Alzheimer's Caregiver Expectations vs the Emotional Reality

I know what you're thinking. You imagine the days as a full-time caregiver for your loved one with dementia (LOWD) are all utterly awesome and dotted with cozy day-to-day interactions with family and friends supporting you in this quest as you care for your loved one. Well, honestly, that's kind of what my Alzheimer's caregiver expectations looked like in the beginning... And, um, even in the middle.

For me, as I watch my mom in the end stages of Alzheimer's, I am reflective on the expectations I held on concerning my family and friends when I first began my role as a full-time caregiver.

A lament for your LOWD

"For me, the grief is too near" Legolas… Do you remember that line in the first Lord of the Rings trilogy? Friend, grieving is HARD. And to be honest, grieving is all-encompassing. It looks different for everyone. It targets the nerves. It affects the mood and yes, if you did not know, it changes a person.

Everyone is affected by grief and mourns differently. Respectfully, sometimes that mournful response may not be easy to understand and may even look like ghosting - the actual behavior and not the phantom menace.

Accepting the emotional reality

When I took on the role as my mom's caregiver I did not understand that to care for one with Alzheimer's is to witness the loss of that person every day.

That person is losing something every day. So it's not just the loss of memory but it is the loss of their personality, their mobility, their understanding, their coordination and so much more. Looking back, I struggled to accept the loss of my mom and her fiery personality. I had to re-learn her and re-establish a new relationship with her. Explaining this to family and friends was challenging at best because they also could not grasp the concept that the disease was taking away the woman they had always known.

Living while mourning

Ah, but the disease was causing a change and my mom was exhibiting behavior that they were not accustomed to. Instead of accepting the changes some family members and friends chose to fall back and distance themselves.

I can't deny the emotional reality. It made me feel as I was living while mourning my mom's loss and it was only magnified by the loss of said family and friends. It took some time to realize that they were also mourning, in their own way. I soon began to wonder if maybe my expectations for how I wanted my family and friends to respond were going against the reality of what I was experiencing.

Perhaps it was possible that they felt that they had no other option for supporting us than to be physically present. This soon led me on a journey to discover the different ways you can show support.

Ways to show support

When you can't always be physically there or find it difficult to be, you can still show support to your loved one. Here is a quick checklist you can download and share with your loved ones that offer different ways to show support. Once you have taken a look at the checklist, let me know below how are your Alzheimer's caregiver expectations stacking up to reality lately? Tell us in the comments below, or share your story with the community.

Download a printable copy