CAREGIVING

November was “Alzheimer’s Awareness Month/National Family Caregivers Month” so it seems timely and appropriate to write something that gives a perspective of caregiving for Marcia, who has mild to moderate Alzheimer’s.  One thing I’ve learned about Alzheimer’s is that there is no blueprint for how the progression will occur and no way to predict how it will unfold, and therefore, no playbook for how to care for someone with Alzheimer’s.  This is one of the great challenges of Alzheimer’s.  How does the health care system train people to care for Alzheimer’s patients when the disease manifests itself in unique ways?  I learned at the September Town Hall meeting from those who have loved ones being cared for by healthcare professionals how inadequate care can be, despite the best of intentions. 
I’ve heard stories about how AD affects memory, leads to wandering, doing the same task twice because the patient doesn’t remember doing it the first time.  But there are conversations to be had and at least these AD sufferer can communicate verbally.  Marcia cannot effectively communicate what she wants, needs or thinks.  And this keeps me up at night, not for the present, but for what’s surely coming.  If she has a medical issue, how will she communicate pain, discomfort or anything else?

                                                 

Marcia’s caregiving network includes 75 people in the “Team Marcia” Lotsa Helping Hands” website.  I don’t know how we could possibly manage without this group!!  For our family, caregiving includes cooking, driving and laying out schedules, and other things that are probably not uncommon for many AD caregivers.  But we spend an inordinate amount of time just trying to understand what Marcia is trying to say and helping her do things she used to do on her own.  We’ve gone from helping her with an occasional word to a guess of what she’s saying all the time.

Caregiving requires a number of specific skills and personal attributes.  Caregiving taps into strengths of mine, brings out latent skills, and highlights many inadequacies:

Two of my strengths are probably patience and an easygoing nature.  These are terms that have been used to describe me at work and it’s accurate to say that few have seen me lose my temper. Of course, no one has seen me in heavy traffic when I’m in a hurry.  But no amount of patience is enough to care for Marcia in the way she deserves.  Even the most easygoing are tested beyond their capabilities.  I only hope Marcia doesn’t see me getting frustrated, and I set a good example for my kids to follow.  Few have seen the frustrations I’ve experienced not being able to understand what Marcia is trying to say, or in finding things that have been misplaced.  While I have personality traits that are absolutely helpful in dealing with our situation, I’m not as patient or easygoing as I need to be. 

Two areas I am capable of, but are stretching me outside what is safe for me at home are organization and multitasking.  Organizing was Marcia’s forte, one thing I gladly ceded to her.  One Saturday earlier this month, my son had basketball practice, a soccer game and a lacrosse tournament.  My daughter had a sectional cross country meet, we went out to practice parallel parking for her driver’s test the following week and bought her IPhone, a birthday present from her grandparents.  Marcia and I made all of these activities but one of Ryan’s lacrosse games.  I also organized four weeks of recycling (thanks hurricane Sandy), had an electrician come over and repair wiring in our garage, laundry room and downstairs bath, went to the bank to get Riley’s birth certificate (driver’s license stuff again).  Also put together Marcia’s schedule for the week ahead and packed for my national sales meeting.  Point here isn’t that we are stupid busy, but that I was able to identify and do.  Forgot MANY things and didn’t get to others, but these were the things we had to get done.  This is not a normal Saturday, just this particular one.  And I felt great about this day and had a great time.  And any time out of the house is great for Marcia.
Where I’m hopelessly inadequate is balancing caregiving, being a father and managing my career.  While I’ve always made family my first priority, the workload involved in taking care of my family has increased dramatically.  In the grand scheme of things, Marcia’s illness has in a way, been a blessing.  While I always had family responsibilities, I also had a job/career that had demands I loved and needed to do.  The fact is that Marcia and I were able to divide and conquer.  We no longer divide.  I LOVE doing all the sports stuff described above and enjoyed the parking practice and phone shopping (I’ve never used “love” and “shopping” in the same sentence before) with Riley.  My relationship with my kids has grown as they now come to me for the things they used to rely on Marcia to handle. 

At work, I just don’t have as much time to focus on work things as I used to.  I’m doing the best I can do while at work, but once home I focus on home.  Sometimes I can do email after everyone has gone to bed, but it’s not an every night activity like it used to be.  While it’s taken about two years to do this, I’ve let go of the frustration about not putting as much time into work as I probably need.  Others can chase their career dreams, I’m just thankful for work.  I’m as content as I CAN be with a career that isn’t what I had hoped.
Finally, caregiving is accentuating another part of my personality, and not for the better.  In the world of Myers Briggs, I’m considered an introvert.  Not shy, but I’ve always found time alone to be where I regain energy.  In the past, early morning workouts, or any workout, is a time for me to decompress doing something I really like.  So far, I’ve been able to keep that regimen.  But I look for more opportunities to do things away from others.  This manifests itself in doing less social things than I used to.  At sporting events I’ve taken to finding a quiet(er) place to take pictures.  I use this time to think, get away from caregiving responsibilities (and talking about them) or to just think about things I need to do now or in the future.

To say that this situation, and the way my life is turning out sucks is an understatement and I’ve found myself saying this too often.  Truth is, it does……sometimes.  Patience and being easygoing have helped me focus on the moment and not the situation.  I’ve become better at prioritizing and letting go of the things I miss, can’t understand, or forget to do altogether.  And I look to laugh and make people laugh.  I’m no comedian, but looking for the humor daily keeps me grounded.  And savoring the time I have with my kids and the good moments with Marcia remind me how lucky I really am.  By no means do I feel like my life is bad.  The cards we’ve been dealt aren’t the ones I would have chosen, but they are the ones I’ve been played.  Everyone has something to complain about, things they take for granted.  My complaints has just changed and made me focus on the things I have been blessed with.  Many of us in this situation talk about “one day at a time”, and that seems to work for me.  Today is a good day….

There are a LOT of tools on the Alzheimer’s website (Alz.org) created to help caregivers cope, and I’ve read through most of them.  I’ve found the advice helpful, especially the one where you have to find time to do things for me.  Easier said than done, but for me, working out and coaching my son’s soccer team are the primary “me” things.  I’ve also played soccer in an over 30 league (though I could really use a “significantly over 30 league”) for the last few years on Thursday nights, something I hope to continue for a few more years.  But I wonder if it’s possible for anyone to actually feel like they are good at caregiving.  The failures just stand out too much.  I suppose I feel like a referee in any sport.  When I’m doing things well, it’s not noticeable.  But when you don’t do something well, it’s the “blown call” that seems like everyone sees.