Category Archives: Living with a Neurological Condition

This wonderful list of strategies was compiled by Elaine Book, social worker with the Pacific Parkinson’s Research Centre in Vancouver, BC, Canada, in July 2020. This list was shared at a recent WellMed Charitable Foundation teleconference that featured Ms. Book, in conversation with Parkinson’s caregivers. (There is little about this list that is Parkinson’s-specific. Nor is it specific to caregiving.)

Ms. Book’s list includes this quotation:

“Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.” (Vicki Harrison)

There are many good ideas here. The last one resonated with me:

Reframe the loss as a change, not an end to a relationship or ability or role. Notice what has changed and focus on what remains. It can be seen as the closing of one chapter and the opening of another.

Happy reading,
Robin

Strategies for managing feelings of loss and grief
by Elaine Book, MSW, RSW
Pacific Parkinson’s Research Centre, Vancouver, BC, Canada
July 2020

Keep a journal

• Writing out thoughts and feelings is an effective way to look at what is happening. Writing about your insights and reflecting on them can be empowering, can help you to find fresh opportunities and move in a new direction.  Sometimes writing about your losses can help you gain some emotional distance, make it more manageable and less frightening. Feeling the pain is healthier in the long run than denying the fears, anger, sadness, loneliness or resentment.
• If you are new to journaling, start with writing down a daily highlight or gratitude. Or use prompts like “What makes me angry or sad or scared” or “What have I learned about myself” or “I found it funny and endearing when the PWP …” or “The unexpected gift I received”. [PWP = person with Parkinson’s]

Establish goals for yourself

• Facing losses can leave you feeling out of control…try to counteract that feeling by setting goals for yourself like learning a new skill or taking a course or volunteering. Set up a plan that can work, one that is reasonable and rewarding.

Take action to stay healthy

• Eat well, exercise, laugh every day, take breaks, sleep, maintain spiritual connections, remain intellectually stimulated, socially connected, use stress management and relaxation techniques like breathing.

Mindfulness

• Grounding practices like yoga, meditation or even walks in nature help to pace yourself.
• Apps for mindfulness practice – www.headspace.com, 10%happier, Breathe

Surround yourself with those who feed you

• Be with people whose presence energize you and stay away from those who drain you.  Create a “psychological family “…. the people you turn to in times of crisis and celebration. This circle of support can go beyond family.  The people who are there for you in good times and bad are the ones who will be able to understand the losses of the caregiving experience. They can provide a healing hug. Also recognize the formal resources and support systems that are available to help you if your psychological family needs expanding.

Work together

With your loved one, address and come to terms with the losses and changes in function. A condition can bring you closer for having a shared experience.

Create something new

• New plans, new connections based on how your life is now. Look for ways to connect with the PWP as he/she is today. Seek out joy in your relationship with the PWP.  [PWP = person with Parkinson’s]

Reflection

• Think about past challenges in your life and how you navigated through them. Then use those experiences to remind yourself of your courage and strength and possibly use some of the same strategies again. What was helpful and what was not. Trust in yourself that you have the ability to meet the present challenge.

Reframe

• Reframe the loss as a change, not an end to a relationship or ability or role. Notice what has changed and focus on what remains. It can be seen as the closing of one chapter and the opening of another.

With the pandemic, I’ve been reviewing materials received in the past on the topic of resilience. This blog post is about a webinar in January 2019 on building resilience while living with Parkinson’s Disease (PD). The webinar featured the wonderful palliative care chaplain at UCSF, Judy Long. Though the webinar’s title includes “Parkinson’s,” there is nothing in Ms. Long’s presentation that is specific to PD. Several of the questions are about coping with PD but these questions (and their answers) relate to coping with any neurological condition.

In this webinar, Ms. Long notes that it is only when we notice feeling upset or threatened that we can make a choice about how to respond.  If we don’t notice how we feel we have little hope of making a choice of how to respond and will only react instinctively.  

Through a series of explanations and exercises, Ms. Long presents four obstacles to resilience and tools to overcome each of them through intention and practice.

