Support Groups…the Naked Truth

You may picture the scene in your mind, as seen on various TV sit coms and movies:

……Sitting on a folding chair in the local church basement, the smell of burnt coffee and stale donuts wafting through the air. You are surrounded by a room full of strangers. Everyone is expected to talk when it’s their turn.  Some go on…and on..and on…There is lots of sharing of private “feelings”.  As you listen to the sad story of the person next to you, you silently wonder why you came in the first place.  Oh, and the chairs are arranged in a circle, so eye contact is uncomfortable and unavoidable…

Now. Personally, I find support groups to be wonderful places! Of course… I am a social worker. And social workers are known for their love of people… and circles… and “feelings”.  Granted, my comfort level is not shared by the general public.  Just the WORDS “support group” trigger all sorts of preconceived notions.

So, let’s dispel 5 common myths and talk about what really happens at a support group.

MYTH: “All group members must share their story.”

TRUTH: Sharing will help you reap the most benefit from the support group experience. However, you are NEVER forced to talk during the group.  Many members observe for several meetings before sharing a thing!

MYTH: “Group members must RSVP and commit to attending the group regularly.”

TRUTH:  RSVPs help the organizers plan for logistics like room set up and refreshments.  However, you are free to walk in with no prior notice.  There may be different people in group each week.  Life happens!  The meeting time may work well one month, and not so well  the next! It’s important to see the group as a benefit you look forward to, rather than another obligation you have to squeeze into your day. When you find the RIGHT group for you, this perspective develops naturally.

MYTH:  “All support groups are the same. If you’ve seen one, you’ve seen them all.”

TRUTH: Each support group is in fact very different.  Some have more spouses and life partners. Others have a higher number of adult children, or long distance caregivers.  Some meet at nursing homes or senior centers, others at churches (though the coffee and donuts are usually quite good! J ). Some groups invite regular guest speakers to educate members about various dementia related topics. In others, group leaders prepare a general topic to stimulate sharing and discussion. The best way to determine whether a support group is right for you, is to contact a group leader.  This person typically works in the senior health care field, and can fill you in on details about the group.

MYTH : “I’m handling mom’s condition just fine, I have it all under control. I don’t need a group.”

TRUTH: As a recovering Type A control type, allow me to shed some light on this one.  There is no CONTROLLING dementia.  There is just COPING.  The progressive, ever changing nature of dementia means that tomorrow, next week, next month, or next year, may be very different from today.  Once you’ve figured out how to solve one issue, another has arrived in its place.  Support groups are rich with knowledge and resources.  Group leaders and members have certainly never walked in your shoes.   Still, chances are, some have traveled a very similar path…and have picked up some great tips along the way.

MYTH:  It’s hard to find a support group that fits my schedule. There is no way to know if a group will meet my needs.

TRUTH:  There are over 70 support groups in Connecticut alone, with additional groups forming all the time.  The Alzheimer’s Association trains support group leaders.  This ensures that leaders are well prepared to lead effective, quality groups.  You can find Alzheimer’s Association endorsed support groups on their website. Visit: http:\\www.alz.org/findus.

 So… if you are a person or a caregiver living with dementia, consider a support group. What’s the worst can happen? Burnt coffee? Stale donuts?  Grab Dunkin’ on the way!

“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

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Neurofibrillary Tangles don’t Prohibit Zentangles

Like many caregivers (paid and unpaid) my friends are my lifeline. I get satisfaction from being a caregiver, but sometimes I need to get my brain out of my world and into another, in order to keep perspective. I had such an opportunity to change worlds in 2013. Creating Zentangles has been a part of my life ever since.

An acquaintance had suddenly, tragically lost her husband. They had a new business, and I had interviewed them for a local cable TV show.  My show was the last picture/video she had of him. We became fast friends. But she needed time to get her life back together: two kids to raise and get through school, a business to redevelop and a broken heart to mend. In 2013 we went to lunch and she told me how she was doing it all – she was doing a lot of personal work and one of her outlets was Zentangles.

