In May 2016, “Partners in Parkinson’s” (partnersinparkinsons.org – a partnership between the Michael J. Fox Foundation and a pharmaceutical company) hosted a conference in Oakland on PD. In the planning stages, I was asked to nominate a social worker for a panel. I recommended Marguerite Manteau Rao, LCSW, a long-time friend of Brain Support Network who is an expert in mindfulness and dementia caregiving. The panel that Marguerite participated in was focused on “strategies to help caregivers and their loved ones cope with a new diagnosis.” The discussion was recorded and the recording has just been posted online, finally.
To watch the 37-minute recording, visit the Partners in Parkinson’s video page, click on “You, Your Loved One, and Parkinson’s Disease,” and complete a short registration (name, email address, zip code). (Note that you can enter “fake” info.) Start here:
Partners in Parkinson’s
www.partnersinparkinsons.org/watch-our-videos
I watched the recording and believe it applies to those within Brain Support Network, even though we aren’t dealing with Parkinson’s Disease. Also, I think the suggestions given apply not just to the newly-diagnosed community. Of course I’m biased but I thought the best part of the video was Marguerite. She encouraged caregivers to prepare for a “marathon” by establishing both inner and outer resources. An inner resource mentioned is mindfulness. And outer resource mentioned is education.
Brain Support Network volunteer Denise Dagan also watched the video. She said that a few bits of advice stood out for her:
1. Resist projecting too far into the future. Worrying about what might happen adds unnecessary stress. To calm yourself in the face of frustration and stay grounded in “now,” learn mindfulness.
2. Having the attitude that you are care partners helps to maintain your individual identities and relationship before [a diagnosis]. Maintain separate activities and relationships around those activities helps with this, as well as reducing caregiver stress and resentment, and increasing healthfulness and energy.
3. Support ‘groups’ don’t have to be formal. One can get involved with the [disorder] community by taking exercise classes, volunteering for a clinical trial, or raising funds.
4. Exercise, exercise, exercise.
5. Consider a few counseling sessions for the tough issues, especially if a diagnosis has piled on top of unresolved issues.
6. Educate yourself about symptoms, medications, etc.
Here are Denise’s extensive notes from the video.
Robin
===============================
www.partnersinparkinsons.org/watch-our-videos
Denise’s Notes to
“You, Your Loved One and Parkinson’s Disease”
Partners in Parkinson’s
May 14, 2016, Oakland, CA
Panelists: Jenn Haraja (adult child caregiver), Jim (has PD) and Roberta (spouse caregiver) Hurt, Marguerite Manteau Rao (social worker)
Moderator: Dave Iverson
This 37-minute video is a panel discussion of strategies to help caregivers and their loved ones navigate a new diagnosis.
Dave started by asking Roberta about coping with Jim’s diagnosis.
It was not a surprise because the family suspected Parkinson’s Disease (PD) before his diagnosis. She has helped him through 11 surgeries, so this is more care-partnering. As a couple they have good family support.
Then Dave asked Jenn about the adjustment to her mom’s diagnosis and how it affected their relationship. Her first reaction was fear of the unknown. Much of her family is in healthcare so her answer was online research but there’s so much information, sometimes that’s scary, too. She relied on the Michael J Fox Foundation as a reliable resource.
Marguerite’s recommendation as to what to do early on. “It’s a marathon, so you need to establish both inner and outer resources.” Sometimes you need to educate yourself and even healthcare professionals about your family member’s diagnosis and treatment. Try mindfulness as an inner resource against stress, resist projecting too far into future, and calm oneself in the face of frustration with symptoms and healthcare staff.
Jim has found his strength in his wife’s support and encouragement. Initially, he was anxious, apathetic, and depressed, but vowed to do everything possible to live a normal life. His resources are Partner’s in Parkinson’s, the Parkinson’s Movement Disorder Alliance, and support groups.
How does Roberta manage to motivate Jim to do what’s needed and keep moving? She says it’s his willingness to take her reminders, even if others may view it as nagging.
Marguerite says Jim and Roberta’s attitude of care partnership is crucial to that cooperative relationship. A caregiver must give person with PD options and a level of decision-making so they don’t feel a total loss of independence and control. Be sure the caregiver isn’t letting cognitive deficits get in the way of helping the person to get moving and accomplish what needs doing for their own self-care.
Dave asked how Jenn and her Mom have decided to handle the issue of becoming a burden on her kids. Jenn says her Mom has always been active and with Michael J Fox Foundation Team Fox events, her whole family engaged with others in the PD community, including her mom. They focus on now, life, involvement in the PD community, and PD support groups because old friends probably don’t know or understand your new challenges.
Dave asked Jim about how not to be a burden on Roberta. Knowing the depth of her love and support from family, friends and the community helps. Roberta also finds support in the community and says it is huge to carve out time for yourself to maintain those relationships and some distance from constant caregiving. It helps her maintain a positive attitude toward Jim, and insists he has his own activities and relationships independent from her.
Marguerite’s comment is to encourage everyone not to identify with the label: caregiver. There’s a lot more to you than that label. You need to have other roles – employee, daughter, mother, artist, gardener, etc. The more roles you have, the less burned out you will be. Ask yourself why you may be clinging to the caregiver role and why it isn’t working for you because you will find out sooner or later, that it’s not working.
Dave asked Jim about his participation in support groups because men sometimes resist that. Jim feels it helps him keep active mentally, physically, and spiritually. Knowing others going through the same thing, he finds helpful. He could attend four, but started his own with about six people for whom he brings in speakers. Organizing the group, rather than just attending keeps him busy.
For Jenn, support groups don’t have to be formal, but can be ad hoc, like her involvement with the Michael J Fox Foundation’s Team Fox.
Jim and Roberta have been married for 60+ years because of their commitment, love, sensitivity to other’s feelings and desires. Commitment to them is the old fashioned wedding vows. There’s no dread or resentment about helping each other.
Marguerite’s experience is that not all couples are not like them but may have a history of anger and resentment before Parkinson’s is thrown into their path. Staying together takes a willingness to work through those difficult feelings. Mindfulness, self compassion, and not feeling guilty can help your inner self, but you may still want to look outside yourself for support.
Dave suggests that Parkinson’s calls upon you to be your best. Roberta hopes so. There are easy days and difficult days, but you just do it. Janet had good roll models in her parents looking after their parents, so she wasn’t expecting her mom to get young onset PD, but you just step up. She’s married to a native Tanzanian where the family is the support system, not institutionalizing anyone. His view about that means they are on the same page in looking after her mom. Caregiving is a role, but so is husband and wife, mother and daughter, and that comes first, always.
Roberta and Jim’s best advice is exercise, exercise, exercise. He has learned to love it! Roberta recommends a movement disorder specialist. To spouses, she says remember you are still the same people, regardless of Parkinson’s.
Marguerite’s comment is how little people seek counseling, even in the face of this remarkable journey and the new demands you face. Perhaps your relationship isn’t as well grounded as Jim and Roberta. Consider just a few sessions to mediate these difficult feelings.
Jenn says ask as many questions as you can and become an expert in Parkinson’s. That’s the best way to be supportive to your family member. Exercise with your family member in whatever way you enjoy being active.
The book “Brainstorms: The Race to Unlock the Mysteries of Parkinson’s Disease” is recommended by Jenn and Dave as a good grounding in PD and PD research.