In Case I Forget

My children have known Mommy longer with Alzheimer's than they have without. It's been an interesting journey. They had only a few years to experience what life looked like with Mommy as their grandmother.

But I'm thankful they still get to experience her faith, laughter, hope, jokes, and love.

Assessing Mommy’s processing, communication, use of words, attention, and ability to answer questions + ability to follow my voice!

Following the data allows me to analyze where she is, implement strategies to ensure she has access, and communicate with the hospice team when they come to our home every Tuesday.

Knowing where she is helps me prepare for where she is going. She can have Alzheimer's and still have a quality of life. It is up to us to meet her where she is. The only way I can do this is by doing small check-ins, but not making it feel like an assessment.

The example should be what practitioners are doing. Not asking them the year, who the president is, or to identify an animal. I will die on this hill- assessments need to be created to cater to the stage of the diagnosis. If not, they are biased. Even people who are in the same stage have different abilities, personalities, strengths, and needs. We know too much to be giving the same test. It's LAZY!

This is why we fight so hard to differentiate within the classrooms. It's about having ACCESS!

They try to give Mommy those assessments, and I stop them quickly. You won't be torturing her for data you won’t use to not give her accsss. ✊🏾🖤

As Alzheimer’s progresses, you will see a significant change in your LO’s gait. A gait is the way that your LO walks. The change can happen suddenly or over time. You’ll begin to notice smaller steps, unsteady movement, leaning to the side, or difficulty navigating spaces. These changes are happening because dementia changes the area responsible for telling your LO’s body how to move. Their gait also changes because of what they perceive as shadows, floor changes, what appears to be obstacles to them, and due to muscle weakness and coordination.

As a caregiver, you can help ease their fear by clearing obstacles, adding lighting throughout the home, and using assistive devices, such as wheelchairs or walkers, to support them.

The goal is to decrease falls and keep them safe. We’ve got this!

“I’m trying!” Words that will forever be embedded in my brain. Her look. The sincerity in her eyes. The hope she’s pulling from trying to connect with me and make me believe that she gets it.

This thing is a beast, but we can’t give up. It takes both sides to try. Both sides need to keep pushing and working. Both sides believe that we can fight and win. And winning may not look like what the world deems as victory, but not giving up and increasing our faith as we try is all we need.

Excuse my child singing in the background. She thinks our house is a stage.

THIS folder is Mommy’s life. Every paper in this folder contains all documents since her diagnosis in 2014. There is not one thing I’ve missed.

I’ve pulled every doctor’s record along with dates of visits, every legal document, car titles, bank statements from the date of her diagnosis, receipts, spending, respite visits, birth certificates, death certificates (father), insurance, IHSS visits, hospice, funeral directives, and whatever else you can think of.

This is where advocacy begins. I am EXTREMELY thorough. There is not one thing I’ve missed.

I’m begging you to have everything in place for your LO. My old principal, Dr. Paula V. Snowden, taught me, “Documentation beats conversation!” I’ve always found that to be true. I know there are systems, but I’m old school. And don’t worry, I have at least 3 copies of every document. 🖤

Our family is fun, loud, creative, crazy, and most importantly, we take this time to enjoy small moments ans we make them big for Mommy. Last night she ate at Restaurant In Case I Forget ♡ # alz

Listen, as a reading specialist and Lexile Certified Educator, I understand the importance of language. I have been tracking Mommy’s language for a minute while implementing research-based strategies.

Let me be clear! Mommy is an outlier, and I truly believe our work, my knowledge, and expertise have given her an advantage.

This is not a game. I work with her at her level, just as I do with my students. I meet her where she is, plot her progress, and make adjustments. I'm looking for her ability to respond to me, follow instructions, and pay attention.

Working with her daily has slowed the progression. It's not medicine, it's the WORK! We are very intentional about how we work with her, having meaningful conversations and meeting her where she is.

My girl is SMART! All A’s this semester. ♠️🖤🦋🌻

You KNOW she's getting an F-(C- + 2-52 (n) x F -) x 17

❤️

I’ve seen so many videos with caregivers reminding their LOs that they are forgetting because they have dementia. And I'm sure you think if you say it enough they will get it. They won't!

This is not to condemn you, but to remind you that they are not aware that they have dementia, have asked you the same thing over and over again, or can’t remember certain things.

Dementia does that. It strips away their ability to remember. If it frustrates you, imagine what it’s doing to them!

Reminding them that they are forgetting makes them experience grief every time. It increases their agitation, makes them withdraw, and frustrates them.

You telling them they are forgetting won’t fix it.

We can, however, lead with love and offer a person-centered approach. You can validate what they are feeling and remind them that they are ok and you are there with them.

It’s not our job to remind them of what they are losing, but it is our job to be there with them to walk a safe journey together. 🩷