A Caregiver's Path

This is a cross-post by Suzanne Gregory originally published on the Sarasota County Openly Plans for Excellence (SCOPE) Blog.

On Nov. 4 I attended the 11^th Annual Caregiving Forum at Sarasota Memorial Hospital, entitled “The Year of the Family Caregiver.” I was there as an impending family caregiver. Unclear as to when exactly I would become immersed in the role, but very aware that I was not prepared for it.

My parents are aging in place in their home about 200 miles from Sarasota.  I am the closest adult child, geographically, by a long shot. While the situation is OK for now, there have been a few bumps in the road this year and helping from afar has amounted to hand-wringing, hand-holding (over the phone) and doing frantic Internet searches to become more knowledgeable.

Part of my concern is the impact on my mom, who is likely to be the caregiver to my dad. It’s the way health issues are playing out for them. (I don’t think either of them would want me to declare anybody as a “caregiver” right now so I will resist.)

Basic facts from the  Annual Caregiving Forum:

The National Family Caregiver Association points out that more than 65 million people in the US provide care for a chronically ill, disabled or aged family member or friend during any given year.

That’s 29 percent of our population averaging 20 hours each week providing care.  Caregivers often suffer both mental and physical decline related to the stress of their role.  Seventeen percent of caregivers feel their health in general has gotten worse as a result of their caregiving responsibilities. How can my parents adjust to changing health realities, get the support they need to stay in their own home and minimize their stress?

This year, I worked with Kathy Black at USF Sarasota-Manatee and The Patterson Foundation on the topic of Aging with Dignity and Independence. The goal was to better understand the lived-experience of older adults as they age in our community. Caregiver health and well-being surfaced as an important issue. Older adults shared strategies for being resilient in the face of declining health and caregiver stress.   The results of this community-based research are coming out soon.

The Annual Caregiver Forum was a good place for me to get oriented.  Three panels gave information covering managing caregiver stress, getting the most out of your relationship with your doctor, local caregiver resources and financial and legal considerations.  I understand part of the forum was taped and when it’s available, I will provide the links here.

The big takeaways for me:

• The caregiver needs to manage their physiological response to stress.  How does one enhance the mind-body connection in order to minimize the impact of stress?   There were 3 specific suggestions – breath awareness, self inquiry (we are what we think), and affirmations - all directed at calming the mind and therefore calming the body.
• Get the most out of your relationship with your doctor.  A patient with a memory disorder should probably not be the only person conversing with the doctor.  Bring a list of questions with you.
• Understand the medication.  Know if the drug modifies the disease (e.g. insulin or blood pressure medicine) or targets symptoms and makes you feel better.  Not all meds are good for older adults.  There is a list called the Beers List of drugs generally considered unsuitable for older people.  A quick Internet check produced articles on this and other tools for looking for inappropriate meds.  It’s worth asking your doctor about.
• There are specific resources in Sarasota County  that are helpful  to caregivers – information, support groups and caregiver classes can be found at the Caregiver Resource Center , the Caregiver Network Srq and through the  Alzheimer’s Association .   SMH Memory Disorder Clinic provides diagnosis and assessment and helps develop a plan for services.
• Check out your legal documents, specifically the Durable Power of Attorney and the healthcare directives.  Laws have changed recently regarding Power of Attorney.  If your healthcare directive is only a page long, it is probably insufficient.

This is a good start for me. Not quite a road map, more like compass points to get my bearing along the journey. And definitely information to help me have a thoughtful and respectful conversation with my parents.

A new initiative that is a partnership between The Patterson Foundation and Share the Care, Caregiver Connect, will bring an online platform to our community in the near future.  This initiative evolved from their exploration of dementia. I see Caregiver Connect as a mega-resource making it easier for us to gather information and make choices.  More compass points.