“THE MOST WONDERFUL TIME OF THE YEAR”? ASK SOMEONE CARING FOR A PERSON WITH DEMENTIA. IT’S COMPLICATED…

The turkey has finally made it to the oven; and the house is adorned in Thanksgiving attire.   Side dishes have been creatively stored in every possible location….as far as the eye can see. The long awaited rival football game echoes from the TV in the background.  The twins, their friends, and a month’s worth of laundry have just arrived home from college.  Between work, shopping for the grandkids, and preparing to host the holiday dinner, you really need a nap.

Sound like a typical American holiday?

Perhaps, but let’s see things through Sally’s eyes.  Sally is 75 years old, living with her youngest daughter.  Sally has dementia.

{What’s all the noise about?  Who are all of these people? Do I know them? I’m tired. I miss someone. I should probably do the laundry. Where did all these mens’ clothes come from?  What is that yelling in the other room?  I’m hungry.  What IS that BLINKING LIGHT! I’ve got to go….oh no, where is that bathroom?}

The holidays can be a magical time of year…full of joy and wonder.  They can also be exhausting…full of chaos and stress.  Most of us get through the season with our sanity in tact (though sometimes just barely!).  We have the gift of a widened perspective which reminds us: “It won’t be forever!” We try to focus on the meaning behind the holidays.  We manage to be tolerant of the traffic…the noise…the rush.

Now:  Sally’s perspective isn’t what it used to be.  As each year passes, her ability to “go with the flow” of the holiday diminishes.  Her perspective narrows.  She becomes restless during extended family outings.  She is visibly overwhelmed when the youngest grandchildren all visit together.  Last week the UPS truck came three times in one day.  Each time she was startled and became fixated on the large out of place truck stationed in the driveway.

So….. what’s the secret RECIPE  for a successful holiday experience for Sally? Try this….

(1) “Pre-heat” the home’s temperature, to Sally’s comfort…or offer sweaters if the rest of the family is melting.  Be sure to consider basic needs. Look for signs of hunger, thirst, being too hot or too cold, having pain, needing the toilet, or being overtired.

(2) “Generously prepare” distant family members on what to expect from Sally.  Teenagers and younger children may need frequent reminders to keep things as quiet as possible.

For example: “When your friends come over, it may be best to visit in the rec room downstairs, as changes during the evening hours can be unsettling for Grandma”.   “She may confuse you with another person. This is normal for her”.  “She likes to talk about years ago…try talking about life on the farm”, or “Be sure to speak slowly, it will help her keep up with the conversation”.

(3) “Fill” each day with a similar amount of activity.  Routine and structure become key ingredients.  Try to not overschedule Sally, keeping outings short and focused. Use darker curtains and white noise in certain areas of the home to reduce exposure to excess noise and unexpected visitors.

(4) Add a personal companion during busier gatherings.  Pair someone with whom she relates well.   This person should observe for any subtle change in her mood/behavior.  This may indicate an unmet basic need, boredom, or the need for a quieter setting.

(5) “Stir-up” old memories though sharing pictures and stories from the past.  Memories linked to emotional experiences are preserved longer than other types.  Reminiscing invites  Sally to access feelings of joy, self worth, and connectivity.

(6) Too many cooks in the kitchen can spoil the broth, but be sure to ask for her input throughout the season.  Check in with Sally at the restaurant: ” Do you like it here?”   “Shall we head home after lunch, or would you like to visit your sister on the way home?”   “Can we visit the restroom one more time before we go?”

(7)Allow Sally time to “cool down” and relax after periods of activity.  Outings can be both physically and mentally tiring for her.

(8)Try to not “over decorate” the home.  A busy décor with bright colors and blinking lights may be over-stimulating for Sally.

(9)Take note when you become distracted.  Be present and try to follow the recipe.   Invite Sally to share the sights, the sounds, the  smells and tastes of the season.

(10) Make adjustments to this recipe and reach out for help from the experts as needed!  No two care partners walk the same path.  Creativity is the spice of life!

