SUPPORT GROUPS: A GREAT RESOURCE FOR REASSURANCE, PRACTICAL ADVICE AND HUMOR

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By Wendy Nathan, B.Sc., CMC

“Remember, we all stumble, every one of us. That’s why  it’s a comfort to go hand in hand.”

~Emily Kimbrough

November is National Family Caregiver Awareness Month. 

Family caregivers give it their all day in and day out, through the laughter and tears.  No matter the duties, they make it happen. Some tasks are large, others small. Some responsibilities are intimate, others mundane. It can be difficult (or even feel impossible) for families to find the time and energy to take care of themselves. As many family caregivers can attest, helping care for a loved one who has a chronic or progressive health condition can be physically, emotionally and mentally challenging. And isolating.

As Aging Life Care Professionals®, we recognize how caregiving can easily lead to caregiver burnout. We often help families identify and implement self-care strategies, which are indispensable in family caregiving. (To learn more about caregiver burnout and self-care, I encourage you to take the Caregiver Burnout quiz and read this e-book from my colleague Jullie Gray: Burnout Can Happen to Anyone: Take the Quiz to see if your Caregiver Flame is About to Fizzle. )

There are many ways to care for yourself, but I’ve found that attending a caregiver support group is an often-overlooked part of a healthy self-care plan.

Support groups can be essential self-care

Those who do eventually stumble into a group wonder why they waited so long to attend. Their preconceived ideas included notions that people just sit around complaining about things they can do nothing about. Or they assumed that talking about your troubles won’t help, so why bother when there are so many other things to do!

I facilitate a support group for the Alzheimer’s Association for young adults who have a parent living with Younger-Onset Alzheimer’s disease. Younger-Onset Alzheimer’s is diagnosed when symptoms occur before the age of 65. The challenges these families have are different since the disease often occurs while the person with the diagnosis is still working or raising kids. The group I facilitate may be unique in their situation, yet participants have experiences and emotions that are common to most family caregivers, such as:

  • feelings of being overwhelmed

  • struggles with problem solving

  • fatigue or tiredness

  • grief

  • sometimes, depression

  • financial worries

  • monotony

  • anger

  • disappointment

  • isolation

A support group becomes a safe place to share and work through these emotions in a healthy way, and find reassurance, comfort, practical advice and humor. Where a support group’s gifts become most evident is in the collective’s ability to understand your experiences as a caregiver. There’s validation, true empathy of the grief, loss and pain you may be experiencing. Most individuals in the group are either going through what you are or have been there themselves. You quickly discover you are not alone!

The culture of a support group is one of trust. The group is a safe place for participants to share fears, worries, frustrations, and sadness and to be completely understood by others experiencing similar feelings. It’s also a place to celebrate milestones, joys, awareness, achievements. The group can also help families prepare for what’s to come.

As a support group facilitator, I am amazed at how participants manage the complexities of their lives. I am in awe of how each have come to develop effective, healthy coping strategies, problem solving methods, as well as their willingness to listen and offer just the right advice at just the right moment. Even though I’m a certified care manager, I’m not the knowledge expert when we meet, the members of the group are. Their experiences are their teachers. They graciously and generously share insights, ideas, resources, and offer practical suggestions. It works!

We all need community, connection

In my work as an Aging Life Care Professional, I see how caregiving can be a lonely, isolating endeavor. Often, the friends and family of clients will fall away following a diagnosis or as a health condition becomes more complex. People who truly understand what you are experiencing can be found in a support group. Support group participation is something we encourage, and it’s a beautiful way to build a community of support.

A support group participant put it best when asked to reflect on her experiences:

“When my husband was first diagnosed with Alzheimer’s, we were both devastated. The physician who gave the diagnosis basically patted us on the hands, wrote a prescription for Namenda and said ‘I’ll see you back in my office in 6 months.’ That was it! No condolences. No resources. No referrals. It was the loneliest time in my life.

“I had no idea where to turn, what to do, how to move forward. It’s obvious now that my husband was in a progressive cognitive decline. He was retired, but now we needed to look at things like driving, financial decision-making, day-to-day concerns. Luckily, I found out about a support group through a friend whose husband also has Alzheimer’s.