Since then I’ve been teaching myself. I find that my tangles reflect my life (I keep nothing inside!) and when I’m calm, they are calm. When I’m frenzied so are they.  In 2014 I put the practices I’d learned to the ultimate test: I tried to teach the basics to Daisy Girl Scouts (kindergarten and 1st grade girls) on their very first campout.  For some, this was their first time sleeping away from their parents. We all doodled, shaded, colored, and every girl slept through the night! The parents were amazed and impressed that I had been so “skilled” as a leader.

That inspired me to try tangling with another unique group: clients living with dementia. I am a gerontologist (I geek out about aging), and a Certified Dementia Practitioner. Since I’ve also been a caregiver, I know that anything that helps a person with dementia to relax is priceless. I started working with my clients, and I found Zentangles to be an amazing form of expressive arts for most people (not all).  You can get my free e-book Guide to Using Zentangles in Dementia Care by going to www.agingcareacademy.org.

It strikes me as ironic that many of my clients haven’t explored this art form, relaxation therapy or however you want to label it, UNTIL their neurons started to tangle.  What I love about ZT is that the structure offers support, but there are no right/wrong ways. This makes it a natural “failure free” activity to do with people living with cognitive disorders – but if you are a caregiver who does it for escape – feel free to keep this therapy to yourself!

Pamela Atwood, MA, CDP, CADDCT is Director of Dementia Care Services at Hebrew HealthCare in West Hartford CT (www.hebrewhealthcare.org) and the founder of Aging Care Academy (www.agingcareacademy.org). You can follow her on Instagram at pamela.atwood and watch her free Confident Caregiver Series videos on YouTube (search Pamela_Atwood).

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Conflict in the Family – Will Mediation Help You?

This month’s dementia care article is guest-authored by our colleague Karen Dworski, LCSW. Thank you Karen for sharing your insights, and by supporting our shared communities. 

Mediation for Families Facing Dementia

by Karen Dworski, L.C.S.W., ElderPath Consultant and Mediator

Few people are prepared to hear that their mother, father, brother, or sister has been diagnosed with a dementia (now called a Neurocognitive Disorder). Just like the grief process described by Dr. Elizabeth Kubler-Ross in her work on the five stages of grief, family members of a loved one with a Neurocognitive Disorder go through a similar grieving process: denial, anger, guilt,sadness and acceptance.* Often families struggle with the denial stage, such as when a family member, say a daughter in California, is in contact with her Connecticut sister who is managing care for their mother who has been diagnosed with Alzheimer’s disease. So often I hear that the California daughter says, “Mom’s fine! I talk with her every week and she makes sense, she knows who I am.”  Or a son who is not a caregiver may struggle with his mother’s decision to place his dad in a memory care assisted living, struggling with his own guilt about not being available to give enough support to keep his dad home.

These are two of many scenarios that occur when family mediation can be very helpful in assisting families with the emotions and decisions related to caring for a loved one with a Neurocognitive Disorder (dementia). Often families benefit from sitting down with a dementia care specialist who can facilitate a discussion about care, covering such issues as:

  • what is each family member’s goal for care for that loved one with a Neurocognitive Disorder?

  • What is a realistic assessment of the loved one’s level of dementia and stage of the disease?

  • How to help a family understand the level of functioning and explore the options, develop different plans of care that meet the needs of the loved ones in a way that basically satisfies the family- finding the right path for elder care.

  • How to have this discussion and bring family to the same page, preserving family connections and relationships

As a social worker and therapist specializing in geriatrics and Neurocognitive Disorders, I meet with families in their homes or my office to mediate these issues.Often families are surprised to find out about the many good options for care that are available, from in- home care that ranges from a few hours to 24/7 care, supplemented by adult day recreation programs, to excellent memory care assisted living communities and nursing homes. An important part of the mediation is to address the grief, loss, and sometimes denial that family members experience, bringing them to an accordance around a plan of care. Of course, the discussion also includes reviewing funding for care, and referrals to funding sources where possible.