 

celebrate-caregivers-the-sandwich-woman

~The Artistry of Caregiving, Letters to Inspire Your Caregiver Journey~

by Carole Brecht

I started caring for my Mom full-time in 2009 after I closed my art gallery/custom frame shop. I had planned to secure a job within six months, but my career path took a turn when my Mom was diagnosed with Alzheimer’s Disease. My Dad was still working full-time and I lived nearby, so it seemed fitting that I would be taking on the role of Mom’s Caregiver. For a long time, I didn’t know the word “Caregiver” or its meaning. All I knew was that I was the daughter stepping up to help my parents in their senior years. I’ve always been close to my parents and would do anything for them if they called on me. To this day, I am caring for my Dad throughout the work week.

Initially, Mom was on a slow decline, but when she took a fall around the holidays that year and broke her arm, everything changed. She was heavily medicated with pain meds and her mental state began to change drastically. What I witnessed over the next several years of the ravages of this awful disease was horrific and scary. She looked exactly the same, but her aggressive personality changes were huge. At the end of her life, in September 2014, I made a firm decision to write a book for those going through their own Caregiving journeys and began writing The Artistry of Caregiving. All I could think about was helping someone in the same shoes to let them know they were not alone, but very much understood, appreciated and supported. Mom died on November 23, 2014.

I started writing my blog and creating a Facebook page in January 2015, while I was writing my book. I never gave social media a thought and had never written a blog before, though my love for writing started in my 40s. Although I was wallowing in grief, I forged ahead with passion and energy because my desire to help others was so much greater than how sad I felt. I was compelled to write my book and wanted my readers to find inspiration, comfort, connection, feel understood, experience support and find hope. In February 2015 I launched my blog and the San-Gen-Woman Facebook page (formerly known as The Sandwich Woman). I also went on to create Twitter and Instagram pages in May of 2015. 45 countries are represented in my social media and it has been a blessing to be able to touch so many lives in a positive and heartfelt way!

My book includes several of my Caregiver Zentangle Inspired Art designs that affirm and support Caregivers. The book also includes 33 letters written to the readers to help them to navigate the emotional journey of caring for another. It’s meant to be read on the go, in no particular order. If a reader can’t focus or doesn’t have time to read, the images throughout the book will inspire and affirm. The paperback edition will be out in July on Amazon. Whether you are at the beginning, middle or end of your journey, this book is written for you. Here is an excerpt:

“Letter 21

Dear Captain,

You are the captain of the USS Caregiver, and you are in command of a host of people who are helping you sail the Caregiving seas. You make decisions every day that are correct to get to your destination, which is tomorrow and then the next day and the next. You weather all kinds of conditions and you do it with class and joy. Who could ask for a better captain than you?”

Who is a Caregiver?

Caregivers come in different ages, both boys and girls, men and women, teens, young adults and seniors and typically that person has a huge heart. There are Caregivers/Carers all over the world and we are the most diverse population possible! Though my Caregiver experience is based on my relationship caring for my parents in their senior years, the concept of caring for another follows us throughout our lives. We learn to love and to care for others from the time we’re toddlers. People of all ages can read this book and benefit from the emotional support through my words and my Zentangle Inspired Art. My book is your companion, letting you know you are understood and not alone. I hope you refer to The Artistry of Caregiving throughout your lifetime and you share it with others. May my book bless you and comfort you as you navigate the emotional journey of caring for another.

CaroleBrechtPR

CONTACT INFO:

cbrecht4@gmail.com

Amazon: The Artistry of Caregiving, 

Letters to Inspire Your Caregiver Journey

TangledArtBoutique.com

facebook.com/SanGenWoman

SanGenBlog

Twitter: @SanGenWoman

Instagram: Carole Brecht @San_Gen_Woman

TheSandwichWoman.com

Cultivate Your Creativity Now to Cope with Stress Later

Pamela Atwood, MA, CDP, CLL, Director of Dementia Care Service, Hebrew HealthCare

An article in the January 11 Hartford Courant inspired this blog post. “Can the Arts Heal” by Fredrick Kunkle of the Washington Post reviews research on arts and wellness. There are many challenges: poorly designed studies without controls, sample sizes too small to prove relevance, and limited funding for something that is not quantifiable. Regardless, there’s a strong body of research that the arts help people cope. What’s missing is the big question – will the arts help YOU cope when YOU need it? The answer may be “no,” unless you cultivate creativity now.

