Category Archives: Family Caregiver

Compassionate Touch®, Family Caregiver, Senior Care Professionals, The Faith Community

How Care Partners Can Embrace Wellness and Joy

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I was privileged to speak yesterday to the Dallas Area Parkinson’s Society (DAPS)  about how care partners can embrace wellness and joy.  For persons living with Parkinson’s Disease and other neurological conditions, finding wellness and joy in everyday life can be challenging and elusive at best.  I know this first-hand, as my mother lived with Parkinson’s Disease (PD).  Speaking from experience as her partner in this journey, my words of wisdom for embracing wellness and joy encompassed some simple steps.

  1.  First, pat yourself on the back for the bravery and courage it takes to face PD.  It’s not always a friendly companion.  I love the hummingbird as a symbol of tireless joy and accomplishing that which seems impossible.  Care partners remember every day how special you are.
  2. There are plenty of difficult obstacles in your path, but don’t allow yourself to become one of them.  Accept your faults and imperfections and move on with.  Those who linger on imperfection will never experience wellness or joy.
  3. Be like the sun,  and shine even if no one ever thanks you for it! Expecting of others is almost always a road to disappointment, so shine your light if for no one else but yourself!   Others will see it, I promise!
  4. Live for today and only today.  We spend far too much time worrying about what could happen tomorrow and missing the precious moments that this day brings.
  5. When life is sweet, say thank you and celebrate;  when life is bitter, say thank you and grow.   We’ll be better people for embracing both as a gift.
  6. Do all in your power to reduce stress.  If you are getting on your own nerves, it may be time for re-grouping!  Stress affects our physical, social, emotional and spiritual well being.  Learn ways to cope with and reduce stress such as:
    • Practice deep breathing throughout the day.  Fully fill those lungs and then a long, slow exhale through the mouth.  Deep breathing reduces stress, improves posture, relieves pain and boosts energy, among many other health benefits.
    • Keep moving.   When you don’t feel like moving do it anyway.  Your body, brain and well being will thank you.  Find exercise groups specifically for PD.  You’ll have the added benefit of connecting with others while improving your balance, energy, and stamina.
    • Laugh…often!  Laughter changes the chemicals in our brain and makes us feel good all over.  And it’s okay to laugh at ourselves.  In fact, you might start there!
    • Get creative.  Research tells us that persons living with PD often have more creative brains.  Think about this.  You have to find ways to do things differently.  So start a new creative adventure and embrace it.  You might just surprise yourself!
    • Connect with others.  Intentionally hug and touch (all brain boosting, chemical changing things happen when you touch!).  This will add meaning to your life that has immeasurable benefits.
    • Embrace the Journey.  It was not what you had planned, nor one you would have chosen, but it’s yours.  Sweet, precious moments of joy, happiness, and wellness will come out of this practice.  You will enrich your life and the lives of those around you.

Pam Brandon is the President/Founder of AGE-u-cate® Training Institut and a passionate advocate for those living with Parkinson’s Disease and their care partners.  She feels blessed each day for the Parkinson’s journey that she and her mother Jeanette shared for almost 10 years.   

The Dallas Area Parkinson’s Society is celebrating almost 40 years of impacting and improving the lives of those affected by Parkinson’s Disease.  The work they do and others across the country is helping to create transformative change.

http://www.AGEucate.com

http://www.DAPS.us

 

 

Faith Community, Family Caregiver, Senior Care Professionals

How Can We Lovingly Embrace the Ending…Tips for Families

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What is a harder conversation topic with elderly parents – money or death?  If you guessed death, you get a gold star.  Why do we find it so very difficult to discuss the inevitable?  Surely we’ve all come to grips with the fact there is one thing certain about life and that is death.  We can embrace the ending by learning to embrace the life that we still have with our loved ones until the times comes when they are no longer with us.

