In Sickness and In Health: Patience.

I have never been very good at “patience.” “Waiting” always sounded like “wasting” to me.

I tend to talk quickly…and a lot. I can count on one finger my grade school report cards that didn’t include the comment: “Scott does very good work, but talks too much.”

My natural walking gait is quick, a trait my daughter inherited. On family trips, my daughter and I were always a half block ahead of my son and wife. And pulling away.

I even co-founded a business back in the early 90s based in large part on speed-to-market. Sure, the world was speeding up and it gave us a tremendous competitive advantage. But really, it just fit my natural inclinations.

Then, dementia entered my life. I became a caregiver. And everything changed.

My learning curve was, as I realize now, way too slow. Yes, I was adapting to a role I never anticipated. I had to learn to bath, change, dress, feed, walk, protect and entertain my wife…who had been one of the most fiercely independent people I had ever known. I loved that about her. But dementia and independence do not exist together.

Early on, I was still in my “let’s get this done” framework. Dementia and I had a different concept of time and accomplishment. I was focused on the task, not the reality of the experience. I got frustrated, I made (to my eternal regret) intemperate comments and I just didn’t “get it.” I mean, you’ve put your arm thru a sleeve a million times…how hard can it be?

But I learned for one reason: the look in her eyes.

She knew she wasn’t like she had been. And she hated it. This red-headed ball of fire was dealing with her worst nightmare. She couldn’t verbalize it, but she communicated with her eyes. And as so often in our 45 years together, she taught me.

I began to understand that this was not about day-to-day living tasks. It was about living, what we had left, to its fullest. To staying as connected as we had been, with roles reversed. She had taken care of me me for so long, understanding this hyper, driven guy that she had to adapt to as I took us on a wild ride. Now, it was my turn.

And I changed. I slowed. I learned to look beyond the tasks, and focused on the moments.

Dressing became hugs. I often wore a hoodie, and she would tie my strings, caring for me. I let her, and thanked her. She seemed pleased.

Walking from place to place became an event. Sometimes we’d stop and dance, to music only we heard. She loved dancing…she was a semi-professional ballerina earlier in life…and it brought us back to so many other moments in our life.

Television was her constant companion. (I now love Ellen…and Steve Harvey.) We would sit, holding hands as I commented on the insanity of daytime TV and she would give me her patented WTF look. Every husband knows that look…but I cherished it. This was our last walk together, and I tried in everything I did to make it an extension of our 40+ years together.

I kissed her, a lot. Not with the passion that we had shared so long, but with something deeper. Something that went to my soul, and I hoped hers.

Here’s the thing. If you are a caregiver of someone with dementia, realize that the early days will later leave you with regrets. And that’s OK. None of us are prepared for this experience. Whether it’s a spouse, a parent or a friend, you will have to learn a new relationship. You may, like me, have to learn to focus on what is really important, not what is expedient or what you have known in the past. The person you love is changing, and you have to change with them. Focus on the love, because change is a constant just like love.

At the end, Billie never regained consciousness. But I continued to hold her hand, stroke her hair, kiss her and tell her I loved her. I believe she knew I was there, as I had been for 45+ years.

And that’s that’s the best we can do for someone with this horrible disease. Be there, to the end, with patience, love and understanding.