On February 10th and 11th Dementia Alliance of North Carolina hosted the first Dr. Daniel Kaufer Memorial Caregiver Conference.  The theme of the conference was Behaviors: Awareness, Attitude (Day 1), and Action (Day 2).  I attended three sessions on Day 1.  These notes have relevance for those dealing with Parkinson’s Disease and dementia.

These notes are on the third session, “Your Attitude Can Change Your Story” with Pat Snyder.  This session reviews research-supported ways to make your journey as a caregiver more doable. Pat mentioned five important things to remember to do in choosing your attitude: positive, perceptive, proactive, persistent, and personifying the disease. She also emphasized the importance of forgiveness, and how to deal with worry, shame and guilt. 

The Stanford Parkinson’s Community Outreach Project has more information about cognitive changes in PD here.

To view the webinar, please visit the Dementia Alliance of NC YouTube channel.

Please see below for notes on attitude. 

Regards, 

– Joëlle Kuehn

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“Your Attitude Can Change Your Story”

Speaker: Pat Snyder

Webinar Host: Dementia Alliance of North Carolina 

Webinar Date: February 10, 2021 

Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach

When a diagnosis of dementia happens your sense of control over your life can feel shattered:

• Will take time to find your feet again
• Some people can’t find their feet again and their experience of caregiving can reflect that. 
• Even though you have to accept the reality of your diagnosis, it doesn’t mean it has to control your life going forward
• Reframed acceptance means you now take action to learn all you can about dealing with it.

Your story:

• As long as you are alive, you have choices
• Choices you make now and in the future will define your family’s experience of this dementia journey
• Dementia is part of your life, but your life (not dementia) is your story
• Story unfolds through your actions and your words – how do you want this season of your life to be remembered?
• As the primary caregiver, you have more power than you realize, so claim that power.  Transforming from “Lewy Worriers” to “Lewy Warriors”
• You have power, and are not helpless, and this is doable
• How you approach your actions matters

This session goes over research-supported ways to make this more doable. 

3 Secrets of Resilient People by Lucy Hone:

1. Resilient people get it that stuff happens, and suffering is a part of life
   1. Knowing this stops them from thinking “why me?”
2. Focus on what you can change. Choose into the good
   1. Accept the things you cannot change
   2. “Don’t lose what you have left to what you have already lost”
   3. It is an intentional effort to look for and choose what is good
3. Ask “Is what I’m doing helping or harming me?”
   1. Gives you more control

Forgiveness:

• Best kept secret for a more gentle caregiver journey
• Forgive past hurts and current disappointments
• Also forgive yourself for not doing a perfect job all the time
• Being a primary caregiver is one of the hardest job on earth, be kind to yourself and be quick to forgive yourself
• Learn from your mistakes and move forward
• “Forgiveness liberates the one who forgives”
  • Release of anger, hurt, disappointment, resentment and judgement
  • Let them go to give yourself more energy for other things
• Focus on what you can do, and what is good in your world and in your enemies

Two goals:

• Keep stress levels low
  • Manage stress levels everywhere you can
  • You and your loved ones
  • Symptoms will be more gentle 
• Preserve loved ones personhood
  • Should be your life mission
  • Nurture, love, support the person with the disease
  • Separate in mind and heart behaviors the disease creates from the essence of the person with the disease
  • Be their advocate, protector, champion
  • Disease is the enemy, preserving personhood is your mission

Choose your attitude:

Our attitude is a big factor in how successful we are

5 P’s

• Positive
  • Make an active effort to be positive
  • Do not deny reality
  • As caregivers we need most effective tools we can find
  • Positivity has been researched for years and has proven to be a key tool to those who practice it
  • Negative energy drains us, but positive energy strengthens us
  • How: Identify and acknowledge the negative feeling and choose to go in another direction.  Have self awareness, take time to pause and reflect what is happening in side and then choose to take action that will neutralize or minimize the impact on you

