“Challenges, Changes, and Choices: Caregiving for People with Movement Disorders”

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.

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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.

 

Balancing Your Role as a Caregiver (and a person with a diagnosis) – Webinar Notes

Partners in Parkinson’s (partnersinparkinsons.org) is a joint effort between Michael J. Fox Foundation and AbbVie, a pharmaceutical company. They have occasional webinars on topics related to Parkinson’s Disease (PD). In a webinar last month, two PD caregivers and two PD healthcare professionals spoke about “building and balancing your role as a Parkinson’s caregiver.” The discussion was moderated by a retired family physician who has Parkinson’s.

Though all of the participants in the webinar were dealing with Parkinson’s Disease, the content of the webinar applies to all caregivers, regardless of disorder. And most of the content applies to everyone — whether you are giving care or receiving care.

Registration is required (and free) to access the webinar recording and slides:

www.michaeljfox.org/understanding-parkinsons/pip-webinar-registration.php?id=12&e=1435690

Brain Support Network volunteer Denise Dagan listened to the one-hour webinar and shared notes.

Denise says that the conversation covered four areas:

“Caregiver considerations” = wearing many hats as a caregiver, taking a team approach as care partners, dealing with the emotional roller coaster, and seeking support.

“Strategies for transition” = the challenges of transitioning a part of your identity from a healthy person to a person with PD – and – from a spouse to a care partner.

“Balancing individual needs and shared goals” = keeping perspective between focusing on PD management and both care partners continuing to participate in activities they enjoy.

“Advocating for better health” = advocating for your family member with PD in the doctor’s office, in the PD community (example – fundraising for a cure), and at the state and federal level in public health policy.

Her notes are below.

Robin

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Notes by Denise Dagan, Brain Support Network volunteer

Building and Balancing Your Role as a Parkinson’s Caregiver
Partners in Parkinson’s Webinar
November 8, 2017

CAREGIVER CONSIDERATIONS

The role of caregiver is often one of many an individual may have; caregivers, or care partners, can include children, spouses, friends and extended family or involve several individuals. Many people prefer the term care partner because it implies a choice to care and that the relationship is reciprocal, while caregiver implies the burden of care has been thrust upon you.

The transition to care partner may lead to unexpected challenges and impact existing relationships.

Caregivers may need support from friends, family or the community; access to resources can help ease transition.

Getting a diagnosis can be a relief, especially after a long term of unexplained symptoms. After diagnosis learning about Parkinson’s and how to live with it can finally begin, although not all families will pursue information immediately, especially if medication is effectively compensating for symptoms.

It can be an emotional roller coaster, especially right after diagnosis. A therapist can be helpful, especially to guide families through fear of the unknown and encourage communication and combat depression.

The panel recommends joining a support group to learn how others cope with Parkinson’s, although you can’t compare yourself directly to others because every person’s symptoms, underlying health, lifestyle, etc. do vary.

Health care policies may impact both caregivers and patients; caregivers can help advocate and be an additional voice when speaking to health care providers, weighing in on the obstacles, struggles and wins to make the most of those interactions in person and on the phone.

Caregivers can amplify the patient voice toward better care and access.

STRATEGIES FOR TRANSITION

Access available resources to learn about PD. Find a movement disorder specialist. Movement disorder specialist finder at www.partnersinparkinsons.org.

Engage with allied health specialists (physical, occupational and speech therapists).

The panel agreed that most health care professionals are more than willing to take time to answer concerning questions that will reduce the inquirer’s anxiety or frustration, so find that patient person on your health care team who has time to return your phone calls or email and reach out to them when you have a question. Reducing your anxiety or frustration by reaching out to that person will keep you well.

Connect with the community through support groups, online forums, events, etc. Education, social connections with an understanding community, even activism can help combat depression.

Empower patients to make decisions.

Explore ways you work as individuals to optimize how you can work together. One panelist found his wife’s significant improvement immediately following DBS made them realize how much he was missing his healthy wife. They made changes then to stay connected and to share their story to help others see that PD doesn’t have to drive a wedge between you as a couple.

Engage with a therapist or practice meditation. People’s fears are all over the place, like loss of mobility, loss of speech, loss of job, etc. The best way to face your fears is to share them and make an action plan to put off those losses as long as possible. Reduce anxiety by getting all your financial, medical and legal documents in place well ahead of when they will be needed. For some people taking action can help ease depression.

Do activities that bring enjoyment to you and your caregiver. It is very easy for time in the day to be overwhelmed by medication timing, doctor appointments, exercise routines, etc., completely sidelining needs of the caregiver OR the lifestyle you both used to enjoy. One panelist got good advice; as soon as you are diagnosed write down who you both are and the things you both enjoy and refer back to it often, especially when either of you are feeling overwhelmed by managing PD.

Live in the moment.

BALANCING INDIVIDUAL NEEDS AND SHARED GOALS

Both people in the caregiver-patient relationship share daily goals, but both also have needs as individuals. Encourage independence in the person with PD.

Sometimes effort is needed when facing uncertainty. We need to learn to manage uncertainly/anxiety independently and together. Sometimes input from a therapist, clergy, etc. is really helpful with this.

Caregivers should schedule time for themselves to meet other priorities; self-care is critical when caring for others. Panelists agree that there doesn’t need to be a ’schedule’ for self-care, unless there is a regular activity they enjoy, but without a regularly scheduled activity, it is easy to let daily PD care derail self care. Don’t let that happen.

Reach out for respite care from social services, church, family and/or friends to stay with your family member allowing the caregiver to have a break and/or stay involved with activities they love.

People with PD should focus on setting and managing personal goals.

Caregivers and people with PD have other personal roles (i.e., sibling, child or friend) that require just as much attention.

It is important to find balance when integrating the caregiver role into daily life.
– Exercise!
– Communicate. Address issues, and feelings as they arise.

ADVOCATING FOR BETTER HEALTH

Health care policies may impact both caregivers and patients.

