The New Global Symbol for Dementia

Alz Across America is proud to share this symbol for dementia that can be recognized around the world, with no language barriers!

Thank you Lori La Bey, www.alzheimersspeaks.com for making us aware of this symbol and all the amazing work you are doing to shift the "Dementia Care Culture." and promote Dementia Friendly Communities.    

The Global Purple Angel logo was designed to raise awareness around the world for dementia. Its purpose is simple:

• To raise awareness and education of all types of dementias.
• To show support for those dealing with all types of dementias; both those diagnosed as well as those that care for them.
• To remove the fear, isolation and stigmas associated with the disease.
• To become a global symbol for dementia that has no language barriers.
• To have the “Global Purple Angel” become as well known and accepted as the “Pink Ribbon” for cancer, allowing people to live with dignity.
• To provide an economical way to work in collaboration.

This purple angel symbol can be used by anyone who is raising awareness of dementia anywhere in the world. The symbol has been developed by people with dementia and carers, and is not connected to any established organization.

The purple angel symbolizes a guardian over those living with dementia, as well as their families and friends, but also as a helper to all those working so hard to raise awareness of dementia around the world.

Jane Moore, a carer from Camelford, and Norrms McNamara, who has dementia and was a driving force behind the creation of the first dementia friendly community in the UK, produced the original design. Lynette Richards and Jeff Talbot produced the global version. They own the designs, but have given permission for the symbol to be used freely by anyone who is raising awareness of dementia, as long as they get feedback about how it is used.

- Thank you Lori La Bey:  See more at: http://alzheimersspeaks.com/purple-angel-project

Lisa:  As I write this, the sun is out and it is a beautiful day.  It’s Valentine’s Day. The tree out front is in bloom and spring is in the air here in Southern California.  For me, it’s a day to open my heart, let it shine and be thankful.  I’m thinking of Gary and how the journey to his diagnosis was metaphorically the longest winter of our lives. We have now come through the darkest hour of our relationship together.  Several years were spent in bewilderment and fear of not knowing what was happening to the life we had built together.  Life was like living in quick sand and it just seemed like we couldn’t get a foot hold to shift directions.  In the last year, our relationship has come full circle and our commitment is stronger than ever.  Living in the present moment has never held so much meaning.  The present moment is all that we have and each day is to be treasured; even when it turns out to be a difficult day.  A friend whose wife has been affected by Early Memory Loss said recently, “We each need to take our situations and find a way to make lemonade out of lemons”.  How true.  Each day I learn more about the strengths that I didn’t realize that I have and opportunities for growth whether I like them or not.  I can say that today I know that I have a pretty darn good idea who my family and friends are; and that is very important on this journey.   Today I can say that Gary and I have triumphed in love and we are learning to make our way forward with as much dignity and grace as we can possible muster, both as individuals and as a couple.  “Happy Valentine’s Day Gary, I love you!  We get to greet each new day with “I love you”. I want you to know that I will be here for you every step of the way.   I appreciate and respect all the things that you do for me and I still lean on you in more ways that you know”.      

Today we can acknowledge that we are finally able to bring our own experience of this metaphoric winter into a light that may help others find their way. It’s time to celebrate this new season and new beginning in our lives. Gary and I both feel that if we can reach out to others affected by Early Memory Loss to help to build unity, awareness, support and connection; we will have made a difference.   

Welcome the spring. 

LB

The Care Partner’s Pledge 1. I am willing…to take care of myself. This is not an act of selfishness. 
It will give me the capability of taking better care of my loved one.

2. I am willing …to seek help from others even though my family and 
friends may object. I recognize the limits of my own endurance and strength.

3. I am willing…to maintain facets of my own life that do not include the 
person I care for, just as I would if he or she were healthy. I know that 
I do everything that I reasonably can for this person, and I have the 
right to do some things just for myself.

4. I am willing…to express my emotions, get angry, feel sadness, and 
express other difficult feelings.

5. I am willing … to reject any attempts by my loved one (either 
conscious or unconscious) to manipulate me through guilt and/or depression.

6. I am willing…to receive consideration, affection, forgiveness, and 
acceptance from my loved one for what I do, for as long as I offer 
these qualities in return.

7. I am willing…to take pride in what I am accomplishing and to 
applaud the courage it has sometimes taken to meet the needs of my loved one.

8. I am willing…to protect my individuality and my right to make a 
life for myself that will sustain me in the time when my loved one no 
longer needs my full-time help.

9. I am willing…to expect and demand that as new strides are made in 
finding resources to aid physically and mentally impaired persons in 
our country, similar strides will be made towards aiding and supporting 
care partners.

10. I am willing…to honor that I am a whole and complete person who is 
proud to be a care partner for my loved one affected by Alzheimer’s in 
order to help remove the stigma attached to this disease.

"This pledge can be found by clicking on the circle on our Home Page"

Revised by Lisa Bricker, Adapted from the book, Care Giving: Helping an Aging Loved One, by Jo Horne, published in 1985 by the American Association of Retired Persons.

Lisa: There are many people in our society that are caregivers because they truly have a passion to provide care for those in need.  Many have chosen to make their living this way.  I admire, salute and respect these people. I believe that they have angel wings and a very special purpose on this planet.  However, that is usually not the case in caring for a loved one and in most circumstances; the need comes on top of our day job and is not a paid position.  Memory Loss usually happens over time, and you will hear me say over and over: “there is no road map on this journey” and there is no predictable pattern to follow.  It can come on quickly or very slowly, each person’s situation is different.   

