Spousal Caregiver Job Description (humorous)

This is a humorous job description for a spousal caregiver:

thecaregiverspace.org/spousal-caregiver-job-description/

Spousal Caregiver Job Description
by Allison Breininger (Guest Author)
Jun 8, 2018
The Caregiver Space

The preferred degrees and certifications include, but are not limited to:
Licensed Social Worker
Psychiatrist
Psychologist
Chaplain
Healing Touch Practitioner
Essential Oil Consultant
Geneticist
Urologist
Oncologist
Dermatologist
Hematologist
Orthopedist
Ear/Nose/Throat Specialist
Cardiologist
Radiologist
Pulmonologist
Anesthesiologist
Ophthalmologist
Pharmacist
Nurse
EMT
Surgeon
Dietician
Physical Therapist
Personal Trainer
Wound Care Specialist
Insurance Specialist
Life Coach
Researcher
Professional Organizer
Fundraiser
Zen Master
Public Relations Guru

As the article says, “Please note: the ideal candidate for this position would have not one, but all of the above certifications.”

Check it out….

Robin

 

“Persisting in the Face of Caregiver Difficulties” – Webinar Notes

This past Tuesday, Janet Edmunson (janetedmunson.com), caregiver to her late husband Charles, hosted another terrific webinar on “Persisting in the Face of Caregiver Difficulties.”  She focused on how mounting frustrations of caregiving can chip away at optimism and energy.  By being aware of our negative thinking and re-framing our perspective of a given situation so that we see the positive, we can avoid a spiral of persistent feelings of being dumped on, overwhelmed and depressed.

There is research showing that building strong positive thinking habits makes people more emotionally resilient.  It even has a name:  post-traumatic growth.  It is the optimism that carries us through a difficult period, resulting in strength of spirit, more confidence and  persistence.

Brain Support Network volunteer Denise Dagan listened to the webinar and has shared her notes below.  Her notes include both Janet’s presentation and the question-and-answer period.

Denise says:  “My notes are filled with steps that, taken daily, could make you a more emotionally resilient, positive (hopefully more healthy) caregiver.  Try some of them and see what happens.  Heck! try all of them!”

Denise’s notes and a link to the archived recording are below.
Robin
————————–
Register to watch a recording of the webinar here:
https://attendee.gotowebinar.com/recording/8497359402706827267

Notes by Denise Dagan, Brain Support Network volunteer

Persisting in the Face of Caregiver Difficulties
Webinar by Janet Edmunson
June 5, 2018

Was it a bad day or a bad 5 minutes you milked all day?

Get rid of ANTS = Automatic Negative Thoughts

They pop into our head all day.  We can’t control that, but we can control whether we act appropriately when faced with ANTS.  It can be difficult to gain perspective.  Negativity tends to stick with us while positivity is like teflon and slips off us.

Negative thinking is appropriate and rational:  When your loved one takes a turn for the worse.  It is appropriate to feel negative and sad in this situation as you have no or little control over the outcome.

Other negative thinking is irrational:  “I’ll never be happy again because of my caregiving burden.”  That is over the top.  You know that statement is unreasonable because steps can be taken to make that statement is untrue.  If you really think about it you can probably think of a time when you have had a belly laugh, even in the midst of your caregiving burden.  In that moment you were happy.

Keep asking yourself, “Is there another perspective?”

1. Catch yourself.  Is your thinking rational or irrational?

2. Check.  Is it true?  Can I make reasonable changes or get help to make it untrue?

3. Challenge.  Are there healthier ways to respond than purely emotionally?  Ask yourself what advice you would give to a friend in a similar situation.  Is the situation truly catastrophic?  Have I exaggerated how bad things really are?  Have I blamed the wrong person.  Have I overreacted?

