“Being a PD Caregiver” – Webinar Notes

“Being a PD Caregiver” – Webinar Notes

On October 19, the American Parkinson Disease Association (APDA) hosted a webinar on “Being a PD Caregiver.” The guest speaker was Lianna Marie, RN, whose mother had Parkinson’s Disease. Lianna evolved from being a motivator and cheerleader to a caregiver. Stanford Parkinson’s Community Outreach listened to the webinar and are sharing our notes.

This webinar featured guest speaker Lianna Marie (liannamarie.com), trained nurse, founder of AllAboutParkinsons.com, and author of “Everything You Need to Know about Caregiving for Parkinson’s Disease” and “The Complete Guide for People with Parkinsons’ Disease and Their Loved Ones.”

Lianna and her mother wrote the first book together after talking over all the things they had learned by trial and error over fifteen years of living with PD.  Her mother said, “I wish I had known all these things 15 years ago, when I was diagnosed,” and the idea for a book was born.
Lianna’s top tips for Parkinson’s caregivers in this webinar are:

#1 Life is easier when you’re Parkinson’s literate.

#2 Plan what you can, even though PD is unpredictable and makes planning challenging.

#3 Know What Makes Them Go!  What helps them get moving? What or who inspires them? What makes them laugh?

This webinar is part of the ongoing series, “Dr. Gilbert Hosts,” by APDA Vice President and Chief Scientific Officer Rebecca Gilbert, MD.  You can view the webinar recording on the APDA website.

After passing on these tips for Parkinson’s caregivers Lianna answered questions about caregiver stress and hiring in-home care.  The Stanford Parkinson’s Community Outreach Program has information specific to those topics in our Caregiver Corner:

Lianna also answered questions about several Parkinson’s symptoms which caregivers should understand to best support their loved one and which the Stanford Parkinson’s Community Outreach Program has extensive information about, including:

And now, on to my notes…

– Denise

Being a PD Caregiver

October 19, 2020

Webinar Host:  American Parkinson Disease Association (APDA)

Moderator: Rebecca Gilbert, MD, VP and Chief Scientific Officer of APDA

Speaker: Lianna Marie, nurse, author, and founder of AllAboutParkinson.com

Dr. Gilbert asked Lianna Marie to provide an overview of Lianna’s experience as a caregiver for her mother during her journey having Parkinson’s disease.

Lianna’s mother was diagnosed with Parkinson’s disease (PD) the early 1990s, when she was in her mid 40s.  Lianna was in her late teens when her mother was diagnosed and in her 40s when her mother passed.

There has been much education about Parkinson’s in both the medical community and families since then.  At the time, her doctor told her she was too young to have PD.  It took a few years of complaining about a tremor in one of her pinky fingers before he finally referred her to the neurologist who diagnosed her.  

Lianna remembers her mother telling her not to worry because she had the ‘good’ kind of Parkinson’s.  Lianna later learned that meant that because her main complaint was a tremor, rather than slowness or stiffness, it meant she could expect a slower progression and longer life with the disease.

In the beginning Lianna wouldn’t call herself a caregiver.  She was more of a motivator and cheerleader.  Over time she realized there were a lot of things her mother was learning by trial and error.  About 15 years after her diagnosis, she was sitting with her mother at the kitchen table talking about all the things they had learned.  

One thing her mother remembered was being told early on that she should join a support group.  She should have called the group leader ahead of time because when she arrived at the support group meeting the first time, all the attendees were in wheelchairs.  Her mother found that group meeting to be very depressing.  She was at a different stage of the disease and needed to find a different support group.

Her mother also had dystonia.  Her right foot continually turned inward, which made it very difficult to walk.  Lianna learned dystonia is common in early onset PD.  They fixed the problem by putting a removable cast on her foot so she could walk. Eventually, the dystonia was no longer an issue and she could walk fine without the cast.  

They also discovered the power of music. When her mother was frozen, music would magically ‘unstick’ her feet from the floor.

When her mother tried to type, she would accidently delete the email she was composing, so they learned about using voice recognition software to keep her connected.

The result of these reminiscences was a book they wrote together because her mother said, “I wish I had known all these things 15 years ago, when I was diagnosed.”

About 10 years after her Parkinson’s diagnosis her mother remarried.  Her new husband tried to care for her, but patience was already a challenge for him before they married. Twenty-two years after her PD diagnosis her mother developed dementia. Dementia was a challenge for the entire family.  They hired in-home care but soon realized the best place for her to get proper care was in a nursing facility.  

