Tag Archives: family caregivers

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

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

Why are my parents suddenly so stubborn?

The Big “S” word.  It comes up more often than you would think and for good reason.  Adult children who are in any phase of caregiving for their parents, even in the very beginning stages share their frustrations of their parents suddenly being stubborn.   Why is this happening?

Let’s think about the role reversal that is taking place, either gradually over time or suddenly due to a  change in physical or cognitive health.  This role reversal leads to confusion and is never a natural shift for adult children, spouses or other loved ones.  As difficult as this is for the caregiver it much harder for the care receiver.

What is actually happening and why does stubborn behavior from even the most agreeable of people send shock waves through the family?  Imagine if you will, what it might feel like to witness yourself the lack of independence taking place in your own life.  It might be in the form of having someone telling you that it’s time to stop driving, that someone may need to start helping you bathe, “helping” pay your bills or accompany you to regular doctor visits.

It doesn’t matter what the level is at which children, spouses or others find themselves in the position to help out, all of these point to one huge signal to the one needing assistance -loss of independence, decision making and privacy!  For older adults that have had a lifetime of child-rearing, careers, active lives of giving and nurturing others, imagine what it feels like to have someone ( a loved one no less!) tell you that it’s time to turn in the keys.

Like all behaviors, there is an underlying reason.  Underneath a stubborn older adult is someone clinging to what independence they can shelter for themselves, the fear of what tomorrow will bring,  and sadness for what they are leaving behind.

As families struggle with this stubborn syndrome, please step into the shoes of the person you are trying to help.  Kindness, gentleness and empathy go a long way in dealing with difficult life changes.  Family meetings that include the care receiver (if this is possible) is always advised.

Above all, caregivers should be educated and seek help from others who are traveling the same road.  Be prepared for this stubborn behavior to be a new normal, but also know that with the right approach, you can get through the hurdles together and get through this journey with strength and grace.

Pam Brandon is President/Founder of AGE-u-cate® Training Institute.  A passionate advocate for older adults and those that care for them, Pam is a dynamic speaker, trainer and facilitator and has worked with thousands of caregivers, older adults and hundreds of organizations to help others through the caregiving journey.  

www.AGEucate.com

 

Caregiver’s Bill of Rights – Words of Guidance and Hope

Families caring for aging adults have and will continue to reach unprecedented numbers affecting every corner of our society.   We MUST address the complex needs of this population who are the foundation of long-term care nationwide, exceeding Medicaid long-term care spending in all states (National Alliance for Caregiving and Overcare, March 2009).  Jo Horne, author of Caregiving:  Helping an Aging Love One created the Caregiver’s Bill of Rights. These are powerful and impactful words of hope and guidance for each and every person caring for a family member or friend:

I have the right . . . 

To take care of myself. This is not an act of selfishness. It will give me the capacity to take better care of my relative.

To seek help from others even though my relative may object. I recognize the limits of my own endurance and strength.

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 for myself.

To get angry, be depressed, and express other difficult feelings occasionally.

To reject any attempt by my relative (either conscious or unconscious) to manipulate me through guilt, anger, or depression.

To receive consideration, affection, forgiveness, and acceptance for what I do for my loved one for as long as I offer these qualities in return.

To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.

To protect my individuality and my right to make a life for myself that will sustain me in the time when my relative no longer needs my full-time help.

To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired older persons in our country, similar strides will be made toward aiding and supporting caregivers.

To ___________________________________________________
(Add you own statement of rights to this list. Read the list to yourself every day.)

Pam Brandon is President/Founder of AGE-u-cate® Training Institute and a passionate advocate for older adults and those that serve them.

www.AGEucate.com

www.caregiveraction.org

 

“Fragile- Handle with Care”.. Family Caregiver

AdobeStock_111421916Looking back to my years a family caregiver, I wonder if I’d worn a badge that read “Fragile – Handle with Care”,  it might have been easier for others to understand me.  Why I often had puffy eyes from crying, or scatter brained from sleep deprivation.  I can remember a certain period of time when I was issued a number of traffic violations…speeding through a school zone of all things (my children were both in elementary school at the time).  Thank goodness this was before cell phones.  There were times when I simply wasn’t myself.  I was emotional, physically and spiritually worn out and burned out.  Thinking clearly was often a challenge because I was overwhelmed.

The statistics are staggering.  According to AARP 2015 report, approximately 34.2 million Americans have provided unpaid care to an adult age 50 or older in the prior 12 months.  Nearly 1 in 10 caregivers is 75 years of age or older (7%).  These numbers are rising at alarming speed and will not slow down for many years.  

My 15 year journey of personal caregiving for my parents and 10 years of  professional work in the field of caregiver education continues to open my eyes to the very real challenges we face:

  • We have a public health crisis that is not being addressed quickly enough
  • Family caregivers continue to be in desperate need of education and support, especially those caring for loved ones with cognitive impairment
  • Most of our public agencies and community services are already stretched to meet the demands of providing services for older adults and their caregivers – HELP IS NEEDED FROM THE PRIVATE SECTOR
  • Faith Communities have enormous opportunities to minister to the aging adults and their families, but they need help and guidance in doing so

Families account for the lions share of caregiving taking place in this country (and around the world), yet studies consistently report that stress, fatigue, isolation, lack of education and support, understanding care options, finding respite services, and declining health are among the many challenges that loved one’s face.

For those of us passionate about helping these families better cope, find help, stay well (so that they can take of their loved ones) – we must work together for change.  I’m moved each time I have the privilege of talking with and helping a family.  Sometimes that is with education, many times it’s with a hug.  Always it’s showing someone that you understand and care.

Thank you to all we are able to work with in reaching out to families – understanding they are fragile and need to be handled with great care.

www.AGEucate.com

Pam Brandon is President and Founder of AGE-u-cate® Training Institute based in Dallas-Fort Worth.  A passionate advocate for family caregivers,  she leads a fast growing network of aging and dementia educators across the US and abroad and is the creator of the Dementia Live™️ Experience.