Chances are good that YOU will end up with some sort of disability in late-life. We’re good at keeping people alive longer, but they live with chronic conditions such as severe arthritis limiting mobility, impaired vision from glaucoma or macular degeneration, Alzheimer’s disease or other cognitive impairments, diabetes, or movement disorders such as Parkinson’s or MS. The key to SUCCESSFUL AGING is adaptation. The arts help you adapt and maintain a quality life.

As I look at my friends and those younger than me (I’m a Gen-Xer, kid of the 80s), I see more reliance on little boxes of technology. The technology might be helpful as we age, but let’s face it: aging services are often the LAST to get new technology. The arts are timeless and readily available. Music, dance/movement, art, cinema/drama, poetry require little outlay of cash. But if we don’t cultivate our ability to use the arts to help us NOW, then it will just be “an activity” later in life.

Here’s what I mean. The article had a picture of a gentleman with paranoid schizophrenia who paints murals. The ability to paint reduces his need for medication – maybe eliminates it. He said, “The paintbrush and the art give me an outlook and a feeling of serenity and peace, love and joy. The paintbrush is the treatment for all else that has failed.” But if he didn’t LOVE painting, it would just be busy-work and he would still need lots of medications to treat his symptoms.

I once saw a resident who looked bored, and I asked her if she wanted to draw (I’d seen her drawing in the past). Her response was “Drawing is what they have us do when they don’t know what to do with us.” Ouch. I don’t think that was true, but at the very least, that was HER perception (and perception is reality, especially to those with dementia).

So what will YOUR future look like? Will you see the arts as “just an activity” in your boredom-filled days, something offered between the primary activities of meals and personal care? Or will you look forward to free time, trying to figure out if you have enough time to finish crocheting the afghan for the new grandbaby, or eagerly waiting for the paint to dry on your ceramics, or allowing the songs you sing to bring memories of what you can no longer see? CULTIVATE YOUR LOVE OF THE ARTS and it could free you from the confines of your age-related conditions. Make time for them every day now, and they will help you cope with the changes of aging. Adaptation is the key to successful aging, and the arts will help you adapt and live a life worth living. If you don’t know where to start, begin by reading our other blog articles on Zen Tangles, Timeslips creative writing, Poetry and Life Enrichment. Also, check out www.agingcareacademy.org for more information on the arts and creativity throughout life.

Words, Image and Ideas: Pathways through Dementia

Pamela Atwood, MA, CDP, DCCP, CLL, Director of Dementia Care, Hebrew Health Care

CAN PEOPLE WITH ADVANCED DEMENTIA READ? Ask clients about their previous interests and older adults answer “Well, I used to like to read.” Has this favorite hobby been lost along with their memory of what they had for breakfast? Hebrew Health Care loves evidence-based practical activities for people with dementia and their families – we HAD to share this resource with you, so we’ve invited Susan Ostrowski to guest-author an article for you. Email us your feedback at http://www.agingcareacademy.org.

Memory-challenged adults may not speak well or comprehend language easily; maybe they can’t manage their hygiene independently. It is easy to assume that their ability to read has atrophied as well.

If we put a large print single word in front of a memory-challenged adult, and she can see it, there’s an excellent chance that she can read it, i.e., sound out the word and comprehend it. If we put a phrase or a sentence or even a small paragraph, printed in big, black letters, on a bright white piece of paper – would she read it? Most likely, yes.

For most memory-challenged adults with functional vision and functional language, reading is an intact, preserved skill. Then why are conventional newspapers, magazines and books so difficult for adults with dementia to process?

