REQUEST SUPPORT | DONATE | BLOG

Your Voice – Lessening the impact of dementia

The joy of growing up for me was to be on my own, make my own way, and be myself. Of course, accomplishing these goals is more than the compilation of many birthdays, and is often not easy. Yet multiple decades later, I now hold dear many values and viewpoints which make me–me! And the same is true for many of us, across all walks of human life. The opportunity to represent and guide your own life is an innate part of being yourself. 

When Dementia Takes Hold

This treasured aspect of humanity is impacted when dementia develops and takes hold.  Medical professionals often talk about Alzheimer’s disease (the most common form of dementia) being one of the most feared diseases because of this impact to “self”–self-representation and self-determination.  

I witnessed this first-hand, watching my grandmother deteriorate from Alzheimer’s disease. Like too many others, the disease slowly but surely removed the ability for my grandmother to represent herself. She could no longer talk and had no capacity to express herself–her wishes, views, or needs. My grandmother passed away after years of 24×7 care in different nursing homes which kept her alive, but sadly were not informed to customize their care to her wishes and needs.

Mother with dementia and daughter
Representing Ourselves Now

While we do not yet have a way to fully avoid the future possibility of debilitating dementia, we do have the opportunity to communicate our own wishes, views, and needs. We can represent ourselves now. The following resources are ways to communicate to both loved ones and health care providers: 

A health care directive for dementia

Developed by Dr. Barak Gaster via the dementia-directive.org and available for download from our site, this directive describes three levels or stages of dementia impact. For each stage, you may select from a set of three goals to communicate the type of care you would want to receive.    

A letter added as an amendment to a general health care directive

Created by author Katy Butler, and shared via the Conversation Project organization, this letter can be used as-is, or as a template and modified per your wishes. It provides a thorough listing of specific guidance for various care and treatment options when one can no longer represent oneself.

A dementia directive or amendment serves to clearly inform loved ones and health care teams.  And though currently neither is legally binding, those who are in a position to care for you will be enabled and encouraged to honor you by aligning future care to your views and wishes. Your own voice will be communicated and clear. 

To read more about this topic, please visit our website.

++++++++++++++++++++++++++++++++++++++++++++++++++++

Becky Oliver is a volunteer with EOLCCA.  Her professional life has been spent as part of Silicon Valley’s tech industry.  Outside of work, her personal passions include contributing to end-of-life causes, with a specific interest in the nature of care for the aging and those nearing end of life.  

 

Advance Directive: Part 2

For our fourth week in April honoring National Healthcare Decisions Day (April 16), we will complete this series by discussing two additional topics that can be added to an Advance Directive as addendums.  Both are important and worth discussing.  So, let’s get started.

POLST

POLST stands for Physician Orders for Life-Sustaining Treatment. In some states it is called a MOLST (Medical Orders….).  In California it is a POLST.  This is a document that is signed by you and your physician.  Most physicians will not be interested in signing this form with you until you are seriously ill enough that you might not be able to make medical decisions for yourself.  Once completed, this form should be kept near the patient and be readily accessible to emergency medical personnel, assisted living facility staff and other caregivers. The form should follow a patient from home to emergency services, and to a hospital or other facility. 

Dr. and patient signing paperwork

 

This document/form is unusual in that it is almost always bright pink (but it does not have to be).  Here is a link to California’s POLST form.  The purpose of this bright color is so that the form can be easily found in the home (generally on the refrigerator or on the back of the front door) by emergency personnel or others who need to know right away how to care for you in the event of an emergency. 

Dementia Directive

Dementia Directive is a communication tool. It provides a way to share your views with loved ones, to let them know what you would want in case they have to make medical decisions on your behalf.  Families often face making difficult decisions about their loved ones’ care. This directive can help them feel more sure that the decisions they are making are closer to what you, their loved one, would have wanted.

This directive is not yet considered a legal document.  It is purely an opportunity for you to outline what your preferences are should you become unable to make decisions for yourself due to dementia or other brain-related disease.

 

 

latino couple reviewing AD document

Many of us have clear ideas about the kind of medical care we would want if we developed advanced dementia. This directive can lessen the chances that you might get more medical care – or less medical care – than you would have wanted if you develop dementia.

 

We have more information on this topic here on our website.  There also are links to other organizations who have developed excellent Dementia Directive forms and are well worth perusing.

End of Life Choices California has trained, able and willing volunteers who are happy to walk through these forms with you, how they work, and how they might fit in your situation.  A simple phone call (760-636-8009) can put you in touch with one of these wonderful people.  

THANK YOU if you have taken the time to read our weekly blog posts about Advance Care Planning this month.  We did it because we think this is such an important part of planning ahead, and ultimately to have the end of our lives be exactly how we would want them to be.  For most people, the primary wish is for a peaceful, dignified ending.  These Advance Directive forms and addendums are a strong beginning to that process. 

Also, please know that we are completely volunteer-run and do not receive any funds from state or government agencies.  We rely on the kindness, compassion and generosity of our reading public and those families we can help when their terminally-ill loved one is trying to achieve a peaceful death.  Please open your hearts and send us a donation, no matter how small or large.  It all helps tremendously.