Thought Worksheet:
Event or Situation _____________ (fill in your situation)
Feelings _________________
(fill in your feelings.  Are they over the top or reasonable?)
Automatic thought:  (fill in your automatic thoughts about the situation)
Realistic thought:  (fill in more realistic thoughts about the situation)

Example:
Flat Tire
Bad things always happen to me.  This is the worst day ever.
Realistically, its just a flat, it will take time, but I will get through it.

Example:
On top of caring for spouse, your mother has a new diagnosis of Alzheimer’s
Feelings of despair, can’t handle another, overwhelmed, sad
Automatic thought: This is horrible and way more than I can handle
Realistic thought:  My feelings are real.  I must accept the situation and begin to find support and a path forward.

Energy flows in the direction of your attention.
Where is your attention?  How do you determine if your thinking is optimistic or pessimistic?
Pessimistic thinking: Its all my fault.  It’s going to affect my whole future.  Bad things always happen to me.  I may as well stop trying, I won’t be successful.
Optimistic thinking: I know why this happened and I can correct it.  It doesn’t have to happen again.  I just had a bad day.  This bad thing is temporary and only one part of my life.  I am confident I could change the situation with persistence and a better strategy.

People who are pessimistic are more likely to give up, blame themselves when things go wrong, feel worthless and give up.  They tend to give up early, find and focus on the negative, predict failure and negative outcomes, draw negative conclusions without seeking information and solutions

People who are optimistic are more likely to persist in the face of frustrations and tend to see failure as a normal part of life.  They tend to persist over time despite difficulties and setbacks, use positive results to build confidence, predict success based on a realistic plan, seek solutions and try multiple approaches and seek every positive aspect of a situation.

Explanatory Styles:

Permanence
Pervasiveness Personal
Pessimist: See the situation as Permanent
See the problem as Universal
Internalize the cause

Optimistic:  See the situation as Temporary
See the problem as Situation specific
See the cause as External

Examples of pessimistic self talk:  Poor me.  I can’t do this anymore.  I’m overwhelmed.  I’m not capable of doing things I never had to do before.

Positive self talk is realizing you are in a learning curve but you are perfectly capable and will figure it out – even if you need to get help.

Who fares best during adversity?
Some crumble and grumble
Others bounce back, grow and become stronger – but how?

In the book, “Positivity,” author Barbara Frederickson says those who bounce back learn to put the brakes on negative thinking and focus on the positive to see us through difficult or frustrating experiences.

Post traumatic growth = optimism that carries us through a difficult period, resulting in strength of spirit, more confidence and  persistence.  It is facilitated by relating to others, using your personal strength, perseverance and persistence to carry you through.

Which way is your spiral going? Toward the positive or toward the negative?
If your spiral is heading toward the negative, it will drain your energy.  If you bring in positivity, even a bit at a time, you can enhance your energy and overall wellbeing.  It is the opposite of letting each frustration drain your energy and turn you toward a negative emotional spiral.

How to tune into positivity:
1. Tune into your thoughts and feelings.  Your enemy is negativity and your response to it.  What are you telling yourself is making you feel overwhelmed.  Where there is a negative there is always a positive.  Negative and positive can be present together in one’s feelings.

Examples:
When caregiving is overwhelming and you want to give up.  Be thankful your loved one is still with you.
When friends pull away, be thankful for the new, supportive people who have arrived to help.
When your loved one is incontinent, be thankful your loved one isn’t retaining urine, which can be life threatening.

2. Come up with a mantra to counteract negative self talk:
Remind yourself you are not helpless
It’s only a setback.  I will figure it out.
I will get it done and it will be fun/fine.

3. Have realistic expectations.
Bad things sometimes come in more than threes.  Even if they come in sixes, they happen and you just have to get through each challenge.  You will build tremendous strength, confidence and post-traumatic growth as a result.

She told a story about getting robbed in the ER while napping by her husband who was having a crisis.  You get through it.

Adopt positivity habits.  They take practice/honing.