The federal government is the largest funder of PD research; approves new PD drugs to ensure they are safe and effective and helps increase access to services patients need. The panel encouraged everyone to educate themselves and participate in fundraisers and clinical trials.

Caregivers can learn more about the public policies that affect people with PD and call legislators to amplify the voice of Parkinson’s patients. The panel encouraged everyone to educate themselves and write their legislators.

Caregivers also can help advocate for more information and better care at doctors’ appointments. Between visits keep notes about things you notice in your family member with PD (increased falling, unstable gait/balance issues, wearing off of meds, etc.).

Use Fox Trial Finder or Clinicaltrials.gov and bring trials you are interested to to your doctor to discuss which you may participate in.

Learn more about public policy and how to take action at michaeljfox.org/policy.

QUESTION AND ANSWER

Q. Thoughts and suggestions for my family member who’s recently diagnosed and quickly agitated/frustrated, but will not see a therapist?

A. First, find out if there is a medical issue contributing to their behavior? Is this behavior a departure from their usual behavior? Be aware of your safety around this behavior and have an exit plan if your family member really goes off the rails. Find someone to talk to as a caregiver, first. Eventually, you may be able to get your family member to talk to them. Try an aggression outlet, like Rock Steady Boxing.

Q. Person with PD has no immediate family support.

A. Be your own advocate. You are not alone. Talk to someone. It can be a church group, neighbor, pastor, friends, other family members. Tell your doctor what you love and implore them to help you be able to keep doing it. Don’t let yourself become isolated.

Q. Importance of reaching out to extended family, friends, etc.

A. The extended PD community can be intense, close, understanding, compassionate relationships because they are dealing with the same symptoms, financial, emotional woes when your non-PD friends and family don’t understand.

Q. How do you deal with friends or family who don’t know how to deal with your PD?

A. This definitely happens. With media exposure more people understand PD is not a death sentence, or they know someone with a PD diagnosis. Talking in casual groups to share information about medications, exercises, diet, etc. in public (at the YMCA, in the grocery store, etc.) helps make people even more comfortable talking with a person with PD. MyParkinsonsTeam is an online chat about PD.

Q. Most important tip for care partners on this journey?

A. Find the right doctor. Movement disorder specialist who’s as up-to-date as possible. Get involved. Move around. Be active. Be sociable. People who ask, am I doing enough? Should I be doing more? There is no doing it ‘right.’  Keep reaching out, be gentle with yourself. Be resilient. Don’t stop looking for better symptoms management. Don’t feel like a pest. Ask about clinical trials. Ask if there’s more you can do. Search for answers until you find one that works for you. Couple can drift apart. Turn toward each other, instead. Communication is paramount. Be more open, honest, vulnerable, committed, invested. Together you are stronger. It can improve your relationship.

 

Non-medication approach to depression – webinar notes

The Parkinson’s Foundation (parkinson.org) hosted an hour-long webinar in late November 2017 about non-medication treatment of depression in Parkinson’s Disease (PD). Actually, very little of the material presented was specific to PD but rather applies to anyone coping with depression. Our mood (degree of positive and negative thoughts) affects our quality of life, anxiety level, and motor function.

Find a link to the archived webinar recording here as well as a link to the slides: (you must register to view the recording)

parkinson.org/Living-with-Parkinsons/Resources-and-Support/PD-ExpertBriefings-Webinars/Archives

The excellent speaker was Roseanne Dobkin, PhD, a clinical psychologist at Robert Wood Johnson Medical School. She offered good advice for:

* changing negative thought patterns toward more realistic thinking

* setting incremental goals to overcome apathy and depression

* addressing another person’s negative or pessimistic comments

As always, Denise’s detailed notes are below. They are well worth reading.

Robin
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Notes by Denise Dagan, Brain Support Network volunteer

Parkinson’s Foundation Expert Briefing
Depression and PD: Treatment Options
Speaker: Roseanne D. Dobkin, Ph.D.
November 21, 2017

Solutions to Parkinson’s complaints are not something you can just call in. You need to take action to improve the situation for both motor and non-motor symptoms. Knowing the solutions and not implementing them will not help you.

Cognitive-Behavioral Therapy (CBT)
– Evidence-based psychotherapy
– Targets thoughts and behaviors
– Skills-based
– Very suitable for enhancing effective coping and treating depression in PD

CBT: Key Points of Emphasis
Multiple interacting causal factors of depression.
– Biological (brain chemistry, nutrition/diet, exercise/fitness)
– Cognitive
– Behavioral
Intervening on any one of these factors will improve depression, but improving on all of them will have the most beneficial effect.

Examples of 1:1 Interventions

* Increasing meaningful and social activities. Not just busy work, but something you really want to do, especially goal-oriented.
– Old: think what you used to love to do
– New: consider activities you didn’t participate in before PD
– Modified: accept you will need to do things differently than you used to, but you can still participate/contribute.

* Exercise every day
* Social goal – every day
* Self-soothing every day – what is relaxing and comforting to you? Hot tub, nature stroll, fire pit and wine.
– Taking action toward your goals doesn’t have to be huge daily. Start with baby steps and add more effort and time toward each goal up to your time and energy limits.

* Problem solving for physical limitations:
– Pacing of activities so you don’t overdo it
– Appropriate daily goals/less rigid demands
– Plan around “off time”
– Walk 10 minutes 3 x daily, instead of 30 minutes at a time
– Follow through with referrals for PT, OT and Speech

Roseanne told a story of a former fire fighter with PD whom she worked with to find ways in which he could still stay involved with his fire company. He began by joining them for a few social get-togethers, then began volunteering for charity works the fire company was involved in until he began spearheading some charity drives.

* Anxiety management and relaxation – Google these topics or find books at your local library
– Breathing exercises
– Progressive muscle relaxation
– Guided visualization (taking your mind to a place of calm actually brings down blood pressure & anxiety)
– Worry control

* Sleep hygiene
– Using bed for sleep only
– Relaxing before bedtime (limit blue light screen time in the hour, or longer, before sleep)
– Keeping regular sleep hours
– Limiting excess time in bed, daytime naps, caffeine, or alcohol in the evening
– If you aren’t falling asleep, get out of bed until you do feel sleepy so you don’t associate the bed with NOT sleeping, which can lead to insomnia.

