Saturday, January 25, 2014

Life After Caregiving: Waiting to Exhale

This is my first post in months and therefore it's fitting that it's a message to fellow former caregivers as well as those who currently find themselves in that role.

If you have ever been the full-time family caregiver for a person with dementia, Alzheimer's Disease  or another illness that requires almost round the clock attention, you understand the demands that role places on you both emotionally and physically.  In fact, unless you have a large support network, your life takes a backseat to the person for whom you are caring.  Whether your life prior to being a caregiver was that of a social butterfly or a quiet homebody, once you take on the role of a family caregiver, your life is primarily focused on meeting the physical and emotional needs of another person. 

In a 2009 article "Family Caregiver of People With Dementia" for the National Institutes of Health, Dialogues in Clinical Neuroscience*  the authors state: "Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship."

In a July, 2013 article for FactTank it was noted: "Caregiving encompasses everything from buying someone groceries and managing their finances to helping them with bathing, dressing and other tasks of daily life. But a 2012 survey by the AARP Public Policy Institute and the United Hospital Fund found that in recent years, the role of family caregivers 'has dramatically expanded to include performing medical/nursing tasks of the kind and complexity once only provided in hospitals.'

In fact, nearly half (46%) of family caregivers reported performing such medical/nursing tasks, three-quarters of those said their tasks included giving injections, administering intravenous fluids or otherwise managing medications."

People are starting to "get it".  Caregiving is overwhelming.  Some people are tired of hearing that but here is what they also need to hear. 

 Often when family caregivers have a respite from their responsibilities or are in the process of resuming their lives after their loved one has died, what many of them want and need most is a little "me" time, a little downtime from living a life that revolves around another person's likes, dislikes and needs.  Too often the role of the family caregiver is equated to that of the paid health aide or professional caregiver.  That is a mistake.  The emotional and personal investments are very different.  

Family caregivers often put careers,  social lives and even romance on the back burner and instead willingly live a life of catering to the lifestyle of the person for whom they were caring.  What family caregivers crave most when their caregiving duties are done is simply to "exhale".  Yes, there are some former caregivers who jump right back into the old routines.  However, after a long stretch of a life as the moon revolving around the sun, most former caregivers crave a life free of doctors appointments, schedules,  and entertaining their loved one's friends.  To some people that may sound selfish.  To fellow former caregivers, it's called reclaiming your autonymy and identity. 

Brodaty and Donkin cite in their study: "Caregivers face many obstacles as they balance caregiving with other demands, including child rearing, career, and relationships. They are at increased risk for burden, stress, depression, and a variety of other health complications.26 The effects on caregivers are diverse and complex, and there are many other factors that may exacerbate or ameliorate how caregivers react and feel as a result of their role. Numerous studies report that caring for a person with dementia is more stressful than caring for a person with a physical disability.25,27,28 "

In the months or years following the conclusion of your caregiving responsibilities, well meaning friends may not understand why you aren't feeling particularly social and chalk up your responses to grief or depression.  Some may even view your post caregiving behavior as selfish, rude or a personal rejection. Many will say that "you're not acting like your old self".  The truth is after years as a caregiving for a chronically ill person, you're not your old self.  All you can do is explain, you can't make others understand.   You also must establish boundaries.

As Jane Collingwood writes in her article, The Importance of Personal Boundaries, "boundaries are a measure of self-esteem.  She advises, "Remember the importance of saying 'no' to unreasonable requests, and reasonable ones from time to time, if they conflict with your plans. Challenge all insults that are masked as humor. As you learn to extend your boundaries, try to adapt your behavior so you are not stepping over other people’s. This may take an extra effort because our habits can go unnoticed, but aim to stop making digs at people, or using humor as a weapon to put others down.

Bear in mind that those close to you may not be fully supportive in your attempts to change. They have been used to the old ways of doing things. As with any life change, extending boundaries has a price, and this may be losing acquaintances along the way. Of course, those relationships that are worth having will survive, and grow stronger."

There is life after being a family caregiver.  It will be different and it will take time and being a little selfish.

* Henry Brodaty, MD; DSc; FRACP; FRANZCP*
Henry Brodaty, Primary Dementia Collaborative Research Centre and School of Psychiatry, University of New South Wales, Sydney, Australia; Academic Department for Old Aged Psychiatry, Prince of Wales Hospital, Sydney, Australia;
Marika Donkin, BA-Psychology (Rons); Grad'DipProf Ethics

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