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

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

Here are some excerpts from the article:

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

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

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

The full article is worth reading:

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

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

Robin

 

“How to Improve Resilience in Midlife” (NYT)

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

The expert suggests this approach to improving resilience:

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

Here’s a link to the article:

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

Robin

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

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

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

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

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

Robin

——————–

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

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

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

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

Life Journals capture a legacy.

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

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

How to Create a Life Journal

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

Interviewing for a Life Journal

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

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

Compiling the Life Journal

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

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

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

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

Presenting the Life Journal

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

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

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

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

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

Five other systems to consider were:

Acadian On Call
Philips Lifeline
GreatCall Lively
Walgreens ReadyResponse
ResponseLINK

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

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

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

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

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

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

Robin

“11 Signs It Might Be Time for Assisted Living”

This is a good article from Caring.com on the signs it might be time for assisted living or memory care.  The signs are divided into these 11 categories:

1. Big-picture signs

2. Up-close signs

3. Social signs

4. Money signs

5. Driving signs

6. Kitchen signs

7. Around-the-house signs

8. Pet-care and plant-care signs

9. Home-maintenance signs

10. Get help looking for signs

11. Caregivers’ signs

Here’s a link to the article:

www.caring.com/articles/signs-its-time-for-assisted-living

11 Signs It Might Be Time for Assisted Living
By Paula Spencer Scott, Alzheimer’s Caregiving Expert
Last updated: Jul 10, 2017
Caring.com

Robin

“What Happens To A Marriage After Parkinson’s”

This a profile of how one couple’s marriage is affected by Parkinson’s Disease:

Profiles
What Happens To A Marriage After Parkinson’s
Every marriage has its own dynamic, but what happens when a motor system disorder turns that relationship upside down?
by Amy Ridout
Folks: A Pillpack Magazine
May 9, 2017
Robin

Prepare one-pager of medical info to ease an ER visit

There’s a website called “The Caregivers’ Living Room – A Blog by Donna Thomson” (donnathomson.com) that I recently came across.  Donna cares for both her son (with a disability) and mother (perhaps with dementia).

Here’s a helpful blog post from June about preparing a one-pager of information to ease an ER visit.  (I’m not sure everything for many of our group members will fit on a single page, but the suggestion is still worthwhile.)

Robin


www.donnathomson.com/2017/06/ease-er-experience-awesome-tip-from.html

Ease the ER Experience: Awesome Tip From a Reader!
Saturday, 24 June 2017
The Caregivers’ Living Room – A Blog by Donna Thomson

Facebook is a fantastic information sharing tool for natural caregivers. The Caregivers’ Living Room has a page…and lately we’ve been chatting about giving doctors and nurses an accurate picture of our loved ones in hospital. When our loved ones are elderly or have disabilities in the emergency room, it’s easy for medical professionals to make negative assumptions about how they are on a good day. …

Caregiver Kim had a great suggestion. She proposes a one-pager with up to date information that medical staff need to get an accurate snapshot of the person. Kim’s template has all the information that doctors need to know plus everything we WANT them to know. Thank you, Kim!

It seems like a lot, but once you get it done, it’s SUCH a good thing to have it on hand; and updating it only takes a minute.

1) First, I give the full legal name, followed by what he goes by (i.e. James Reginald Smith, goes by Jim)

2) Next, Date of Birth

3) Health Card Number and/or Insurance Details (even though the health card should be with the patient, it’s convenient to note it here)

4) List of Diagnoses (include allergies to medications, and any anaphylactic allergies). It may also be helpful to note the date of each diagnosis.

5) List of current medications; how long you’ve been taking them, what the dosage is and what the medication is for (as some meds are used off-label). This is where it’s important to update the page annually, and/ or with every change that occurs. (Also, the ER staff will ask which medications have been given that day – be prepared to answer that question.)

6) Previous surgeries (include year and place); serious illnesses/previous hospitalizations (include year and place)

7) For children, indicate if vaccinations are up to date. For adults, note when last booster shots were given (i.e. tetanus).

8) Behaviour/personality traits. This is where I’ve listed that my son is normally extremely active and very happy and content. This helps the doctor see how far from “normal” the patient is. (Note from Donna: I include a photo of my son and my Mom on their one-pagers so professionals in the ER can see their vibrant, smiling faces when they are healthy)

9) If they have problems communicating, or a different way of communicating, note that here.

10) How do they normally deal with pain? (i.e. do they have a high tolerance for pain?)

11) You might want to include any other information that would give an indication of what “normal” activity and competency levels are (such as work or hobbies). But remember this is a BRIEF summary of the patient, so be succinct. Only include pertinent information and in a concise manner.