* Thought monitoring and restructuring – Rethink the big picture. Use these techniques to rethink how you are feeling and responding to various situations. Stop the negative thought process, rewind what you thought, felt and did and project what you might do differently next time.
– Catch the negative thought
– Press pause
– Rewind
– Replay

* Multiple methods/techniques – to catch yourself and reframe your thinking from negative/unrealistic toward positive/realistic.

Thought Chart Examples: Keep track of the situation, your emotional response, and your thoughts.

Situation: Doing volunteer work
Emotion: Hopeless
Thoughts: I’m not capable of contributing. My life is meaningless.

Situation: Find out you are not invited to something
Emotion: Depressed
Thoughts: My PD makes friends uncomfortable.

Situation: Thinking about going to a party
Emotion: Anxious and scared
Thoughts: It will be horrible if people see my tremor

Are your thoughts balanced? Not rosy and positive, but realistic. Everything is not gloom and doom, either. There is usually a bit of both + and – in every situation. What would a jury of your peers decide? Is your perspective the only way to think about the situation? Are your thoughts fact based, in perspective rather than skewed?

Examine the “Evidence” for your thinking, in this case: I’m helpless. Was this person really helpless? No.
– Situation: Freezing in the bathroom.
– Automatic Thought: I’m helpless
– Evidence For: I was alone in the bathroom in the middle of the night and unable to move.
– Evidence Against: This happens quite a bit, so I planned in advance. I had my cell phone in my pocket. I called my wife on the house phone and she helped me back to bed.
– Rationale Response: Even though I was physically unable to move my feet, I was able to help myself out of the situation (thus I am not helpless).

Behavioral Experiment – because we often anticipate the worst before we have actually tried, so do a behavioral experiment, like this one:
– Negative Thought or Prediction:
“It will be impossible to have dinner in a restaurant because of my tremor.”
– Experiment:
I will to to the Olive Garden with my spouse on Saturday at 6pm.
– Outcome:
I was able to eat dinner at the Olive Garden. I ordered food that did not need to be cut and requested a straw and lid for my coke. I enjoyed getting out of the house. There were no leftovers to bring home.

You have control over your thinking and actions in response to your PD symptoms and circumstances: If you are thinking, “I am not accomplishing anything anymore.” Revise your thinking to, “I am still accomplishing many things for my family and community, even though I am no longer working in my business.”

If you are thinking, “I am rapidly deteriorating.” Revise your thinking to, “The neurologist said I was the same as 6 months ago and did not change my medications.”

If you are thinking, “Nobody at the party will talk to us.” Revise your thinking to, “At least some people will talk to us. It is highly unlikely that we will be completely ignored.”

CBT Outcome Data in PD studies:
* Dr. Dobkin’s first randomized control trial of CBT for people diagnosed with PD
– 80 people with PD (PWP) and caregivers were enrolled in the trial
– Intervention: CBT + clinical monitoring (neurologist) + standard care
– Control: Clinical monitoring (neurologist) + standard care

* 10 sessions of one-on-one CBT for the PD patient

* 4 supplemental caregiver educational sessions

* After the 10-week treatment period, there was a follow up 1-month later, which found those with CBT had significantly lessened feelings of depression for both the person with PD and their caregiver. Continuing this type of therapy over the phone can continue the effects of the initial treatment.

* Secondary outcomes improved, as well !
– Anxiety lessened
– Coping skills improved
– Quality of life improved
– Motor function improved (motor function follows mood: poor mood, poor motor function & vice versa)
– Negative thoughts lessened

Conclusions:
* Your mood is one critical aspect of living with PD that you can control.
* Don’t suffer in silence!
* Effective non-pharmacological treatments are available that can be used alone or in conjunction with standard pharmaceutical treatments.

QUESTION AND ANSWER

Q. Are medications helpful for depression in PD.
A. Absolutely, if someone’s depression is milder Dr. Dobkin recommends starting with CBT therapy. When symptoms are moderate to severe she recommends medication in combination with CBT therapy.

Q. How to people come to a psychiatrist, like Dr. Dobkin?
A. 30% of the time the patient is self-referred, they ask around to get a recommendation. 30% of the time they are referred to psychiatry from their neurologist. 30% of the time they are referred to psychiatry by a friend/family member or primary care physician.

Q. If you have apathy, how do you get motivated to get treatment?
A. Depression is feeling sad or low, and apathy is more of a lack of feeling. There is overlap because one symptom depression is lack of motivation. If you are feeling unmotivated, set yourself a very small, specific goal based on what is important to you or someone in your family. If you are not exercising, get a goal to walk for just a few minutes. Success in reaching your goal may motivate you to set your goal to walk a few minutes longer next week.

Q. If someone is biologically inclined toward depression aren’t they doomed to experience depression?
A. The biology component of the factors which contribute to depression is only one factor. It doesn’t matter how much biology is contributing to depression because the cognitive and behavior factors are also at play. Intervening in either or both the cognitive and behavior factors toward the positive make a significant positive impact on reducing feelings of depression.

Q. Is there any research data on the use of narrative therapy in PD?
A. Not that Dr. Dobkin knows of, but there is a place for all sorts of evidence-based non-pharmacological treatments that have been successful in other disorders and it will probably have some degree of success in Parkinson’s, as well.

Q. Is the Hamilton Depression Scale more for use by a clinician or by patients and their families?
A. It would be difficult to self administer, but there are dozens of tools that would be more user friendly for self evaluation. Most scales are best used in conversation with a health care professional. There are some good self help books that use cognitive behavior therapy as their basis for helping the reader. These books have some quizzes and self evaluations along with the self guided CBT based advice.

