“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:


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


“What Happens To A Marriage After Parkinson’s”

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

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

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.)



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.




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.

“A Navy SEAL explains 8 secrets to grit and resilience”

Several of you know that I’m interested in the topic of resilience — how we can build our resilience to weather the storms of neurological decline. A caregiver in Brain Support Network’s group sent me this recent article (from a career advice website) on a Navy SEAL explaining the eight secrets to grit and resilience. Perhaps you will find some useful information here, whether you are a caregiving, person with a neurological disorder, or otherwise challenged by something in your life.

The eight secrets from the article are:

1- Purpose and meaning. It’s easier to be persistent when what we’re doing is tied to something personally meaningful.

2- Make it a game. It’s the best way to stay in a competitive mindset without stressing yourself out.

3- Be confident — but realistic. See the challenges honestly but believe in your own ability to take them on.

4- Prepare, prepare, prepare. Grit comes a lot easier when you’ve done the work to make sure you’re ready.

5- Focus on improvement. Every SEAL mission ends with a debrief focusing on what went wrong so they can improve.

6- Give help and get help. Support from others helps keep you going, and giving others support does the same.

7- Celebrate small wins. You can’t wait to catch the big fish. Take joy where you can find it when good times are scarce.

8- Find a way to laugh. Rangers, SEALs, and scientists agree: a chuckle can help you cope with stress and keep you going.

Here’s a link to the full article: (Note that there are a lot of ads on the website.)


A Navy SEAL explains 8 secrets to grit and resilience
By Eric Barker
Jun 7, 2017

Let me know if this resonates with anyone coping with a neurological disorder.



“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:


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



“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.




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

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.

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.

“New Technology Could Allow You or Your Parents to Age at Home” (AARP list)

This list by AARP of aging in place technologies was published in 2014.  Brain Support Network volunteer Denise Dagan looked it over and found that the list is still worth reading, even today.

Most of the items on the AARP list are Personal Emergency Response Systems (PERS).  These are the “I’ve fallen and I can’t get up” devices.  Denise found a more recent review of PERS that said the best was Bay Alarm Medical.  (I’ll send that review separately.)  Of course the Lifeline system is available through many hospitals as reduced rates.  That’s the system our family used for many years.

A couple of the technologies on the AARP list are reminder systems like MedMinder and Reminder Rosie for people with mild cognitive impairment.

GrandCare caught Denise’s eye as the system does it all.  This is from their website:  “The heart of the GrandCare System is a large touchscreen in the residence which provides the individual with social communications, instructions, reminders, medication prompts, and web-based entertainment.  Caregivers access the system by logging in to the online Care Portal.  Optional wireless activity sensors, environmental sensors, and digital health devices can be added to the system as needed. These devices can be used to notify designated caregivers by phone, email, or text if anything seems amiss or if wellness readings fall out of range.”

Let us know if you are using any of these technologies or try them.

Here’s a link to the AARP list:


New Technology Could Allow You or Your Parents to Age at Home
AARP Bulletin
by Sally Abrahms
March 2014


NYT story about adjusting to neurological decline

Though this New York Times article is about a former baseball pitcher Jim Bouton with cerebral amyloid angiopathy (a type of dementia), I think the article is of general interest.  The end of the article is about the wife and family identifying what the husband can still do, and adjusting around that.  This applies to all of us coping with neurological decline.

Here’s an excerpt:

His wife Paula “Kurman calls his condition a pothole syndrome: Things will seem smooth, his wit and vocabulary intact, and then there will be a sudden, unforeseen gap in his reasoning, or a concept he cannot quite grasp.  … In her work with brain-damaged children, Kurman said, her boss would tell her to think about what remains, not what is lost. It is a lesson she applies now. Her husband can still make her laugh, still make her think. … And he can still pitch.  ‘You need to learn that the person is still that person, and you have to focus more on what he can do, rather than what he can’t do,’ she said. ‘And then you adjust.'”

Here’s a link to the full article:


“Hiring In-Home Help” – chapter 15 of “Caregiver Helpbook”

A course called “Powerful Tools for Caregivers” was developed by an organization in Portland. You can read general info about the self-care education program for family caregivers at powerfultoolsforcaregivers.org.

As part of the course, class participants receive a copy of a book titled “The Caregiver Helpbook.” Brain Support Network volunteer Denise Dagan is reading the book and will be sharing the highlights, for most chapters. If you’d like far more detail that Denise’s summaries allow as well as access to the book’s terrific worksheets, note that the book is available for purchase in both English and Spanish at powerfultoolsforcaregivers.org.

We’ve skipped chapters 10 through 14, as those didn’t really apply to many caregivers within Brain Support Network.

So, Denise is picking up with chapter 15, which focuses on hiring in-home help. As needs for the care receiver or the caregiver change, additional help may be necessary. Recognizing and accepting the need for outside help can be challenging for both the care receiver and caregiver.

Here’s Denise’s report on chapter 15.