• Proactive
  • Be proactive instead of reactive
  • Try to anticipate issues by educating yourself 
  • Try to buy products or have a plan to anticipate needs 
  • Speak up when something isn’t right and ask pivotal questions with doctors
  • Share what you are learning with others especially with medical professionals who may not be experts in LBD
  • Do your homework, learn what you need to know, don’t assume others will know and educate yourself about your loved one’s particular form of dementia
  • Use your team 
  • Actions that will empower you:
    • Learn about specific symptoms of dementia, treatments and what to avoid, non-drug interventions, triggers
    • Find the right doctor who best knows how to treat your loved ones form of dementia and who listens to you
    • Build your care team, if it isn’t a good match, don’t go back and seek someone else
    • Connect with other caregivers, family members, neighbors and other people in the care team, don’t do it alone

• Perceptive
  • Be perceptive and empathetic about what is happening around you
  • Ask others you trust to help you in your observations as you discern what is happening but what is the most important to address
  • How:
    • Add a counselor to your team to help be perceptive of the emotional impact on your family.  Coping skills, communication issues, forgiveness
    • Be sensitive to your loved one’s symptoms and report them to the doctor
    • ID specific triggers that affect disease experience (multiple people talking at the same time, forgetting to explain what you are about to do before you will do it, loud voices, wrong lighting, change of routine, rushing, too many choices etc.)

• Persistent
  • Opposite of being passive
  • Stick with the plan, don’t give up
  • Don’t take no when advocating  

• Personify disease
  • Essential to managing behavior issues
  • Opposite of thinking “why is he doing this!?”
  • Separate disease from your loved one and identify that the enemy is the disease
    • Giving it a name helps (ex. Al for Alzheimers, Louis for Lewy)
      • “That’s just Louis talking right now”
      • Gives someone to blame (especially helpful for children)
  • Gives you emotional distance which allows you to think more clearly, problem solve better, redirect emotions, respond kindly to loved one which all preserves personhood
  • Identify the enemy: the disease, stress, shame/guilt, worry
    • Doctors, unhelpful family members etc are not the enemy even if they are difficult
    • Disease is obvious first enemy

Manage Stress Proactively:

• Choose lesser stressor – if had to decide what to do and had multiple ways to do it, choose least stressful way
• Lose habits – don’t have to do things the way you always have.  Don’t be the main cook at Thanksgiving dinner, etc…

Shame vs. Guilt:

• Shame: tell ourselves we are bad
• Guilt: tell ourselves we did something bad
  • Don’t go on guilt trips – they never go anywhere helpful
  • Feel the guilt, let yourself look for the lesson so you do better next time, let it go, forgive yourself and move forward

Worry:

• Moderate amount of worry can be constructive and lead to evaluations and motivate you to take action
• Re-evaluate what other options/ideas there are, and try again
• Stay in the moment
• Shift to problem solving mode and accept your team members help
• Use best friend method – what would you say to your best friend if they were in the same situation

Create moments of joy:

• We have the power to create joy in others and for ourselves
• Make memories of wonderful memorable moments that can last a lifetime
• Remember the good times

Question and Answer:

Question: Who were some non-doctor skilled dementia providers on your team?

Answer: Nurse practitioners, physician assistants, physical, occupational, and speech therapists, certified nursing assistants (CNA) who come into your home, massage therapists, pets, aging caregivers, groups like dementia alliance who you can call.

Question: You went through a long process of getting a proper diagnosis. Can you talk to us a little bit about being an advocate with your doctor if you don’t agree with what they’re telling you, and how to get the answers you know you need.

Answer: It took us 12 doctors to find the right diagnosis and treatment. Trust your gut and do your homework and ask for referrals for different doctors. Take notes with you, have someone in your room because the visits are intense and a lot of information is being discussed. Have a copy of notes for you, your doctor and the person you take with you. Have someone take notes of the appointment for you. Learn to ask good questions and learn to keep seeking and try to find the right doctor even if they may be far away. You go to the neurologist every 6 months, so be willing to do that. Develop a relationship with those care providers, and find a way to connect with them as a human being. Run from doctors who are not good listeners. You have to be strong and get over the white-coat complex and the doctor-god complex, where they are always right, and be willing to question it and pursue it further if you don’t agree. Having said that, be nice and polite even if you will never go back, try not to burn bridges.