Being a caregiver is both a physical and an emotional journey.

This journey is all-encompassing and it takes its toll. There are emotional, physical and financial strains that call on us at the deepest levels. These challenges can hit us intellectually, socially, financially and spiritually. Simply put: caregiving can be overwhelming.

And to top it all off, we didn’t choose to have our loved one become sick. It is not like becoming a new parent, where you have a vague idea of what you are signing up for. There is a usual trajectory or infant to toddler to child with lots of advice and sympathy for the challenges along the way. This sympathetic culture does not exist for caregivers. It is not a common experience to most of your contemporaries, so it is often difficult to find a understanding ear.

Over 90% of individuals suffering from dementia experience a significant behaviour disturbance that challenges their caregivers. In fact, for most families, difficult behaviour is the number one reason care arrangements change.

It is common to find yourself at a loss in these situations. Most of us start out by not knowing very much about the disease our loved one is contending with. And we certainly don’t have the skills necessary to manage the challenging behaviours we may face.

For example, our natural reaction to our mother’s refusal to do something (like taking a bath or shower) can cause us to escalate the pressure we are putting on her. Instead of factoring the disease component into our thinking, we automatically react as if she was a defiant child and increase the pressure to do what we ask. After all, taking a bath is reasonable. She has done it all her life. Why won’t she do it now?

Our skill set for dealing with difficult behaviour often comes from our parenting of our children. We don’t take the time to understand our mother’s new perspective and so we push back.

An individual who is having difficulty stepping into the bathtub may have lost depth perception. The white bottom may look invisible to them and they may feel like you are asking them to step into space. If that was your perspective, you wouldn’t step into that bathtub either – no matter how persuasive your child was.

So it is important to try and understand the perspective when caring for your mom or dad.

In addition to being inadequately prepared, there are also your own psychological factors at play.

Your relationship with the person who has dementia will change and this can cause you to feel enormous grief. As the disease progresses, you may experience a loss of emotional or physical intimacy. If you relied on your mom for emotional support, she may not be able to give it in the way that she used to. Or it may be there at certain moments and not at others.

This becomes a time when you must savour the moment. We all have difficulty enjoying time with our loved ones in the rush of everyday living. This can be particularly challenging when we are caring for someone with dementia. There are a lot of pressures on our time and we can miss the joy of the moment. Grab those moments when you can.

Your emotional experience during this time will be wide-ranging. The gamut of emotions you may experience can range from denial, anger, fear, sadness, guilt, frustration, and anxiety to helplessness, hopelessness, and feelings of being trapped.

We can’t control emotions, but we can control what we do with them. If you are experiencing these negative emotions it is important to develop a way to handle them. Negative emotions are going to create stress. If you acknowledge the stress and manage it, it will not be harmful. However, unmanaged stress will accumulate and build up. And accumulated stress can have a very negative effect on your own health.

It is important to find a positive release valve for yourself. Often when stress builds up we find ourselves losing our temper. We can lash out at those nearest to us because we count on their understanding. When you were younger, it was easy to lose your temper with your parents because you knew they would still love you. If you lose your temper with your mom or dad now, they may be less able to cope. This can leave you feeling even more guilty and increase your internal stress.

The unfortunate thing with losing your temper is that you must repair the relationship afterwards. Finding a better way to release pressure is important. I think one of the important factors is to recognize that we all have limits. And lack of sleep or exercise or time for ourselves can severely lower those limits.

The essential point – find time to nourish your own soul. This will help you have the strength and compassion to share the challenges of caregiving and cherish the joyful moments when they come.

Nicole Scheidl

As one of the founders and creative minds behind Fit Minds Inc., Nicole has been creating cognitive stimulation therapy programming since 2010. An experienced curriculum developer, teacher and coach, she brings a wealth of experience to creating and teaching the Fit Minds Program.

Nicole has trained hundreds of professional and family caregivers who have touched the lives of thousands of individuals living with a cognitive impairment. Nicole also holds a law degree from Osgoode Hall Law School, a Master’s in Law from Queen’s University specializing in Negotiations and is a Certified Professional Consultant on Aging.

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