Often it is not death that frightens people but the process of death.  Will there be pain, suffering and will it linger?  Fear of the unknown often is what ties us up into a pretzel of NOT wanting to talk about the ending.  What if we could learn to open up conversations so that everyone could be more prepared for the unknown, more accepting of death itself, and in turn make the process of dying a compassionate and loving experience?  Sadly, too often I see insecurity indecisions and pain overtake what could be a sweet time of compassion, filled with memories in itself.  Memories to embrace and treasure.

Most families have a considerable amount of unfinished business in this arena.  Here are some tips on how to open doors of communication, come to grips with what some call a “long goodbye”, especially those living with dementia or other chronic illness, and certainly lastly how to make the goal of acceptance and compassion be first and foremost in all planning, decision-making, and conversations.

  •  Make your wishes known.  That means we listen to our loved ones, preferably long before we have to make difficult decisions for them.  I want to interject here that we all need to understand that we should be guided by Plans A, B, and C – understanding the Life Plan A almost never is a reality.  That said, as care partners and families we do our very best to fulfill those wishes, but many circumstances may make that impossible.  Far too many times I’ve heard promised made to loved ones that they will be able to pass at home.  When the time comes, and that is not able to be fulfilled the family member feels horrible guilt.   Remember, we should be open and honest in lovingly expressing that we will do all we can to fulfill their wishes, but that it may not be possible for a number of reasons.
  • Spend more time embracing the moment of the ending rather than funeral plans.  Why is it that we agonize over what songs will be sung and flowers delivered – when our loved one needs our compassionate hand to embrace and hold at this moment?  Far too long we have gotten priorities a bit confused would you agree?  What if we put that energy and emotion into what can be embraced int he here and now?
  • Remeber that one’s feelings and emotions remain intact, although declining, until the end of life.  Response to touch, expression, love, music, even nature can have profound effects on the dying person.  Talking “around” a dying person is as much a sign of disrespect as it is a sign that they’ve been dismissed as a person.

“Our ultimate goal, after all, is not a good death but a good life to the very end.”
― Atul Gawande, Being Mortal: Medicine and What Matters in the End   

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who care for them.  She is co-creator of the Compassionate Touch® program for end-of-life care.  www.AGEucate.com 

Dementia Live, Family Caregiver, Senior Care Professionals

Parkinson’s Disease and Dementia – What you Need to Know

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Eldercare is becoming more about caring for those with dementia.  Because our fastest growing segment of the population are those 85 and older, it correlates with the rise in people living with dementia.  In fact, one in three people age 85 and older are living with some level of dementia.   There are over 1 million Americans living with Parkinson’s Disease and over 10 million worldwide.  This number is also rising with the increase in longevity.

According to the Alzheimer’s Association, Parkinson’s disease dementia is a decline in thinking and reasoning that develops in many people living with Parkinson’s at least a year after diagnosis. The brain changes caused by Parkinson’s disease begin in a region that plays a key role in movement, leading to early symptoms that include tremors and shakiness, muscle stiffness, a shuffling step, stooped posture, difficulty initiating movement and lack of facial expression. As brain changes caused by Parkinson’s gradually spread, they often begin to affect mental functions, including memory and the ability to pay attention, make sound judgments and plan the steps needed to complete a task.  About half of people living with Parkinson’s Disease have dementia.

Commonly reported symptoms include changes in memory, concentration, and judgment; trouble interpreting visual information; muffled speech; visual hallucinations; delusions, especially paranoid ideas; depression, irritability and anxiety; and sleep disturbances, including excessive daytime drowsiness and rapid eye movement (REM) sleep disorder.

Because Parkinson’s is such a highly complex disease, caregivers may often find that dealing with dementia symptoms are even more complex due to many other neurological effects of the disease.  It’s important that caregivers pay attention to declines in cognitive condition with their loved ones.  Noting behaviors and addressing these with their healthcare professional may help in determining if drug alterations may alleviate some of the dementia symptoms.