1. Grow your gratitude.  Be thankful for everything and everyone.  It builds happiness.  Keep a gratitude journal each evening.  Ask yourself what three marvelous things happened each day.  It can combat depression.

2. Savor the good.  Once you start to realize those marvelous things that actually do happen each day, you will start noticing them when they happen.  Savor them in the moment.

3. Monitor your mood.  When you are sad you stop doing things you like to do that make you happy.  Make a list of what you love and start doing them when you have time.  Read a book, call a friend, etc.  Be proactive in improving your mood.

4. Value your worth.  Negativity lies in devaluing our worth.  Reflect on the best version of yourself and the legacy you are leaving by being a caregiver to someone you love.  Stop beating yourself up and criticizing yourself.

5. Connect with others.  We are wired to be social.  It makes us feel safe, secure, happy, and soothed.  Negativity separates us from those we love.  Make a list of your social support people and be proactive in connecting with them.  Invite them to you, if you cannot get out to them.  Make new friends going through similar experiences (support groups, exercise groups, etc.)

The most essential factor is persistence – the determination never to allow your energy or enthusiasm to be dampened by the discouragement that ,just inevitably come. – James Whitcomb Riley

Your Action Plan – What ritual will you adopt?

Reframe your negative thoughts.  Shift your focus from the negative to the positive.

Questions and Answers

Q.  Even when aide is present caregiver must still intervene because aide can’t deal with autistic daughter.  So frustrating.
A.  This is your reality and a rational situation with appropriate negative feelings.  To get past this you must take action.  Begin by communicating/educating the aide about dealing with the daughter.  You can bring in an outside educator to teach the aide about autism.  Look for some positives (humor, when things do go smoothly as examples to share with the aide).

Q. How do you allow yourself as a caregiver to make time for yourself when you have trouble taking care of household tasks.
A. You will feel guilty, but you need to let your nervous system rest in the interest of your own health.  Try to squeeze in a few pages of a book while you are on the toilet or in the bath.

We can’t take time for ourselves when we are the only caregiver 24/7.  That is when you need to enlist the help of friends, family, neighbors, fellow church members or in-home hired help.  If you have the means, hire a house cleaning service and yard service or enlist friends, family, etc. to do those chores so you can have some respite.

Nine brain donations in nine days! Amazing generosity towards medical research.

Brain Support Network has helped nine families succeed in donating a loved one’s brain….in nine days.  That’s an amazing display of generosity towards medical research from individuals and their families.  We thank every family and party involved.  That’s a record for us!

If you are interested in making arrangements for your brain donation or a family member’s brain donation, we encourage you to do so once hospice is involved.  Or once there’s been a major hospitalization.

See:
www.brainsupportnetwork.org/brain-donation

Robin

 

“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

=========================================================

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

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

———————

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).

 

“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

==============================

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.

 

“21 Tips for Washing, Grooming and Going to the Bathroom”

Earlier in the year, a post on Parkinson’s News Today (parkinsonsnewstoday.com) offered 21 tips to make washing, grooming and going to the bathroom easier and safer.  Though the blog post is on a Parkinson’s-related website, the tips apply to everyone with mobility issues or those at risk of falling.

Robin

——————————

parkinsonsnewstoday.com/2018/01/15/21-tips-washing-grooming-going-bathroom-parkinsons-disease/

21 Tips for Washing, Grooming and Going to the Bathroom With Parkinson’s Disease
By Wendy Henderson
Parkinson’s News Today
January 15, 2018

As a person’s Parkinson’s disease progresses, simple everyday tasks such as washing, grooming and going to the bathroom can become difficult due to typical Parkinson’s symptoms such as tremors or rigidity. Those living with the disease will be keen to do as much for themselves as possible and retain as much of their independence as they can, particularly when it comes to personal hygiene.

