Caregiver Stories: Finding Reflection and Support in Dementia Care

Journaling during the dementia journey can reduce stress and provide relief. Taking time to step back and reflect can also be educational. Some journal thoughts:

In the past, I have been skeptical of Lou Gehrig’s line, “Today, I consider myself the luckiest person on the face of the earth.” How could anybody suffering with ALS utter this phrase honestly. Now, I get it. In his waning days he was reflecting on his entire life and realizing that the illness he was experiencing was a small segment of a remarkable life that knew mostly happiness, successes and extraordinary recognition. He would not have changed places with anybody else, because he felt blessed. The ability to retain this broad perspective will be essential in the months and years to come.

Everyone talks about the dementia experience as a journey, and when you first hear the phrase, you think of it as a journey into oblivion. But it is so much more than that. There are harsh times that border on depression (and for some may become depression), but there are also highs and insights into what our lives are all about. On the dementia journey, there is no escaping questions about family, love, meaning, purpose, expectations, longevity and a host of others. Sliding through life is not an option. Most importantly, deceptions are shattered, and if we are paying attention we discover more about who we really are.

So many of our conversations now seem non-sensical, but when I am truly tuned in, that doesn’t matter. It is all about being together and sharing moments – and realizing that we have been and always will be intertwined. I know that the future will challenge this. But it is a comfort knowing that in the past and now, we are one together. Joy and sadness are joined in warmth.

Brené Brown says that life is all about connection. Caregivers learn that the dementia journey is about the decline in connection with our loved ones and friends. It’s a slow and painful erosion of life as we have known it. To survive – to regain our wholeness – we need to reintegrate with the world around us. This is hard when we feel so fatigued and devastated, but it also explains why we find such comfort in support groups that share feelings and provide compassion. Somehow, we must reach out.

There are cumulative ramifications from caregiving. Stress and fatigue fluctuate but feed off each other. It is helpful to take a step back or seek out a vision from above that puts everything in perspective. When we do that, we realize that we have never been alone. Millions of people have faced similar or worse situations since the beginning of the human race. This may not solve any problems, but it banishes self-pity.