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!