We’ve put together a list of handy tips to help people living with Parkinson’s continue to wash, groom and go to the bathroom easily and safely…

Washing

• Installing at least two fitted handrails near the bath or shower will allow the patient to grab hold of something safe and secure while getting in and out of the bath or shower. These should be professionally fitted if possible to ensure they are strong enough to support the patient’s weight.
• A chair or bench in the shower or bathtub will help those who have trouble balancing while standing. A handheld showerhead is best used in these circumstances.
• Make sure the water isn’t too hot.
• Place non-slip rubber mats in the bath tub and shower cubicle.
• Bath rugs and mats should have a rubber backing so they don’t slide across tiles.
• Liquid soap in a pump dispenser is safer to use than hard bars of soap which can slip out of hands and leave slippery residue underfoot.
• Install a shelf in the shower or bath area that is between knee and shoulder height for easy access to soap, shampoo, and other essential washing items.
• Advise the patient to always take their cell phone or medical alert device into the bathroom if they’re home alone.

Grooming

• Patients should sit down when brushing their teeth, shaving, applying makeup or drying their hair so they don’t have to worry about balance.
• It’s important to support the upper body by resting elbows on the sink or vanity when grooming.
• Electric devices are often better and safer to use than non-electric ones, such as toothbrushes and shavers.
• Hands-free hair dryers can be mounted on a vanity unit.

Going to the bathroom and incontinence

• Toilet frames or grab bars will help patients get up off the toilet safely.
• Introduce a regular schedule for visiting the bathroom, such as every two hours or before meals.
• Avoid drinking caffeinated drinks which may cause more frequent bathroom visits.
• Try to avoid fluids two hours before bed.
• Patients should use a nightlight or keep the bathroom light on during the night so they can make their way to the bathroom safely.
• It’s advised that those with Parkinson’s attempt to fully empty their bladder each time they visit the bathroom.
• If patients become prone to bathroom accidents, they should try using incontinence products such as pads or padded underwear.
• Patients should seek medical advice if they experience burning or a sudden increase in frequency or urgency to urinate as this may indicate a urinary tract infection.
• A urologist can help if patients are experiencing problems with incontinence.
Earlier in the year, a post on Parkinson’s News Today (parkinsonsnewstoday.com) offered 21 tips to make washing, grooming and going to the bathroom easier and safer.  Though the blog post is on a Parkinson’s-related website, the tips apply to everyone with mobility issues or those at risk of falling.

Robin

——————————

parkinsonsnewstoday.com/2018/01/15/21-tips-washing-grooming-going-bathroom-parkinsons-disease/

21 Tips for Washing, Grooming and Going to the Bathroom With Parkinson’s Disease
By Wendy Henderson
Parkinson’s News Today
January 15, 2018

As a person’s Parkinson’s disease progresses, simple everyday tasks such as washing, grooming and going to the bathroom can become difficult due to typical Parkinson’s symptoms such as tremors or rigidity. Those living with the disease will be keen to do as much for themselves as possible and retain as much of their independence as they can, particularly when it comes to personal hygiene.

We’ve put together a list of handy tips to help people living with Parkinson’s continue to wash, groom and go to the bathroom easily and safely…

Washing

• Installing at least two fitted handrails near the bath or shower will allow the patient to grab hold of something safe and secure while getting in and out of the bath or shower. These should be professionally fitted if possible to ensure they are strong enough to support the patient’s weight.
• A chair or bench in the shower or bathtub will help those who have trouble balancing while standing. A handheld showerhead is best used in these circumstances.
• Make sure the water isn’t too hot.
• Place non-slip rubber mats in the bath tub and shower cubicle.
• Bath rugs and mats should have a rubber backing so they don’t slide across tiles.
• Liquid soap in a pump dispenser is safer to use than hard bars of soap which can slip out of hands and leave slippery residue underfoot.
• Install a shelf in the shower or bath area that is between knee and shoulder height for easy access to soap, shampoo, and other essential washing items.
• Advise the patient to always take their cell phone or medical alert device into the bathroom if they’re home alone.