Q. Over the holidays what advice would you give families for helping someone who’s blue?
A. Let your distressed loved one know you are willing to listen if they want to talk. Try to engage them in planned family activities. People who are depressed tend to both think and speak in depressed language. Talk back to negative statements in positive ways to help them balance their thinking toward a more realistic perspective.

Panel of Palliative Care – Notes

“Palliative care” is probably a topic more people should know about.  Brain Support Network volunteer Denise Dagan attended a panel on palliative care last month in San Mateo.  The panel of five palliative care practitioners was sponsored by Seniors At Home and Peninsula Temple Beth El.  These are Denise’s notes from the panel discussion.

Robin


Notes by Denise Dagan, Brain Support Network Volunteer

Palliative Care Panel
October 26, 2017
San Mateo, CA

The five panelists introduced themselves and made brief personal statements.

#1 – Rabbi Dennis Eisner began by encouraging everyone who hasn’t already, to share their personal wishes for end of life care before a crisis occurs. It not only reduces stress in the moment, but better ensures that what you expect to happen at the end of your life, is what actually does happen. After attending a talk by the author of “Being Mortal,” a book which talks about expectations for end of life care, he realized it was time to talk with his own mother since she had been diagnosed with cancer. He wanted to ensure she understood that treatment was not obligatory and that he would support whichever choice she made. He explained that palliative care is both medical and philosophical (spiritual, emotional, etc.) and that those extra levels of care (pain management, comfort care, spiritual and emotional support) are usually something people want when they are terribly ill.

#2 – Gary Pasternak is a hospice and palliative care doctor with Mission Hospice. He doesn’t like the term palliative care. Even though it is accurate (palliation means to ease suffering), he prefers the term Compassionate Care. At Mission Hospice and Home Care, palliative care and hospice both operate as teams of psychologists, social workers, doctors, nurses, physical therapists, occupational therapists, clergy and volunteers to address every need their patients have. Palliative care can be introduced to a family through the emergency room, intensive care unit, oncology, etc. to help a patient deal with the difficulties that come with serious illness. Doctors are often the center of the palliative care team to drive a treatment plan and either help a patient recover or manage a chronic illness. It is separate from hospice, which is is reserved for those with a prognosis of six months or less to live. It is Dr. Pasternak’s experience that death and dying issues are usually non-medical. In hospice, nurses, clergy, social workers, and volunteers do most of the patient and family support.

#3 – Redwing Keyssar is the Director of Palliative Care at Jewish Family and Children’s Services in San Francisco. Just as midwives guide a child into this world, she views herself as a midwife to the dying, guiding them out of the world. She’s been drawn to this work since the age of 30 when her best friend died. At the time (34 years ago) palliative care was a new thing. She explained that Jewish Family and Children’s Services is not a medical model, but a social service agency focused on palliative care. They are able to put services in place to ease the burden of caregiving for a serious illness. They have an annual volunteer training in the fall with so much interest enrollment fills quickly.

#4 – Gwen Harris is a geriatric care manager for Seniors at Home Palliative Care Program. She spoke about how her father was 60 years old when Gwen was born and died with she was 30. It ignited an interest in helping those suffering from long-term illness and the study of death and dying.

#5 – M.K. Nelson is Director of Spiritual Care at Mission Hospice. She shared that, sadly, while there are excellent Palliative care programs around the bay area (CA and nationally), not all have a chaplain on staff. She feels clergy has a unique perspective and comforting presence and can be very beneficial in palliative care. If you happen to have more than one palliative care program to choose from, it may be important for you to consider whether there is a chaplain available to patients and their family.

Following everyone’s introductory statements the panelists began to take questions from attendees.

Q. How do you find palliative care?

A. You can request a consult in your clinic or hospital with the palliative care team. It does not commit you to enrolling in palliative care, but a conversation with them can help you clarify your medical options while getting an overview of what palliative care has to offer in your situation.

A. Another way to ensure you have palliative care offered to you at the end of life is to codify it into instructions for your healthcare power of attorney and in your advance healthcare directive.

One way to learn about this is through Kaiser’s Life Care Planning: lifecareplan.kaiserpermanente.org/discover/. You don’t have to be a Kaiser patient. It gives you a framework for discussion and planning.

A. Start by asking your doctor for palliative care services or that you need contact information for palliative care options. If your doctor is unresponsive, look for a palliative care department phone number in your clinic or hospital directory. Failing that, hire a geriatric care manager to help you access palliative care resources.

Q. Are palliative care and hospice care connected?

A. Yes, palliative care and hospice care continuity is an excellent way to benefit from supportive services for long term or critical care illnesses. A patient would be transferred to hospice if their health gets to a point where curative treatment is no longer an option and the prognosis is six months or less. Sometimes, patients improve or stabilize and they are discharged from hospice. Many hospice programs offer a transitions or palliative care program to support them until their condition deteriorates further and they, again, qualify for hospice. Some people are in and out of hospice for years.

Q. What kind of support can I expect from palliative care?

A. Palliative care services vary from one hospital or clinic to another. Don’t feel you are being pushy if you ask for the kinds of services you feel you need or deserve. For example, often times patients are discharged from the hospital and family members are expected to perform medical tasks they neither feel comfortable doing, nor the time to do if they are working full time. It is not unreasonable to push for help in arranging for a qualified medical person to take responsibility for these tasks.

Some programs, like Sutter Health, has the AIM (Advanced Illness Management) program to help families organize services to care for their loved one, but in other areas of the bay, state of country, you may have to create a patchwork of resources to meet the demands of caring for an illness at home. In that situation, it is often beneficial to hire a geriatric care manager (which JFCS has on staff) to take on the task. Geriatric care managers know what resources are available and what questions to ask. They can take on the entire burden of care for your family member and keep it all organized.

Q. What if the primary caregiver doesn’t want strangers in their house so the patient can’t benefit from these additional services until the caregiver literally needs medical attention, themselves, from caregiver burnout?

A. Recruit your doctor or clergy to encourage hiring help into the home. Have them really play it up as a requirement. Then, start with baby steps by hiring someone to come in just one or two days weekly. Have the hired caregiver do something particularly helpful or something the caregiver or patient really dislikes having to do, themselves.