12) List of doctors, indicating what field (i.e. family doctor, oncologist, etc) with their contact information. Also, list additional medical contacts, such as the pharmacy you normally go to for prescriptions, or doctors that might not be considered primary care (perhaps an allergist, or a dentist).

13) List a couple of people who are emergency contacts. Note the relationship to the patient and be sure to give phone numbers where they can be reached at any hour.

14) Finally, at the bottom of the page, note the date that you last updated this information. If you have not updated it in a while but it is still correct, just change the date (so that people can see the information is recent and still relevant). Every time you update the page, re-read the whole thing to be sure all the information is still correct and has not changed.

15) Note from Donna: I would also add whether there is a Do Not Resuscitate Order on file. Also, if you have a Power of Attorney or Guardianship arrangement for your loved one, this should be noted on the page as well.

Five “ponderable thoughts” about grabbing “a second chance to live life”

The author of this short article draws a comparison with Ebenezer Scrooge who was “fortunate to get another chance in life despite a lifetime of despicable behavior towards others.”  The author encourages everyone facing a neurological diagnosis to grab “a second chance to live life and enjoy its splendor and beauty, whatever that is. No pity, no remorse, just joy that every moment should and will be spent making this life a better place then we got it.”

Though this reflection was written by a gentleman who lost his wife to Lewy Body Dementia in September 2016 (and posted to the Lewy Body Dementia Association website), there is nothing LBD-specific (or even dementia-specific) in the message.  And though this was written by a caregiver, the five “ponderable thoughts” apply to those with a neurological diagnosis.  The first and last thoughts are religious.

Robin

————————————–

www.lbda.org/node/2852

Excerpts from

The Crux of the Matter
by Alan Silberstein
Monday, January 9, 2017

[This article is] written as a reflection much like “A Christmas Carol” by Charles Dickens. Ebenezer Scrooge was fortunate to get another chance in life despite a lifetime of despicable behavior towards others and live it to the fullest greater good. This disease, for those lucky enough to be diagnosed early truly, has a second chance to live life and enjoy its splendor and beauty, whatever that is. No pity, no remorse, just joy that every moment should and will be spent making this life a better place then we got it.

So, here are a few ponderable thoughts:

First, if nothing else get spiritually centered. For me, that means be right in the Lord. I find peace and comfort in knowing that His light always shines down upon us. No matter what the situation God is in control. When the 23rd Psalms states “The Lord is my Shepherd, I shall not want…” I believe it means just that; everything I will need in this life is provided. The only thing the Lord wants me to take control of is my attitude. No matter how hard, my positive attitude is paramount. Each day brings new adventures – new highlights, new joys. The alternatives take way too much energy.

Second, learn from the past so you can plan for the future. This will allow you to live today. For example, how did raising your children prepare you for the next stage of grand parenting? Just like savings for retirement, did you learn anything from ‘a penny saved, is a penny earned’? We have a future; it is just a little unpredictable. Create a ‘bucket list’ of things you want to do. Then go do it with your family and/or significant other. Each time you check something off a new adventure starts. That is just plain excitement and happiness.

Third, take nothing for granted. You may have an awful diagnosis but let’s put it in perspective. There are things far worse, like if your spouse is near death and there is nothing other than prayer you can do to help. Open your eyes to your surroundings and see things that eluded your sight all these years. Then, relish in them.

Fourth, if you are young enough, plan for retirement and that ‘rainy day’. We are mortals and cannot predict the future, no matter how much we might like to. A proper plan today will lead to peace and security when the time comes. Believe me, it does come and not on your schedule.

Last, each day is precious. Treat it as such. We know what it is like to not know if there will be another. Each day do a random act of kindness. Despite our disease, paying it forward is healthy and makes one appreciate the glory provided to us by God.

“How to Build Your Own Geriatric Team” (WSJ)

This blog post to the Wall Street Journal (wsj.com) was written by Marc Agronin, MD, a geriatric psychiatrist. He is the author of “How We Age: A Doctor’s Journey into the Heart of Growing Old.”

In this article, Dr. Agronin says there are not enough geriatricians for our aging population now and there are not going to be enough in the future. He suggests a few ways to find a geriatrician. But, failing that, Dr. Agronin makes four suggestions to “help your own doctors to be more like geriatric specialists”:

1. Select a doctor with some geriatric training and an interest in seeing older patients in your age range.

2. Carry a document that has all your important medical information, especially an updated list of your major medical and psychiatric issues and current medications (prescribed, over-the-counter, and supplements).

3. “Prepare a list of questions ahead of each doctor visit and don’t leave until you have answers that you understand and agree with. For any proposed tests or procedures, ask about potential risks, what the results will show, and how this information will change the management of the illness. If you have even mild memory problems, always bring along somebody to help ask questions and record answers.”

