December 5, 2023

Dementia Realities to Embrace

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. 

I’m here to set your expectations and provide the roadmap for everyday life.  Learning some of the basic realities of what this disease presents daily will help you to keep your expectations in check, also keeping your mindset in a place to be as adaptable as possible. Most of my work is with people living with dementia (PLwD) and their families.  The disease is very prevalent in my family too so my experience is both intimately personal as well as professional.  Whether you recently got smacked with this reality and are trying to wrap your head around it, or have been living with it for some time and now you’ve gotten to the point where you really need some guidance and help in figuring out how best to live with it, here are some tips to help 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.  Team members can include family, friends, paid non-medical assistance otherwise known as homecare, non-profit assistance, adult day clubs, support groups, home health, or palliative care. The earlier you embrace this concept of accepting help, the more prepared you’ll be to experience the journey.  You’ll be less tired and your loved one will learn there are others who can and do support them, whether they consciously recognize it or not.

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 for everyone.

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 called anosognosia.  The frontal lobe of our brain manages our awareness and it’s not only affected, but it also actually shifts, allowing us to have awareness at times and not to have it at others.  As caregivers, our acceptance and understanding of this reality is necessary.  Dementia has long been called the disease of denial…” they just are so stubborn and won’t admit anything is wrong!” This isn’t true.  The inability to recognize the change is a symptom of their disease.  And, you may be surprised to know that less than half of the PLwD have awareness.  If they don’t ‘see’ they have a problem, they cannot acknowledge it exists.

“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.  Again, this is something that comes and goes, which is frustrating because when it’s working it sets our expectations that it will always work.

Meet them in their reality. Don’t try to convince them otherwise!  Their brain is telling them what their reality is. Accept that their brain is showing them a picture and telling them a story.  Our job is to provide comfort and 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.  The brain is changing – both physically and chemically.  If the physical connections aren’t present, (the proverbial ‘wiring’ is loose), and the connection isn’t being made correctly, we can’t do things ‘normally’ at that moment.  Chemical changes in our brain, which are constant and fluid, also consistently affect our abilities.  This presents erratic and inconsistent behaviors and capabilities.  And, the bottom line is, 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 concept becomes one of the hardest obstacles to reconcile because we didn’t expect that.  It’s logical amidst all the other physiological changes that are happening throughout our loved ones’ bodies.  However when so many things are changing, adding emotional, and psychological changes to our psyche isn’t something we ever plan for.

Our hearts are intimately involved in every part of this journey.  Both patience and practice are paramount for care partners.  But if we begin with working to wrap OUR heads around understanding what our loved ones are experiencing and accept the realities PLwD are experiencing, it becomes easier for everyone.  Once we grasp and embrace the fact that our loved ones are living with brain change, we can adapt our behaviors to meet them where they are in their journey.

Us adapting?  Yup, we need to adjust our expectations, our routines and our mindset.  It’s work!  But the beauty is, if we do it, our lives as care partners become easier because we’re in it together.  I coach you how to do it together. This is the reason I have created this company – to be the support system you need, hand-in-hand, week-by-week, month-by-month, or whenever your world is escalating or crumbling, and you don’t know where to start.  If you’re interested in learning how embracing these steps can make a more significant positive change for you, give me a call.

Elaine

A condensed version of this article was published August 9, 2022 in the Arizona Republic

About the author 

Elaine Poker-Yount

Elaine lives with dementia both professionally and personally. She has worked with the senior and Boomer population for 25 years and is passionate about helping everyone be successful as they age. 

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