Monday, April 2, 2018

Epilogue – Life after Alzheimer’s



I indicated that I would write one more blog entry in my last post, which I published almost 3 years ago.  The purpose of this blog from the beginning was:  1) to have a place for family and friends to go to keep abreast of our Alzheimer’s journey, and 2) to provide a perspective to others who want information on Early Onset Alzheimer’s from a caregiver’s point of view.  As for family and friends, since Marcia passed away there’s no reason to go to this blog anymore.  I suspect most of the 45,000 hits came from family and friends.  But I imagine nearly all of those who have visited and read this blog since Marcia passed away fall into the second camp.  The sad reality is that every day more people are diagnosed with Early Onset Alzheimer’s and it is my hope that this blog has and will provide some assistance to others who enter this unwelcome club.  

A third purpose for writing emerged over time. I found great value, if not enough time, in putting thoughts and experiences in writing.  Blogging was a cathartic release of sadness, shock, frustration and gratitude.  Writing was a way to document the nastiness and cruelty of Alzheimer’s disease, my admiration for Marcia and the truly inspiring way she dealt with a dignity robbing, life taking disease, a recognition of the strength of our kids and the unspeakable selflessness of my family, friends and acquaintances near and far.

I’m writing now to put some closure to our family’s journey and to communicate to anyone who might read this post that there (is, can and should be) life after Alzheimer’s.  While Marcia was sick, my caregiving role was to take care of her and protect her dignity as best I could.  It was exhausting trying to balance caregiving with working and parenting, yet we managed to get through it with few regrets.  I find my role today to make sure Marcia’s life and memory lives on, especially with our kids, while trying as best I can to shepherd our lives into a future of meaningful purpose, optimism, and happiness.  For me and my kids, our lives have not stagnated since losing Marcia.  I dislike the term “moving on”, but life around us certainly has and we’ve had no choice but to adjust to a new life.  We have accepted the reality that Alzheimer’s took Marcia from us and time doesn’t stand still.  The fact is, we are no longer caregiving and coping with all the stresses associated with that.  Our kids have their whole lives in front of them and they are taking steps to prepare for adulthood, and I hope to have 30 or so years ahead of me too.  And wallowing in sorrow without doing meaningful things with our lives would not only be a waste but would be putting the brakes on what Marcia was helping us do while she was here.

We are approaching the third anniversary of Marcia’s death, perhaps a long overdue time to write about how our children are doing and how I am doing.  We have lived through many “anniversaries” over the last three years:  her last day in our house (3/11), the day we placed her in a long-term care facility (3/16), the day we decided to put her in hospice care (3/29) and the day she passed away (4/7).  While these are dates I don’t want to forget, with the passage of time the good memories seem to take center stage and the more difficult times seem to fade. 

So how are we doing now?  In the nearly three years since Marcia passed away, I’ve lost my job and retired for a year, unretired to work with a friend and former boss as a consultant, (re)met a wonderful woman and got married!  I’ve seen my former life (work, marriage and social life) completely turn over.  The only constant is my kids, and they aren’t really kids any more, having the audacity to grow up.

I worked for a company where the people were amazingly supportive and compassionate.  While I was “let go” during a major reorganization (before Marcia passed away), I was kept around to help out with an integration and reach “retirement age”.  My gratitude for my former employer and those that helped keep me around is off the charts.  Work, and the people I worked with were one part of my life that helped me survive the devastation of Alzheimer’s Disease.

The social life Marcia and I shared has mostly dried up and disappeared and a new, different one is emerging.  This is not meant to be an indictment on anyone but me.  I found that my social life was really Marcia’s.  Our friends were more my “friends-in-laws”.  Wonderful people that I loved and still love dearly.  It just seems life moved on and I didn’t do enough to keep that old life alive.  This was not a conscious decision on my part as I’m not entirely sure if I had to move on, or if my new life just nudged me in that direction.  I still see this community often and enjoy every moment.  It’s more that life has taken me and those we used to socialize with in different directions based on our current events and activities.

As Alzheimer’s progressed, I found myself in the role of a single parent even before Marcia passed away and my inadequacies (real and perceived) were more noticeable.  Marcia was just better at some things than I was/am.  Whether I’ve been hard on myself as a parent or not, I’ve felt my kids have been short changed by not having two parents to draw from.  Nothing in my life has made me feel quite so inadequate given the responsibility of being a parent.  When Marcia was first diagnosed, her biggest concern around her diagnosis was not her fate, but not being there for our kids.  And they’ve lived the disadvantaged life of a one parent household during such important times in their development and formative years.  My parenting and my kids’ growing up has been a source of many sleepless nights for me!

