Sorry you haven’t heard from me in awhile. Those in the PSP and CBD groups know that we had a major conference for about 150 people in the San Francisco Bay Area at the end of October. Since then, we’ve been handling an average of two brain donations each week. So this has kept me and uber-volunteer Denise Dagan very busy. Am finally getting back into the swing of things with tonight’s post.
Denise attended the webcast of the 2017 National Caregiving Conference in early November. She is now catching up on the notes she took from the various sessions she attended.
One of the sessions she attended was on the challenges of Parkinson’s Disease (PD) for caregivers and the entire family. The moderator was Diane Breslow, LCSW, social worker, with a panel of other speakers addressing personal challenges, changes and choices. Though the session was focused on PD, the discussion applies to caregivers of those with the atypical parkinsonism disorders as well (LBD, PSP, CBD, and MSA).
Ms. Breslow itemized the physical challenges to all caregivers:
– Caregiver safety while helping patient.
– Increased physical exertion and strength are required as motor symptoms and falls increase.
– Decreased sleep – due to patient’s sleep disturbances and to caregiving itself.
– Decreased nutritional status.
– Social stress, especially if/when the care recipient has cognitive issues or slowed processing/speech.
– Increased risk of depression, especially if the care recipient suffers depression.
– Increased anxiety, especially if the care recipient suffers anxiety.
– Decreased communication with the care recipient, especially if speech is quiet and/or slow
These stresses increase as the person with Parkinson’s disease symptoms progress.
Ms. Breslow made the point that eventually a family with Parkinson’s Disease will need a healthcare team (neurologist, primary care physician, physical therapist, occupational therapist, speech therapist, at a minimum) and emotional support (support group, religious community, family, therapist).
Here are Denise’s notes from the session.
======================================================
Notes by Denise Dagan, Brain Support Network Volunteer
Challenges, Changes, and Choices: Caregiving for People with Movement Disorders – An overview and panel discussion
2017 National Caregiving Conference
Moderator Diane Breslow, MSW, LCSW
November 10, 2017
The moderator, Diane Breslow, began with an overview of Parkinson’s disease and associated caregiver challenges.
Parkinson’s Disease is…
– Chronic
– Progressive
– Unpredictable: different from day to day, or even within a day
– Different for each patient
– A family disease: the whole family experiences its effects.
Because it is a long term/life long illness it is advisable that families reach out for information and resources to support the family early on.
Eventually, you will need a team (neurologist, primary care physician, physical therapist, occupational therapist, speech therapist, at a minimum), emotional support (support group, religious community, family, therapist).
Caregivers need information and support, too.
Physical Challenges of PD on Caregiver:
– Caregiver safety while helping patient.
– Increased physical exertion and strength are required as motor symptoms and falls increase.
– Decreased sleep – due to patient’s sleep disturbances and to caregiving itself.
– Decreased nutritional status.
– Social stress, especially if/when the care recipient has cognitive issues or slowed processing/speech.
– Increased risk of depression, especially if the care recipient suffers depression.
– Increased anxiety, especially if the care recipient suffers anxiety.
– Decreased communication with the care recipient, especially if speech is quiet and/or slow
These stresses increase as the person with Parkinson’s disease symptoms progress.
How Caregiver’s Quality of Life is Affected
– 40% of caregivers indicate their health suffered as a result of caregiving
– 50% of caregivers had increased depression scores
2/3 of caregivers indicate that their social life has suffered
(last 2 correlate with the experience of the person with Parkinson’s)
Diane introduced the panelists who have all been members of Diane’s Parkinson’s caregivers support groups. Diane asked each panelist to speak to a particular aspect of their caregiving experience.
Karen’s situation is a good example of the far reaching effects of her husband’s Parkinson’s on their family. Karen is not afraid to talk about the anger associated with her husband’s PD diagnosis at age 60. Karen was a stay-at-home Mom so there was anxiety due to uncertainty and unknowns, especially financial. After four years she realized they needed to move to a 1-level, less expensive home. She went back to work, and she began to drive him to work. He was laid off and began to decline quickly. It’s been 13 years. They have long term care insurance which helps pay for 4 aides. Karen finds herself doing everything (finances, taxes, home repair, his health care management, insurance issues, etc.) rather than being in a partnership. She injured herself helping him move around. His sleep disturbances interrupt her sleep. Feeding him and toileting make messes that need to be cleaned up daily. Recently, he broke his hip and he ended up in skilled nursing, but the aides couldn’t go in there to help him so Karen had to do everything in skilled nursing. Karen feels like a hamster on a wheel that never stops. They have three kids, two of whom are supportive. She understands that caregiving is not for everyone. She struggles to find her own identity and joy.
Linda exemplifies the word proactive. Her father lives in Canada and the day after his diagnosis showed up at a speech Diane (this session moderator) was giving, and spoke with Diane after the speech. Together they developed an action plan for her father’s care. One of her siblings live near her parents. Linda lives in the states. Linda knew that it is important to her father to remain self sufficient. Linda gave her father a list of organizations to contact. They met with a nurse and social worker through the Canadian Parkinson’s Association. In that meeting they learned that not every neurologist is a movement disorder specialist. Now he sees one of the best movement disorder specialists in Canada. He has learned to advocate for himself in pursuit of his own self sufficiency. Linda feels Parkinson’s happened to her whole family. She doesn’t want to take credit as a caregiver because her whole family cares for each other, even her Dad with Parkinson’s still doing what he can to care for his family.
Claire’s husband, Ira, was diagnosed with Parkinson’s in 2010 and has severe arthritis. He is in a seated exercise class but finds that depressing because the other participants were all sick. Then he was hospitalized due to infection and returned to the exercise class with a different perspective. They are now the center of their social group, real cheerleaders and the class is respite for Claire. They expanded the number of seated exercise classes and made even more friends for both Ira and Claire, eventually finding a seated dance class which Ira enjoys so much he moves more during that class. They love it and they met even more friends, added more dance classes and more friends. Now there are 8 exercise or dance classes. The physical therapist has seen no deterioration in the past year and Ira has fewer falls. They also enjoy the opera and several theaters (both live and movies). They know where all the bathrooms are and have found people are generous in offering help with carrying equipment, opening doors, etc. Some things they have had to give up, like the symphony, because the family bathroom is not convenient and it is too much of a hassle. All the exercise means Ira can participate in the opera and theater, etc.
Jean exemplifies having built a community of support over many years of caregiving. Her husband, Richard, has been in a nursing home for 4+ years with all the frustrations since his diagnosis. For example, he lost much of their savings due to cognitive challenges and there is a division between him and his children. Through the VA he participated in a day program which gave her respite. Catholic charities and the VA helped them decide to move him into Wesley Place, where he lives now. She has been very happy with his care there and their emotional support for her family. They have a lot of friends and family who reach out frequently to provide her respite and social/emotional support. Even the checker at Trader Joe’s gives her the gift of a bouquet of flowers every time she shops there. You need to keep your eyes and ears open for the support that is out there for you.