Notes by Denise

The Caregiver Helpbook
Chapter 15 – Hiring In-Home Help

As needs for the care receiver or the caregiver change, additional help may be necessary. Recognizing and accepting the need for outside help can be challenging for both.
– Many people do not want strangers in their homes.
– Many feel that they alone will give the proper care to their family member.
– Perhaps care receivers want help from no one but a family member.
– Using day care centers to relieve both caregiver and care receiver may be viewed with skepticism.
– There are costs to consider as well as availability of and access to needed services.
– Sometimes ethnic, cultural or language barriers exist.

For awhile, services like home-delivered meals and medications, friendly visitors programs, or life-line emergency call services will fill the gaps. Eventually, as abilities decline, increased needs require more help in the home.

Start by realistically assessing the home care needs, including both those of the caregiver and care receiver. Consider:
– Household care: cleaning, laundry, cooking, and shopping.
– Financial care: paying bills, writing checks, maintaining insurance premiums, monitoring bank statements and credit cards.
– Personal care: bathing, dressing, eating, toileting, assisting with mobility.
– Health care: medication management, wound dressings, catheter care, giving injections, administering oxygen or providing rehabilitation services such as PT, OT or speech therapy.
– Emotional care: conversation, daily check-ins, companionship, transportation, visits to or from preferred faith communities.

You can get recommendations or referrals for in-home help through word-of-mouth, personal ads, churches, senior centers, registries of workers maintained by hospitals or private registries, aging offices, hospital discharge planners, social workers, and case managers.

There are two types of in-home care workers:
* Self-employed individuals who are hired directly by a family. Self-employed caregivers can be nurses, therapists, aides, homemakers, chore workers, or companions. In many states the last four categories are not required to be certified or meet government standards.
* People who work for home care agencies.


Hiring Self-Employed Caregivers

Be Prepared:
– Develop a job description, listing specific care needs, such as the need for lifting, dealing with a person who is confused or incontinent, pet care, etc.
– Decide what qualities and experience you want in a caregiver and if you can be flexible with those preferences.
– Know how much money you can spend.
– Have a written contract.
– State working hours and provisions regarding time off for illness or vacation.
– Define who in the family will be directing the care.
– Research and know legal, financial and tax issues. Determine who will be paying taxes, workers compensation, etc.
– State what type of notice is required if the worker quits or the care receiver no longer needs services.

Sample questions to ask the prospective caregiver:
– What is your caregiving experience?
– Are you bonded?
– Are you comfortable with me running a criminal background check on you?
– What are your expectations if I hire you?
– What classes or training have you had in caregiving?
– Why did you leave your last job?
– What do you like and dislike about home care?
– Can you provide three references from past or current clients?
– Is your license current? (as it relates to healthcare professionals)


Types of Agencies:

– Home care agencies prepare meals, assist with bathing, dressing, housekeeping, and sometimes shopping and transportation. The agency hires, trains and supervises their employees plus manages all payroll and labor law issues. Some states require these agencies to be licensed.

– Private Duty and Staffing Agencies are generally nursing agencies that provide nurses aides, homemakers and/or companions. The agency hires and is responsible for the care provided. A few private insurance plans may pay for private duty staffing, but they are quite rare. Sometimes, Medicaid and Veterans’ Services will fund this type of care. Medicare does not pay for these services.

– Home Health Care Agencies provide skilled nursing, PT, OT, speech pathology, social workers, and home health aides for personal care. They hire, supervise, and are totally responsible for their employees salaries, benefits, and caregiving standards. The majority are Medicare-certified, so Medicare will pay for their services. In addition to Medicare coverage, Medicaid, VA Services and numerous other health insurance plans, plus some long-term healthcare plans fund this type of care.

Home health care must be ordered by a physician and the patient must require skilled care such as injections, wound care, IV feedings, or certain therapies. In addition, the care must be delivered on an intermittent or part-time basis and the care receiver must be homebound during the period the agency is under contract. As soon as the care receiver no longer requires this type of care, Medicare and most insurers will cease coverage.

– Hospice Care Agencies are for the terminally ill who choose to stop curative treatment and focus on palliative care. Hospice care seeks to manage symptoms to provide comfort. A physician’s order is needed and he/she must certify that life expectancy is six months or less. If the person lives longer the physician can repeatedly re-certify to continue care.

Hospice is a fully funded Medicare benefit covering all medications hospital stays and equipment needed for management of symptoms caused by the terminal diagnosis. Many private insurance plans also cover hospice care, and the hospice philosophy is that services are provided regardless of ability to pay. Hospice also continues bereavement services, counseling, and support groups for the family for at least 13 months after the care receiver dies.


Comparing the Choices

There are numerous issues when considering whether to hire self-employed caregivers or to work though an agency. Obviously, those delivering the care must be qualified to meet the needs of the care receiver and caregiver for a positive and situation.

The table on page 179 lists some of the pros and cons of each type of care. It is adapted from the Family Caregiver Alliance’s Fact Sheet: Hiring In-Home Help (www.caregiver.org/hiring-home-help), which has further specifics on hiring in-home help. I highly recommend reading through it, especially before hiring self-employed caregivers.