Watch Your Language

I love words. Why do we say what we say? What do our words really mean? They can reveal a lot about what's in our hearts and shape what's in there, and influence what comes out.

The idea of being a caregiver is so ubiquitous, everywhere. It is ingrained, firmly established. It's actually one word - caregiver. Our language has changed around this idea of giving care to someone regularly - to a loved one or a child. Someone who can't care entirely for themselves.

Tracking the cost

When we decide to take on that role of caregiver and begin this journey, we try to count the cost. As we go down that road, we feel it. It is high. Financially, emotionally, physically, and time-ly.

When a loved one has Alzheimer's disease, we give and give and give. It can be draining. Depleting. It's why we talk about self-care so much. Self-care.

We need a culture shift. A language shift? How we speak of this journey can affect our attitudes towards it and our loved ones, and the effect can ripple outward and beyond.

"Living with dementia"

I read an article the other day that really grabbed me in the language used, not so much the content. It was about a drug trial, I think.

First, the author interviewed people "living with dementia." That type of language is more common. I'm late to that party.

We should be referring to people as people and then the condition they are living with, and not referring to people as if they are the sum total of a disease or ability or lack thereof.

That seems fair, affirming, and giving of dignity. Next, it struck me that those people were asked for their opinion. It is easy to skip that with a loved one with dementia.

Quality of life

We are tired and want to expedite care, protect them, and get to the next. Frankly, it's easier to do it myself than enlist my loved one. What I got out of it is that I need to ask more of her.

A common thread from the people living with the disease is that they cared about their quality of life, relationships, having hope, and a sense of purpose.

Sometimes I feel like I'm on some "death watch." I stop getting the most out of today, and instead, I'm trying to mitigate tomorrow. That's not fair to my mom or me.

Care partner vs. caregiver

The last line in the article got me. It referred to the person living with the disease and their care partner. Hm, care Partner.

Caregiving, for me, has a sense of it being one way. Care partner, on the other hand, is a two-way street. It takes into account that my loved one still has much to offer. She doesn't demand that we stay with her 24/7. She wants us to go out and do our things. She will just lock all the doors, so we better bring our keys!

She likes when I wait on her hand and foot - who wouldn't? But she doesn't expect it and wouldn't want it if it hurt me. I'm a southern woman. Fussing over is our love language, but it can take its toll.

Finding joy despite Alzheimer's

There has been a lot of joy on this journey. There is a closeness that we wouldn't have had. My kids are close to their grandmother. She lived in another state before she lived with us. They have good memories of their grandfather. There has been a lot of laughter.

We count the cost, but let's not forget to count the benefits. There is a lot of life after diagnosis - let's make the most of it! How do you continue to find joy regardless of Alzheimer's? Tell us about your experience in the comments below, or share your story with the community.