There followed an extensive conversation about the need to educate both within the medical field, the community, patients and families about palliative care. The education is happening. Terms such as person-centered care and whole-person care are being bandied about as demand for this is consumer driven. This is exactly how hospice started in England in 1948, and it is now available world wide.

Redwing Keyssar and Gwen Harris host ‘death dinner parties’ for families to have those difficult conversations. They bring advance healthcare directives for family members to fill out. There are, actually, several similar ways to open a dialog about end of life wishes:
deathoverdinner.org
http://deathcafe.com
http://www.gowish.org

Redwing left us with one final thought, “Expertise can cure some things, but it is compassion that does the healing.”

 

“Optimizing Personal Health Strategies to Manage Parkinson’s” – Webinar Notes

Partners in Parkinson’s (partnersinparkinsons.org) is a partnership between the Michael J. Fox Foundation and AbbVie Pharmaceuticals. In early October, they held a webinar on optimizing personal health strategies to manage Parkinson’s Disease (PD), using goal setting. Though the webinar was supposed to be focused on “care beyond the clinic,” the first part of the webinar actually focused on communicating with your physician.

Most of the webinar applies to those with disorders other than PD. I thought the best part of the webinar was the section on mental health. To address mental health, those with a neurological disorder should:

* Monitor non-motor symptoms, such as depression, anxiety, apathy, sleep problems, and cognitive issues

* Consider speaking with a mental health professional and/or joining a support group

* Supplement medication with other strategies to manage mental health – exercise, meditation, massage, and counseling

You can find a link to the webinar here:

https://partnersinparkinsons.org/attend-a-webinar

Note that registration is required but there’s no fee to view the webinar.

Volunteer extraordinaire Denise Dagan listened to the webinar and took notes. They are shared below.

Robin

—————————————

Notes by Denise Dagan, Brain Support Network Volunteer

Care Beyond the Clinic: Optimizing Personal Health Strategies to Manage Parkinson’s
Partners In Parkinson’s
October 4, 2017 Webinar

Moderator:
* Dr. Soania Mathur, MJFF Patient Council Co-Chair and person with Parkinson’s

Speakers:
* Dr. Irene Richard, a movement disorder specialist
* Chad Moir, Founder of Dopafit: Parkinson’s Movement Center in Easthampton, MA
* Dan Kinel, a person with Parkinson’s

QUALITY OF LIFE

Maintaining Quality of Life (QoL) with PD
* Set goals to help maintain quality of life.
— What matters most to you?
— Adjust goals as needed.
* Control the variables that you can.
* Find balance between physical, mental and social health (they all affect each other).

Speakers define quality of life as doing what you want to do, when you want to do them. Parkinson’s often reduces QoL in some ways, particularly physically, but also enhances QoL in personal/emotional ways.

For Dan Kinel, focusing on maintaining QoL has improved his fitness, as he now focuses on exercise to best maintain his movement. He regularly shares with his doctor his current symptom condition as well as his diet and exercise routines, so his Dr. can address those symptoms Dan cannot control, like tremor.

Dr. Richard says Dan’s communication with his doctor in this way is perfect! Even if you only have a nurse practitioner with a lot of PD experience, getting feedback as to what may help maintain QoL is better than nothing until you can see your neurologist. You do need to strike a balance between living your life and spending more time than you would like on exercise and monitoring diet.

Chad always asks new members to Dopafit what their goals are in adding movement/exercise to their routine. In this way, Dopafit can support those goals in the most efficient and fun way. You won’t regularly do an activity you don’t enjoy. Try dancing if you don’t like Rock Steady Boxing.

Dr. Richard says people become frustrated when their body will no longer do things they used to. It helps to reset your expectations so you can continue to do some of the things you loved if you accept that you may be able to do those same things more slowly, or keep an open mind to explore things you have not done before, but that you may really enjoy now. Exercise – the earlier, the better – may benefit neuro-protective and restorative benefits, and even benefit mood, sleep, and thinking. Tai-Chi has been researched, particularly, but also mental exercises are of benefit in the same ways.

PHYSICAL HEALTH

Physical Health and Parkinson’s
* Be consistent with medication and other routines to help manage symptoms
* Build a management team of experts you trust
— Contact an AbbVie advocate to locate resources in your area at www.pdadvocates.co
— Allied care professionals
— Complementary medicine
* Exercise is KEY to optimizing overall health

Dan moves his body in some way every day to maintain mobility and flexibility. He also socializes with friends or community every day. He says, just do something you feel engaged in.

Dr. Mathur asked Chad how he helps members of Dopafit to overcome apathy. He encourages members to think about which activity they have tried that they, “don’t like the least,” and commit to doing that.

Dan says having a commitment to do an activity with friends, who are expecting him, helps him overcome apathy, laziness, loss of interest, and get out the door to move and/or be social.

Dr. Richard suggests that engaging with other people also helps with projecting your voice or being aware of your own facial masking as PD symptoms progress. If you let it, that feedback may help keep you from withdrawing so you continue to be engaged with people and active, which are both part of maintaining QoL. Setting a schedule with a spouse, friends, or a place like Dopafit to get out and socialize or exercise goes a long way toward this.

Chad says Dopafit is doing more than just old-fashioned workouts. They offer Rock Steady Boxing, giant Jenga for fine motor skills – and fun!, tango and other dance, Tai-Chi, the Art Cart for fine motor skills, and more. Having all these various activities available adds a tremendous social element to participating. It all plays in to QoL and the whole person, rather than just muscle strength.

Dan has done a tremendous variety of PT, OT, speech therapy, acupuncture, massage, social engagement and several exercises to slow the progression of his disease and maintain his QoL. He says to remember that others are going about their day and not paying attention to you, even though you may feel that everyone is staring at your gait, facial mask, etc.

Dr. Richard says all the things Dan has been doing is complementary to properly balanced medications, so you have to pay close attention to getting both in order to be able to do all activities throughout the day, safely.

