No one gets a ‘how-to’ handbook when the doctor shares that you’re now living with dementia. Wham! “See you in 6 months/next year!” Really? Yup. If you’re part of the Banner or Barrows network, you do get extensive information and support.
Much of my work is with people living with dementia (PLwD) and their families. It’s prevalent in my family too. Here are some tips to help as you navigate what comes next.
You’ll need a team! This isn’t a journey to be traveled alone. Begin assessing who your team players will be now.
Own it, don’t hide it. There’s nothing to be ashamed of – dementia is a medical condition. People need both awareness and understanding of it. Share what you’re experiencing with those in your close circle, so they have an idea of what to possibly expect when you’re together. If you’re open and honest about it once it’s generally noticeable, you’ll create a more comfortable environment.
Some PLwD have acute awareness of the changes happening to them. Others don’t have a clue anything’s wrong with them. This is a physiological reality. There’s an area of the brain that manages our awareness and if it’s affected, it’s impossible for us to have this understanding.
“It’s the disease, not the person!” Repeat that phrase ad nauseum as a loved one asks you the same question for the umpteenth time. A PLwD forgets first what they learned last… that’s why our short-term memory is affected while our long-term memory remains more intact.
PLwD lose the ability to see something from someone else’s point of view. If you find yourself constantly arguing, trying to reason with someone experiencing brain changes because they won’t (can’t) see your perspective anymore, back off – change the subject. Move on.
Meet them in their reality. Don’t try to convince them otherwise! Their brain is telling them what their reality is. Our job is to provide comfort, a safe and trusting environment. Healthy brains can process and take in data and respond as needed. PLwD don’t have that luxury. Accept and validate their current perception as real and ask them to tell you about it.
PLwD are doing the best they can! It’s common to believe our loved ones are being ‘difficult’ when they don’t do things ‘normally.’ The reality is, sometimes our brains just either respond slower, not ‘normally,’ or not at all, because the proverbial ‘wiring’ is loose, and the connection isn’t being made correctly. No one ever tries to fail.
This is a family disease. Everyone in your close circle will be affected in some way. It’s the relationships that change most and often that becomes the hardest obstacle to reconcile because we didn’t expect that.
Our hearts are intimately involved in every part of this journey. Both patience and practice are paramount for care partners. But if we understand and accept the realities PLwD are experiencing, it becomes easier for everyone.
Elaine Poker-Yount, CDP, Aging & Dementia Care Specialist
Reach her at 480-203-8548 or elaine@successfulagingaz.com