What I Miss Most

AA ECHO 2017
5 of 6 faculty from the original ECHO project (2017): L-R Erica DeFransceco, Donna Fedus, Kelly Papa, me, & Grace Martha Giannini.

For the past two years I’ve served my local community as Executive Director of a new assisted living. I’ve loved every minute of it. And I’m proud to say we’ve achieved one goal making it the best place to work in CT. Our team provides excellent care because they know we care. And yet, I feel like something’s amiss. My favorite days are the ones where I get to challenge my residents to a competitive game of cribbage, or listen to their stories about their grandchildren. And of course, as ED there are very few days where that is possible. I find myself longing for the days when I have a support group to facilitate, and eager to help families as they struggle with a family member with dementia.

So, Live Laugh LEARN team, I’m going to get back into the consultation role. I’m going to reach out to some folks and see if there are still families who may need some coaching on behaviors and meaningful activity throughout the day. Dementia care is my passion and as I reflect on the work of the ECHO Summit, I know that my WHY can only be put aside for a short while.

How do We BEAT the BEAST?

It’s only one letter different… beat and beast.  And I think if we change the Z to an L, ALZ can be beaten — but it will take us ALL.

Want to learn what I think we need to do? I’ve just finished the final edits on a white paper posted on my community’s website, ColebrookVillage.com.  There you can read my thoughts about the breast cancer movement and what we need to do to #EndAlz.

Education is key. We cannot beat any beast without knowing about it ~ researchers will work on genetics and biomarkers.  WE can educate ourselves about symptoms, interventions and ways to enhance the lives of those living with Alzheimer’s and related disorders — the individuals diagnosed AND their families.

Here’s what I just learned that YOU need to know.

CAREGIVERS have distinctive symptoms of Alzheimer’s that need treatment. Let me clarify: this does NOT mean that AD is contagious.  It simply means that diseases like Alzheimer’s effect the entire family, not just the person with the diagnosis. This comes from our friend and consultant Paul Raia, PhD.  He said the person diagnosed has symptoms we’re familiar with, such as memory loss, judgment issues and functional losses.  The caregivers have symptoms too, and these include:

  • Physical illness – this is common for people caring for others, and may include muscle strain, back injury as well as susceptibility to viruses due to diminished immunity from stress. Increased cortisol, the stress hormone, has a negative effect on the body.
  • Decreased emotional well-being – this can include caregiver burden, depression and disengagement from the activities a caregiver enjoys.
  • Increasing social isolation – Many caregivers report feeling invisible. Even in caring communities, such as a faith community, friends and acquaintances often look away, or decrease their support if they are unsure what to do to help. As care needs increase in later stages of Alzheimer’s, caregivers have less and less time to maintain social networks.
  • Increased financial challenges – According to the Alzheimer’s Association, a recent study found that the last 5 years of life for a person with dementia cost more than $287,000. Other studies have indicated that 70% of the costs are borne by the family. Medicare does not pay for most of the costs associated with Alzheimer’s and related dementias.  These are expensive diseases.  Families are becoming impoverished paying for the necessary care.  Some spouses receive recommendations from lawyers and financial planners to divorce the person with dementia.  Our system needs fixing, but that’s a different post!

The symptoms for caregivers are just as visible as the patient’s — if you know what to look for.

BUT WHAT DO WE DO ABOUT THE SYMPTOMS?  You know the answer.  Help is out there.  Call me, email me or track me down.  I’m happy to help.  Call the Alzheimer’s Association 24/7 — they’re much easier to track down 🙂  800-272-3900 in multiple languages!

There’s Respite…there are tax deductions… there are support groups…there are therapists… there are medications…. there are exercises… there are social engagement groups for you and the person diagnosed. And opportunities are growing each year.

MAKE YOURSELF ACCEPT HELP.  I know that some days it seems simpler to just do it all yourself.  And it’s true that stress helps us stay alive — but it’s not healthy in the long run, and this is a long-term situation.  GET HELP NOW.