MENTAL HEALTH

Mental Health and Parkinson’s
* Monitor non-motor symptoms
* Consider speaking with a mental health professional and/or joining a support group
* Supplement medication with other strategies to manage mental health
— Exercise
— Meditation
— Massage
— Counseling

Dr. Richard says it is very common to have depression, apathy, mood, sleep, concentration problems with PD, but your doctor can help with all of these with medication options in concert with exercise, meditation, counseling and other tools. Doctors don’t always ask about your mood or emotional state in your neurological appointments. She says, please, please, please don’t feel it is not a personal deficit, but one way in which your PD is manifesting itself so bring those changes up to your neurologist to get help.

Dan mentioned several members of his care team, but forgot to mention his therapist who really helped him to get through the depression that overtook him when he first got his PD diagnosis. It was a combination of medications, talk therapy, support group, etc. If he finds himself feeling that way again, he will reconnect with that therapist.

Dr. Richard reminds us that doctors believe depression that is treated before motor symptoms are noticed, is probably the first presenting symptom of PD because they now recognize depression can be a symptom of PD.

Dan says your doctor can’t read your mind, so you need to tell them how you have been feeling, regardless of the cause. If it is decreasing your QoL it is worth bringing up to discuss how to overcome those low feelings so you can feel more motivated to do the exercise, socialization, etc. that maintain QoL in other ways.

Dr. Richard wants everyone to remember to use the valuable services of PT, OT, speech therapists as part of your care team.

SUMMARY

Summary
Accomplishing goals and optimizing personal care
* Living well is about creating a plan and making changes as needed to address your overall health
* Set goals that address all aspects of your care, including physical, mental and social health.
— Speak openly with your doctor and other members of your care team about how they can help you reach your goals.

QUESTION & ANSWER

Dr. Richard says most people have multiple medical conditions as they age so if you have chronic low back pain you may not be able to participate in some of the popular exercise programs for PD, but you can seek physical therapy advice to find exercises that will not only keep you moving, but help the lower bcd pain. Communication between your neurologist and PT is crucial.

You can even start with your primary care physician (PCP) about those other medical conditions outside your PD. They may refer you to a neurologist, movement disorder specialist, or PT. Be sure all your team is communicating with each other.

Dr. Mathur brought up how does dementia play into PD care? Dr. Richard says you can get all levels of cognitive dysfunction in PD, especially as people get into really advanced years. It can just be executive function issues, which is easier to adapt to. But, in some cases people will develop dementia, which is defined as cognitive impairment that affects your ability to accomplish the activities of daily living without assistance. If you think you have cognitive impairment, you should have an evaluation. You can get recommendations for improving independence. You can find our you have delusions and learn how to manage living with this more confusing and debilitating condition.

Dr. Mathur asked Chad about his mother, who had PD which was undiagnosed for many years. Chad said she had cognitive impairment and as a care partner he found the best thing he could do with respect to activity is to meet her where she was because her ability to remember from one day to the next, have the motivation to cooperate with exercise, etc. was very fluid.

Dr. Mathur asked Dr. Richard if there is a minimum amount of exercise daily and how does medication play into that?
There are a lot of studies into what kind of exercise is best, what they achieve, how often to do it, and for how long. She says there is not definitive answer to any of it. She recommends doing something every day, get your heart rate up, but there is no specific prescription. Don’t overdo it so you are in pain or debilitated afterward. Don’t let it take over your life unless you truly enjoy spending that much time exercising. Stay really well hydrated!!!

Dan exercises right after taking medication so he can move most smoothly. He works out every day and is cognizant not to overdo it. He gets his heart rate up and tries to engage his mind while exercising. He really enjoys non-contact boxing. He really doesn’t want to overdo it so he doesn’t suffer an injury and have a tremendous set-back while he recovers from an injury.

Dr. Mathur asks if the massage therapist and other allied professionals should be certified? Dr. Richard says PT, OT and speech therapists should definitely be specially trained in PD. There are those who are specially trained in neurological conditions, but that is often focused on stroke. You would do better with someone who has been trained or is willing to educate themselves about PD specifically.

Dr. Mathur asked everyone what is the most important thing you could tell someone with PD to optimize their QoL.
– Dan would say you are still the same person the day after the diagnosis. Don’t obsessively look at the internet, exercise and reach out for support from whomever is willing to help walk you through this.
– Chad says be proactive. First thing, find a movement disorder specialist you feel comfortable with so you can really communicate with them about depression, etc. Then, build your team (PT, OT, speech therapist, etc.) and get involved in the PD community (support group, fundraising – whatever is for you). Exercise!
– Dr. Richard says keep an open mind because you will continue to learn, symptoms will change, get your information from reliable sources and once you have all the information discuss it with your Dr. and decide what treatments, medication, exercise, social involvement, etc. work for you over time.

Benefits of palliative care, and list of palliative care programs in Northern California

Recently I came across a research article on the emerging role of palliative care in multiple system atrophy (MSA) and progressive supranuclear palsy (PSP). The article makes the point that palliative care emphasizes “quality of life in progressive disorders” and is beneficial for all neurodegenerative disorders.

If you’d like to read the full article, check out this link:

www.sciencedirect.com/science/article/pii/S135380201630400X

Palliative Care and its Emerging Role in Multiple System Atrophy and Progressive Supranuclear Palsy
Parkinsonism & Related Disorders
January 2017, volume 34, pages 714

I had a feeling that if I shared this link, many of you would ask “where can I find a palliative care program?” Brain Support Network volunteer Denise Dagan created a list of as many palliative care programs as she could find on the Peninsula and in the South Bay. Since many of these medical clinics exist throughout Northern California — Sutter Health, Kaiser, PAMF, etc — this list should be useful to most of you on this list.

