver's holiday shopping or wrapping or to help them to navigate shopping on the internet.

12. Talk about plans for holiday dinners well in advance. But be prepared to change plans at the last moment if the care recipient is ill or the caregiver is too tired. Ask what will make life easiest for the caregiver - to have you make and deliver a meal on plates then leave, to eat altogether at your house or theirs, to have a pot luck or share the cooking, to go out for a meal?

13. If you're "going home for Christmas", ask if it would be easier if you stayed in a nearby hotel.

These are just a few possibilities. Please add your own ideas to the list. The important thing is to be thoughtful, empathic and accepting in the face of the caregiver's stress, indecisiveness and desire to hold on to the things that have meant the most to them.

Thursday, November 11, 2010

Remembering ...

Every year on November 11th, sometimes in clear brilliant sunshine, sometimes in blustering winds and sheets of rain, we gather around cenotaphs across the country to honour and show our gratitude to those who have given their lives or their health for our safety. Those who have come home injured, whether with physical wounds or operational stress injuries, have come back with their lives changed forever and their altered lives alter the lives of all who love them, particularly their family caregivers/ carepartners.

These family caregivers are as affected by their loved ones' injuries as their loved ones are themselves. No area of their lives is untouched. And yet, all too frequently, family caregivers are the unsung heros of our wars and peacekeeping missions. They are the glue holding families together during long or repeated deployments and once their partners are injured, they take on a myriad of additional responsibilities as nurses, rehab specialists, psychotherapists, cheerleaders and advocates. It is through their support and daily efforts that the members of our military have as much as they do, in order to recover.

And yet, this support for recovery comes at a cost. Energy and resources that would otherwise have been spent nurturing the growth and development of family life must be diverted to recovery from injuries and, worse, to fighting a bureaucracy that seems to have little access to common sense, empathy or compassion. Already overwhelmed by the enormity of the task of recovery and adjustment, veterans and their family carepartners can face an unwieldy, inefficient and seemingly uncaring response to even their simplest requests.

This week, however, a wide ranging group of deeply caring Canadians, led by the vision and efforts of people like Allan De Genova, took a giant step toward supporting our wounded veterans and other first responders and their families with the opening of Honour House in New Westminster, BC.

Set on a quiet street not far from the New Westminster Armoury and the beautiful Japanese Gardens where I played as a child, Honour House is a fully accessible residence that will temporarily house up to ten families who must relocate to Greater Vancouver for a loved one's treatment and rehabilitation and who, in the past, would have endured long separations at a time when they needed each other most.

The ability to stay together as a family unit during long months of recovery will make all the difference to the quality of that recovery for the whole family. Hopefully Honour House is just the first of at least ten provincial houses that will support these families who have given so much for us. And, hopefully, the federal government will come to understand the importance of such support and add federal funding to the mix for the houses yet to come.

Monday, November 1, 2010

Cumulative Grief in Healthcare Professionals ...

Earlier in the fall, I mentioned that I believe there is a missing, or at least underemphasized, component in our consideration of compassion fatigue in health care professionals. That component is cumulative grief.

Most of us are familiar with the Baranowsky-Gentry model of compassion fatigue which states that primary traumatic stress (the trauma that happens to us directly or that we witness directly), secondary traumatic stress (the trauma we experience indirectly through knowing about trauma in others' lives) and burnout (the chronic stress of perceived workplace demands exceeding perceived resources) converge in the life of the helper to cause compassion fatigue, a diminished capacity for or interest in being empathic with another's suffering.

As I have worked with family caregivers, I have modified this model a little to say that primary traumatic stress and secondary traumatic stress, in the presence of burnout and Chronic Sorrow, can lead to compassion fatigue. I have found this change to be helpful in emphasizing that CF is primarily a trauma issue that occurs in conjunction with burnout - not a form of burnout, itself, - and that the grief of Chronic Sorrow, extending from a loved one's diagnosis until his or her death, may also contribute to family caregivers' vulnerability to CF.

Once I had adjusted my CF thinking to incorporate the Chronic Sorrow of family caregivers, I began to wonder about the cumulative grief of healthcare professionals.

Grief is our normal, hardwired, healing response to loss and it will generally heal itself if we stay out of the way and support rather than blocking the natural process. But what if we work in an environment where loss is the norm? What if we form caring attachments to patients and families over and over again only to have the patients die and the families to move on with their lives? What if we work in environments that do not make time and space available to process our own grief or, worse, those that ridicule and shame such "weakness"?

There is a significant and growing literature base, still at the descriptive stage for the most part, focused on cumulative grief, which is defined as:

... our emotional response to the occurrence of multiple deaths,
either at the same time or in serial fashion,
without sufficient time or opportunity to
adequately grieve for each person who has died.

P. Marino (1998) Paraphrased

Phenomenological studies on cumulative grief have emerged from the fields of palliative care, oncology, critical care, paediatrics, gerontology and advanced nursing practice, particularly since the mid-1990's. There are also several professional magazine articles offering advice on how to cope with this accumulated grief, testifying to the importance of the topic at the grass roots level of practice. Last week's episode of CBC's White Coat, Black Art called, "When Your Life is Circling the Drain", reflects the impact of multiple deaths on young medical residents.

Not all work-related losses are considered traumatic, especially when healthcare practitioners have been able to provide "a good death" for both the patient and the family. Thus cumulative grief doesn't fit easily into our currently-held understanding of CF. However, these losses are real and can have a significant impact upon us, especially if left unattended. Do they actually contribute to increased vulnerability to CF? We don't know that yet but it is a rich area for further research.

In the meantime, I will continue to address cumulative grief within the context of CF in my healthcare workshops as it almost invariably and spontaneously comes to the fore.

Photo by BigStock Photos