“Caring for Someone with Parkinson’s Disease” – Speaker Notes

“Caring for Someone with Parkinson’s Disease” – Speaker Notes

WellMed Charitable Foundation today hosted a teleconference on “Caring for Someone with Parkinson’s Disease (PD).”  The speaker was Elaine Book, MSW, clinic social worker for the Pacific Parkinson’s Research Centre at the University of British Columbia in Vancouver.  She addressed some of the challenges unique to PD caregiving, by stage of PD.  She also talked about management of caregiving responsibilities and self-care.  Plus there were good tips about communication.  We listened to the teleconference and are sharing our notes. 

WellMed offers frequent conference calls on various caregiving topics.  You can check out their August 2020 calendar and find the recording of today’s teleconference in about week on their website.

For additional resources on PD caregiving, see the Stanford website.

These are notes from the talk.



Caring for Someone with Parkinson’s Disease

Teleconference hosted by WellMed (Caregiver Teleconnection)

Speaker:  Elaine Book, MSW

August 5, 2020

PD is a “boutique” condition.  It’s an individualized condition — both with symptoms and how it impacts the person’s life.

New symptoms pop up that change the situation.  Then there’s stability for awhile.

Caregivers can find the non-motor symptoms more challenging than the motor symptoms.

Learn about symptoms and available treatments.  Example – “husband no longer likes golf.”  This could be due to apathy and depression.  But it seems that people don’t know this.  So those families may be missing out on good treatments.  Tap into your neurologist and healthcare team.  Plus there’s info on the web.

PD is a family affair.  Affects everyone in the family, whether you are the primary caregiver or not.

With covid, we are in this together.  Differently but caregivers.

Lots of terms:  caregivers, care partners, carers, partners to those with PD, etc.

At the time of diagnosis and at the early stage, emotional support of person with PD and caregiver is important.  Coming to terms with diagnosis.  How is this diagnosis affecting daily life and future planning?  (Some genders are more proactive; not staying in denial.)

In the middle stage of PD, more unpredictability and fluctuations with symptoms.  The person with PD may have more apathy, depression, anxiety, shame, and cognitive issues.  The load on the caregiver increases.  More emotional support may be required for the person with PD.

In the advanced stage of PD, there can be speech and swallowing changes.  Changes in independence.  Other symptoms can be present — dementia and hallucinations.  The caregiver’s role is to create meaning in life for the person with PD and the caregiver.

Consistent themes, regardless of stage, are loss and grief.  Losses – cognitive function; independence; financial situation; future plans

“Sometimes it’s OK to not be OK.” 

See article titled “That discomfort you are feeling is grief.” 

Ideas for coping with loss and grief:

  • keep a journal to record thoughts, feelings, and insights.
  • establish goals for self to give yourself a feeling of control.  (Examples – volunteering, take a course)
  • create something new — new plans, new connections.  New ways to connect with the person with PD to find joy.
  • reflection.  How did you navigate past challenges?  Remind yourself of the courage and strength you used in the past. 
  • re-framing the loss as change, not as an end, can be helpful.  What chapters have opened?  What things are still present?

[Editor’s note: Ms. Book’s list of strategies for coping with loss and grief are posted here]

Caregiver self-management:  (not specific to PD)

  • Be open to other sources of emotional support (from friends, family, support group).
  • Know what you can do and can’t do.  Be true to yourself.  (Example – caregiver said she can’t be a nurse and can’t be a 24×7 caregiver.)
  • Bring in help when you need it.  This may be more or less than someone else’s needs.  You have your own recipe. 
  • Evaluate your strengths.  Use the strengths list
  • Get practical support (from home care agency, adult day care, respite, etc). 

For practical support, you may have to be creative with this during the time of covid, given reduced availability.  Example – tap into your support group for a “share the care” model.  (Provide a meal in compensation for completing paperwork.)

Support groups are good for emotional support and practical ideas. 

You can learn about life hacks for person with PD from support groups.  Examples – liquid soap (rather than bar soap), satin sheets, GPS tracker (for when person with PD goes walking), alarm mat at the side of the bed (to alert caregiver), condom catheter.  The European PD Association website has a list of life hacks.  [Editor’s note:  couldn’t find! ]

It is hard to ask for what we need.  A lot of times other people don’t know.  Change your language if that helps you ask.

Honest communication about how PD affects everyone in family.  PD exists on top of existing pattern of relationship within the family — both good and good.  Approach PD through the lens of mutuality:  we will focus on PD together.

Timing is everything with PD.  Pick the right time of day to have a conversation.

Choose one topic at a time.  Examples – handing over finances, driving, medication management.

Make a joint list of symptom changes before seeing the doctor.  Share concerns with “I” statements.  “I am concerned about….” when speaking with doctor.

Focus on the benefits of having help rather than the losses.  The person with PD can give back to you, the caregiver, by accepting help.  Help can make the person with PD stay independent longer.

During conversation, take notes.  Add a statement as to what was agreed upon, and post this on the bathroom mirror.

Share your challenges with family not living with you (such as adult children).  This will let them know how they might be able to help you.

Have a conversation about advance care planning.  Can be hard to initiate.  We should all be having these conversations, regardless of whether we have a health condition or not.  Can reduce potential for family conflict.

Have a “what if” plan:

  • List on refrigerator of key contacts, doctors, medications.  Someone can find this list if needed.
  • Keep a note in your wallet that indicates you have someone at home with PD.
  • “Go bag” for person with PD.  Or a list of essentials (on refrigerator or by phone) that need to go in the bag.

Tap into healthcare team to get educated on coping with various symptoms.

Be prepared by having a self-management model of caregiving.  What strengths do I have?  What tasks can be made more simple?  What systems can I put into place so I don’t have to re-invent wheel?  (Example – notebook of medication changes and symptoms.) 

Can you set up a routine?  (Example – grandson helps with grocery shopping every Wednesday, using the same shopping list.)

Self-care:  intentionally and deliberate care of one’s physical, mental, and emotional care.  Important for your well-being.  Important for you to have a good relationship with yourself. 

Carve out time for self-care both so you signal to yourself this is important and so that others can see this.

Top self-care tips:

  • This isn’t self-indulgent.  Put your mask on first.  Can’t pour from an empty teapot.  Taking care of yourself is ALSO your responsibility.
  • Identify barriers to self-care.
  • Have a healthy work/life balance.  Such like with a non-caregiving job, we take breaks!


Questions and Answers:

Q:  My family member sits on the sofa, watching TV all day.  What can I do?

A:  Could be depression, which can be treated with medication and non-medication.  Could be apathy, which is harder to treat.

Q:  Why won’t my family member exercise?  He/she knows it’s good for him/her.

A:  People will only do exercise they want to do.  Have they ever done this exercise before?  Present a list of exercise options, and ask the person to choose.  Consider rewards for exercise — if you walk around the block three days a week, we’ll have ice cream on the fourth day.

Q:  Caregiver frustration with person with PD sitting on sofa all day and not exercising?

A:  You can lead a horse to water, but you can’t make him drink.  Meet the person where they are at.  Together, can we come up with an activity or structure?  Start small.  Come up with a realistic plan.

Forgive yourself if you can’t be perfect!