Our 15th year of caregiver-only support group meetings

Tonight, Brain Support Network is starting its 15th year of holding caregiver-only support group meetings for those dealing with Lewy Body Dementia, Progressive Supranuclear Palsy, Multiple System Atrophy, and Corticobasal Degeneration. Thanks to all of our volunteers for making possible this milestone.

We meet nine times a year in San Mateo. Let us know if you’d like to be added to our support group meeting reminder email list.

“Lewy Body Rollercoaster” – Alzheimer’s Weekly

Here’s an excerpt from an Alzheimer’s Weekly article from April 12, 2014 about Lewy body dementia (LBD):

www.alzheimersweekly.com/2014/07/lewy-body-rollercoaster.html

Excerpts from

Lewy Body Rollercoaster
April 12, 2014
Alzheimer’s Weekly

Attention, alertness and cognition have dramatic fluctuations in Lewy Body dementia. Caregivers call these ups and downs “The Roller-Coaster of LBD.”

“I watched my husband experience a decline in cognition followed by a period of what seemed like improved function only to plunge again into confusion with more frequent hallucinations,” says one caregiver newly acquainted with Lewy body dementia (LBD). According to the Lewy Body Dementia Association (LBDA), these ups and downs in function are sometimes refer to by family caregivers as the “roller-coaster effect” of LBD. Fluctuating levels of cognitive ability, attention and alertness are one of the core features of LBD.

Important Diagnosis
“The combination of the motor signs of Parkinson’s disease (slowed mobility, stooped posture and tremor) and mental confusion, especially if the degree of confusion fluctuates day to day, should raise a red flag for suspicion of LBD,” says Howard I. Hurtig, M.D., Chair, Department of Neurology, Pennsylvania Hospital, and Elliott Professor of Neurology, Perelman School of Medicine, University of Pennsylvania. “If those symptoms are accompanied or preceded by REM sleep behavior disorder (vivid dreams, dream enactment, hitting bed partner, falling out of bed) and visual hallucinations (seeing people, animals, etc., that aren’t truly there), then the diagnosis of LBD is almost certain. Even when all symptoms of LBD are present, it is critical for the evaluating doctor to look for underlying, TREATABLE causes of dementia.” A thorough assessment will include an inventory of daily medications (drugs can produce a “chemical” state of pseudodementia), CT or MRI scan of the brain, blood tests for thyroid function and vitamin deficiency and other causes of dementia that can be identified by routine study.

Following Alzheimer’s disease, LBD is the most misdiagnosed form of dementia but the second most common cause of progressive dementia, affecting 1.3 million Americans. LBD is associated with abnormal protein deposits in the brain, called Lewy bodies, that impair thinking, movement, sleep and behavior (causing people to see hallucinations or act out dreams, sometimes violently). Also, it affects autonomic body functions, such as blood pressure control, temperature regulation, and digestion. Recognizing symptoms early can help people with LBD get comprehensive and appropriate treatment and help caregivers get much needed support. It’s difficult to diagnose LBD, because its early symptoms resemble symptoms found in Alzheimer’s and Parkinson’s disease.

Pain and Fatigue in Parkinson’s – Webinar Notes

The Michael J. Fox Foundation (michaeljfox.org) hosts webinars on the third Thursday of every month.  Lately they’ve been re-broadcasting recordings of previous webinars.  Last Thursday’s webinar was a re-broadcast of a July 2016 webinar on Parkinson’s pain and fatigue.

There is often fatigue in all of the disorders in the Brain Support Network group, and many of our community members experience pain. Listening to the webinar recording may be worthwhile for many.  The only information that will NOT be relevant to most of you is the info about off-periods caused when Parkinson’s medications wear off.

You can find the recording online here:  (you’ll have to register first)

https://www.michaeljfox.org/understanding-parkinsons/webinar-registration.php?id=9

Here are two highlights from the question and answer session:

Q. What about treatments for people in wheelchairs?
A. You definitely need to work with a good physical therapist for the best advice for exercising in a chair.  Chair yoga and tai chi are just the tip of the iceberg.  You don’t get an exercise pass because of the chair.

Q. What can family members do to help with pain or fatigue?
A. Care partners should use socialization to get their person with Parkinson’s (PwP) up and going.  It really is helpful just to get the PwP out of the house, walk in the neighborhood, chat with a neighbor, create a new recipe or anything to get your mind off the PD.  Walk the dog or exercise in any way is really helpful.

Brain Support Network volunteer Denise Dagan listened to the re-broadcast last week and has shared notes.

