Category Archives: Family Caregiver

I Just WISH I Could UNDERSTAND what Mom is going through…

blackboard against red barn wood

Understanding someone with dementia is not easy.  What are they thinking?  How are they feeling?  Why are they acting the way they do?  These are fundamental questions that perplex professionals and quite simply leave families feeling confused, angry, guilty and helpless.

I have been a family caregiver and moved into the aging and dementia training space to help older adults and the growing numbers of families and professionals who are serving them.  Because I experienced for myself the helplessness that caregivers feel, I can relate well to family members who feel isolated, lost and desperately seeking answers.   Because I was a family member seeking help I know how little was out there 20 years ago.  Guess what?  There is still not enough support out there for families.  We’ve come a long way, but because the numbers of caregivers have swelled so quickly, this will remain a huge challenge in the years to come. Educating, supporting and providing resources for family members who are caring for aging adults, especially those who are living with dementia, is all of our jobs.

Short of a soapbox moment,  we need to get back to basics when it comes to dementia education.  We need to provide powerful, effective and feasible means to deliver education that will help professionals and families in understanding someone with dementia.  We must start with a foundational tool.

Our partner providers, those in elder care communities, home care, hospice, hospitals, community-based organizations, and others are consistently sharing with me their challenges – how to help families who are most often in crisis when they seek their services.   My discussions with leaders across the spectrum of care share a common theme.  Most, and I venture to say that is over 90% of families who are caring for someone with dementia, are in crisis when they transition to home care, an elder care community or reach out to a community-based agency for help. This is an alarming number of people who are exhausted, experiencing caregiver burnout –  physically, emotionally and spiritually, and dealing with overwhelming guilt, anger and hopelessness.

Back to basics in dementia education is greatly needed.  A tool that allows a family and professional to experience what their loved one is struggling with, and to then have someone to talk to that can walk them through the “why” of it all is enormously beneficial.  It’s experiential training at its core.  Stepping into their world for just a moment to allow caregivers to understand mom, or dad, husband, wife, resident or client is HUGE.

Quality education does not have to be complex.  In fact, simple, effective and feasible should be in the mind of everyone who leads education and training.  The next questions should be asked – is this providing a tool?  We need applicable tools that we can walk away with and immediately make changes in how we care for another person.  And these tools should not only improve the quality of life of the person we are caring for but reduce caregivers stress and make their jobs as care partners easier and more rewarding.

In short, we need strong foundational tools that are proven,  successful and work for everyone – from care providers, to their staff and to the families and residents/patients/clients they serve.

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who serve them.  She is the creator of the Dementia Live® Simulation and Empowerment Experience being embraced by caregivers worldwide.

 

 

 

When to Say Yes and How to Say No – Creating Healthy Boundaries

Caregivers are a unique group of people.  Naturally nurturing and compassionate, such empathetic traits can also lead to complex challenges.  Creating healthy boundaries is especially tough when you are the type of person that wants to help.  Learning when to say yes and how to say no is essential for caregivers to stay physically, emotionally and spiritually healthy.

Before I jump into my tips, tools, and suggestions, I’d like to share a story.   It relates to boundary setting and caregivers who merely do too much for their well-being.  For the sake of anonymity, I’ll refer to this person as Susan, whom I met with over the course of several years while facilitating a caregiver support group many years ago.  Susan’s mom, Jean, lived in her own home about 20 miles from Susan.  Jean’s husband had passed away five years earlier, and Jean never dealt with her grief and worked through the healing process. Her husband’s death left Jean depressed and angry.  She no longer socialized with friends and extended family, was not keeping up with responsibilities of home ownership, and was not addressing  her  health issues.  Jean was showing signs of cognitive decline.

Susan, who was her primary caregiver, had a demanding job which required some travel and many hours. She had talked to her mom many times about moving to a senior community, where she would not have the responsibilities of keeping up her house and would once again be able to enjoy the company of others.  Jean would not hear of it.