The journey of living with someone with Memory Loss is a random and challenging trail to traverse.  Our daily lives become unpredictable and it can uproot the delicate balance of our lives.  Everyone’s experience and family histories are different.  The dynamics of each relationship are different, but the one common denominator that we all have in providing for our loved one is that we need to take care of our own well being first.  The metaphor of being on an airplane in an emergency with a child is so true:  “If we don’t place the oxygen mask on ourselves first, we won’t be able to help anyone else.”  It’s also easier said than done.  Taking care of ourselves is a common topic in our support group and there is never an easy answer and many times, we say “yeah, right”.  However, it is still our responsibility to care for ourselves and those around us.  After all, the best medicine is to stay healthy.  I have been the daughter of a father with a terminal illness, I have been the daughter of a mother with vascular dementia (small strokes in the brain) and I AM now the wife of someone who has been diagnosed with Alzheimer’s. As a daughter of someone who had dementia, the role was vastly different than having a life partner with dementia. My role in caring for my mom was much clearer. I remember saying to myself, “Okay, I need to be the parent now and you are now like my child”. It was also a role that I was able to share with my sister Vicki.   

When your life partner has Memory Loss, the changing roles can be very confusing. The person who has been your friend, partner, lover and confidante is no longer available the same way they used to be. There are times that feel like they always did and you naturally lean in and enjoy that relationship that is so wonderfully familiar. Then, there are the times when it is clear that it's not the same and the cloud of sad reality is once again overhead with the reminder of how the cruelty of this disease affects all who are involved. A strange feeling of loneliness and isolation can come into play because you just can’t have the depth of the conversations that you used to enjoy together.  Those with Early Memory loss begin to lose their critical thinking skills and their executive functions (such as the ability to plan ahead or make decisions).  Many of the conversations we have need to be repeated over and over again.  I call it the new version of 20 questions; the same two questions 10 times.  It can be just as frustrating for Gary as it can be for me. I have learned to just let it roll, but we all have our moments!  It certainly helps to be patient, loving and kind. It also helps to keep your sense of humor! 

I’m going to introduce the term Care Partner to see if it is a role that may fit for you. Please feel free to engage in the following exercise so you can “try on” both roles:  Take two blank sheets of 8 ½ x 11 paper.  On the first sheet write in large letters “Caregiver” and on the other write “Care Partner”.  Place both sheets of paper on the floor about 18 -24 inches apart.  Stand and look down at the first sheet of paper and notice how that feels, take it in.  What do you notice? Take your time.  Now move over to the second sheet with the words “Care Partner”.  Notice if there is a difference in how you perceive the two terms.                         

The Alzheimer’s Association uses the term “Care Partner” and I have absolutely loved the term since the moment I first heard it. It’s a word thing for me and it literally feels different if I refer to myself as Gary’s Care Partner.  I see it as an empowering metaphor and I use it to self manage my perspective to see both of us as “whole and complete”.  It is a very subtle distinction in how I view my role in our ever shifting relationship.  Try it on and see what you think.  For me, the word caregiver isn’t right for me in this role with my husband; my partner.  The word caregiver itself makes me feel more depleted; as if I could give and give without being able to care for myself.   As his partner, I feel that I can keep both of our interests in better perspective and I am compelled to meet other care partners that share this journey. I am Gary’s Care Partner and I have chosen this role with love, dignity and honor.  We may not have chosen these circumstances, but we can make choices that will help us to remain as healthy and whole as possible throughout this journey.  Caring for a loved one can be a tricky role.  How do you see your role?   What choices are you making for yourself?  How can we help each other?
LB

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Gary: It’s just really weird – this human condition, that is…one day you feel like a million bucks and the next you feel like you fell into a deep well that’s about to dry up in the drought you didn’t know was coming. That’s how I’ve felt the last few days. I happened to have picked up a book that someone lent to Lisa and I read a story written by a Care Partner on someone more advanced with Alzheimer’s.  A portion of the account hit me hard. It described the mental decline of their loved one due to Alzheimer’s and the point where the disease completely took over this individual’s mind and body.

Of course I always knew I would die some day, but I’d hoped it would be something sudden, like the aortic aneurism that killed my mom – she didn’t have time to know what hit her. And of course that could always still happen to me, but my mom was 84 years old and if I live that long I will most likely not know who I am by then unless some miracle Alzheimer’s cure is discovered.   Anyway, sorry to be Debbie Downer, but I know depression often comes up in conversations about Alzheimer’s and other Memory Loss, and it can occur to both the Care Partner and the Memory Loss “victim”.

If you want to learn more about Alzheimer’s, here are some facts compiled by the Alzheimer’s Association regarding the disease:

1.      Alzheimer’s is the sixth leading cause of death in the United States.

2.      More than 5 million Americans are living with the disease today.

3.      1 in 3 seniors dies with Alzheimer’s or other form of dementia.

4.      In 2012, 15.4 million caregivers provided more than 17.5 billion hours of unpaid care, valued at $216 billion.

5.      Nearly 15% of caregivers for people with Alzheimer’s or another dementia are long-distance caregivers.

6.      In 2013, Alzheimer’s cost Americans over $203 billion, and that number is expected to rise to $1.2 trillion by the year 2050.

Let’s hope and pray that a cure can be discovered before the Baby Boomer Tsunami comes.

Like I’ve said before – I want to be part of the solution, not part of the problem, so I hope to be a future candidate for medical trials designed to test new medications which may cure or stop the progression of the disease.

P.S. For those who are interested, below is a link to a site that discusses how to tell when memory problems may signal Alzheimer’s or other indications to seek help:

http://www.caring.com/articles/memory-worries

GB
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