Grooming

• Patients should sit down when brushing their teeth, shaving, applying makeup or drying their hair so they don’t have to worry about balance.
• It’s important to support the upper body by resting elbows on the sink or vanity when grooming.
• Electric devices are often better and safer to use than non-electric ones, such as toothbrushes and shavers.
• Hands-free hair dryers can be mounted on a vanity unit.

Going to the bathroom and incontinence

• Toilet frames or grab bars will help patients get up off the toilet safely.
• Introduce a regular schedule for visiting the bathroom, such as every two hours or before meals.
• Avoid drinking caffeinated drinks which may cause more frequent bathroom visits.
• Try to avoid fluids two hours before bed.
• Patients should use a nightlight or keep the bathroom light on during the night so they can make their way to the bathroom safely.
• It’s advised that those with Parkinson’s attempt to fully empty their bladder each time they visit the bathroom.
• If patients become prone to bathroom accidents, they should try using incontinence products such as pads or padded underwear.
• Patients should seek medical advice if they experience burning or a sudden increase in frequency or urgency to urinate as this may indicate a urinary tract infection.
• A urologist can help if patients are experiencing problems with incontinence.

“Palliative Care: Planning for the Road Ahead” – Speaker Notes

The Parkinson’s Association of Northern California (parkinsonsacramento.org), based in Sacramento, held its annual conference in late October 2017.  The video from the conference was posted online earlier this year.

Brain Support Network volunteer extraordinaire Denise Dagan has been watching the recordings of some of the sessions, and sharing her notes.

This blog post contains notes that Denise took while watching the recording of Nathan Fairman, MD, a psychiatrist at UC Davis.  Dr. Fairman spoke on the topic of palliative care.  There is nothing about this talk that is Parkinson’s-specific.  The information applies to us all.

Denise liked two metaphors that Dr. Fairman shared during his talk. The metaphors helped make his points about what palliative care is and why we want to make our end of life preferences known in advance.

Denise says:

“His first metaphor is thinking of life as a road into
the distance.  We can see clearly what is along the road near to us,
but in the distance things are unclear.  Similarly, we can see all the
elements of our lives clearly in the present and near future but not
so clearly in the distant future.  When we are diagnosed with a
serious or long term illness our outlook becomes unfocused.  Dr.
Fairman says the job of a palliative care physician is to help us see
our future clearly again.  He then gives us an excellent description
of what palliative care is and is not, as well as how it applies
specifically to those with Parkinson’s disease.”

“Dr. Fairman’s second metaphor is that our lives are a story we write
for ourselves.  Making our end of life preferences known by talking
with our family and physicians, filling out a POLST and advance
directive is outlining the last chapters of our lives so that they
play out the way we prefer and we are not at the mercy of decisions
made by others.”

If you need more information about what palliative care includes
beyond what is contained in this email, check out
getpalliativecare.org.  That’s one of several resources mentioned near
the end of Dr. Fairman’s talk.  And ask your primary care physician,
neurologist, or other physician how palliative care can help you or
your family member and obtain a referral to a palliative care program.

Robin


www.youtube.com/watch?v=VvaSVuYhNjc

Notes by Denise Dagan, Brain Support Network Volunteer
April 2018

Speaker:  Dr. Nathan Fairman
Topic:  Palliative Care: Planning for the Road Ahead

Conference hosted by Parkinson Association of Northern California (PANC)
October 2017
Afternoon Session 1, Part 1

1st of 2 metaphors:  We think of our life as a journey or road ahead.
We can clearly see what is right ahead of us, but not what’s in the
distance, or around a bend or into the mountains.  And yet, each of us
has a sense of what’s ahead until we are diagnosed with a serious or
long-term illness, when our outlook becomes truly unfocused.  The job
of a palliative care doctor is to help us see our future clearly,
again.