Robin

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www.michaeljfox.org/understanding-parkinsons/webinar-registration.php?id=9

Notes by Denise Dagan, Brain Support Network volunteer, May 2018

Parkinson’s Pain and Fatigue
Webinar by Michael J. Fox Foundation
July 21, 2016

Speakers:  Julie Pilitsis, MD, PhD, Adolpho Ramirez-Zamora, MD, and Toni Palumbo, person with Parkinson’s

PAIN

More than 75% of people with PD may experience pain.  Pain in PD can come from:
– Muscle rigidity and slowness
– Dystonia (muscle cramping)
– Constipation and bowel pain
– Musculoskeletal pain
– Central pain (burning sensations and sharp bursts of pain)
– Dyskinesia (involuntary movements)

Pain is as common in Parkinson’s as other non-motor symptoms.  Pain can be one of the earliest symptoms and the source is sometimes mis-diagnosed before tremor and/or gait and balance symptoms present to be able to diagnose PD and associate the pain as a PD symptom.

Pain can be exacerbated by stress, over exertion or illness.  The degree to which someone experiences pain varies by individual perception, medication effectiveness in controlling motor symptoms (on/off periods).  Dystonia during off periods (when medications are wearing off) can be painful.

Dyskinesia begins after 5-7 years of PD medication treatment and can be painful.

Pain is one of the most under treated symptoms of PD.

Talking to your physician (start with your neurologist) about your type of pain can direct treatment.  Discuss the location, feeling and duration of your pain to understand the root cause and target treatment for best chance of relief.
– Your doctor may add, reduce or change dopamine medication dose and type
– Anti-inflammatories, painkillers, opioids (as a last resort as it is constipating) and antidepressants may help manage pain
– Non-pharmacological methods include:
Exercise
Massage
Relaxation techniques (e.g. hypnosis, mindfulness, tai chi, yoga)
Acupuncture
Heating pad or cold pack

Start with your neurologist but you may need a team approach to manage pain as you determine the mechanism causing the pain or eliminate through one physician at a time where the pain does NOT originate.  You may need to move on to a gastroenterologist, orthopedist, urologist, other specialist or chronic pain management clinic.

There is concern with drug interaction in PD because there may already be a cocktail of meds prescribed just for the PD symptoms and adding more to treat pain is worrisome and could result in under treatment.  Depending on the source of the pain doctors can start with NSAIDs, and physical therapy which may include heat, massage, and exercise.  Of course, excruciating pain needs to be treated more aggressively and immediately.

Toni has been diagnosed for 12 years so treats pain more aggressively, including botox injections for dystonia.  She uses painkillers (not opioids) and finds hot tub, tai chi, boxing and socialization most helpful for pain.  The movement disorder specialist advises Toni on all over the counter meds and supplements before taking them to avoid medication interactions.  Toni finds boxing class + an hour of bike riding is too much and causes pain. Her movement disorder specialist helped her find a good exercise balance to avoid pain.

FATIGUE

Fatigue is another challenging non-motor symptom of PD.  Fatigue: Overwhelming sense of tiredness, lack of energy, and feeling of exhaustion that interferes with normal function.
– Estimates vary, but up to 70% of people with PD may experience fatigue
– Parkinson’s fatigue eases with exercise and activity
– Fatigue may be associated with:
Early sign of PD
Prolonged disease duration
Increased disease severity
Depression, anxiety and apathy
Sleep disturbances
Off episodes

Toni describes fatigue as being very close to apathy, as she can wake from a good nights sleep with fatigue.  She battles fatigue days by walking her dog every 20 minutes for 10 minutes, just to get up, moving and motivated.

Fatigue in PD is extreme exhaustion which cannot be explained by effects of or lack of medication, lack of rest, lack of sleep. Fatigue is improved with exercise and good medication management as it can be worse during off times.  Whereas, apathy in PD is a lack of drive to do things one normally particularly enjoys doing.

Fatigue can increase one’s experience of pain and short temper.  Any type of exercise will reduce fatigue (boxing, cycling, etc.), especially if you exercise together as socialization can distract from pain and fatigue.

Interventions and planning can help manage fatigue.  Doctors may adjust or stop medications or may prescribe other medications:
– Wakeful-ness agents
– Stimulants
– Antidepressants

Non-Medication interventions:
– Exercise
– Socialization
– Daily scheduling: planned rest and pacing of activities
– Vitamin supplements: vit. B, iron, folate and magnesium
– Lifestyle changes: caffeine, alcohol and tobacco reduction

You should discuss any supplements you take with your doctor as some can be toxic at certain levels, cause nerve damage and have other adverse effects.  Your physician should do blood work prior to recommending you take B complex or other supplements which can treat symptoms, including pain.

Caffeine has been studied in reducing fatigue in PD, but found to be ineffective.  It has also been tested in treating daytime sleepiness with inconclusive effects.  If you take too much caffeine or have clear worsening of fatigue when caffeine is out of your system you need to reduce caffeine and increase exercise.

QUESTION AND ANSWER

Q. How is DBS (deep brain stimulation) useful for treatment of pain?
A. In general, after DBS in the sub-thalamic nucleus people report a reduction of pain associated with movement.  (In 2016 they did not) know how long this effect lasts.  Perhaps existing DBS can be adjusted in order to treat pain.  As of 2016 animal trials were under way to learn more about this.

