My Top Ten List of Dementia Don’ts

alzheimers-badgeI started this blog to help me deal with all of the changes I was seeing in my parent’s and feeling helpless. Over five years I learned quite a bit, and have poured it into Dealing with Dementia in hopes of making this journey a little easier on the next family.

I’m honored to  have been named one of the Best Blogs of the Year for 2016, 2017, and 2018. To celebrate, I’m recapping my Top Ten Dementia Don’ts.

I wrote these when my mom was living in an assisted living community dedicated to memory care. Some really only come into play in the later stages, but could really just be general life rules if you ask me!

10. Don’t assume because they can’t tell you, that your words or actions don’t hurt their feelings.

9. Don’t assume they can’t answer for themselves.

8. Don’t blame them for the changes in their behavior.

7. Don’t remind them of a death of a loved one or pet.

6. Don’t talk about someone with dementia in front of them like they don’t exist.

5. Don’t think they can’t communicate just because they don’t speak.

4. Don’t assume they can’t understand you because they are silent.

3. Don’t correct or challenge trivial things.

2. Don’t say “Remember when … “

1. Don’t tell someone diagnosed with dementia they are wrong.

What are some of yours?

Revisited. 

** I updated this post in 2018 when I was again awarded this distinction. 

 

 

 

 

 

 

 

3. Don’t correct or challenge trivial things.

trivialThis is the third item from my list of things to never say to a person diagnosed with dementia. It took some time for me to learn this and I feel like its a partner to tip #2 to not say “remember” — they go together.

I recognize this “don’t” is sadly one of my righteous habits. I know that it has softened over time but growing up in a smarty-pants family where debate was encouraged, we got in the habit of pulling apart arguments plank by plank.

When mom and dad were driving, forgetting to pay bills, and calling me over-and-over to ask the same questions like “what day is it?”, I thought pointing these things out as a failing would help them finally sell their town home and move into the retirement community full time. Oddly enough, they recognized that their spouse was doing poorly, but never recognize a weakness in their own abilities.

What my behavior did was to create distrust with my parents. Generally, my mom would become argumentative, and my dad would shut down.

I realized that I had to change because my parents were unable to recognize what was happening and therefore unwilling to make any changes to their lives.

What I didn’t know then, and still would not have accepted, was that I would have to wait for something to happen to force a change. When dad broke his hip, required surgery, spent several days in the hospital, and weeks in rehab, I was able to learn a lot more about how much help my mom really needed on a day-to-day basis. It also gave me time to collect more information on their finances and their medical history so in the future I could be a better advocate.

I started from the place I knew and within that familiar dialogue I had with my parents as their adult child. However, with their dementia, logic was not logical to them, they were recreating their memory because they didn’t remember. My habit of debating matters, especially when it came to the little things, only made the road more difficult for all of us. Experienced.

Celebrities Illustrate the Good, Bad and Ugly in Life Planning

The Forbes story The 10 Biggest Celebrity Estate Stories Of 2014 And What You Can Learn illustrate good planning, bad planning and the ugly side of family feuds after a loved one dies.

From complicated family issues for Robin Williams, to misinformation about “trust fund kids” by Phillip Seymour Hoffman, it’s easy to stop and gawk. However, it’s reported that more than half of all American’s die without a will.

I’m lucky that my parents shared their wishes with me and my siblings and completed their estate plans well before we needed to use the tools created.

When you turn 65 years old, according to the U.S. Department of Health and Human Services, you have a 70 percent chance of needing 3 or more years of long-term care. You will be on this earth and need someone to advocate for you, pay your bills, manage your household and ensure that you live the life the way you wish.

If you do nothing else, contact a local estate lawyer about a Durable Power of Attorney. It should cost a few hundred dollars and will prove to be priceless in the very likely event that you need it.

Don’t repeat the mistakes of the rich and famous. Deliver the ultimate gift to your loved ones by planning now.