The answer lies in the format of typical published reading material.

Typical published material consists of condensed small print, low visual contrast and extraneous visual stimuli. These are major impediments to reading for seniors with dementia. However, if we present written language with large, bold font on white paper with wide margins and extra space between the sentences, they can usually read it.

To increase the readability of a text for this group of seniors, the following elements must be present:
-minimal visual distractions (which compensates for attention deficits),
-sharp visual contrast (decreases eye strain),
-spacious lines of print (compensates for visual tracking difficulties),
-short, direct syntax (lessens the burden on working memory),
-contextual photographs (prompts and maintains interest).

And here’s the exciting part: these lifelong readers generally do not require diluted vocabulary or juvenile subject matter. When presented with child-like material, they show little motivation to read. They can process sophisticated words and subject matter that are reflective of their spoken language. Generally it is only the presentation of the reading material that has to be modified.

Caregiver Corner: Surviving the Holidays

Geriatrics: Our Mission Is Our Passion

Pamela Atwood, MA, CDP, Director of Dementia Care Services

Holidays represent opportunities for togetherness, love, laughter and sharing with family and friends. In reality, they can be stressful times for everyone. They can be completely overwhelming to caregivers, and often represent loss, sadness and disappointment. Keeping these survival tips in mind will help caregivers make the most of this holiday season.

Be realistic
Know your limits, and the limits of your loved one. Adjusting expectations will help caregivers, family and friends. Activities often need to be simplified and minimized to reduce stress levels. If you usually serve 20 people, serve only 5 this year. Or instead of making all the food, have guests bring the holiday dishes that mean the most to them. Caregivers can expect the normal tensions of the season, plus the stress of caregiving responsibilities. Let others know what they can do for you – and then…

View original post 222 more words

Waiting in the Green Room

Pamela Atwood, MA, CDP, DCCP, CLL, Director of Dementia Care, Hebrew Health Care

As I sit here in the Green Room at Fox Channel 61, I am aware of how little we think about brain health. People take it for granted.

Sitting across from me is a young man dressed in his AAA shirt. He watches the news on the TV. Maybe he is trying to remember the answers to his pre-created questions. Or maybe this is old hat to him; he is recalling his experience during Hurricane Irene, which the newscasters remind us was 3 years ago.

Next to him are two women from the local children’s museum. No one but me notices they have small animal cages at their feet, protective towels covering the “guests” who will appear before me (a hedgehog and a snake). They discuss the details of their lives. Kids’ schedules, first days of school, other work projects. Their attention goes to the Green Room TV over a story of famous faces drawn into lattes, unaware if their cognitive functions deciphering the espresso art.

Next to me sits a grandmother and her teenage grandson. He created YouTube videos when they were driving around after school – fun things like his “friend” Miley Cyrus who broke her leg while working, but is doing much better, or a story that he got a girl pregnant, which his grandmother knows is his way of teasing her to get a reaction (she’s unaware that Miley is a celebrity). She takes none of his nonsense. The videos have gone viral. They are excited to see the story teaser on TV. I tell him how lucky he is to have his grandma and get their autographs to their delight. When they ask what I do, they give me the response everyone does… “Oh”.

It’s something people take for granted, cognitive wellness. Whether it’s remembering driving tips for the busiest weekend of the year, or executive functions for organizing your day, or learning about YouTube and being creative with the special relationship we can have with our elders. And people are speechless at the thought of losing it. They do not realize there are things we can do to MINIMIZE those risks.

There are so many people to reach with this message, and so many competing messages grabbing their attention. Please visit www.agingcareacademy.org and click on the Dementia Risk Screen. Don’t let your answer be “Oh” when faced with the concept of losing cognitive health. Empower yourself to do all that you can – challenge your brain to remember simple lists, reminisce about facts of our past history, create projects and think about the individual steps, look for familiarity in places you’d least expect it, tell creative stories, learn about new things and keep social ties strong, especially relationships with those you love. All of these things help keep your brain healthy.