Instead, Jean relied solely on Susan to take care of home repairs and expected Susan to visit during the week and spend almost every Saturday with her.  Susan’s marriage was suffering, as her husband felt as if her mom had taken over their life.

Susan loved her mother but knew that she was collapsing from the weight of being everything to her. She knew that as long as her mom refused to move into a care community, that the situation was only going to become more overwhelming.

When we discussed boundaries, Susan broke down in tears.  She had read about the importance of creating healthy boundaries in relationships, and especially when one is caregiving for an older adult.  She didn’t know how to solve the problems she had with her mother.

Creating healthy boundaries allow us to take care of ourselves first so that we can enjoy healthy relationships with others.  When caregiving, it is especially important to step back and ask the following questions regularly:

  •  When I say “yes” to something that has been asked of me, how does it make me feel?  In other words, is saying yes causing stress or feelings of anxiety? If so, this is a sign that perhaps you are saying ‘yes’ to requests that you should be instead learning how to say ‘no’.
  • By saying ‘yes,’ what are you giving up? Is it time away from others that you love or maybe time away from being with yourself doing such things as reading, meeting with friends, exercising or other activities that you find joy in doing?
  • Does a “yes” put me in a position of having to choose between people whom I love and care for and does it make me feel conflicted?
  • What would happen if I say NO? Think about the consequences (or choices) that would have to be made?  Are you willing to lovingly say ‘no’ even though it may cause hurt feelings?  (I hope the answer to that is a YES!)

Creating healthy boundaries is not easy, and in fact, may cause hurt feelings.  It’s also essential to preserving your health and well-being. Caregivers cannot be all things to all people, no matter what the circumstance.  Moreover, if you continually say ‘yes’ when you want to say ‘no’ it will inevitably lead to enormous resentment with the person for whom you are caring.

During our time together, Susan did help her mom through the move to a senior care community.  Her mom wasn’t happy and continually played with Susan’s emotions by making her feel guilty for not being there as often and saying that she hated the food and they she hadn’t made friends.  Surprisingly (or not so!) when Susan talked with the staff, they told Jean seemed to enjoy many activities and ate at almost every meal. They did not see an unhappy resident.

With coaching, Susan was able to lose some of her guilt, spend more time with her husband, and learned to set boundaries when her mother tried to break down the fence.  After a fairly rough three months, Jean has acclimated to her new home, Susan and her husband have taken a trip, and Susan even learned how to set boundaries with her job!

Creating healthy boundaries is not easy, but it is essential and will be one of the best gifts you can give yourself and those whom you love.

Pam Brandon is President/Founder of AGE-u-cate® Training Institute and a passionate advocate for older adults and those who serve them.  She is the creator of the internationally recognized Dementia Live® simulation and empathy training program;  pam@ageucate.com

Why State Dementia Training Requirements Are Expanding

More than 5.5 million people across the United States are living with Alzheimer’s disease and other forms of dementia.  As the baby boom generation ages, the numbers are projected to grow at alarming rates.  Although state dementia training requirements vary greatly, overall requirements are expanding for certified nursing assistants, administrators, licensed practical nurses, health aides, personal care assistants and law enforcement and emergency personnel.

People living with dementia are living in a variety of settings – nursing homes, independent and assisted living communities, adult day centers and at home.  Professionals and families provide daily care, but beyond that, the community at large is touched by dementia.  Our police, firefighters, and emergency personnel come in contact with persons living with dementia.  Hospitals are treating more persons with dementia every day.  Social workers, too are helping a growing number of persons with dementia and their families.  Volunteers in a variety of settings are assisting persons with dementia and their families.  the need for dementia training is growing and state requirements are expanding to meeting the demands across the healthcare spectrum.

Until just a few years ago, state dementia training requirements were minimal, with the exception of a few states that were leading the charge, thanks to visionary leaders that saw the when those caring for persons with dementia had little or no training, the quality of care is greatly compromised.

