The Longest of Days

From sun-up to sun-down, the longest day of the year in the northern hemisphere is the summer solstice.  The Alzheimer’s Association has been using this event to raise awareness by asking people to do an activity that day and consider, “could you do this all day, every day?”  This is to represent the endless work of caregivers, especially dealing with dementia, when the days are really 36 hours. For me this year, the Longest Day is also a day of remembering grief.

In 2016, the summer solstice arrives on June 20; eight years after Mom’s diagnosis, three years after she moved into a memory facility, and nine months after she passed away.  My sisters, dad, and I have participated in awareness events for years, and always with the same urgency of others fighting for the survival of their loved ones.  We met several amazing people as they dealt with the disease, though many seemed to fall off the radar when their loved ones passed away.  Even before Mom died, I could understand this.  After dealing with the horrors of the disease for years and then losing to it, who wants to spend more time around people facing this same situation?  Is it easier to try to find a new “normal” where you can grieve the person you lost without them being defined by the disease?  The last few years of her life, Mom seemed to have a scarlet “A” on her chest, through which she (and we) was defined and her life dictated.  Her funeral felt almost liberating, as we could finally celebrate her life, and “Alzheimer’s” was hardly mentioned. 

But, really, why is it that her funeral felt that way?  I felt guilty that her death brought a sense of relief. Why? Of course I would have done anything to spend more time with her, but it is selfish to think that putting her through another day of intense pain and humiliation that she felt in the later years would have been a good idea.

An overly-simplified description of this experience is like walking knee-deep in mud.  Everything is a constant struggle as you wade around.  The person you are with is slowly sinking, and despite your tireless and desperate efforts to hold them up, you know that they are drowning.  You do your best to hold onto them for years, and then they disappear and the mud disappears.  Suddenly, your legs are liberated but your muscles have phantom pains from this experience.  You are relieved that you have this freedom and also heartbroken by what the mud has claimed.

Before McKenzie moved home as her full-time caregiver, I spent hours at work soaked in worry that Mom was scared out of her mind because she was wandering around town or inadvertently burning down the house or bleeding out from an unforeseen accident.   

I have vivid memories of Mom wandering around the house at all hours of the night because her body did not know night from day.  Finally, I put her in the guest room with me during visits so Dad could have at least one or two full nights of sleep.  I’d help her get ready in the bathroom and changed into day clothes when she refused to go back to sleep at 5 am.  Then we’d sit at the kitchen table with her Poptart until Dad was ready to go to work and I could leave for my own job or spend the day with her (and later McKenzie).  We all took turns helping Mom in the bathroom throughout the day, and for a few years I coached her through getting ready for bed, as did my sisters and Dad on a rotating schedule.  Every morning and every evening was about the same, and I remember complaining to myself while waiting for Mom to stop getting sidetracked by the woman in the mirror and do her business, that life was unfair.  If I could send a message to my twenty-something-year-old self from that time, I would confirm that yes, life is unfair, but it can always get worse. 

Kind people have shared with me their thoughts and experiences of grief when losing a loved one.  Only through the passing of time have I begun to realize that with this disease in particular, the rules are different.  Part of the cruelty inflicted on family and friends is not just that your loved one will forget you, but your outlet for dealing with loss is not really understood by people who have not faced this situation.  I found myself constantly asking, How do you grieve for someone who is still alive?  As Mom entered the final months and years of her life, she was mostly a different person with shadows and glimpses of her old self showing up once in a while.  Mourning the loss of this version of her was not the same, possibly because I had been working through the stages of grief already.  Some people seem to experience them like a checklist, marking off one at a time until the end.  I think the long goodbye of dementia means that the phases are more fluid—overlapping and repeating as the disease progresses.

For at least two years after Mom was diagnosed, I could not let myself believe that the doctor had the right results.  Even though I participated with my family to make plans and treat Mom, denial was forefront in my thought processes. 

In general, I was angry about Mom’s diagnosis and our situation all the time, but that did not manifest into anything until a year after she moved into the memory unit.  That spring and summer we prepared for Sara’s wedding, and Mom could not participate in any “mother of the bride” activities.  In fact, we doubt that she really even knew what was going on outside the walls of the facility.  And we all commented on how Mom would have loved to do these things.  When I thought about this, I could barely contain my rage that this untouchable disease could take these experiences from her and my sister.  When I visited the house, sometimes the smallest disagreement with my dad would set my blood boiling in seconds, and I sought refuge in the laundry room to punch the laundry baskets and hit my knuckles together until they were red and sore.  This anger, this vitriol, was like nothing I had experienced before, and it just overtook me.  When the summer cooled into autumn, so did this anger.

Dad seemed very drawn in by bargaining. “If I’d only taken your mother in to see the doctor sooner, she might have been better off” he’d lament, even over the assurances by my sisters and me that it would not really have made a difference.  He still says it sometimes, as if guilt is gnawing at his soul.  No one saw this diagnosis coming, so how can he blame himself for not watching for it in the first place?

Depression feels like a skewer holding all of these experiences together. It threads through everything—sometimes pronounced, sometimes silently running in the background as the disease unfolds.  From Mom’s diagnosis to about a year ago, I cried every day.  Mom was constantly changing, so I always had multiple versions of her to grieve and be reminded again and again of what she could no longer do or experience.  The last nine months of her life, her body clearly could not keep functioning with the disease.  She suffered debilitating seizures, lost her ability to walk and eat most solid foods, and her body shriveled up.  To plead with God to keep her in this state just because I had trouble saying goodbye seemed cruel, though I prayed every day that she would live long enough to be cured.  This is when I only cried every-other day.

And now “acceptance” is on the horizon; another “A” word.  Though I know Mom passed away, there are days I do not really accept that she is gone.  The pang of hurt is less severe now than when Mom was confined to the memory unit.  It’s as if I am more okay with things because I know that she is dead but her spirit is alive.

So, after already dealing with the barrage of physically- and emotionally-draining experiences over the course of several years, I can understand why people would want to distance themselves from things that remind them of this period in their lives.  I am also glad for the reprieve, but the process still feels incomplete.

Though I can accept that Mom lost her life, I do not have to accept that nothing more can be done. Mom’s life should not be defined by the disease that ended it, but to ignore her last years only heightens Alzheimer’s cruelty. Since experiences with long goodbyes (dementia in particular) are more of an ongoing kind of grief, I’d like to put forth another stage at the end: Action. 

As the sun rises on the Longest Day and people ask, “Could you do this all day, every day?” I know my answer.  And I will say, let’s get moving.