Taking a break/Feeling blessed

By taking a break, I’m referring to my time away from blogging.  Not only has there not been any real break from the rest of my life, the pace of everything has escalated over the last six months or so.  There’s so much I could write about Marcia’s progression, and I will cover this in future blogs.  Beyond Alzheimer’s, the last couple of months have been unusually busy.  I just haven’t taken the time to write.  And while I haven’t lost the desire, I haven’t had the drive to do so. 

 

Since I last wrote here, our son graduated middle school and a week later, our daughter graduated high school.  Two really awesome milestones that also meant we are now moving on to high school and…. college!  Honestly, I think middle school graduation has been the surprise emotion for me.  With all the college search, application and preparation, we’ve been thinking about college for a several years.  But in a blink of an eye, we were done with middle school.  Forever!  I just don’t think I was totally prepared for this.

 

Work has been unexpectedly busy as my company doubled in size via acquisition and I have been fortunate enough to work on part of the transition in addition to my normal responsibilities.  Outside of work, summer camps and jobs, travel soccer and high school tryouts, freshman orientation at Drexel University, my own summer soccer league, a few much needed trips to Drexel to visit Riley, cooking and shopping (seriously!), not to mention everything going on with Marcia have kept me busier than I can realistically manage.  While Marcia went to Maine with her sister for several days, we really did not have a summer vacation.  I took a few days off to interview home health companies in hopes of getting the right person to stay with Marcia to supplement her time at the Day Center.  Several other days, or partial days, I took off for doctor’s appointments, to pick up Marcia from the Day Center, or just catch up on my “to do” list around the house.  I did take a few days to go to the beach with my son, my only fun/relaxing vacation all year. 

The tribulations associated with Alzheimer’s are significant and have given me more angst, stress and some days, despair than I ever thought I’d have to handle. Yet I feel blessed.  That is not to say my life is one to be envied.  I can’t imagine anyone wanting to trade places with me today.  But I am blessed because our situation is not nearly as bad as others.  I’ve done most of my writing over the last six months on Facebook, where I joined an Early Onset Alzheimer’s support group.  Over 2700 members posting questions, venting, offering advice and sharing their stories and frustrations.  It’s a closed FB group that has helped me make decisions, and left me amazed at the devastation Alzheimer’s creates for caregivers.  I feel blessed because as difficult as this has been on me, I’ve encountered people who have lost their homes, cars, life savings, friends, family and jobs.  I’ve heard from people who are on the verge of breakdowns, depression and utter despair.  Many are living paycheck to paycheck and are faced with choices I could not imagine facing.  Do they pay bills or buy food?

 

I’ve read of a guy recently diagnosed with early onset Alzheimer’s who has 5 kids and is only 32 years old.  I’ve heard from a woman who was diagnosed at the age of 27.  I read of a 19 year old college student who is the sole caregiver for her 50 something father.  And more recently, I’ve read about diagnoses in CHILDREN, kids as young as eleven and twelve with childhood versions of Alzheimer’s and won’t likely live to see the age of 20.  People have written about how their friends have abandoned them, while others have family members who are critical of their efforts, yet won’t lift a finger to help.  While my support group size is not as big as it once was, the help I’m getting is still significant and my parents come often to provide help with Marcia, but also around the house (and they live 5 hours away).  They have been awesome!

 

What I’m dealing with has changed the course of my life completely, but others have it much worse than me.  And besides all of this, Marcia is still making this as easy on me as one can.  I’ve read of situations in the FB group where aggressive behavior, anger, denial and stubbornness are what other caregivers face.  Marcia is none of those things.  She still laughs and tries to do as much as she can, in spite of her complete inability to speak, and limited ability to dress, eat and bathe.

 

Make no mistake, Marcia’s Alz diagnosis is devastating to her, to our family and to my future plans as well as my present ego.  Personally, I’m experiencing failure like I’ve never seen in my life.  I’m experiencing caregiving like I never imagined I would be doing.  I have had once a week soccer games as my only escape from constant reminders of what my life will and will not be in the future.  And I miss the social life I once had and all the fun that goes with being able to socialize and enjoy ourselves in the presence of others.  But I am blessed to have had the number of good years with Marcia that I have had.  I’m blessed that Marcia is such a sweet and gentle person whom I admire so much for her courage and perseverance.  I’m blessed to have supportive family and friends.  I’m blessed to have found a Day Center that takes such good care of Marcia. I’m blessed to have worked for a company with people who have been supportive and compassionate.  I am blessed with a decision to buy Long Term Care Insurance before we needed it!!! Without it, I may be selling our house, cars and cashing in my 401k.  And I am blessed with two kids who have shown an amazing amount of strength to deal with so much at such young ages.

 

I am blessed to be in the presence of a few amazing “angels” who have been there when I’ve really needed them and a community/friends/family/co-workers that once again showed up in great numbers at the Branchburg Race Against Alzheimer’s and who have opened their hearts/wallets to help raise money to fight Alzheimer’s.  While it’s not quite the ice bucket challenge (those of us in the Alzheimer’s community are jealous of how they have raised money and awareness, but are supportive!!), through the efforts of the Napoli family and countless volunteers, we once again raised more than $50,000 for the Cure Alz fund.

 

There are times every week where I say “my life sucks”.  Sometimes it’s not my life, but it’s me that sucks (more on that in the next post).  But those statements are preceded by bad moments.  There are good ones too, every day, and I have much to be thankful for.  And I know that better days are ahead…..