Monday, October 31, 2011

5 Things Family Caregivers Wish You knew ...

The joys of family caregiving - yes, there are some joyful times - can be tempered by a lack of understanding within the caregiver's family or support community. No one can completely understand another's journey, particularly when it is as complex and all consuming as family caregiving can be, but what a difference it can make to a caregiver's day when he or she realizes that someone "gets" at least a part of their experience.

Here are a few of the things caregivers at Compassion Fatigue and Chronic Sorrow workshops say they wish others knew:

1. We're not all the same. Family caregiving is a highly individual journey. Caring for a chronically ill or disabled child is vastly different from caring for one's dying spouse and that experience is different again from caring for an aging parent or friend.

There are also differences in the experience of caregivers between people and across the length of the caregiving journey, depending upon their personal history of trauma and loss, their financial status, the quality of the caregiving relationship, the extent of the support system, co-existing stressors, access to appropriate care and respite, and many other factors.

To assume that we know the day-to-day experience and needs of "family caregivers" is quite disrespectful. It is not until we have heard an individual caregiver's story that we can begin to understand, empathize and respond appropriately to their needs.

2. We won't get over it. "Aren't you over it yet? It's been 7 years ..." How many long term caregivers have heard these words, or variations on the theme, over and over again across the years?

The truth is that many family caregivers (and their care recipients) experience chronic sorrow (CS), the intense, recurring and continuing grief that can affect people with permanent impairments and those who love them. This normal grief response arises from the aching discrepancy between how life is and how it could or should have been. It is not so much an anticipatory grief, though that is certainly present, as it is an intense sorrow over current losses, large and small, that accompany the illness or loss of function.

CS lasts from the time of diagnosis until the death of the person with the impairment. Family caregivers don't get over it and and it doesn't diminish over time. Because the core loss lasts a lifetime, so does the grief. The good news, however, is that you can learn to anticipate vulnerable times and to live more comfortably with the grief.

Research shows that chronic sorrow can be mistaken for depression, sometimes causing caregivers to have antidepressants prescribed when what is really needed is education, companioning and/or therapy. CS symptoms differ from those of clinical depression in that the caregivers are able to feel and express a full range of emotion, are usually highly functional and, perhaps even more than the non-caregiving population, can still "feel the joy and see beauty of a sunset".

3. Life is not always so bad. Family caregiving does have agonizing times but it is not always a negative experience. In fact, living close to the edge of life with someone you love can, at times, provide a new perspective, a deep sense of gratitude for the ordinary and an exquisite awareness of all that is good about being alive.

It is as important for supporters to recognize that there are good times, as it is to acknowledge that there are bad ones. Rather than making assumptions about the caregiver's emotional state on a given day, it is important to ask and then listen to the response.

I'll never forget waking on a beautiful spring morning, finding that both my husband and I had slept through the night and realizing that, after a medication change, he was no longer in pain - I was thrilled! A social worker came to see us later that morning and chose to focus intently on all that had been bad about the previous week. I was not thrilled! For the first time in ages, I had wakened feeling truly happy and that happiness was what I needed to have reflected back to me, not the anguish of the previous week. If only she'd asked rather than assuming ...

4. We sometimes choose not to take care of ourselves. Many family caregivers actively choose to "live at risk" for a period of time in order to share life with an ill or disabled loved one. These caregivers have no interest in respite or attending caregiver-oriented programs because they have decided that they want to spend whatever time remains with the person they love.

Caregivers choosing to live at risk do not benefit from continuing messages about how they are not doing what good caregivers must do in order to take care of themselves. Rather, they are more likely to feel supported when others listen and hear their goals and find ways to help them reach them. If you can offer some self care ideas that will fit within the context of their goals, so much the better, but constantly nagging people to "take care of themselves" is far more likely to have the opposite effect.

5. We sometimes have trouble asking for help. For any number of reasons, be they societal norms around self-sufficiency, family programming, belief that the help is not available or dependable, fear of being dependent or beholden, fear of burning out one's helpers, or difficulty identifying needs, family caregivers may have trouble asking for help.

In such cases, supporters can ease the difficulty by regularly offering specific, dependable help - is there something specific I can do for you today? May I take your library books back onFriday morning? Which day may I mow your lawn? May I pick up your groceries every Tuesday? May I drive you to the dialysis centre every other morning? May I make dinner for you next Wednesday night? May I drive you to church every other Sunday? May I wrap your Christmas presents for you? Do you need help with your income tax? May I develop and update a schedule of friends for respite care so you can get out on Monday mornings?

There are probably many other things family caregivers would like their supporters to know. If you can think of any, please feel free to add them.

Photo by BigStock Photos

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