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.