Q. Please provide a better definition of “off-time.”
A. The longer you have PD you are more likely to experience this more frequently.  On is when your medication is effective.  Off is when your medication has worn off.  As you take PD medications over many years, it wears off sooner and sooner, causing more off times and resulting in needing to take medications more frequently throughout the day.  There are newer medications and medication formulations to combat this effect.

Q. What about treatments for people in wheelchairs?
A. You definitely need to work with a good physical therapist for the best advice for exercising in a chair.  Chair yoga and tai chi are just the tip of the iceberg.  You don’t get an exercise pass because of the chair.

Q. What do we know about medicinal marijuana?
A. Marijuana has compounds that we thought can be helpful in PD, especially in dyskinesia and tremor although recent studies have not shown this. Concern about potential side effects, particularly with respect to cognition and falling are very real.  We don’t know how marijuana could affect fatigue because only stimulants have been tested for fatigue.  Marijuana has the opposite effect so it hasn’t been studied for fatigue.

Q. What can family members do to help with pain or fatigue?
A. Care partners should use socialization to get their person with Parkinson’s (PwP) up and going.  It really is helpful just to get the PwP out of the house, walk in the neighborhood, chat with a neighbor, create a new recipe or anything to get your mind off the PD.  Walk the dog or exercise in any way is really helpful.

Q. What is the effect of alcohol on fatigue?
A. As with caffeine, moderation is the key.  If you’ve spoken with your neurologist and determined it is fine, then fine.  If you are using alcohol to sleep you have a problem because alcohol should not be self medication.  Caffeine is the same, if you need it for wakefulness it will only cause you more fatigue and probably more pain.

Q. How do you determine what kind of pain you are experiencing?  It could be normal aging or a PD symptom.  Is it important to distinguish?
A. It is important to distinguish.  In the past we didn’t think pain was part of PD.  Neurologists thought of PD as exclusively a motor disorder, but now we know there are many non-motor symptoms, including pain.  Sometimes, it is very difficult to tell the cause of pain.  Most of the time the source is multi-factorial (has many causes).  It can be medication effect in addition to orthopedic or arthritic.  An in-depth discussion and complete history can help your neurologist to guide you to the most probably cause and most effective treatment.  Be persistent!

Q.  What do we still need to know about pain and fatigue in PD?
A. Treating pain and fatigue must know the mechanisms causing pain from the brain out into the body.  It would be great if we could have biomarkers and specific measures to determine if inflammation, neurologic sources, or others are the source of pain so we can target treatment.

Q. What do you recommend people do approach treatment of pain and fatigue?
A. The best thing is to have an open dialogue with yourself, your family and your doctors to determine what is contributing to pain and fatigue.  We sometimes don’t realize what stressors are contributing to worsened PD symptoms.  Socializing and exercising need to be as much a part of your treatment as medications, diet and sleep.

“A Parkinson’s Life and a Caregiver’s Roadmap” – Book Review

The Northwest Parkinson’s Foundation (nwpf.org) has a community blog. Recently a blogger named Pete Beidler reviewed a book by Jolyon Hallows titled “A Parkinson’s Life and a Caregiver’s Roadmap.” In the book, Jolyon describes his journey with his wife Sandra, who lived with Parkinson’s Disease for 20 years. The third part of the book is focused on caregiving.

The reviewer describes the third part this way: it “draws from Hallows’ own experience to give to other caregivers advice about what he calls the three dimensions of caregiving: the physical, the structural, and the emotional. I recommend the book for readers who want to know the gritty details of what probably lies ahead for them: the inevitable decline, the end of driving, the bedside commode, the in-bed sponge bath, the dressing, the legal decisions, the end-of-life decisions, and so on. … Hallows says that among the lessons he has learned in confronting Parkinson’s is that it is good to seek humor in dealing with situations that are not in themselves funny: ‘laughter is not disrespectful’.”

You might enjoy reading this book. If you do, please share what you learned. And consider donating the used book to our local support group’s lending library.

Robin

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nwpf.org/stay-informed/blog/pete-beidler-reviews-jolyon-hallows-a-parkinsons-life/

Northwest Parkinson’s Foundation
PD Community Blog, May 17, 2018
Pete Beidler Reviews “A Parkinson’s Life”

A Parkinson’s Life and a Caregiver’s Roadmap, by Jolyon E. Hallows. Burnaby, British Columbia, Canada: WCS Publishing, 2018. 225 pp.

In his Afterword to “A Parkinson’s Life and a Caregiver’s Roadmap,” Jolyon Hallows confesses to a certain uncertainty of purpose: “When I started writing this book, my motivations were unclear. It seemed important to me, but I wasn’t sure why” (185). By the end he seems to have found clarity of purpose. He wanted his readers to know what a Parkinson’s marriage is really like, both for the one with the disease and for the caregiving spouse.

