So Your Loved One Has Dementia - Now What?

Your worst fear has been realized; the symptoms you are seeing in your loved one are more than just normal aging.  There is MUCH more to do than you might think - right now.  The guiding light for me was to preserve my mom’s dignity - and to keep her as independent as I could, for as long as possible.  That made it easier for me to prioritize how to do things once I knew what I had to do.  In order to do that, I needed to get our “ducks in a row”.  Here are some actions that have helped me and other caregivers:

Give yourself the authority to act

While your loved one can still communicate their feelings and wishes, you want to have the “tough” conversations, become an advocate early, and put the right documents in place.  It is hard to imagine now, but having the ability to act on their behalf both financially and legally will make or break your ability to care for your loved one.  The sooner you act, the more joyful moments you and your loved one will have!

Each of the following these things are important, so we’ve created a downloadable tool kit as well as some blogs to help guide you. 

• How to Start the Dementia Conversation with Your Loved One

• Navigating the Medical Maze

• Dementia and Driving

• Preparing Today, Protecting Tomorrow (financial and legal planning)

• Protecting You and Your Loved One (financial and legal planning tool kit)

Build a care team of support

Caregiving can be isolating and exhausting. Now is a good time to sit with siblings, family, and friends who will be part of your loved one’s support network.  Identify tasks that they can each “own”.  If you are the primary caregiver, you will be the “conductor” of all of these different tasks but having help will reduce stress and give you more time to enjoy time with your loved one and your own life!  Many care groups will break up the tasks into things that align well with interests / expertise:  Managing the finances, point person for doctor visits and calls, social coordination, respite care, etc…

Create a Safe Environment

As cognitive abilities decline, safety becomes paramount. Remove tripping hazards at home (e.g. area rugs, furniture that blocks a pathway to the bathroom, etc…), label rooms clearly, and if they are still living independently, unplug appliances such as the stove to avoid a fire.  

In my research I found a suggestion to consider installing locks on doors if wandering becomes an issue.  Hmmm…  

In my experience, if you are at the stage of having to install locks, then your loved one already needs 24/7 care.  The wandering can happen at any time of day; they lose awareness of time.  So if they are still living independently, you need to address that fairly quickly.

And if they still have a car - and keys to the car - you’ll need to address that quickly too (see my blog post on this topic!).  In the case of one of my aunt’s friends, she took the keys to the car (in PA) and walked out of the house without her husband noticing.  She proceeded to drive herself to New York State on memory!  She was living in a different decade in her mind; at 80-something, she was going to visit her parents (she didn’t remember they weren’t alive)!  An APB was put out and the police eventually found her.  When she returned, she was not able to remain in independent living and was moved immediately into Memory Care.  I can only imagine how traumatic that 24 hour period was for her family!

Encourage Meaningful Activities

Even as abilities change, engaging in simple activities—like:  going for a drive, taking a walk on the beach, going out for lunch, doing fun memory exercises (game on the phone, board games), listening to music, doing arts and crafts, or looking through photo albums—can bring moments of joy and connection.  

There are some wonderful music solutions such as the iGuerburn Simple Music Player for Dementia Elderly Seniors.  My mom adored music and dancing - and got lots of enjoyment out of it!  And now my uncle has one (he just moved to memory care last year).

While it is truly heartbreaking to see someone you love struggle with these changes, focusing on what remains rather than what's lost can help you find moments of joy together—sharing a laugh over a favorite memory or enjoying their favorite ice cream flavor together.

Parting Thoughts

Dementia is a complex condition that affects not just the individual diagnosed but their entire care team. As a caregiver, you play an invaluable role in providing love and stability during an uncertain time. By staying informed about the signs and symptoms of dementia, you can ensure your loved one receives the care and support they need while also taking care of yourself.  If you’ve gotten this far and want to learn more about the disease here are some other blogs to read:

• How to Recognize Early Signs of Dementia

• The Stages of Dementia: Timeline & Duration

• Understanding the Different Types of Dementia

• Beyond the Clinic: Alternative Assessment Resources

• Stage 7 - The Final Frontier

You're not alone in this journey. Together, we can face the challenges of dementia with compassion, understanding, and hope.  Glya Health was started with a commitment to being a “friend in your pocket”, for the duration of this journey.  We are honored to share it with you.

In solidarity,

Kate