4. Prepare advance directives designating your surrogate decision maker for medical care if you are incapacitated. Give your doctors a copy of these advance directives.

Here’s a link to the blog post:

blogs.wsj.com/experts/2015/10/20/how-to-build-your-own-geriatric-team/

How to Build Your Own Geriatric Team
Wall Street Journal
October 20, 2015
By Marc Agronin

Robin

 

“10 Tips for a ‘Common Sense Approach’ to Life With a Chronic Illness”

This list of ten tips for a “common sense approach to life with a chronic illness” was posted recently to the Parkinson’s News Today website.  (I don’t believe the author has Parkinson’s Disease.)  The tips include:
– follow directions
– designate a first responder
– be organized
– use trusted sources of info
– get the most out of your appointments
– have faith in yourself
– ask for help
– don’t let negative feelings get you down
– be adaptable
– laugh

The full blog post from Parkinson’s News Today (parkinsonsnewstoday.com) is below.

Robin

————————

parkinsonsnewstoday.com/2017/06/26/10-tips-common-sense-approach-life-chronic-illness/

10 Tips for a ‘Common Sense Approach’ to Life With a Chronic Illness
by Wendy Henderson
Parkinson’s News Today
6/26/2017

While living with a chronic illness can be challenging, there are ways that you can make life easier and live a happy and fulfilling life. Establishing good habits and routines takes time, but as Gunnar Esiason points out in his blog Own It, there are some “common sense approaches” to living life with a chronic illness that everyone can find useful.

Follow Directions
It’s tempting to cut corners sometimes, especially if you’re running late or tired, but taking medications and therapies as prescribed and for the required amount of time will prevent you from becoming sick. Skipping meds or only partially doing therapies, not cleaning or maintaining equipment may save you a little bit of time in the short run, but may result in you becoming sick.

Designate a First Responder
Designate a person (or persons) who you can rely on to know what to do if you have a medical emergency. This can be a member of your family, a colleague, or a friend. Make sure they know how to respond to any exacerbations you may experience.

Be Organized
Keep any medications, equipment or paperwork that has to do with your health condition in good order. If you need to take medications at different times of the day, set reminders on your cellphone. Keep all paperwork in an organized folder so everything you need is easily found. Use weekly pill boxes to keep a week’s supply of meds ready. Ensure all equipment is cleaned after use so it’s ready for the next time.

Use Trusted Sources for Information
Dr. Google is notoriously wrong, as are most of your well-meaning colleagues and friends. Use trusted sources for information regarding your chronic illness. Non-profit organizations are great places to find accurate and up-to-date information. Your healthcare team is also a phone call away if you have any questions that need to be answered.

Get the Most Out of Your Appointments
Often, particularly when you’re first diagnosed, there is a lot of information to process. Taking notes when you meet your healthcare team will help you to remember all that you’ve been told. Also, preparing a list of questions before you go to your appointments will ensure that you don’t forget anything important while you’re there. Take a friend or family member along for support — they’ll often think of things you may miss.

Have Faith in Yourself
You may think that the journey you’re about to embark on will be too difficult or that you won’t be able to keep up with the treatments. Have faith in yourself — you are stronger than you realize. In the beginning, there will be many changes, but life will soon settle into a new normal and you’ll be surprised at how well you’re handling things.

Ask for Help
Don’t be too afraid or too proud to ask for help. Family and friends will want to help you out in any way they can, just as you would if the roles were reversed. Focus on your health and staying well, and allow others to do things for you. If you require financial aid or help to procure necessary equipment, non-profit organizations are a great place to start. Local volunteer groups can offer caregiving help as well as help around the house and garden.

Don’t Let Negative Feelings Get You Down
Feeling angry, frustrated, sad, or disappointed are all extremely normal reactions to a chronic illness, but you’ll need to work through these feelings and push them to one side. Focus your energy on getting well and try to be positive about your treatment.

Be Adaptable
It’s likely that you won’t be able to live your life exactly as you did before. Depending on the severity and type of chronic illness you have, you may find that you simply can’t do as much as you used to. Be more selective with your calendar so you have more energy and enthusiasm to enjoy each activity and event. Ditch bad lifestyle habits that could make your chronic illness worse, and try to embrace new healthy ones instead.  Learn that it’s OK to say no to people — your health comes first and they should be able to accept that.

Laugh
Laughter is great medicine. It won’t cure your chronic illness, but it will make living life with it more fun. Take time to do the things you enjoy and that give you pleasure, spend time with people who make you happy and take joy wherever you can find it.

Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.