“The group was a lifeline and a life-changer. I encourage everyone who is caring for a loved one to find a group. No one understands you like those in the group. And no one judges you. There is nothing but genuine concern, love and good counsel. If feels so good to know that I am not alone in this!

RESOURCES

  • Find an Aging Life Care Expert to help you navigate caring for a family member, friend or yourself and implementing a self-care plan

  • Support Groups: Make connections, get help – from Mayo Clinic staff

  • Find an In-person Alzheimer’s Support Group – from the Alzheimer’s Association

  • Check local hospitals and clinics, as they often have support groups for different health conditions

  • Senior and community centers often offer support groups as well. Find one in your neighborhood and inquire

  • Your faith community may offer support groups too

  • Recommendations from friends 

 

Wendy Nathan, B.Sc., CMC, is a Certified Care Manager with Aging Wisdom, an Aging Life Care practice with offices in Seattle and Bellevue (WA) and has over two decades of experience in healthcare working in a variety of roles. She has been facilitating a support group for over four years and has witnessed firsthand its transformative benefits. She is also a volunteer for the West Seattle Momentia Mix, a monthly event for community members living with memory loss and their family and friends.



Aging in Place: Is it Time to Get 24 Hour Care

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By Alexa Graziani, ALCA Corporate Partner

24 hour care includes both day and overnight care, around-the-clock. Although every state has its own regulations, some of the common 24 hour care options include the following:

  1. A full day is worked by one caregiver, with breaks, and that is then followed 8 hours of rest in the client’s house.

  2. Two caregivers work 12 hour shifts, with the evening caregiver staying awake throughout the night.

24 HOUR IN-HOME CARE BENEFITS

When care is provided in the home, it enables a spouse or aging parents to be able to continue living where they are the most comfortable. Proper preparation can mean the difference between chaos and a calm transition. It can be very helpful to learn how to be an active care partner.

The following are some of the most important benefits that 24 hour care can provide your family:

  • Calm agitation in individuals who have lost their sense of place and time.

  • Reduce urinary tract infections and skin infections.

  • Reduce fall risk for individuals who need help getting out of bed.

  • Reduce risk of dehydration and fainting.

  • Avoid bathing and kitchen accidents.

  • Improve socialization by spending time with a companion.

  • Meet medical and personal needs during the night.

It can be difficult to make the decision to increase the level of care or get started with 24 hour home care.

As family members, none of us want to have to accept the limitations of our loved ones. Or, we live in complete denial about their illness or dementia. Don’t wait until a crisis arises. Be involved and aware. Whatever you learn as part of this process will be truly invaluable.

“Many adult children call us in crisis mode after a parent has had a fall or trip to the hospital,” says Jackie Summers, Sales Operations Manager for Home Care Assistance. “These kinds of situations, more times than not, could’ve been prevented if the senior would’ve had an in-home caregiver nearby to assist or notice a change in condition. Taking a close look at how well a parent is getting along on their own can make a big difference in their health and well being.”

The following signs might mean it’s time to switch to 24 hour care for your elderly parent, spouse, or friend:

  • Falls are occurring frequently.

  • Confusing nighttime and daytime, agitated while in the dark or waking up frequently during the middle of the night.

  • Staying at a rehabilitation facility or hospitalized recently after a heart attack, stroke, or hip fracture.

  • Fainting due to being dehydrated.

  • Difficulties with drinking or eating without help.

  • Wandering away from home, by vehicle or foot, and getting confused or lost.

  • Confused by brief absences of caregivers, friends, or family.

  • Increased or new bathroom accidents.

  • You are afraid about leaving the individual at night or aren’t getting enough sleep due to having to tend to their nightly needs.

INVOLVE THE INDIVIDUAL WHO IS RECEIVING CARE

With all of the planning, sometimes the individual receiving the care is lost! At first, it can be a shock having unfamiliar individuals coming into the house to provide intimate care.

Make the effort to respect and honor your spouse’s or aging parent’s needs and wishes.

When it comes to choosing caregivers, include them in the process as much as possible. After the caregiver starts working, respond to any ongoing concerns your loved one has.

Be patient and flexible throughout the process of getting 24 hour care set up. Work with the home care agency closely to provide quality, consistent, and safe care to your aging spouse or parent.

 

Alexa Graziani is a representative of Home Care Assistance, a Silver Corporate Partner of the Aging Life Care Association.