Wednesday, March 2, 2016

ALZHEIMER'S: WELCOME TO THE CLUB

A day at the Museum with our daughter February 2016

It’s early March, not at all what I would call spring but here in Arizona the warm clear days have convinced everything to sprout.  I’ve just finished planting petunias in our garden pots. Looking up, I notice the orange tree is starting to bud.  My hands are black from the potting mix so I wash them with water from the hose and wave to the gardener as he rushes by on his riding mower. The smell of freshly cut grass floats in the breeze behind him.  Ahh.  It’s as though Mother Nature is telling everything to wake up and renew.

I’m feeling hopeful and optimistic, partly because of impending spring but also because our daughter Natalie just spent a week with us.

She didn’t bring a potion with her that had some supernatural effect (besides, the airline wouldn’t have allowed it on the plane anyway), but she provided a special infusion of optimism, just what we needed.

Like most mother-daughter relationships we’ve smoothed off the rough edges that accumulated during the early years of mothering, childhood, and adolescence, and have gotten to a place where we enjoy each other as equals; two adults with a strong love and respect for each other, and many shared goals and objectives.  It’s a good, strong, defensible place to be when Al decides to join your family. 

At one point, as we talked about what lay ahead for us, Natalie said very matter-of-factly, “Mom, you just need to know that I’m on your team.  I understand how hard this is and I want to help”.

How lucky I am.

While she was here, we took the opportunity to refine our care plan and met with a Memory Care Navigator from Sun Health Foundation. Marty, a very personable advisor--and a sort of coach—helped us understand and connect with available support resources, spending an afternoon with us mapping out a “plan of attack”, one that helped provide the push I needed to seek support.  So, last week, Natalie stayed with Joe while I attended my first group support meeting.

It was a gathering of about seventeen people, all of whom are caregivers for spouses or other family members in various stages of the disease; a few more women than men but fairly representative of the community.  I mostly listened, feeling too new to the group to interject my own thoughts. 
  
I was particularly struck by one woman.  The topic was managing the isolation that can come with Al.  I believe she was providing care for her mother (but that isn’t central to my point).  She said she tries to find time to do kindnesses for other people (not just her mother) and that by doing so she derived more happiness for herself. 

I think I know what she was saying.  It was like baking Christmas cookies for the neighborhood last year.  It felt good to do something for someone not involved or focused on our own woes. 

Awhile back Joe and I were shopping at a local craft store when an elderly lady in an electric cart drove into a display case sending its contents rolling down the aisle.  I stopped and helped pick things up for her and stayed while she struggled to compose herself.  I remember feeling good as Joe and I left the store.  Could it be that doing a kindness for others (not just for the loved one you routinely care for) helps you stay balanced overall?  Maybe it’s like pouring a fuel additive into your gas tank, it keeps your engine running better, especially if you’re a high mileage engine, like me.

At any rate, I plan to keep going to the support group meetings and will just see how things develop.  It was a good start.

Having Natalie here also got Joe and I out of the house and doing things we might not have tackled without help, like going to the Phoenix Art Museum, which Joe very much enjoyed.   (We almost had to pry him away from the Michelangelo exhibit.)  Having a wheel chair has made a big difference and greatly expands our range, so to speak.  Now when Joe’s unable to walk we can still keep going.

I know there will always be stress in caring for someone who isn’t as psychologically present as they once were and there will be many times that Al will try to tackle us, knock us down and take our lunch money.  But we’ll just get back up, dust off, and be on our way trying our best to have “joy along the journey”. One thing I know for sure, life is better spent with laughter than tears.

“Hi, and welcome to Alzheimer’s Club.  The first rule of Alzheimer’s club is…….Oh Hi. Welcome to Alzheimer’s Club….”