Robin

————————

PALLIATIVE CARE PROGRAMS ON THE PENINSULA AND IN THE SOUTH BAY
By Denise Dagan (Brain Support Network volunteer)
August 2017

California Pacific Medical Center (CPMC), in San Francisco, is part of Sutter Health. Information about their program can be found here: http://www.cpmc.org/services/palliative.html, or for more information contact Linda Blum, RN, NP, at 415-600-4576.

The Chinese Hospital, San Francisco Call 415-677-2349 for information.

Community Hospital of the Monterey Peninsula Ask your doctor for more information.

El Camino Hospital, Mountain View Call 650-988-7624 for information or visit https://www.elcaminohospital.org/services/palliative-care

Hospice By the Bay offers palliative care in collaboration with these hospitals:
Marin General, Sonoma Valley, Sonoma Acres and Broadway Villa Sonoma. Call 415-927-2273 for information.

Jewish Family and Children’s Services of San Francisco, the Peninsula, Marin and Sonoma Counties offers palliative care through Seniors At Home. Call 844-222-3212 or visit the JFCS’ Seniors At Home website.

Kaiser Permanente offers palliative care at several locations around the bay:
Oakland – Inpatient 510-801-7246, Outpatient 510-752-1834
Richmond – Outpatient 510-752-1834
San Francisco – Outpatient 415-833-0204
San Jose – Inpatient 408-972-6888, Outpatient 408-972-7311

Palliative Care


Santa Clara – Inpatient 408-851-7578, Outpatient 408-851-0537,

Palliative Care

Laguna Honda Hospital, San Francisco Call 415-682-1230 for information or to arrange a tour.

Mission Hospice & Home Care, San Mateo, offers in-home palliative care. Call the Clinical Outreach Team 650-554-1000 for information or visit https://www.missionhospice.org/services/transitions/.

Palo Alto Medical Foundation (PAMF) offers palliative care in several locations:
Dublin, Fremont, Mountain View, Palo Alto, Santa Cruz, and Sunnyvale

http://www.pamf.org/palliativecare/locations/

Pathways offers palliative care for any individual or private physician referral on the peninsula, south and east bay areas. Call 844-755-7855 for information.

Regional Medical Center, San Jose Call 877-868-4827 for information

St. Francis Memorial Hospital, San Francisco Call 415-353-6856 or 415-353-6180 for information.

St. Mary’s Medical Center, San Francisco Call 415-750-5907 for information.

San Francisco General Hospital offers inpatient palliative care in Comfort Care Suites. Ask your doctor for more information or visit http://hospital-zsfg.medicine.ucsf.edu/services/palliative.html.

San Mateo Medical Center, San Mateo County Health System Call 650-573-2381 for Information.

Santa Clara Valley Medical Center, San Jose Call 408-793-5974 for information.

Season’s Hospice and Palliative Care offers palliative care in both San Mateo and Santa Clara Counties. Call 855-812-1136 or email [email protected] for information.

Sequoia Hospital, in Redwood City, offers palliative care through Pathways. Sequoia Hospital is a co-owner of Pathways. Call 888-755-7855 for information.

Stanford offers palliative care in these locations:
Palo Alto – Lucile Packard Children’s Hospital. Call 650-497-8963 for information.
Palo Alto – Palliative Care at Stanford Hospital. Call 650-724-0385 for information.
San Jose – Cancer Center South Bay. Call 408-426-4900 for information.

Sutter Health This page has a list of 33 palliative care doctors affiliated with Sutter Health (including, CPMC, Mills-Peninsula Medical Center, PAMF and Sutter Pacific Medical Foundation) in several locations:
Alameda, Auburn, Berkeley, Burlingame, Castro Valley, Fremont, Hayward, Modesto, Oakland, Palo Alto, Roseville, Sacramento, San Francisco, San Jose, San Mateo, Santa Cruz, Santa Rosa, Sunnyvale, and Yuba City
http://www.sutterhealth.org/findadoctor/northern-california-hospice-and-palliative-medicine-doctors-results.html?Nao=0&recPerPage=100&Nao=0

UCSF Medical Center offers inpatient and outpatient palliative care at both Parnassus and Mission Bay, and inpatient palliative care at SF General Hospital. Call 415-502-6861 for more information.

Veterans Affairs (VA) offers palliative care at several locations:
Palo Alto VA Health Care System – contact them through [email protected]
San Francisco VA Medical Center offers hospice and palliative care through Geriatric Services. Call 415-221-4810, ext. 2-3224 for information.

Visiting Angels offers palliative care in several locations:
Burlingame – Call 650-344-2178 for information.
Fremont – Call 510-284-0000 for information.
San Jose – Call 408-241-5100 for information.
Sunnyvale – Call 408-735-0977 for information.

Vitas Healthcare offers palliative care in several locations:
Milpitas – Call 408-964-6800 for information.
San Francisco – Call 415-874-4400 for information.
San Mateo – Call 650-350-1835 for information.

With Grace Hospice and Palliative Care, San Jose Call 408-444-5500 for information.

 

“Even healthy people need a living will, but many people don’t want to think about it”

This is a good article from today’s “Washington Post” (washingtonpost.com) on why people may not complete a living will. The author makes the point that even if you don’t have a living will, everyone (healthy or not) should designate in writing a healthcare proxy and, ideally, have a discussion with the proxy about end-of-life wishes.

Here are some excerpts from the article:

* Even though advance directives have been promoted for nearly 50 years, only about a third of U.S. adults have them, according to a recent study. People with chronic illnesses were only slightly more likely than healthy individuals to document their wishes.

* “Many people don’t sign advance directives because they worry they’re not going to get any care if they say they don’t want” cardiopulmonary resuscitation, said the study’s senior author, Katherine Courtright, an instructor of medicine in pulmonary and critical care at the University of Pennsylvania. “It becomes this very scary document that says, ‘Let me die.'”

* That’s where the health-care proxy comes in. Just naming someone isn’t enough, though. To be effective, people need to have conversations with their proxy and other loved ones to talk about their values and what matters to them at the end of life.