She lived with dementia in a nursing home in Canada for eight years before dying.  The reason she did so well at the care facility was because the family built a care team including a neurologist, physical therapist, massage therapist, multiple care givers, and advocates.

Lianna has spent a lot of time chatting with Parkinson’s caregivers and has three tips to pass on:

1. Life is easier if you are Parkinson’s literate.  

  • Know both the motor and non-motor symptoms of the disease.  
    • Example: Anxiety and depression are symptoms of PD, not just aspects of your loved one’s disposition.  
    • Lianna regrets dismissing her mother’s worries as making a big deal out of nothing, now that she understands her mother could not help but worry.  
  • Know some of the side-effects of PD medications.
    • Like dyskinesia – involuntary, erratic, writhing movements of the face, arms, legs, or trunk.  Often fluid and dance-like but may also be rapid jerking or slow and extended muscle spasms.  Not a symptom of PD, but a complication from some PD medications.

2. Plan what you can.  

  • Planning for PD is challenging because it is unpredictable but do what you can.
  • Example: Her mother had no transportation in the mornings, so doctor appointments and outing were all made in the afternoon when she did have a ride.
  • Plan meals around medications so pills are always taken on an empty stomach
  • Plan who will provide care at what times when you have several friends and family members involved

3. Know What Makes Them Go!

  • What helps them get moving?
    • Understand your loved one – do they have freezing, apathy, depression, etc.
    • Lianna always carried a music player of some sort which her mother could operate.
    • Keep them involved in activities they enjoy as much as possible.
    • Exercise – if you don’t use it, you lose it!   (Lianna’s mother loved to walk.)
    • There are a TON of movement options for those with PD – even if they are in a wheelchair.
    • In person via Zoom AND recorded videos of activities including, yoga, tai chi, Rock Steady Boxing, Dance for PD, and more!
  • What or who inspires them?
    • Lianna’s mother was inspired by Michael J. Fox and Mohammed Ali
    • An inspirational person need not be affected by Parkinson’s
  • What makes them laugh?
    • A program or movie, like Keeping Up Appearances, which made her mother laugh aloud
    • Having grandchildren visit was truly uplifting for Lianna’s mother

Questions & Answers

Q.  How to stay positive throughout the Parkinson’s journey?

A.  If you are in early stages or are recently diagnosed, become Parkinson’s literate.  Your life will change, but it is not over.  You have decades before you to live with this disease.  
If you want to increase your positivity, look first at the negatives in your life and get rid of them!  

  • Turn off the news and replace your viewing with things you find uplifting or funny.  
  • Lianna’s mother had friends who talked down to her when she was first diagnosed.  Over the years she only maintained friendships with those who were supportive and positive
  • Focus on planning what you can
  • Try not to get overwhelmed
  • Maintain positive connection with friends, family, and the world so you don’t feel alone
  • Join a support group so you have people to share similar experiences

Q.  How to deal with frustration, both as a caregiver or person with Parkinson’s?

A.  The person with Parkinson’s and their primary caregiver are a team.  Sometimes, it takes practice to work out the kinks.  

  • Lianna’s stepfather learned it works better to suggest her mother do something, rather than tell her what to do.  Of course, that means accepting that the person with Parkinson’s may choose not to do what the caregiver is ‘suggesting.’
  • If the primary caregiver is the only other person in the household, the person with Parkinson’s may lash out at them when frustration strikes.  They don’t mean to, but the situation can become verbally abusive.
  • Try to remember the person is frustrated and angry at Parkinson’s, not at your loved one.
  • Lack of patience tends to build over time.  

Caregivers tend to feel they should be able to handle whatever Parkinson’s throws at them.  They tend to become frustrated with themselves, even though they are overburdened and have no training for how to manage their loved one’s needs and mood changes.  

  • There is no ‘should.’  You are doing the best you can.  Nothing more can be expected of you.
  • Don’t criticize yourself for being frustrated.
  • Take care of yourself to prevent frustration from building.
    • Build breaks into your day as a caregiver.  
      • Set your family member up with a TV show, phone call, video chat
      • Be sure your family member has a beverage, snack, phone to call you
    • Take 30 minutes to exercise or do something you find relaxing

Q.  Talk a bit about apathy (non-interest in activities a person with PD once found interesting).  Apathy can be incredibly frustrating for both caregivers and those with PD.