Care Partners for those living with Parkinson’s face many challenges due to the nature of the disease itself.  When cognitive decline becomes part of the mix, it can lead to extreme stress and anxiety.  Seeking education, support and resources are critical for care partners, as early as possible, is critical for families especially the primary caregiver.

Here are some resources that may help caregivers get started in learning more about dementia and Parkinson’s Disease.  I encourage finding local support groups to attend as these are often valuable in connecting with others, learning new tools to cope and understanding local resources.

www.parkinson.org

www.davisphinneyfoundation.org

www.michaeljfox.org

Pam Brandon is President/Founder of AGE-u-cate Training Institute and passionate advocate for older adults and those who care for them.  She is a 10-year care partner for her mother who lived with Parkinson’s Disease and has devoted many years to helping families live well with PD.  

www.AGEucate.com

Aging in the Workplace, Family Caregiver, Senior Care Professionals

The Fear of Dementia and How We Must Redirect our Thinking

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I had a few “Aha” moments this past weekend that made me realize just how prevalent the fear of dementia is in our society,  and how we must redirect our thinking in order to transform how we look at Alzheimer’s and other forms of dementia.

There are two sides from which this fear is bubbling.  The first is the 10,000 boomers a day who are turning 65, often seeing their parents or other loved ones cognitive decline and living with a halo of terror that this might happen to them.  The other is fear of the unknown by caregivers, families, and society.  By this I mean the fear of how to communicate with some who has dementia, the fear of caring for them properly, fear of their behaviors.

One of my “Aha” moments this weekend was listening to a couple – care partners – both talking about their journey with dementia.  The husband who is living with Alzheimer’s Disease (AD) talked about his lifestyle.  He exercised,  was physically active, maintained a healthy weight and diet, had a college degree, maintained strong social connections.  He checked off everything on the list that we are told may stave off dementia.  Yet he was diagnosed in his 60s with Alzheimer’s disease.  Living now 8 years with AD, he spoke to a crowd and with the help of notes and a few small prompts from his wife communicated his heartwarming story and message about still living life and being able to live it with joy.

I’m one of the baby boomers who witnessed two parents with dementia – one from Alzheimer’s Disease and another from Parkinson’s Disease.  My journey certainly did change my life from caregiver to activist.  I suppose there are times when I think about what my future could hold, but in the meantime – I do all I can to take care of myself.  I pay attention to my physical, emotional and spiritual health and all that encompasses those goals.  My mission is to help other caregivers through their journey from fear to transformation.  While it’s not easy, I am living proof that it can be done, and I’ve seen hundreds and thousands of others do the same.  Facing their fear by redirecting their thoughts and actions.

The other fear is one that is even broader, more serious to society’s acceptance of dementia, and requires urgent attention from stakeholders in this arena.  That is the fear of the unknown.  My other “Aha” moment this past weekend was in talking to the Senior Adult director at my church.  She told me how her well-meaning volunteers visit members of the church in care facilities and those who are home-centered.  They often become frustrated because they don’t know what to say or how to talk with someone who has cognitive decline.  Sadly, because they don’t have the tools to overcome their fear they chose to serve in another ministry.

Family and professional caregivers, employers, those who serve in retail, banking, airports, financial and insurance services, customer service industries need dementia awareness training and even more so, need to be empowered with tools to better understand, communicate and compassionately guide and care for the explosive growth of persons living with dementia.

Fear comes from not knowing what to expect and not feeling you have any control over what’s about to happen.  Awareness, education, and training can overcome fear.

I’m thankful for being a part of this movement to help others transform thoughts, feelings, and actions about and for those living with dementia.  By doing so, my concerns about my future with or without dementia are thwarted by the fact that I am confident that the future will continue to improve for those living dementia, their care partners,  families, and most importantly society’s stigma about dementia will be transformed.

Pam Brandon is President/Founder of AGE-u-cate® Training Institute and a passionate advocate for older adults and those who serve them.  Pam is the creator of the internationally acclaimed Dementia Live® Simulation Education and Training Program.  

www.AGEucate.com