Sunday, October 6, 2013

Mourning the Living

The college search my daughter Riley is going through is stressful, but one great part of the search is the 10-12 hours I spent in the car with Riley a few weeks ago when  we drove from New Jersey to Boston, stayed the night just outside the city, toured Boston College and Brandeis University and drove back to New Jersey.  We listened to 10 hours of her music (and I recognized three songs), talked about school, college, friends and many other things.  Among the many things we talked about was Marcia.  A year ago, any kind of discussion about Marcia with Riley was unthinkable.  She would get very emotional any time I would bring up anything about Marcia’s illness.  It took me almost a year to be able to talk about Marcia with anyone without struggling with my own emotions.  Since we didn’t share a lot with the kids until we had a diagnosis, I started the “mourning process” about a year or so before Riley did.  I really understood why she had such a hard time talking to anyone about our situation, because it was hard for me too.  With Alzheimer’s, it seems the diagnosis is where the mourning process starts, at least for us anyway. 

Three things Riley shared with me:

1)      Remembering Marcia before Alzheimer’s is increasingly more difficult

2)      She once prayed Marcia would be around for her 18th birthday.  She has accepted that Marcia won’t be in her life like the mothers of her friends will, and she doesn’t want to see her go through a long progression of the disease

3)      She wants to get tested to see if she has a genetic possibility of getting AD.  If she has the gene, she isn’t sure she would want to have kids.     

Riley and Marcia have always been especially close, which isn’t unique for many mother/daughter relationships.  As a child, Riley was so attached to Marcia.  I was such a distant second priority. As an example, every year Marcia and I would go away for a long weekend and my parents would come in and stay with the kids.  Riley would cry the ENTIRE time she was awake.  So one year we started preparing her weeks before we were to go away and Riley said she would try to be strong.  Well the night before we were to leave, Riley started to get a little upset so I went to her room to talk to her.  I told her that I go away for work all the time and I always come back.  Riley replied “I want YOU to go.  I don’t want mom to go”.  There have been other humbling moments for me over the years and I accepted my role as second favorite parent!   They did so much together and talked about everything.  One could just tell that this was going to be a close relationship for a lifetime.


Riley had just turned 15 when Marcia was diagnosed, and was about 13 when we first noticed changes in Marcia.  As close as they had been, those days are harder to recall.  I have often wondered if Ryan would remember much about Marcia before she showed symptoms of AD since he was only 8 when this whole thing began.  I just never thought Riley would have that difficulty.  But the truth is, I’ve been married to Marcia for 20 years and have known her for another 3 years before we married.  But her condition, which continues to progress, seems normal now.  It’s not that I don’t remember the healthy, vibrant Marcia.  It’s just that I’ve adjusted to today’s reality.  Her voice is still on the answering machine, and it amazes me to hear her speak so clearly and in complete sentences and with such spunk, something she just can’t do anymore.  But for Marcia’s kids to be losing what I believe are such treasured memories highlights one more thing I need to do a better job of doing.  I need to find time and a way to bring those memories back and keep them alive.


When Marcia first told the kids she had Alzheimer’s, Riley told me that after researching the disease on her own, she was just hoping Marcia would be around for her 18th birthday.  Well, Riley will be 18 in November and Marcia will be here for that.  Riley knows Marcia will miss many milestones, and she’s accepted that and is as prepared as one could be to lose a parent.  Another very good friend of Marcia’s recently told me she feels like she’s mourning the loss of Marcia again because when they are together, Marcia really can’t talk.  I know in my case, and I believe in Riley’s and our friend’s case, the sadness one might experience upon a death of someone you love is when the loss occurs.  We have grieved the loss of the Marcia we knew a few years ago and it’s so hard to see someone you love deteriorate to where even simple tasks are hard, and we know things will only get harder.  There is still a lot about Marcia to love.  She is so sweet still.  She tries so hard to do everything she does.  And I admire her fight and courage, and I just hope Riley and Ryan will recognize these things too as they get older.  Marcia has been an amazing role model every day she’s with us. 


Riley wanting to get tested is something I’m sure many family members struggle with.  That she would research Alzheimer’s and would give thought to the long term implications for her is not surprising.  Riley doesn’t want to put her kids through what she’s going through, and I believe she wouldn’t want to pass along a gene that might subject her kids to getting the disease.  This is STILL the reason I have a passion for fund raising to find a cure for Alzheimer’s.  The impact to my kids and their generation is the reason I want to make sure a cure is found in their lifetime.  I’m not sure about the testing idea, and plan to ask our neurologist at our next visit in January.


I think we have learned to live with the reality that Marcia’s illness continues to progress and there’s nothing we can do to stop it.  If you are reading this because you have a loved one that is recently diagnosed, this blog doesn’t say anything you won’t read on your own from any other source.  Enjoy every moment you can, one day at a time.  Three years after Marcia’s diagnosis, there is still a lot to love about her.  It’s just that the woman I married is not able to do the things she used to do, as hard as she might try.  I think the whole process of getting a diagnosis, which took close to 2 years, and the stunning diagnosis for someone so young, puts us in a funk usually accompanied by death, even though there is many years of life left.  I can’t speak intelligently about the mourning process other situations bring.  But I do know that I went through a mourning process with Marcia already.  I was devastated, distracted, sad, and emotional.  I needed space, and I needed to talk about this.  I remember writing that someday I would be a single father.  And I have been there for quite some time now.  I’m just taking care of Marcia too.

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