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. Whether you just 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.
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. 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. Dementia has long been called the disease of denial…”they just are so stubborn and won’t admit anything is wrong!” 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.
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.
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