In November 2020, the Houston Area Parkinson Society (HAPS) hosted a day-long conference aiming to address the specific needs, challenges, and realities caregivers encounter every day. The first talk focused specifically on coping as a caregiver. The presenter was Kathleen Crist, social worker and executive director of HAPS. She offered tips to prepare for caregiving, find success, and foster sustainability. Kathleen discussed how to recognize unhealthy levels of stress and burnout. Additionally, she addressed how to manage these feelings, both for the sake of your own health as well as the person you’re caring for.
The talk is around 40 minutes long, can be viewed via the HAPS YouTube channel.
Note: the entire conference is 5 hours; Kathleen’s portion lasts from timestamp 3:25-43:25.
If you’d rather read than watch, my notes are below.
– Cassandra
Coping While Caring
November 14th, 2020
Webinar hosted by Houston Area Parkinson Society (HAPS)
Speaker: Kathleen Crist, LMSW
Summary by Cassandra Irizarry, Stanford Parkinson’s Community Outreach
Being a Caregiver
- Caregivers are typically family members or friends who provide important physical, practical, and emotional support
- The role of a caregiver will often vary depending on the situation and will change over time
- Caregiving can be both rewarding and challenging
- Caregivers should remember that taking care of themselves is an important part of providing care for a person with Parkinson’s
- It is important for caregivers to be proactive to avoid feelings of being overwhelmed and to avoid caregiver burnout/fatigue/burden
Understanding Caregiver Burden
- Caregiver burden is a multidimensional response to the negative appraisal and perceived stress resulting from taking care of an ill individual
- This includes the overall impact of the physical, psychological, social, and financial demands related to caregiving
- What we know:
- Acute stress saves lives
- Chronic stress has negative consequences on health
- Factors that affect stress:
- Perceived high burden
- Length of time and amount of caregiving
- Behavioral issues on the part of the person being cared for
- Social isolation
- Poor coping strategies
- Role change
- Unmet needs for respite
- Signs of burden:
- Denial of the effects of the disease
- Anger at the disease of loved one
- Social withdrawal
- Anxiety
- Depression
- Exhaustion
- Sleeplessness
- Irritability
- Lack of concentration
- Health problems
- Why understanding caregiver burden is important:
- Can lead to isolation, withdrawal, and inappropriate coping mechanisms
- Can result in cognitive decline, depression, and reduced quality of life
- Creates greater susceptibility to illness and diminished immune response and higher mortality rate
- Can lead to a greater risk of abuse or neglect of the person being cared for
Coping Essentials
- Educate yourself on the disease
- Knowledge is power
- Learn all you can from credible sources
- Don’t overwhelm yourself
- Use this to improve communication with the physician or others when needed
- Build a team you can work with
- Find a physician you can partner with
- Think outside of the neurologist box– who else is a member of the team?
- Find ways to communicate that meet your needs
- Be honest
- Adjust your expectations
- Set realistic expectations about yourself and what you think caregiving should look like for you
- Know yourself and accept your strengths and limitations
- Be realistic about the situation and the person you are caring for
- Is doing everything by yourself reasonable?
- Accepting help is not failure
- Be prepared
- Have some type of plan so you aren’t always worried
- Work to avoid crisis situations
- Have a contingency plan
- Get organized
- Write down important stuff
- Implement legal and financial planning early or with any significant change
- Contemplate making promises
- There is no way to predict the future
- We often make promises to avoid uncomfortable conversations
- Promises are rarely in anyone’s best interest; they can complicate the decision-making process later on
- Prioritize your own physical and mental health
- Make and keep your doctor appointments
- Be honest with your physician about how you are feeling
- Seek additional help from mental health professionals
- Join a support group
- Consider separate bedrooms
- exercise
- Make time for yourself
- Find the time- put it on your calendar or add it to your schedule. The primary caregiver must take time off from giving or supervising care
- Maintain your own interests- incorporate joyful activities
- Learn to enjoy time alone
- Know the boundaries
- Consider your needs when making decisions- it’s okay to think about yourself
- Be honest and communicate. Don’t feel like you have to apologize! Learn how to say no to unrealistic demands or requests from others
- Ask questions: Is this helpful? Is this necessary? Am I overstepping?
- Recognize grief
- The grieving process often begins at the time of diagnosis
- It may be subtle, but can be intrusive
- Can be complicated by ongoing change and the need for adjustment
- Grief could be related to:
- Perception of life-altering diagnosis
- Noticed changes in your loved one’s physical or cognitive function
- Loss of future plans
- Limitation of freedom
- Change in identity
- Anticipatory loss
- Be flexible
- Be ready to re-evaluate your situation on a regular basis (daily or hourly). Parkinson’s is a progressive disorder and change is guaranteed
- Be open to exploring the things that may not have worked in the past
- Be willing to accept help, even if the help isn’t exactly the way you would have done it
- Find things that work
- Talk to others about their experiences and borrow their ideas
- Be creative
- Make use of resources that are available
- Embrace your resilience
- Change your self-talk to positive affirmations about all that you’re able/have accomplished
- Reflect on the past
- Identify your strengths
- Lean into resources
- Focus on the things you do well
- Ask yourself- what have I done that I feel good about?
- Don’t dwell on the mistakes you make- admit them, learn from them, move forward
- Don’t compare yourself to others- everyone is unique
- Nurture positive relationships
- Build your support system
- Find people who have positive energy- it’s contagious
- Make time
- Avoid becoming isolated
- Identify things you need help with
- Create a “job description” of all the things you are responsible for and look for opportunities for people to help- it’s okay to employ help if needed
- Accept help when it is offered and when it is helpful
- Enlist the help of the person you are caring for
- Give back through empowerment
- Encourage responsible independence
- Find safe things for the person with Parkinson’s to do that allow for a sense of accomplishment and purpose
- Reduce feelings of being left out or loss of control and reduce behavioral responses as a result
Who copes best?
- Those who can find the balance between self-care and the care of another person
- Those who can adapt to a new normal
- Those who avoid self-medicating
- People of faith
- Those with a good support system
- Those with just enough money
- People who have a highly developed sense of humor
Main Takeaways:
- Your being is more important than your doing
- Be proactive- the sooner you start, the better
- Build your skills and use your tools
- Find ways to eat, sleep, and be merry
- Practice patience and forgiveness
- You are not alone.