Denial Is Not A Strategy – Planning for Unexpected Eldercare Challenges

There are days where being in denial is better than coming face to face with reality. Like when your child is so misbehaved in the grocery store, you actually believe this small evil person is not your next of kin and you start looking for the mother with the rest of the passersby. Or when you go to zip up those pants and you are furious with your husband for shrinking them in the wash, again.

In my line of work, families are often in denial. Quite frankly, I don’t blame them. Denial was our family’s middle name as we were caring for our father and grandmother.

It’s really heart wrenching to watch our parents or grandparents become frail or deal with the aftermath of a stroke, Parkinson’s disease and other chronic illnesses. Whether it’s the loss of health, the decrease in independence, the anticipated loss of a spouse or the disenfranchised grief with dementia, family caregivers rarely take time to sort through the range of emotions associated with these losses.

Sometimes it’s denial and other times, life keeps moving us forward with equally important priorities such as work and raising a family. Mostly though, caregivers are surprised by the number of challenges they face, or the ones they didn’t expect, such as the following:

• An uncertainty or a lack of awareness about the aging process. Is mom’s memory loss normal or is it serious? Dad seems so frail – is he managing? Uncertainty or lack of knowledge makes it hard to judge whether a senior’s behavior is normal or a cause for concern.
• A perceived role reversal. When our parents become frail and need our assistance to maintain their independence and quality of life, caregivers often feel a reversal of roles. Communication can be touchy and acceptance of help isn’t always well received, which can alter the parent-child dynamic. The end result is often increased tensions or dealing with difficult emotions.
• Money, Money, Money. Families can feel the squeeze especially as care needs and housing requirements change. At times, the aging loved one’s resources are insufficient to cover the associated expenses. We often wait too long to talk finances with our loved one because it’s one of the most difficult topics to address.
• Stress and life balance. Many caregivers can’t believe just how many directions they are pulled – caring for their loved one, parenting and supporting children, honoring one’s spouse, keeping up at work and trying to navigate the gamut of health care providers and changes with our aging loved ones.
• Lack of awareness about the workings of the health care system and community resources. This can result in inappropriate expectations, time-consuming navigation, uncertainty on who does what and for what, and inflated levels of frustration and anger during a crisis.
• Guilt and more guilt. Caregivers often set unrealistic expectations, are led by duty or loyalty and often feel guilty because they either can’t do enough or they are bound by geographic location. Coupled with wanting to care for an aging loved one, this can result in an inability to say no to demands and expectations of family members or the health care system.
  It is also a complete shock for families when the unexpected occurs. A wise person once said, “Make reality your friend not your enemy.” A crisis isn’t the time to start thinking and talking about the elder care planning process. Start now.

Think Worst Case Scenario

Yes, it’s morbid and at best uncomfortable. Wouldn’t you rather have had a discussion about an Advanced Health Care Directive with your parents than having to make the decision to take them off life support? What would your family do if the primary caregiver were no longer able to care for your aging loved one? Who would step in? Who would coordinate the care? Would dad want to live in his home, move to yours or go to a supported housing facility? Who would pay if private care were needed? Is there enough to pay?

Evaluate the Situation

Seniors and their families want to scan the overall picture and find out what’s working well and what isn’t. This provides a benchmark to compare with down the road if health or mental abilities change. This includes:

• Their physical, mental and psycho-social health
• Their ability to function well and to independently perform the basic activities of daily living such as dressing, bathing meal preparation and medication management
• What formal services they are currently accessing, if any, – Who else is helping (i.e. neighbours, parish and friends)
• Their living arrangements, their social network and their access to informal support services.

Putting Together a Care Plan

Once you’ve assessed the situation, families are best to prioritize concerns and issues. If possible, stay objective. Writing things down is always helpful. Start by:

• Dividing a piece of paper into two columns. Write a list of what’s currently working in one column and a list of problems or anticipated future problems in the other column.
• Prioritizing the challenges and the problems.
• Taking another sheet of paper divided into two columns with a list of prioritized concerns on the left and possible solutions on the right, such as how to access support and resources to implement action and who is responsible for each intervention.
• Presenting options and making decisions based on needs and preferences of the aging loved one and caregiver.
• Monitoring the extent to which this intervention has, or has not, addressed the problems identified, and modify your plan accordingly, or as needs change.

The bottom can fall out when you least expect it. Do you have a safety net?