The full article is worth reading:

www.washingtonpost.com/national/health-science/even-healthy-people-need-a-living-will-but-many-people-dont-want-to-think-about-it/2017/08/04/121f99ac-76d3-11e7-8f39-eeb7d3a2d304_story.html

Even healthy people need a living will, but many people don’t want to think about it
By Michelle Andrews
Washington Post
August 7, 2017 at 7:00 AM

Robin

 

“How to Improve Resilience in Midlife” (NYT)

Several years ago, we helped put on a caregiver conference where the keynote speaker talked about building resilience and coping skills in the face of parkinsonism and neurological decline. He said that resilience is both nature and nurture; there are definitely things we can actively do to build resilience. This article in yesterday’s New York Times is about that. Here’s one short quotation from the resilience expert interviewed for the article: “Live your life in a way that you get the skills that enable you to handle stress.”

The expert suggests this approach to improving resilience:

* Practice Optimism
* Rewrite Your Story
* Don’t Personalize It
* Remember Your Comebacks
* Support Others
* Take Stress Breaks
* Go Out of Your Comfort Zone

Here’s a link to the article:

Well|Mind
How to Improve Resilience in Midlife
By Tara Parker-Pope
New York Times
July 25, 2017

Robin

“Recording a Legacy: How to Create a Life Journal”

This is a recent blog post from Crossroads Hospice & Palliative Care (crossroadshospice.com).  The post describes their “Life Journal” program and encourages all families to consider creating such a journal.

In a separate blog post, Crossroads Hospice provides a list of questions to ask a loved one in order to create a journal or something similar:

www.crossroadshospice.com/family-caregivers-blog/2017/july/06/questions-to-ask-a-terminally-ill-loved-one/

Note that Crossroads Hospice operates in seven states.  One of those is NOT California!

Robin

——————–

www.crossroadshospice.com/family-caregivers-blog/2017/july/11/recording-a-legacy-how-to-create-a-life-journal/

Blog: Hospice Views
Recording a Legacy: How to Create a Life Journal
Posted on Tuesday July 11, 2017
Crossroads Hospice & Palliative Care

One of the most popular segments on NPR’s Morning Edition are recordings from StoryCorps (storycorps.org), a non-profit organization with the mission to collect, share, and preserve the stories of individuals from all walks of life.

StoryCorps typically has individuals interviewed by a friend or family member while a trained StoryCorps facilitator assists. After the interview, the individuals receive a CD of their conversation. With their permission, another copy is archived at the American Folklife Center at the Library of Congress.

Life Journals capture a legacy.

At Crossroads Hospice & Palliative Care, volunteers interview patients about their life story and gather the words and photos in a hardbound book called a Life Journal. The journals contain the history of the patient’s life, including their heritage, life experiences, treasured moments, and advice. The Life Journal is a lasting legacy to reinforce how important parts of the patient’s’ life has been to them and their family. It also provides the family with a book to cherish after their loved ones have passed.

You can create a similar book with your loved one’s stories, recipes, photos, artwork, or words of wisdom.

How to Create a Life Journal

Start by finding a good time to interview your loved one. Holidays may be convenient if you don’t often see them otherwise. However, holidays can also be chaotic. You may find it easier to schedule several days when you and your loved one will be able to give the project your undivided attention.

Interviewing for a Life Journal

For someone you are close to, you probably already know a lot of the big family stories. You can ask your loved one to retell these stories or fill in some additional details to get the conversation started. Then start to work through different areas of their lives – their family and heritage, school days, time in the military, courtship of a spouse, and raising a family are all good starting points. Use our list of questions to ask an older relative to get ideas on what to ask.

Once you have the basics covered, schedule a follow-up visit to fill in details. At this second visit, you should have a good idea of what the outline of your loved one’s Life Journal is going to look like. This is a good time to confirm details and look through old photos together to go along with the stories you are including in the book.

Compiling the Life Journal

Having gathered all your notes and photos together, you have a few different options for how you would like to present them.

For those comfortable with a computer, the easiest way to create a Life Journal is to use an online service like Shutterfly to combine the stories and photos together. The user-friendly application will walk you through choosing a design and color scheme that best fits your loved one’s style and interests.

For those less technologically inclined, a scrapbook is a wonderful alternative. Craft stores have many options for books and added embellishments like stickers and decorations. You or a friend or family member can print out the stories you wish to include or can write them out by hand.

Layout each page of your scrapbook on blank pieces of paper before you begin affixing anything in the final book. This will give you the opportunity to make adjustments to the layout and the order of pages. Once you are sure you know how you want the book to be laid out, begin gluing down the key elements like stories and photos, then add things like quotes and stickers.

Presenting the Life Journal

Once your project is complete, share it with your loved one. They will enjoy reading the stories as much as you do. If your loved one is willing, you can also schedule a family book release where the family can come together to enjoy the book and share additional stories. If you do a book release party, consider recording some of the new stories you hear for posterity. You never know where these stories will lead you.

Copyright © 2017 Crossroads Hospice & Palliative Care. All rights reserved.

Eight medical alert systems worthy of consideration (Reviews.com, February 2017)

This blog post summarizes the evaluation done by Reviews.com of 69 medical alert systems in early 2017. There were several winners:

Best customer service – Bay Alarm Medical
Best response time – Medical Guardian
Best mobile technology – MobileHelp

Five other systems to consider were:

Acadian On Call
Philips Lifeline
GreatCall Lively
Walgreens ReadyResponse
ResponseLINK

(Note that Philips Lifeline is available at a reduced rate from many hospitals in the San Francisco Bay Area.)

Reviews.com encourages consumers to “take action”:
* don’t dance around the subject with an elder
* evaluate the most appropriate system for your situation
* check your mobile coverage

In its evaluation, Reviews.com considered these factors:
* nationwide coverage
* whether the device required a full home security system
* excellent purchasing process
* breadth of equipment
* easy to get started and easy to stop the service

Here’s a link to the Reviews.com article:

www.reviews.com/medical-alert-systems/

Best Medical Alert Systems
Updated: February 20, 2017
Reviews.com

Robin