What Every Child Of Dementia Needs To Know About Expecting The Unexpected

Expecting the Unexpected: A Lesson Learned/ Lizette Cloete OTR/L CADDCT, CDP

Have you ever had something unexpected happen to you? 

Did that make you feel out of control? 

Afraid of what might have happened? 

Scared of what you may find out?

For me, it finally happened. The call I hoped I didn’t get in the middle of the night. 

The problem was I didn't actually receive the call. 

Why? Because I use a Do Not Disturb setting on my phone. 

How is that related to you and taking care of your parents living with dementia? 

Today I want to tell you how you can set up yourself for success by expecting the unexpected.

A few Sunday nights ago, my mother fell in the middle of the night. Our family had been proactive and we had installed an emergency response system to keep my parents safe at home. 

My dad got up, tried to get my mom up from the floor but was unable to do so. 

My mom was bleeding, and needed to go to the bathroom. She (mostly unhurt) but was on the floor. She told me she felt helpless and embarrassed because she could not get up. 

My dad activated the emergency response system, which did what it was supposed to do. It called 911 for them. 

And it summoned me and my husband as well. 

However, I never received the 1:16 am call until the next morning when we got up. 

Why? Because I use a Do Not Disturb setting on my phone. 

I immediately rushed to get there, worrying all the time. 

Was my mom (or dad) hurt badly? Were they still at home? Or was someone in the hospital?

30 minutes later, I was at my mom and dad's house. 

Then I had another hurdle to face, something I didn't think about at all. 

I arrived at their house at 6:50 am, and (TRIED) to use my key to get in. 

And couldn’t.

Why? Because after the emergency medical help left, my dad engaged their safety chain! (But at least I knew they were home!)

So I went back to my home. 

Several hours later, my mother and dad had an unexpected visit from me. You see, “They didn’t want to bother me”, so they didn’t call me. I bet this has also happened to you! 

Here are the 3 most important things that I learned from this experience? 

1. You have to have a plan in place for when the parent you are caring for falls. We had done the right thing by getting Electronic Caregiver. However, I had not taken the necessary steps to think through what actually would happen if the Electronic Caregiver called in the middle of the night. We use a Do Not Disturb setting on the phone overnight. You probably have considered what would happen while using this setting, but I didn’t, and I felt so stupid and careless! And it caused me unnecessary anxiety, fear and time because I had not taken the time to figure out how to let those calls come through. Don’t be like me, immediately set up your phone to have those emergency calls come through! 

2. Next, I learned that if you are helping somebody with an emergency response system you need to remove the safety chain from the inside of their house! Because if (or when!) something happens and the safety chain is engaged, you cannot enter the home without breaking down the door. Learn from my mistakes!

3. The third thing that I realized was that having a plan that was done, but not perfect was better than not having a plan at all! Being proactive had reduced my stress, my anxiety and my own fear when I received the emergency call 5 hours later! 

How does this help you keep your parents with dementia or other cognitive impairment at home? 

Having an imperfect plan helps you by being in a better frame of mind when you actually get the expected unexpected call. 

You do not need to immediately be afraid, anxious and stressed out because you know the person you love has received the necessary care immediately when they needed it, even if you were not there. 

Although the phone call came in at 1:16 am, the emergency response system did what it was set up to do: take care of my mom and my dad. Even though I did not know, they got the care they needed.  

If the outcome had been different and my mom had really gotten injured, she would have immediately had the help she needed.

What else can you learn from my expected unexpected situation?

1. Hindsight is 20/20. Even though you modify the environment as best you can, your parents still have preferences, values and can choose to make different decisions than you would, even though these decisions can impact their lives. And that is okay. Why? Because not living is worse than falling. Continue to talk to them about throw rugs and other fall hazards (I removed the particular villain that caused her fall!), but it is their choice to live with the risk, and you need to be okay with it. Expect the unexpected.  

2. Take the time to change the settings on your phone to let your emergency response calls go through, even if you use a Do Not Disturb setting on your phone. A simple, easy fix

3. Consider removing the safety chain, so you can access their home without breaking down the door. Such a simple fix, but easily overlooked. I know I did. 

4. When your parents fall, call their primary care physician and implement a plan to have home health nursing, physical therapy and occupational therapy. Why? For a “tune up”. A fall indicates your parent has strength, balance or other underlying issues that can be helped and should never be ignored! (even if they did not get hurt, or hurt badly!)  This is exactly the plan I put in place to help my mom after she fell.

Expect the unexpected in your dementia journey! Having an imperfect plan is better than not having a plan at all! If you need help developing your plan, join me at my next workshop "From Overwhelmed to Empowered: A Workshop For Daughters of Dementia".

Read more:

Keeping Dad (or Mom) at Home: 6 Steps to Make it Happen Without Losing Your Mind

What Every Child Of Dementia Needs To Know About Expecting The Unexpected

Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. She and her husband emigrated to the USA in 1993, and currently reside in South Carolina. They have 2 daughters and one son-in-love, 4 cats, one dog and 16 chickens.

Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. Among her many accomplishments, she served on the South Carolina Occupational Therapy Association’s Board of Directors from 2008-2014. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”.