Caregiver Burnout

One of the other main causes of loss of independence is caregiver burnout. Most people are in fact predominantly in the hands of their spouses, daughters or daughters-in-law as caregivers. Research has shown that the most significant factor to stay out of a nursing home is simply to have 3 or more engaged daughters and / or daughters in law (Presidents Council on Bioethics, 2005). But for most of us this isn't an option and caregiver burnout is a big consideration. So what is it? Our friends at WebMD define it as:

" Caregiver burnout is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude -- from positive and caring to negative and unconcerned. Burnout can occur when caregivers don't get the help they need, or if they try to do more than they are able -- either physically or financially. Caregivers who are "burned out" may experience fatigue, stress, anxiety, and depression. Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones."

So what would lead to this situation . . .

• Emergency Conditions - in many cases the role of caregiver is thrust upon an individual without any warning and without any respite - there is no time to grive a change in the state of the relationship, many times one has to shoulder new responsibilities in addition to the caregiving role like finances - it can be overwhelming
• Saturation or Lack of bandwidth - even if the role of caregiver is more gradual there might just not be enough time in the day to abosrb all the new tasks . . . women over the last 25 years have increasingly become financial breadwinners (something to be lauded) which leaves them with less time - but they still are expected, many times, to fulfill the traditional role fo caregiver
• Frustration at diminishing progress - often, the individual being cared for does not make significant progress despite the best efforts of the caregiver

Despite this over 60% of caregivers find it a positive thing in their life and willingly suffer the burden. Many don't realize they're slipping into burnout. And the most important thing in a situation like this is not the patient, but the caregiver who has to hold it all together.

So what can be done . . .

• Recognize your limits - and get some help - if not a friend or family member then ask in your religious institution - most people will willingly help - if you can't figure it out yourself then contact a local social work agency and have someone come over to help you out
  
• Get some time away from the situation every day - make sure you have time for yourself so you're not swallowed up in the situation on a daily basis (later we'll discuss home monitoring systems which can assist with this)
  
• Take advantage of respite care services - many of these services will allow you some time give you a break for a weekend, or a week
• Try and be realistic about your loved one's situation - find a group of people going through the same situation - In fact, severe cognitive, behavioural and emotional changes in the patient is reported to constitute the main risk factor for caregiver burnout - we're social beings and sharing a burden reduces it's significance - a local social work professional can find these for you if you're having difficulty
  
• Try and keep your sense of humor - laughter is after all, the best medicine

My grandmother, Nellie, lived with us for seven years before my mother realized she had burnout. Her family was unwilling to help. the situation reached a crisis and Nellie, who we dearly loved, was sent to her youngest son who really shouldn't have been looking after her as he has his own issue with alcohol.

The situation with my mother took 6 or 8 weeks to resolve her sanity and by that time we'd moved Nellie into a home where she eventually passed on. If, we'd been smart enough to recognize the signs early enough, we could have taken steps to make Nellie's final conditions a little happier for her. From first hand experience, I cannot stress enough the need to take care of the primary caregiver first.

So to some sources:

www.caregiver.org is an excellent source of information on this topic
www.alz.org is an excellent source which deals specifically with Alzheimer's
An electronic forum for caregivers of people with neurological disorders to find support from other caregivers can be found here

Keep smilin'
Steve