Exciting Alzheimer’s Research Updates

Pamela Atwood, MA, CDP, CLL, DCC-T, Director of Dementia Care Services, Hebrew Health Care

Rates of Dementia Decreasing with Simple Steps

The news from the Alzheimer’s Association International Conference in Copenhagen last week was encouraging. Rates of Americans getting dementia are decreasing, as are rates in other “rich” countries. Why? We are controlling our risk factors.

Last year, Hebrew Health Care published the Dementia Risk Screen: eight of the 11 risk factors are modifiable. The news this week confirms you can minimize your risks!

Research conducted at Boston University has analyzed rates of dementia through several decades. The Framingham Study indicates that an individual’s risk of getting dementia is 44% lower than it was, and that the average age of onset is now 85, compared to 80 in the 1970s.

The primary reason: improved health overall. Smoking rates have dropped. Heart disease rates are improving. Numbers of strokes have declined. The study indicates the following steps will continue to improve the numbers:
o Stop smoking
o Control blood pressure
o Manage weight
o Keep cholesterol levels within normal limits
o Exercise

In other countries, the numbers are improving as well. However, there are new health rates which may limit the excitement. Higher obesity and diabetes rates may further increase the risks of dementia. Quoted in an article by MSN News, Dallas Anderson, Chief of Epidemiology at the US National Institutes of Health said, “It may be what we have now is a sweet-spot (as people with these health issues are still young). They’re not in the dementia range yet, but what is going to happen (with them) in the pipeline?”

Take the Dementia Risk Screen at www.agingcareacademy.org. Listen to the podcasts to learn what you can do to minimize your risks starting today.

New Ways to Diagnose AD Being Developed

Three other breakthroughs were announced this week: a smell test, a blood test and an eye test.

Blood test – Kings College in London reported research conducted over the past decade to develop a test for diagnosis of AD. The studies indicate 87% accuracy. The test detects 10 proteins in the blood, and indicates onset of AD in the following 12 months.
“Why would I want to know?” responded one of my colleagues. “I think most people would NOT want to know,” said a caregiver when we discussed it at a support group meeting.

Most of these tests are being developed FOR research. Many researchers are concerned that drug targets fail because by the time the experimental agents are tried, the disease has taken too much of the brain to be effective.

The target for the blood test is people with mild cognitive impairment (MCI), the vast majority of who develop Alzheimer’s in 5 years following diagnosis.

Although this is exciting, there is no blood test for dementia ‘around the corner’, according to published reports. These are small studies. And with more than 10% of people being misdiagnosed, more work, on larger scale studies, is needed.

The other two tests – smell test and eye test – are correlation studies. At the AAIC press briefing, there were lots of discussions about these two studies. The smell test is about people who have MCI, they experience changes in their ability to smell, and that correlates with the transition to Alzheimer’s. For the eye test, proteins detected correlate with amyloid proteins in the brain. However, there are still a significant number of researchers and experts who question the amyloid THEORY as the protein responsible for plaques and tangles. These tests are based on theories of what causes Alzheimer’s. Also it is important to note that just because you have a change in your sense of smell does NOT mean you have AD. Many conditions affect taste and smell.

New Protein Identified in Alzheimer’s Plaque

There were hundreds of studies shared at AAIC. Another interesting one hails from Mayo Clinic in MN. Researchers have identified a new protein which may be another piece of the “plaque” puzzle. The research compared people who died with Alzheimer’s – some who had symptoms, and some had not. Of the 372 people, more than 200 had this new protein, in addition to amyloid protein. One theory is that perhaps the protein is a byproduct of the disease. The protein has been identified as critical in ALS/Lou Gehrig’s disease and other neurological conditions. More tests will be conducted.

There is still no known CAUSE of Alzheimer’s. Unfortunately, there is still no known cure. However, the research reported at the AAIC last week is encouraging for the ongoing efforts to find the answers which plague us.