Hallows divides his book into three parts. Part I, Prelude, gives the history of the author’s and his wife Sandra’s life together before she receives her diagnosis, and it describes the basic facts about Parkinson’s disease and the various treatment options for people who have it. Part II, Living with Parkinson’s, gives a mostly chronological account of the progression of Sandra’s disease and her husband’s increasingly desperate efforts to care for her. Part III, Caregiving, draws from Hallows’ own experience to give to other caregivers advice about what he calls the three dimensions of caregiving: the physical, the structural, and the emotional. I recommend the book for readers who want to know the gritty details of what probably lies ahead for them: the inevitable decline, the end of driving, the bedside commode, the in-bed sponge bath, the dressing, the legal decisions, the end-of-life decisions, and so on.

Hallows is an excellent writer. He has a rare gift for explaining complicated concepts in simple language. What does a dopamine neuron do? Hallows explains it this way:

“Let’s say you pass a storefront in the mall and you see something in the window that interests you. Do you go into the store to examine it or do you move on? It all depends. Do you have the money? Is there someone waiting for you at the coffee shop? Are you in a hurry? Do you really need, or want, whatever this is? The evaluation of each alternative—to go into the store or to move on—is one of the things the dopamine neurons provide. They help us choose.

But what happens when the signals fail? In that case, there’s nothing to tell the brain what to do. So, lacking direction, it does the logical thing—it freezes,” (19–20).

Why can’t we get artificial dopamine into the brain to replace the natural dopamine that the brain has stopped making? Hallows elaborates:

“The brain is persnickety. It doesn’t tolerate some of the stuff the bloodstream carries, so it’s protected by something called the ‘blood-brain barrier,’ which acts like a security guard in an exclusive gated community, keeping out the riffraff. Among the many substances that can’t cross the barrier is dopamine. You can take all of it you like, but none of it reaches your neurons. . . . Enter levodopa,” (32).

A Parkinson’s Life and a Caregiver’s Roadmap is not about malls, of course, or coffee shops, or gated communities, or riffraff, but Hallows uses these familiar concepts to help us to understand unfamiliar terms like dopamine neurons, blood-brain barriers, and freezing.

One of the attractive features of Hallows’s writing is his sense of humor. When he introduces levodopa, for example, he quips, “No, levodopa is not curt advice to someone married to a dullard” (32). Get it, leave-a-dope? Another example: when Hallows’s wife Sandra has deep brain stimulation surgery, he has to learn how to use the control stimulator: “I showed the stimulator to Sandra’s sister Vivian and boasted I could now turn Sandra on and off. She said it was a sorry excuse for a man who needed an electronic device to turn his wife on,” (78). Toward the end of the book Hallows says that among the lessons he has learned in confronting Parkinson’s is that it is good to seek humor in dealing with situations that are not in themselves funny: “laughter is not disrespectful” (183).

One of the most striking features of “A Parkinson’s Life and a Caregiver’s Roadmap” is its honesty. Sandra lives for more than two decades after her initial diagnosis. During those decades she grows less and less able to do the things she had always enjoyed: her work as a nurse, her driving, her ability to travel, her ability to take care of herself, her independence. It would perhaps have been possible for Hallows to report Sandra’s losses in positive terms as gains in love or devotion or knowledge or humility, but Hallows does not do that.

He focuses squarely on the disabling features of the disease: “In the final stage of the disease, the person is bedridden and needs help in all areas of his or her life including getting dressed, eating, and personal hygiene” (26). Hallows tells us that he has to brush Sandra’s teeth, help her get on and off the portable bedside commode, wipe her, give her sponge baths in bed, help her put her panties and bra on, and so on. Nor does he sugarcoat the unpleasantness of the disease for both of them by promising a cure: “Parkinson’s is far more complex than researchers had suspected and. . . . it will be a long time before there’s a cure on the horizon” (20). Furthermore: “This prolonged research is expensive—one source cites over a billion dollars and ten to twelve years to bring a new treatment to market. . . . So even if researchers find a real cure, it will take years to prove it” (28).

The medications and surgeries that are now available have helped many Parkinson’s patients, but they can help for only so long: “Medications have given generations of Parkinson’s patients extended time and a better quality of life, but there’s only so much they can do in the face of the disease’s inexorable progress,” (34). When Sandra dies, Hallows tells readers that “Sandra put up a valiant fight against her Parkinson’s. But it’s not a fight anyone ever wins” (181).

Should you read this book? That depends. If you want to know the grim facts about what probably lies ahead for people with Parkinson’s and for those whose lot it is to care for them, “A Parkinson’s Life and a Caregiver’s Roadmap” is a good choice. If you remember always that Parkinson’s follows a different trajectory for each person and that no single “roadmap” will work for all caregivers, then Hallows’ book can help you to anticipate and plan ahead for some of what probably lies in front of you. As you come to terms with the disease and with its almost inevitable downward progression, you may find solace in learning from this book that you are not alone.

Pete Beidler has read and reviewed many books about Parkinson’s disease. Parkinson Pete’s Bookshelves: Reviews of Eighty-Nine Books about Parkinson’s Disease (Coffeetown Press, 2018, ISBN 978-1-60381-746-2) can be purchased here.

Daily caregiving balancing act – how much to help?