Objectives of this talk:
1. Palliative Care 101
2. Roles for Palliative Care in Parkinson’s disease
3. Advance Care Planning 101

What is Palliative Care?
There is a distinction between “disease” and “illness.”  To understand
this makes it easier to have an effective relationship with your
doctor.  The distinction is:
* Doctors diagnose and treat disease.  The disease is what happens to
your body in a pathological sense.
* Patients experience / suffer illness.  Illness is how disease
affects who you are, your functioning in life, your relationships and
the path you are on.

Doctors can understand disease without knowing the patient at all.
You cannot understand an illness without the patient.

Dr. Fairman showed a Venn diagram in which a disease expert circle
(doctor) and an illness expert circle (the patient) overlap.  Both
doctor and patient need to respect one another’s expertise and work
together to best treat symptoms or achieve a good recovery.

Total Pain is physical, social, psychological, and existential.
Cicely Saunders was a nurse in London in ‘50s who worked in a cancer
ward.  She was tasked with alleviating cancer pain, which is very
difficult.  She found high dose opioids were very effective for
managing oncology pain.

She also discovered when you suffer a serious illness you suffer in
many ways leading to her concept of Total Pain.  Proper treatment of a
serious illness needs to incorporate a team which is able to address
all aspects of suffering: physical, social, psychological, and
existential.  This is a foundational concept in palliative care.

Palliative Care IS:
* specialized care for people with serious illnesses
* focused on providing patients with relief from the symptoms, pain,
and stress of a serious illness – whatever the diagnosis
* strives to improve quality of life for both the patient and family (goal)
* provided by a team of specialists who work with a patient’s doctors
to provide an extra layer of support (led by a doctor and including a
nurse practitioner or nurse, chaplain, pharmacist and working closely
with physical therapy, occupational therapy, speech therapy and
disease experts).
* appropriate at any age, and at any stage of a serious illness
* provided together with curative treatment or as the sole focus of care

Some of the myths are exposed in this definition like:
* Palliative care is only appropriate at the end of life
* Patients can’t continue with disease-focused care while receiving
palliative care

Basic Tenets of Palliative Care
1. Illness experience (person-centered / family-oriented)
2. Total Pain (interprofessional)
3. Preserving quality of life and function
4. Alignment of plan of care with goals of care (we don’t want to do
things to you, we want to do things for you)
5. Time-limited therapeutic trials.

Levels of Palliative Care
* Primary Palliative Care
— ALL CLINICIANS (good old-fashioned doctoring)
— attention to whole-person / family concerns
— treatment rooted in understanding of illness experience
— clarifying basic goals of therapy
— attention to symptom burden and quality of life

* Secondary Palliative Care
— Sub-specialist consultant teams (MD specializing in palliative care
+ RN + SW + Chaplain)

* Tertiary Palliative Care
— Research, Education about palliative care

What are the roles for Palliative Care in Parkinson’s Disease? There
are many overlaps between managing Parkinson’s disease and palliative
care:
1. Common goals: maintaining quality of life & function
2. Common means: multidisciplinary models (it takes an
interdisciplinary team for both)

There are a couple ways to think about the trajectory of Parkinson’s
disease.  At several points along that trajectory there are
opportunities for palliative care.
1. At diagnosis there is intense need for education about symptoms,
treatment options and prognosis
2. Identifying support resources
3. Initiating advance care planning discussions
4. Addressing distressful symptoms (especially non-motor)
5. Assessing caregiver distress / role challenges
6. Clarifying goals (iteratively, as goals change over time)
7. Facilitating transitions in care
8. Aligning plan of care with goals of care
9. Supporting loved ones through bereavement

Advance Care Planning
* Anticipating needs for future care: Who will provide care? Where
would you prefer to live?
* Anticipating major interventions / milestones, particularly tricky
issues to decide upon that are best discussed ahead of the need to
make a decision, like:
— artificial nutrition
— institutionalization
* Supporting autonomy and surrogate decision-making / healthcare
power-of-attorney

Attention to Caregivers
* Caregiver as expert
* Participation in decision-making, goal-setting
* Respite resources / opportunities
* Bereavement support (usually provided through hospice)

Got Advance Care Planning?  2nd metaphor – your life as a story. This
room is filled with stories.  Each one is unique and personal.  The
stories may be sad, tragic, heroic, inspiring.  You are the author and
main character but there are supporting characters, a plot, a setting,
conflict and conflict resolution, acceptance of unresolved conflict.