Although states are deciphering best practices in dementia care, as we understand more about the needs of persons with dementia and how to best serve them and their families,  more defined training requirements and being implemented quickly.  Person-centered care practices, when integrated properly, can lead to a transformational change in the quality of care.  Quality dementia training leads to reduced care partner stress and equips caregivers with effective tools to better respond and meet the needs of persons living with dementia.

Improving state training requirements is incredibly important work as we prepare for the fast-growing numbers of people who will be entering long term care.   As we move forward, it is our hope that states are expanding training requirements for those who serve people in all settings, not just those facilities that market themselves as serving individuals living with dementia.  Adult day centers,  assisted living and independent living communities are all seeing a dramatic rise in serving persons with dementia.

When communities train all of their staff who interact with their residents, person-centered culture change is possible.  This includes dietary, housekeeping, maintenance, administrators and others.

And finally, states are looking at programs that are effective, feasible and lead to sustainable change.  This is not easy, as program implementation across large entities requires training providers who are adaptable, understand the needs of that organization, and are equipped to partner with organizations to effect positive change.

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who serve them.  She is the creator of the internationally acclaimed Dementia Live® empathy training program and led the development of Compassionate Touch®, a clinically proven skilled touch program for those living with dementia and at end-of-life.  Pam may be contacted at pam@ageucate.com.

 

 

 

Is Stress Reaction a form of Behavioral Expression in Dementia?

Stress Reaction is a term being used more often to describe communication in persons living with dementia.  Behavioral expression, too, is communication.  In a growing number of circles, the term behavioral expression is being replaced by stress reaction simply because behaviors sometimes leans toward being a negative descriptive of how persons with dementia express unmet needs.

Stress reaction is communication that is caused by changes taking place in the brain caused by the progression of dementia.  These changes can cause behaviors such as:

  • Aggression
  • Irritability
  • Pacing or wandering
  • Withdrawing
  • Resistance to care
  • Crying
  • Yelling

It is important for care partners to understand that stress reaction is always caused by an unmet need.  The most common causes of unmet needs can be categorized in the following areas:

  1.  Physical discomfort – perhaps caused by pain, hunger, thirst, fatigue or other barriers.
  2. Nonsupportive environment – this might include noise, chaos, inadequate lighting, temperature changes or excessive clutter.
  3. Unmet social needs – boredom, lack of sense of purpose, lack of companionship, touch deprivation are some examples.
  4. Ineffective care partnering – examples include unrealistic expectations from caregivers, distrust from either care partner or inappropriate care (care that is not conducive to caring for persons with dementia)

Now that we’ve discussed stress reactions from persons living with dementia, we must then look at stress reactions from caregivers.  Understanding that it is how we as caregivers react to their stress reactions, is a core value of person-centered caring practices.

We cannot control their behavior, but we can control how we respond to their behavior.   Healthy care partnering means we understand that they cannot change what’s going on in their brain.  Their behaviors or stress reactions are a response to unmet needs, and it is the care partner’s responsibility to put the puzzle pieces together to help their care partners meet their unmet needs!

A few basic guidelines for care partners to keep in mind when there is a stress reaction:

Allow adequate space (in other words, step back if necessary)

The rule is always safety first for both care partners

Observe the environment, and what can quickly be changed, such as taking the person from a noisy room to a calm atmosphere

Observe body language and facial expressions, especially if the person is non-verbal.  What might they be trying to express?  And care partners, observe your own body language and expressions, as your stress reaction can either cause the situation to escalate or de-escalate

Watch your tone of voice!  It’s amazing how a calming voice will immediately bring calm to another person.  And just the opposite is true.  If stress reaction is met with similar behavior, it’s almost always a certainty that the outcome will not be positive.

And finally, learn techniques and tools that can prevent stress reactions.  Touch, music, redirection techniques, companion pets or dolls and more can have amazing outcomes and are simple to implement with the correct training.

Pam Brandon is the President/Founder of AGE-u-cate® Training Institute, creator of the Dementia Live® Sensitivity and Empathy Training program and directed the development of Compassionate Touch® for persons living with dementia and end-of-life.  She is a passionate advocate for older adults and those who care for them.