Brain & Life magazine (brainandlife.org) is published by the American Academy of Neurology.  In the most recent issue, they have a good article on caregiving.  Here’s an excerpt:

“As many caregivers know, offering just the right amount of help can be challenging and stressful for both sides, and requires time and communication. And even after striking the right balance, the needs of the person being cared for may change, requiring caregivers to recalibrate.”

Here’s a “caregiving rule” suggested by a nurse practitioner in the article:

“Dr. Resnick has what she calls a three-time rule: A caregiver allows a patient three tries at a task before stepping in. If the task is putting on a shirt, Dr. Resnick will do one step, perhaps helping the patient put on one sleeve, and then step back. If getting the button secured is the next challenge, she breaks down the action and allows the patient to try again. If the patient is truly not up to a task, Dr. Resnick suggests working together to accomplish it, for example, by placing a patient’s hands over your own as you perform an action.”

Here’s a link to the full article:

www.brainandlife.org/the-magazine/article/app/14/2/20/in-the-balance-knowing-how-much-to-help-is-a

In the Balance
Knowing how much to help is a daily challenge for many caregivers. Our expert advice can help you find that sweet spot.

by Natalie Pompilio
April/May 2018
Brain & Life

Man found joy in completing puzzles that were family photos

This article from last year is about twin daughters who discovered a company that created puzzles from family photographs, and that their father with Lewy body dementia (LBD) really enjoyed putting together these puzzles.

This activity might be of interest to more than those with dementia.

www.brainandlife.org/the-magazine/article/app/13/1/23/puzzle-power-as-lewy-body-dementia-narrowed-their-fathers-world

“Affordable Options for Grocery Delivery”

Brain & Life magazine (brainandlife.org) is published by the American Academy of Neurology.  In their January 2017 issue, they address the challenge that many with neurological disorders have of getting to the grocery store.  Sometimes it’s more practical to have groceries delivered.

Brain & Life magazine investigated these options:

* houses of worship
* Supplemental Nutrition Assistance Program (food stamps)
* Meals on Wheels
* food banks
* online shopping

The full article can be found here:

https://www.brainandlife.org/the-magazine/article/app/13/6/10/affordable-options-for-grocery-delivery

Affordable Options for Grocery Delivery
by Frank Kritz
December/January 2017
Brain & Life

Robin

Fear of the next level of care and the need to stop time traveling – Speaker notes

WellMed Charitable Foundation, based in San Antonio, regularly hosts teleconferences for caregivers, called Caregiver Teleconnection (caregiversos.org).  A recent guest speaker was a professional counselor addressing the topic of hospital discharge planning.

Unfortunately many with neurological conditions end up being hospitalized at some point. The hospitalization and subsequent care can change the course of a person’s life (and of a caregiver’s life).

As always, Brain Support Network’s volunteer Denise Dagan listened to the teleconference and shared her notes. In looking over Denise’s notes, I didn’t find the speaker’s presentation very compelling. However, I was very interested in these three comments made by the speaker at the end of the teleconference in response to questions:

1.  When presented with discharge facility or in-home health agency options, start by using your cell phone or tablet in the hospital during the discharge planning conversation.  Use specific search terms like “Medicare home health coverage.”

2.  Nobody wants to go to the next level of care (either in-home care or any type of facility).  That is primarily due to fear.  If you have a family member in that situation you need to be firm even though it is emotionally difficult.  To ease this transition you can have someone benefiting from that level of care speak with your family member about their personal experience in the level of care you are proposing.

3.  In addition, the patient and family members need to stop ‘time traveling’ (worrying about ‘what ifs’) because your concerns may never come to fruition and in the meantime they are preventing you from living while you focus on your fears.  Do research to allay your fears into what the next level of care might be, how much it could cost, and locations most convenient to you.  Get your VA benefits application process started, if you qualify.  Use behavioral/mental health insurance for some counseling to help manage fears.  Join a support group (both patient and caregiver).

Denise’s complete notes are copied below.  This teleconference was not recorded as there was a substitute speaker.

Robin

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Notes by Denise Dagan, Brain Support Network Volunteer

Working More Effectively with Social Workers: Hospital Discharge Planning to Rehab, Transition Home and Long Term Care
Speaker:  Zanda Hilger, LPC, NCC

WellMed CaregiverSOS Caregiver Teleconnection
April 30, 2018

Social Workers have a master’s degree and, depending on the state are licensed (sometimes clinical, with more training).  You find them in any medical organization, including senior/geriatric clinics, like the intended speaker, Christine Casbeer.  The substitute speaker, Zanda Hilger, recommends connecting with a social worker in a senior/geriatric clinic if you are helping a senior.

When does a social worker step in?  Most caregivers will encounter a social worker in a hospital (not the ER), but after the person has been admitted. Their primary interaction with families is in discharge planning, which is determining if the patient is ready to be discharged into a safe and supportive environment.  In most cases the mindset is that the patient will go home to be cared for by family or to a rehabilitation center from the hospital.