Think of advance care planning as a process to develop the last
chapters of your story.  Each of us has in mind (even if we haven’t
though much about it) what our last chapters look like.

What is Advance Care Planning?

What IT’S NOT:
– the story
– a document
– scary
– something you should put off.

IT IS writing an outline for the last chapters of your story… so the
story plays out the way you want.

Why does it matter?  What people WANT is often not what people GET

What people WANT in the last weeks or days of their life:
Dr. Fairman showed a photo of a man receiving hospice care at home.
There is a great dane, a schnauzer, and a cat on the hospital bed with
the man.  Most people want something like this photo and describe that
they would like to
* live life to the fullest (“fix” disease, if possible + alleviate suffering)
* 90% believe it is the family responsibility to provide care
* 90% prefer to die at home

What people GET:
Dr. Fairman showed a drawing of a hospital bed without showing the
patient’s face, a TON of equipment around and the doctor headed out
the hospital room door.
* many of us die of diseases that are ‘unfixable’.  We need
alleviation of suffering at end of life.
* only about 23% die at home
* about 77% die in institutions (53% in hospitals, 24% in nursing homes)

Writing the outline for the end of your story…so that it follows the
script you have written.

What is Advance Care Planning?  The practical parts:
1. Advance Directive – if you should have a sudden, traumatic event
and cannot speak for yourself or are in no position to make decisions,
it makes your wishes known and explains how you want to be cared for.
2. POLST – Physician Orders for Life Sustaining Treatment.  This is a
form you keep this at home.  How you fill it out tells EMTs how to
treat you if someone calls for medical help to your home.

The important parts:
1. Talk about it with your loved ones and health care providers
2. It’s a process (revisit and revise periodically)
3. Expect the unexpected

Things to Think About When Confronted With Medical Decisions. Having
a palliative care physician on the team at this point can provide the
patient and family perspective, particularly about what a difficult
recovery or poor outcome might look like.  Ask your doctor:
* Will this make my life better, or longer?  If the answer is neither,
the doctor should probably not be recommending it to you.  If the
answer is one or the other, your input will help the doctor understand
what trade-offs are important to you.
* If this doesn’t work, what can I expect?  If plan A doesn’t work,
what does plan B look like?

Ask yourself:
* What does quality of life mean to you?  If your time were short,
what would matter most?  What would a good day look like?  If you can
communicate this to your doctor, they can help you achieve these
goals.
* What worries you most about the future?  What outcomes are
unacceptable?  What are you willing / unwilling to sacrifice?
* If we can’t achieve your Plan A, what is your Plan B?

Things to Help You

Books:
Being Mortal: Medicine and What Matters In The End, by A. Gawande, 2014
Dying Well: Peace and Possibilities at the end of Life, by I. Byock, 1998
The Conversation: A Revolutionary Plan for End of Life Care, by A.
Volandes, 2016

Websites:
ACP Decisions (www.acpdecisions.org)
PREPARE (www.prepareforyourcare.org)
Get Palliative Care (www.getpalliativecare.org)

The Conversation Project (www.theconversationproject.org)
Coalition for Compassionate Care of California (www.coalitionccc.org)

Things to Do (a summary)
Preparation:
– Consider the “Things to Think About”
– Review the “Things to Help”
Discuss your preferences and priorities with loved ones
Complete documents, including:
– Advance Directive, POLST
Discuss your preferences and priorities with your physician (and a
palliative care physician)
Repeat as needed

Good stories have good endings…how will the end of your story go?