Obstacles to resilience, or what gets in our way of bouncing back the way we want to:

1. Not noticing how we feel.
2. Believing the current circumstances don’t make sense, shouldn’t be happening or are meaningless
3. Believing I’m all alone and nobody else understands, or feeling isolated
4. Believing you are helpless and there is no skillful action you can take to change the situation

What can we do to counter these obstacles? There is an opposite to each of these obstacles.

1. The opposite of meaninglessness is what matters to you most or purposeful positive intentions.
2. The opposite of isolation is authentic connection with others.
3. The opposite of helplessness is realizing the choices you have.

Ms. Long offers exercises to overcome these obstacles.

The speaker makes some observations about caregivers:

Even though your inclination may be to handle difficult situations alone, if you do that all the time it is stressful both emotionally and physically and, therefore, unhealthy.  Caregivers tend to fall into this category.

Even when [the caregiving] is difficult and we feel exhausted, it makes a difference to our energy level to remember why we are caring and that it is based on love.  Burnout includes meaninglessness, isolation and helplessness…

Brain Support Network volunteer Denise Dagan listened to the webinar back in January 2019, and shared her notes. (Unfortunately the webinar recording is no longer available online.)

Robin

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How to Build Resilience While Living with Parkinson’s
Davis Phinney Foundation
January 15, 2019
Notes by Denise Dagan
Speaker: Judy Long, outpatient palliative care chaplain at UCSF

We all have resilience but we can always strengthen our resilience so we can sustain demands of caregiving or other stresses.

When we feel something is difficult there can be a sense that something is threatening us, like pain, exhaustion or other discomfort.  We may feel as though we need to fight the threat.  This is due to the fight or flight response, which is instinctive. The alternative is to freeze and not do anything.  There may be better responses that will help us bounce back to a more normal state, as opposed to feeling threatened.

A prime skill that will precede everything else, if you can notice that you feel threatened or upset, that noticing is the most important thing you can do because it allows you to make a choice about how to respond.  If you don’t notice how you feel you have little hope of making a choice of how to respond and will only react instinctively.

Obstacles to resilience, or what gets in our way of bouncing back the way we want to:
1. Not noticing how we feel.
2. Believing the current circumstances don’t make sense, shouldn’t be happening or are meaningless
3. Believing I’m all alone and nobody else understands, or feeling isolated
4. Believing you are helpless and there is no skillful action you can take to change the situation

What can we do to counter these obstacles? There is an opposite to each of these obstacles.
1. The opposite of meaninglessness is what matters to you most or purposeful positive intentions.
2. The opposite of isolation is authentic connection with others.
3. The opposite of helplessness is realizing the choices you have.  

Overcoming meaninglessness is positive intention — positive intentions for the good of others can be values you hold dear, like kindness, patience or love (giving and receiving). The most important thing to you may be your family or courage. There are many options, but it should make you feel positive and that you care about the wellbeing of others.

Exercise: Choose an intention each day.  Try this exercise more than one day to see how it works for you. In the morning, before you rise from bed, choose an intention and try to remember that intention throughout the day.  When you’re speaking with someone and begin to feel stressed (annoyed, etc.) use that as a cue that employ your intention.  See if that intention changes the way you respond to that person and in other situations throughout the day. At bedtime review if/when you remembered your intention throughout the day and how it improved the way your interacted with others.  Decide if you will keep with the same intention the next day or try another (kindness, patience, courage, etc.)

Exercise: Think of an interaction that will happen in the next day that will be challenging and pick a specific intention for that interaction that is positive.  If you hope not to get angry or annoyed, turn it around and intend for the other person to feel loved or that you are being patient, etc.

Overcoming isolation is authentic connection with others — connection is protection. This is true from the time of cavemen.  If we hadn’t connected as early humans, we wouldn’t have survived to modern times.

Many of us want to be alone when we are upset.  Sometimes, we need some alone time to process what is going on, how we feel about it and how to respond.
Even though your inclination may be to handle difficult situations alone, if you do that all the time it is stressful both emotionally and physically and, therefore, unhealthy.  Caregivers tend to fall into this category.

Exercise: Notice if you are going it alone too much of the time and make the choice to connect with someone else. Think about who you can bear talk to even though you are upset and make the effort to reach out to them for input and support.

Overcoming helplessness is to make a skillful choice. Ms. Long tells the story of a concentration camp survivor who emerged whole and developed a psychological theory of meaning.  Everything can be taken from a person excepting the freedom to choose one’s own attitude in any given set if circumstances and the capacity to act even.