Discharge will be to home (with or without a home health agency) or to a rehabilitation center if there is medical necessity.  There should be an assessment to determine whether the person has medical need after discharge to reduce risk of readmission to the hospital. That assessment is done by the discharge social worker or nurse prior to discharge.  A social worker or nurse will follow up with the patient to ensure the patient and family are aware of community resources to support them after discharge.  When the medical need is no longer required, home health or rehab will be discontinued, but community resources should be in place before medical support is removed.

[Medicare does NOT cover home health for activities of daily living – bathing, dressing, feeding, etc.  Medicare DOES cover home health service for intermittent skilled nursing care (like injections, wound care), physical therapy, speech-language pathology services, occupational services.]

Families should advocate for home health if they feel their family member has medical need or if the hospital is expecting family to perform medical tasks with which the family ill equipped to handle. Advocating for home health ensures their family member is evaluated appropriately for medical need.

Zanda’s experience with her own mother was to accept the hospital’s discharge plan.  The facility the hospital transported Zanda’s mother to was old and not some place she wanted her mother to be placed.  Zanda admits she should have done a visit to the place the hospital was recommending her mother be discharged to and worked with the discharge planner to determine the best location for her mother to be discharged to before the transport happened.  She recommends working closely with the discharge planner, slowing the process, and doing your homework to determine the best place for your family member before the transport happens.

It tends to happen that the family is told discharge will happen at a particular time and the family waits all day.  Then, when the discharge social worker finally shows up they present the couple of facility options and say the decision needs to be made within 2-3 hours.  In that case, the family needs to push back and tell the discharge social worker that it is not possible to evaluate the facility or home health agency options within that time.  If the discharge social worker is inflexible, the family should learn the name of the discharge social worker’s head of department and take your appeal for more time or more information up the chain of command.

The social worker discharge planner’s mandate is to discharge patients from the hospital, but also to ensure the patient is going to a place with enough support to reduce their readmission to the hospital.  The discharge planner’s job and level of information does not include discharge to assisted living or retirement living.  If you want to discharge to that level of care, you need to research those options yourself.  Discharge social workers should not be recommending these for-profit facilities.

To research assisted living or retirement living you might use A Place For Mom or New Life Styles online information.  These resources are paid by the residential facilities they recommend so their lists may be incomplete if all the facilities in your area do not subscribe to their services.  They are both reputable organizations with which to begin your search.

Social workers job is to advocate for your family member’s best care.  If you feel your social worker is not providing enough information or devoting enough time to your situation, be assertive and direct but not aggressive.  Tell them directly that you need more information about X, or say something like, “It seems you are too busy to discuss this now, can we make an appointment to discuss this in depth at ?’o’clock.”  You can also tell your social worker you are not getting enough information or support from them and ask if you can work with their supervisor.  Be kind, not aggressive or angry and you should be able to get what you need from the system.

eldercare.acl.gov – purpose is to help people in the US locate non-profit/government resources like adult day programs, Alzheimer’s disease, behavioral health, caregiver support, elder abuse prevention, financial assistance, food and nutrition, health insurance, healthy aging, home repair and modification, housing options (not for-profit), in-home services, legal assistance, long term care, nursing home and long term care facilities, transportation and volunteerism.

You can use eldercare.acl.gov to check out resources your social worker is recommending or to find resources and run them past your social worker to get their opinion about the usefulness of a particular resource.

Question and Answer:

When presented with discharge facility or in-home health agency options, start by using your cell phone or tablet in the hospital during the discharge planning conversation.  Use specific search terms like “Medicare home health coverage.”

Nobody wants to go to the next level of care (either in-home care or any type of facility).  That is primarily due to fear.  If you have a family member in that situation you need to be firm even though it is emotionally difficult.  To ease this transition you can have someone benefiting from that level of care speak with your family member about their personal experience in the level of care you are proposing.

In addition, the patient and family members need to stop ‘time traveling’ (worrying about ‘what ifs’) because your concerns may never come to fruition and in the meantime they are preventing you from living while you focus on your fears.  Do research to allay your fears, as into what the next level of care might be, how much it could cost, and locations most convenient to you.  Get your VA benefits application process started, if you qualify, also allays fears.  Use behavioral/mental health insurance for some counseling to help manage fears.  Join a support group (both patient and caregiver).

 

“Reframe Your Experience” (with a neurological disorder)

This recent blog post on the seven key steps to take after a Parkinson’s diagnosis doesn’t really have much that’s new.  However, I liked step #7, titled “Reframe Your Experience.”  That step is worth sharing because it applies to all of us — whether we have a neurological diagnosis (not necessarily Parkinson’s) or a family member with a neurological diagnosis.

Here’s #7 — “Reframe Your Experience”:

In addition to getting support, thinking positively can help you come to terms with your diagnosis. One of [neurologist Dr. Melita] Petrossian’s patients has taken to viewing Parkinson’s as a friend (he calls him “Mr. P”), while others repeat mantras like, “I have Parkinson’s, but Parkinson’s doesn’t have me.”  Petrossian acknowledges that this approach may feel a little cliched or trite, “but having a mantra that recognizes your struggle without diminishing who you are and without overemphasizing the role Parkinson’s plays in your life can help you cope and become more resilient.”  [Another of her patient’s said]:  If you live with Parkinson’s, “you have to recognize that you have to play a different game, you have to change the rules of the game.” In other words, [Petrossian] says, “you have to re-imagine your life.”