Finally, there’s Karen, my new wife and longtime friend!  Karen and I have known each other since 1979 when we were college freshman.  We met as a result of her friendship with a girl I went to high school with.  Karen was always a special friend, though we never dated, and we maintained contact throughout the years, mostly via Christmas cards and birthday acknowledgements.  I started dating Karen several months after Marcia passed away and we married last August.  Karen lived outside of Philadelphia, where my daughter goes to college and we met for lunch one day after I dropped her off at school.  Was this a date?  It was “just” lunch, but it almost turned into dinner too.  Then we met in New Hope, PA for dinner a week or so later.  And we found ourselves meeting weekly in New Hope, here in New Jersey or close to Karen’s home in PA.  Was I ready to date?  I wasn’t even close to jumping into the dating pool.  My priorities were very much tied to my kids in the aftermath of Marcia’s death.  But sometimes things happen that aren’t planned.  I hadn’t had much adult company in the months leading up to this day and I not only enjoyed having something to do but enjoyed having someone to talk to.  The ease of talking to Karen that day was special and just like it was in college.   

Karen had been following this blog and was well aware of Marcia’s illness.  She was sensitive to what I’d been through and what I needed to go through, and what I needed to do for my kids.  While I don’t know this for sure, I truly believe Karen saved me.  She was always easy for me (an introvert) to talk to and our relationship was just so natural.  But she came back into my life when I found myself outside looking in on the social circles of the town I had lived in for 21 years.  Spending time with Karen was something I looked forward to and kept me from the life of isolation I almost seemed to seek.  We spent most of our time together relatively close to my home, which made it easier for me to be around when my son needed me to be home, one of many sacrifices Karen made to make getting together possible.

Karen and my kids had an instant connection and she’s been a phenomenal presence in my kids’ lives.  She’s made great sacrifices to be with ME.  She’s moved from Pennsylania to NJ, uprooting her life (and those of her two dogs), has a very long commute for work and is living in the same house Marcia and I shared for 21 years.  She’s been very understanding of the need to keep life as normal as possible for my son and her sacrifices don’t go unnoticed.  Karen has made an unreasonable need of mine, acceptable.  But more than anything else, she has shown me love and happiness I wasn’t sure I’d find again.  I’m grateful to her and for her and she has given me hope and is the one I’m excited to share my future with.  We look forward to moving in a year or so to a place where we can build “our life” together.

My kids are doing very well.  My daughter has had two impressive co-op job experiences and is just starting her third while getting close to her undergraduate degree in Physics with a minor in math.  She’s certified to teach some of the same fitness classes Marcia used to teach and impressed me every day with her maturity and accomplishments. 

My son is one semester away from high school graduation and has a pretty nice selection of colleges to choose from for the fall, is playing lacrosse, has worked part time and has a really good group of friends that have been there for him through Marcia’s illness and her passing.  Both have weathered a storm no kid should have to experience without any big detours.  I’m not sure they have grieved as they might eventually grieve.  Are the difficulties they have faced or are facing just normal teenage/early 20’s issues, or are they magnified by losing their mom, watching her brain become infantile and her body fail?  It’s hard to say, and it’s probably why I worry as much as I do.  They have struggled at various times, yet their strength is evident and they are a constant source of inspiration and pride for me.  They are becoming adults, they laugh and enjoy life and are planning for their futures.  Both are “normal” kids in different stages of life without Marcia.  It’s still very hard for my son to talk about his mom, and I suspect and hope this will change over time.  My daughter does a lot to honor Marcia and to support our fight to end Alzheimer’s in their lifetime. 

We have found a new normal, and it’s better and worse than the old one.  And for the length of this post, one might assume I’ve got things all figured out.  Not even close!  I believe figuring things out is a lifelong pursuit and new lessons and thoughts come about all the time.  But I have resolved to make the most of my life, while treasuring the wonderful memories of my past that have shaped me into the person I am.  I have committed time and resources to fight Alzheimer’s Disease and find a cure in my lifetime to honor Marcia and to be a part of a solution that will hopefully impact millions of people.  While I don’t know if this is my “purpose”, I do know it’s a passion that won’t fade until a cure is found.  I know there is so much of life to experience, and I hope to do so seeing the positives of life, while minimizing the ugly, unpleasant world around us.  I accept that I am still a little lost in who I am and what I should be, but I’m happy and grateful I have two amazing kids, a supportive family and friends and a wonderful wife (and her family) to explore an optimistic future.

I don’t intend to write anything more here.  For those that come to a site like this to learn about Early Onset Alzheimer’s, I hope this is helpful.  If you come here to learn how to take the pain away from a life with Alzheimer’s, I wish I had some magic words that could solve the problems you are facing, but the only magic words, “see your doctor for your path to a cure” don’t yet exist.  However, I believe that the Alzheimer’s journey doesn’t mean the end for everyone affected.  Someday there will be a cure, or at the very least a treatment.  But one can find happiness again.  I know I have!

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