Skillful choices you can make are positive intentions, connecting with others or this grounding exercise.

The psychology of positive thoughts is that even when we have a positive series of negative thoughts, we can overcome them with a series of positive thoughts. The benefits of positive thoughts is both emotional and physical.

Exercise: Toward the end of your day think back over the things you were grateful for.  Try to come up with three things.  Name it and say in your mind specifically what you are grateful for.  Jot down on a piece of paper each thing you are grateful for and why.  Go to sleep.  Repeat this exercise for at least two weeks.  At the end of that time reflect back and see if you notice positive things throughout your day, not just at night.  Where we place our intention is what we notice and how we act.

Example: I am thankful for my hot shower this morning.  I am grateful for the massaging way the water hits my back.

Example: I like my hot oatmeal this morning.  It was tan, lumpy, hot, sweet and lumpy.

Example: I am grateful for my husband/child.  Be specific:  My daughter gave me a big hug when I was feeling sad. I was grateful my husband brought the trash can behind the house.

Grounding Exercise: If you know thinking about your breath makes you nervous, you may want to skip this exercise. Extensively studies and found to bring humans into a calmer state of mind when our nervous system is stressed.
Direct your imagination to your heart area.  Place your hand over your heart to enhance the experience. On the in breath, notice that your chest expands.  On the out breath, notice that your chest deflates.   Pretend you can breathe in directly into your heart, as opposed to your lungs.
If your mind wanders, just notice that has happened and bring focus back to your heart and resume breathing into and out of your heart.

Questions-and-Answers

Q. I have early PD and my husband/care partner has early Alzheimers.  We don’t have close family and I have always cared for him.  We are in our mid-70s.  I am so tired.

A. People in early stages of memory loss can remain in the stage of mild cognitive impairment for quite some time.  The best way to encourage that is to have him continue to do as much for himself as possible, keep socially engaged, maintain your physical closeness and foster an intent of patience and care for each other.  When you do something that is beneficial for someone you care about you benefit, yourself, emotionally.  Part of the caregiving instinct comes from evolution of tribal and parental caregiving.  Even when it is difficult and we feel exhausted, it makes a difference to our energy level to remember why we are caring and that it is based on love.  Burnout includes meaninglessness, isolation and helplessness so these exercises counter burnout.

Q. How do you deal with the reality that PD is your future and will only get harder?

A. I am, by nature, someone who likes to look issues directly in its face.  A little information gathering helps me prepare and realize how it will get worse so you can prepare and plan ahead.  That may include some home remodel or relocation, for example.  Taking action to put steps in place can reduce stress. Alternatively, using the tips from this webinar will help you get through each day and life’s others heartbreaks that have nothing to do with PD.

Q. What about the role of a PD care partner who is more concerned with the illness than the person with PD?

A. My inclination is to meet with one, the other, or both partners one-on-one.  Not being in the room with these people to have a conversation about it, I will share how emotions work.  We need to understand how to meet difficult emotions.  It is hard to be around someone who is experiencing difficult emotions.  Try transparency: at a time when you don’t feel upset about this situation, try telling your partner that you would like to share with them at some point how you feel about having PD and have a conversation about it.

Some people find gathering information is useful.  What you do with that information can be practical and helpful and make them feel in control.  It can also be a way to avoid dealing with the emotions the other person is dealing with.

Q. As a care partner to my friend, I notice he/she (has had PD for 11 years) becomes childlike and needy when I’m around, but not so much when his aides are with him and I am not.  This co-dependence is exhausting.  How do I help him learn to be self sufficient?

A. Think about how you can tell the truth in a way that is kind.  You might say to your friend that you’d like to see if he/she might be able to do ___ on his/her own.

Q. What if the person with PD wants to talk about PD all the time and the care partner does not?

A. Try to redirect toward areas of resilience the person with PD can build for themselves.  Suggest some of the exercises in this webinar.  Do them together. Empathize with their feelings underlying their desire to talk about PD, but redirect to resilient skills or social activities to help them feel more emotionally strong and more healthy.  The gratitude practice can be the most beneficial for everyone, including those with PD.