The full blog post is copied below.

Robin

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www.seniorhomes.com/w/7-key-steps-to-take-after-a-parkinsons-diagnosis/

7 Key Steps to Take After a Parkinson’s Diagnosis
by Katherine O’Brien
SeniorHomes.com
April 26th, 2018

Finding out you have Parkinson’s disease, a progressive brain disorder characterized by tremors and changes in speech and gait, is a hard pill to swallow.

There’s a lot to take in, and it can be incredibly overwhelming not only for the person with the diagnosis, but for their family. But with more research into the disease now than ever before, there are a number of smart strategies you can take to help slow down the disease’s progression, allowing you to live life to your full potential.

1. Connect With a Neurologist
Step number one: Ask your primary care doctor to refer you to a neurologist, preferably one who is a movement disorders specialist. Patients who work with neurologists tend to have better results than those who don’t, says Melita Petrossian, Director of the Pacific Movement Disorders Center in Santa Monica.

But don’t just take her word for it—this study published in the journal Neurology shows that patients treated by neurologists may live longer and are less likely to be placed in a nursing home or to break a hip. Even if you can only get to a specialist once a year, it can still can help, says Petrossian. Another option for those who live far from major medical centers: video conferencing.

2. Find Meds That Work for You
Although there’s no cure for Parkinson’s yet, medications can often dramatically help control symptoms. Do be aware that PD drugs can produce significant side effects like involuntary movements. Additionally, you must take meds exactly as directed to avoid side effects such as gait freezing, unpredictable incidences of being unable to move or keep moving.

Another caution: keep your protein and fat intake in check, as too much of either can interfere with your body’s ability to absorb Parkinson’s medication. If medication doesn’t adequately control your symptoms, deep brain stimulation, which involves the implantation of electrodes in the brain, is another–albeit riskier—option.

3. Participate in Research
Taking part in clinical trials — particularly those seeking treatments to slow or stop disease progression – is a direct way to contribute to finding a cure for PD. “I support patients enrolling in clinical trials because there is a tremendous amount of work left to understand Parkinson’s disease and how to prevent it,” says Dr. Karl Dhana,” Senior Vice President of Medical Affairs at MorseLife Health System in Florida. “We need to continue to develop new and more effective treatments for Parkinson’s which will hopefully lead to a cure.”

4. Get Moving and Keep Moving!
Exercise is another key way to manage Parkinson’s. “All the research shows that the earlier you get on a very Parkinson’s-specific exercise routine, the better it goes for your long-term quality of life,” says physical therapist Brian Keenoy, who treats PD patients at the Generation Care rehab facility in Michigan.

Several exercise programs have been specially designed for people living with Parkinson’s, including Rock Steady Boxing and Dance for PD. Keenoy says that dancing is a good choice for people with the disease, as it involves conscious and purposeful movement that increases the brain-body connection.

Both dancing and Tai chi, another exercise that involves conscious movement, can also improve your balance and reduce your risk of falling. “When you have Parkinson’s, you can’t correct yourself when you lose your balance because the disease decreases how quickly you can move to steady yourself,” says Dhana. In addition, he notes that Parkinson’s and PD medications cause blood pressure to drop in patients when they stand up, sometimes leading to light-headedness and dizziness, which also increases the risk of falling.

5. Manage Your Mood
As with many diseases, managing your mood is a fundamental part of the rehabilitative process. Keenoy, who encourages his patients to do one thing every day that brings them joy, notes that patients who feel depressed may abandon their exercise routine (the loss of dopamine-producing cells in people with Parkinson’s also affects motivation.) In addition, depression can also exacerbate the symptoms of Parkinson’s. As Dhana points out, “if someone is anxious and nervous, it can make the tremors worse.”

Petrossian believes that the emotional response to Parkinson’s can sometimes be more devastating than the physical symptoms. “The bigger issue I see is that a lot of people with Parkinson’s have anxiety and depression, which goes beyond just stress, and I think those need to be addressed, sometimes with cognitive behavioral therapy and sometimes with medication,” she says.

6. Seek Out Support
“Part of the problem for someone just diagnosed with Parkinson’s is a sense of isolation and bewilderment, a sense of identity loss,” Petrossian says. One way to counter the isolation and to adjust to living with Parkinson’s is through peer support. (You can find local support groups—including the PRESS Program for recently diagnosed PD patients— on the American Parkinson’s Disease Association website.)

“Parkinson’s is a progressive neurological disorder, and if you take that on yourself…it can be a little daunting,” says Keenoy, who encourages his patients to build strong social networks. “You’re not the first person diagnosed with Parkinson’s where you live, and so you don’t have to figure it all out on your own,” he says.