A.  First, you need to understand how apathy is a common non-motor symptom of PD.  The biggest challenge is to get the body in motion, so it can stay in motion.  

You might want to check with your loved one that they are sleeping well enough.  Their neurologist may be able to help if sleep is a problem.
Ask yourself what activities did your family member most enjoy before Parkinson’s?  Start by getting your family member to come to the garden, go for a walk with you, show you their photography stuff, etc. for ‘just 5 minutes.’  That 5 minutes will become a half hour or, hopefully, more.
Doing things together is more motivating than asking your loved one to exercise, do speech therapy exercises, etc. alone.  Especially since the beginning of the covid epidemic, there are TONS of videos to exercise, cook, and do other activities at home.  Doing them together counters apathy, especially if you promise they only have to try it for 10 minutes and you’ll both stop.

As PD symptoms progress you will need to modify activities, so they continue to exercise, cook, garden, etc. in a wheelchair.

Q.  What are your thoughts on in-home caregivers?  How do you introduce the concept of an in-home caregiver?

A.  This is another situation in which you need to know your loved one.  Some people are particularly sensitive about having people outside the family come in to help.  Lianna’s mother was all for having outside help.
A good idea is to tell your loved one you are going to try having someone come in to help for just a few hours this week to ease the workload for the person with Parkinson’s primary caregiver.  Having someone else to do the cooking and cleaning will give the primary caregiver more one-on-one time with the person with PD as a husband, wife, son, daughter, etc.

Making a list of everything that need to be done in a day can give the person with Parkinson’s some perspective as to how overburdened their primary caregiver is.  Ticking off the things an in-home caregiver can do to ease that burden can gain acceptance of the plan.

Leaving the door open to pull back, make the arrangement temporary, switch to a different in-home caregiver, etc. gives the person with Parkinson’s a sense of control and may help them accept in-home help.

Once the right in-home people are found and a system is in place, the whole household can see how many hands make light work and the primary caregiver can regain more of a traditional relationship with the person who has PD, whether that is spouse, adult child, partner, friend, etc.

Q.  Talk about separating a wife, mother, child, etc. from being a care partner.

A.  The husband/wife dynamic is quite different from being an adult child.  The husband/wife relationship is quite intimate, and you want to keep Parkinson’s from getting in between you.  

In the beginning Lianna’s mother took advantage of the one needing care.  We had to talk with her about how her constant asking her husband for assistance when she had no real need, just because he was willing to be at her beck and call.  We had to remind her that in later years she was going to really need his assistance.

Once we got past that phase, she realized there was a lot she was able to do for her husband, even though she had Parkinson’s.  Even if she couldn’t move her whole body, she could give him massage of his shoulders, legs, and feet.  It felt good for her to be able to contribute to his wellbeing, especially after he was so available for her.

You may need to have a conversation with your spouse to let them know you are feeling put upon and exhausted by the end of the day.  With some brainstorming, you may be able to come up with ways in which the person with Parkinson’s is able to contribute to the workload, or the caregiver’s wellbeing.  Of course, as the disease progresses, these arrangements will need to change.

It is best if everyone can agree that when tempers flare, it is Parkinson’s and the immediate situation that the frustration is directed toward – not each other.  Making this pact helps to define your relationship outside of PD.

Q.  What to do if my loved one doesn’t realize they have cognitive issues?  How do I navigate this?

A.  Dementia doesn’t happen to everyone with PD, but it happens enough to discuss.  Think about your loved one and whether a direct or more gentle approach would work best.  Always be reassuring and supportive.  Let them know you always seek what is in their best interest. 

It is important to address cognitive and other issues as they arise.  Ignoring changes doesn’t make it go away, it just makes everyone around the person with Parkinson’s more uncomfortable.  

Lianna doesn’t use the word dementia, she always refers to the specific problems the person is having.  Saying things like, “I notice you’re having problems remembering (insert forgotten thing here).  Have you noticed that as well?”  Using this approach with her mother was so nonconfrontational, it motivated her mother to see a doctor and prepare her will and advance directive.  

You should always have a doctor evaluate your loved one to determine the level of cognitive change and, if it is determined the person has dementia, what type of dementia they have.  Mild cognitive changes may remain so and there are many types of dementia with different behaviors common to each.  Knowing what behaviors to expect makes caregiving for someone with dementia less stressful.  There are also some medications those with Lewy Body Dementia or Parkinson’s Disease Dementia should never be given, particularly old-style antipsychotics.

