The Whitworths of Arizona, bringing science to you in everyday language.

Friday, September 27, 2019

2019 ILBDC: Caregiver Empowerment, Pt.1

This week's blog starts a series about a presentation of Angela Taylor's at the 2019 International LBD Conference in Las Vegas.

These four pillars can act as a guideline to help you do the things you need to do while taking care of yourself as well. This week is all about

Pillar 1: Prepare in advance.

Knowing what you are dealing with and getting some ideas about how to do that BEFORE you need it, before it is a crisis situation, can make all the difference in the world. It is sometimes difficult to think about the future, especially when you've just received a diagnosis. However, the sooner you can do this, the easier your life is going to be later on.

Study the basics. Learn about LBD, its symptoms and how it is managed. (We have several books that can help you with that--as can many entries in this blog. Check the books out at the end of every blog entry.)

Think ahead. Get your legal and financial matters in order. If you can do this while your loved one can still legally sign papers, it will make the process much easier. Care partners also highly recommend that you hire an elder care lawyer to make sure all of these complicated tasks are done correctly and in a way so that you will get the best benefit as the disease progresses.

Prepare for doctor visits and medical emergencies by keeping a journal and having a "go bag" of things you will need in the emergency room. Make sure your loved one's living will or other health care advisories are all in order.

And think ahead about when it will be time to stop driving. Again, if this is discussed while it is an abstract issue, it will be much easier to come to an agreement. And once that agreement is in place, you will find that your loved one will be more accepting of it later (not necessarily willing, even then, but less resistant!)

Plan to adapt. This starts by accepting the diagnosis. Accepting that you life and your loved one's life will change, and will continue to change. As the disease advances, there will be role changes. You will, of necessity, take on more responsibility. Your loved one's job becomes different, not easier. It will take more and more of his effort to maintain. Think about how you will balance this major, new priority, caregiving, with your work, family and social life. Planning now, can make this much more possible. Above all, cultivate a flexible attitude. Don't get caught up in "what was." That will keep you from finding ways to adapt to the new realities.

Keep living. Don't let LBD be all there is! Continue to make new memories together. Find enjoyable things to do together and with family and friends. Empower your loved one to contribute to these memories. Maintain your connection and trust with each other. You are a team. And finally, remember to appreciate the simple pleasures of life.

Next week's blog will be Part 2 in this series about the Four Pillars of Caregiver Empowerment. Pillar #2: Use Outside Resources and Develop Your Skills.

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.

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