Choose Joy

This week's blog is by our friend, author Pat Snyder. If you haven't yet read her book, Treasures in the Darkness, we highly recommend it, especially for those just starting out on this journey. It's about extending the early stage of LBD.

Pat's techniques continue to work well all along the journey. She speaks about "Identifying the Enemy," which she describes as a) the disease and b) caregiver stress. She further divides the stress into four parts, hurt, guilt, frustration and fear/worry. In this blog, she talks about the last one, fear/worry. Hopefully, we'll get her to talk about the other three in later blogs.

We have all felt that fear/worry. It comes with the territory. Acknowledging that is half the battle of controlling it.

The key is to identify fear as one of the things that can hurt you if you let it---so it is your enemy. A wise man named John Ortberg said this:

"Worry is a special form of fear...
Worry is fear that has unpacked its bags and signed a long-term lease.
Worry never moves out of its own accord--it has to be evicted...
Fear destroys joy. Live in it,
and you will know the pain of constant, chronic, low-grade anxiety...
When I live with a fear-filled perspective,
I give my imagination power to rob me of life NOW...
When I live in fear, the power of the 'what if' becomes overwhelming,
and I will go through life without joy.
Joy and fear are fundamentally incompatible."

Now, if he is correct, and I think he is, we can use this truth that joy and fear are fundamentally incompatible to our advantage. To change from a worrier to a Lewy warrior, I suggest that you:

• Use joy to neutralize fear and worry. Choose to feel joy consciously and strategically. Look for moments of joy in each day and magnify them. Tell yourself, "I will NOT let fear control me!"
• Change hand-wringing "what-ifs" into positive problem solving motivators. Find others to help you problem solve some potential issues. Remember all of them may not actually happen, but you will be prepared in advance with some solutions if they do. A caregiver support group, local or online, can help you with this(Comment: Worry actually has a job to do. It is to alert you to things that need attention. However, once you've done all you can do, worry's job is done. If you keep it hanging around it becomes harmful.
• Focus on what is in this moment. This moment is almost always DOABLE. (Comment: We often mistakenly try to use worry to control the future. That's not its job. Instead of helping, it just adds more of that anxiety John Ortberg talked about. When you keep your focus on this moment, worry becomes a non-issue.
• Preserve your loved one's person-hood by personifying Lewy. Separate the antics of dementia from your beloved.. (Comment: Join with your loved one against Lewy. Being a team helps you to blame Lewy rather than your loved one for his difficult behavior. It also helps him to blame Lewy rather than you for his frustrations.)
• Love and nurture your loved one while outsmarting the monster. Trust me, if you commit to doing this you will get better at it over time. (Comment: This is a prime example of finding and using joy to combat fear and other negative emotions. Gentle, non-custodial touch, that is, voluntary touch rather than that needed to help with ADLs, and gentle, loving words help both of you feel more positive--there's scientific support for this, but you knew it anyway, didn't you?)

Thanks Pat. Next week, we will probably go back to those great presentations we heard at the conference. One of the LBD legends, Tanis Ferman, did one on fluctuations and hallucinations and I may be able to to adapt it for a blog or two.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.