Q.  Young onset Parkinson’s disease is those diagnosed at age 50 or younger.  One of the listeners is the wife of a young onset husband.  Do you have any advice for how she manages all the demands on her as a working wife and mother – in additional to coping with PD?

A.  This is why I always say to call ahead before joining a support group.  The population of those who have Parkinson’s ranges from those in their 40, like this working father, all the way to those in their 80s in late stages and a wheelchair.  The whole point is to find a group of people with whom you can relate.  You need to find the support group appropriate to your situation.

Early on in my mother’s journey she rebelled against the idea of having caregivers.  That is why I called myself her motivator, cheerleader, etc.  It is also a good idea to talk to the person you love who has PD and ask them how you can be of help.  

As things got harder Lianna told her mother the demands were too much, and she couldn’t cope.  Her stepfather had already reached the breaking point, and everything had fallen on Lianna’s shoulders.  

Everyone can manage being overburdened for a while, but it is possible to continue in a state of caregiver stress until you reach the point of caregiver burnout, where your health is affected.  Your health should be as important as the person you care for.  

Especially if you’re younger and a mother, it is easy to put everyone else’s needs above your own.  Remember, this is a long journey with Parkinson’s, and you cannot do it alone the entire time.  Remember the analogy of putting the mask on yourself before your child when you’re on a plane?  It’s SO true!  If you think it’s difficult to manage your loved one’s care now, how would you manage if you become unwell?

Consider getting some outside help, even if it is just getting help with household chores (hiring a yard service and/or housekeeping service, ordering grocery delivery, meal delivery, etc.), arranging carpool and after school care for your kids with neighbors and friends, etc.

Q.  What tips do you have for those with difficulty getting out of bed or who experience freezing of gait or other challenges moving about?

A.  Freezing can happen any time but understanding common triggers for freezing is important.  Here are some triggers and tips:

  • moving through a crowded space
  • making tight turns
  • going through narrow doorways
    • Turning sideways to move through a narrow doorway worked for Lianna’s mother every time
  • general freezing tips
    • Putting something in front of Lianna’s mother’s foot to step over often worked
    • music with a strong beat, either played or sung.  Even something simple, like Row, Row, Row Your Boat
    • a countdown, like 1, 2, 3, go!
    • focus on doing one thing at a time.

To help Lianna’s mother get out of bed the family installed a lift.  There are sometimes grants available to help families afford mobility equipment through your local Area Agency on Aging.

Q.  These tips are available in your books.  Can you tell us more about your books?

A.  The first book written with Lianna’s mother is “Everything You Need to Know about Caregiving for Parkinson’s Disease.”  It has been revised and re-released with updated information about coping with dementia and end-of-life issues, which Lianna’s family hadn’t experienced when the book was first written.
“The Complete Guide for People with Parkinsons’ Disease and Their Loved Ones” is in laymen’s terms, so it is easy to understand.  It has been revised and re-released with updated medical information. 

Q.  Did your mother hallucinate?  What strategies did you use to deal with them?  How can a care partner interact with someone having active hallucinations?

A.  Lianna’s mother had visual hallucinations in the end of her life.  It’s good to know hallucinations are a possibility when you’re caring for someone with PD because they can be very scary.  
When Lianna’s mother first experienced them, we could talk with her about them and she understood.  Later she found some hallucinations to be frightening, like seeing her grandchildren falling into a hole in front of her or someone taking her grandchildren away.
The hallucinations were a side effect of an increase of Amantadine to control dyskinesias.  We had to find a medication balance with the neurologist and put up with more dyskinesias than we would have liked to minimize hallucinations.

Q.  Any parting thoughts for care partner issues during the covid pandemic?

A.  As caregivers we can get into a zone we don’t come out of for many years and become emotionally exhausted.  During covid we are more likely to not be getting out of the house and having some space from our loved one.  

As a caregiver, Lianna learned to check in with herself and acknowledge her emotions, including guilt over having fun when her mother couldn’t have fun.  She got in touch with her creative side.  There are some things you can do at home, like exercise.

Take your broken heart and make it into art.  Channel your feelings into something productive.  For Lianna’s mother volunteering and leading a small singing group were ways she could feel productive.  It helps you get to the next day and the next week.

Make sure you stay connected to others.  If you don’t have anyone to call, email Lianna.  She’s willing to call you or Zoom with you so you are not alone.  You can reach out to Lianna on her website at:  liannamarie.com