I recently met with a daughter, Jessica, from Massachusetts and her father’s partner of over 20 years, Doreen. Doreen had been providing care for Jessica’s father for the last 3 years and his father’s Neurocognitive Disorder was advancing rapidly, leaving him currently with the developmental abilities of a 5 year old child, needing help with many functions of daily life: medication management, dressing, bathing, meal preparation, and recently toileting assistance. Doreen was burned out from working full time and providing all the care except for a 2 hour a day caregiver 5 days a week. Jessica’s father was home alone except for 2 hours a day with a caregiver, so he was often bored and began to feel more depressed. We identified Jessica’s wish that Doreen could continue to care for her father, yet she understood Doreen’s exhaustion and the need to stop caregiving and return to being a companion/partner. We talked about the way Doreen’s role over the last 3 years slipped into one that was primarily caregiving instead of a life partner, and how stressful and lonely that was for Doreen. During the 2 hour mediation session, Jessica and Doreen agreed on a plan for in-home 24/7 care with Doreen moving  out over several weeks, but continuing to visit a few nights a week after work in the role of companion/partner. They were aware of the option of moving Jessica’s father to a memory care community and ultimately to a nursing home with a dementia care specialty, but that wasn’t the first choice.

With the aid of mediation, both Jessica and Doreen were able to develop a plan where everyone’s basic needs were met: Jessica’s needed to know that Doreen would continue to be a part of her father’s life and that her father would have the care and support he needed.  Doreen sorely needed a respite from caregiving and to be able to return to her role as companion/partner. Jessica’s father would have high quality paid caregivers who would provide the stimulation and activity needed to keep him from becoming depressed and would keep his functioning as high as possible over time. Both Doreen and Jessica agreed on the steps needed to put in home care and remove Doreen from direct caregiving. Ultimately, they agreed on a good plan for Jessica’s father and, importantly,  their relationship with each other was preserved, one of the goals of good mediation. As you can see, family mediation can provide the right help at the right time.

*See Grief and Loss as Alzheimer’s Progresses:https://www.alz.org/care/alzheimers-dementia-grief-loss.asp

https://www.alz.org/care/alzheimers-dementia-grief-loss.asp

Karen Dworski, L.C.S.W. is a Consultant and Mediator for ElderPath LLC; www.elderpath.net860-652-8809; karen.dworski@elderpath.net

Thank you Karen for submitting this. And thank you all for reading our blog. For more information about stages of dementia, services which may help you or how to schedule a dementia consultation, call Hebrew HealthCare at 860-920-1810. ~Pam

#1 Way to Avoid Conflicts with Confused People

One of the greatest challenges families and care professionals face in caring for people with dementia  is responding to agitation. When I train caregivers, a strategy we stress is to avoid the things which cause agitation, instead of having to respond to it. And there is ONE technique that is most important to avoid conflicts when someone is confused or disoriented.

FOCUS ON FEELINGS, NOT FACTS

Agitation is usually a result of a communication conflict. Caregivers tend to focus on correcting the person with dementia about facts they’ve misstated or forgotten. At a recent support group meeting we discussed this. With her permission, I share the response from one of our members:

They do not need to live by facts anymore as that is not the world they are living in.  I’ve been thinking a lot about it and am really understanding that their feelings of their story is a comfort to them.  They don’t have the ability to process feelings the way we can, so supporting those stories helps them feel supported – like they matter.  I think that is critical in their lives.  They may feel that they can’t contribute anymore therefore they are not important/they don’t matter. 
There is a great benefit when caregivers focus on feelings; quickly caregivers see results. She continued:
If we add excitement and enthusiasm or at least agreement to their story, they perhaps feel validated and a bit more significant.  I’ve already been applying this since I returned home.  Thank you again for imparting such wisdom.
Thank you to Brenda M and all of the participants in our support groups. Your courage and emotional generosity inspires US each month.
Let us know what techniques you have found successful to prevent agitation.

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.