7. Reframe Your Experience
In addition to getting support, thinking positively can help you come to terms with your diagnosis. One of Petrossian’s patients has taken to viewing Parkinson’s as a friend (he calls him “Mr. P”), while others repeat mantras like, “I have Parkinson’s, but Parkinson’s doesn’t have me.”

Petrossian acknowledges that this approach may feel a little cliched or trite, “but having a mantra that recognizes your struggle without diminishing who you are and without overemphasizing the role Parkinson’s plays in your life can help you cope and become more resilient.”

In contrast, one of her patients told her that having Parkinson’s means he will “never hit a ball out of the park,” no matter how hard he tries. At the time, Petrossian, who was “blown away” by his “devastating way of thinking about life,” didn’t know how to respond. “How do you get up every day and exercise and everyday try to be positive when you are constantly feeling like you are in a losing battle,” she says.

Later, another patient gave her the answer: If you live with Parkinson’s, “you have to recognize that you have to play a different game, you have to change the rules of the game,” Petrossian says. In other words, she says, “you have to re-imagine your life.”

For his part, Keenoy is adamant that people living with Parkinson’s can live a full life. “I’ve seen individuals come in pretty bummed out because they’ve just got a really big diagnosis, but after you give them tools, they realize they can adapt things so that they really enjoy their life,” he says. “I believe one-thousand per cent that people with Parkinson’s can live a long fruitful, joyful, high-quality life.”

“6 Ways to Stop Judging Yourself As a Caregiver”

This recent post to DailyCaring blog of Caring.com lists six ways to stop judging yourself as a caregiver.  The post addresses negative self-talk.

The six ways include:

1. Notice when you’re speaking negatively to yourself.

2. Distract yourself from negative thoughts.

3. Avoid comparing yourself with others.

4. Look at the big picture.

5. Talk to others in similar situations.

6. Keep a success journal.

These six suggestions are described in detail in the blog post.

Robin

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www.caring.com/articles/stop-judging-yourself-as-a-caregiver

6 Ways to Stop Judging Yourself As a Caregiver
You don’t deserve judgment from anyone, even yourself
By DailyCaring, Guest Contributor
Caring.com
Apr 17, 2018

Most of us have run across unpleasant know-it-alls who question your caregiving decisions or criticize things you’ve done. That’s terrible, nobody should speak to you that way!

What’s worse is when we speak to ourselves that way. Many of us unfairly judge ourselves and focus on the few mistakes we’ve made rather than on all the good we’ve done.

What you’re doing deserves praise, especially from yourself.

We’ve got 6 practical tips that stop the unfair self-judgement that happens inside your head. These tips also help retrain your thoughts so you can treat yourself more kindly.

6 ways to stop judging yourself as a caregiver

1. Notice when you’re speaking negatively to yourself

The first step is to notice when you’re talking to yourself negatively about caregiving.

Next time you have a negative thought, take notice and write it down. For example, you might think “I snapped at Mom again today. I’m the worst daughter in the world.” or “Ugh! I forgot to buy more of Dad’s oatmeal. I’m so stupid!”

Even though you’re noticing when these thoughts happen, it’s important not to beat yourself up just for having them. Too often, these thoughts automatically fly through our brains and we hardly notice how harshly we speak to ourselves.

The goal of this exercise is to help you realize that you’re doing it.

2. Distract yourself from negative thoughts

After you’ve been noticing your self-criticism for a little while, it’ll get easier to recognize when you’re being too hard on yourself.

When you realize it’s happening, stop and take a few deep breaths. Redirect your thoughts by thinking about something positive, finding something to praise yourself about, or listing a few things you’re grateful for.

3. Avoid comparing yourself with others

Comparing yourself to other people only makes you feel badly. On top of that, you’re usually comparing your worst moments with their best moments — the ones they openly share with others.

Instead, focus on what you’re doing right. Maybe you found an amazing in-home caregiver who takes great care of your mom. Or, you’ve made sure that your husband is getting excellent care in a wonderful memory care community.

Keep in mind that everyone makes different choices based on their own unique circumstances. This doesn’t make one caregiving decision better than another.

No matter what choices other people make, it’s best to focus on doing the things that work best for your older adult and yourself.

4. Look at the big picture

So what if the house is messy? Who cares if Mom wears PJs all day when she’s at home? Does beating yourself up about these details help the situation? Do these things really matter?

Instead, think about what’s truly important to you. The house might not be spotless, but maybe it’s because you choose to spend quality time chatting and listening to music with Dad to keep him engaged in life and boost his mood.

5. Talk to others in similar situations

Sometimes hearing from others gives you new perspective. Caregiver support groups are a great place to hear stories from other people in similar situations.

You’ll learn about their experiences, the questions on their mind, and their failures. Talking with and getting advice from fellow caregivers helps you realize that you’re not alone in this, everyone is doing their best under difficult circumstances, and there’s no such thing as one right way.

6. Keep a success journal

Recognizing your successes also helps you overcome negative thoughts.

Every day, take a little time to jot down the things you did well. Seeing your wins on paper is proof that you’re successful a lot more often than you might think.