"Being With Grief"

According to the book Caring for a Loved One with Dementia by Marguerite Manteau-Rao LCSW (2016) there are three types of grief present in dementia care:  ambiguous loss and disenfranchised grief, anticipatory grief, and loss of the old life. 

When the outside world sees that the cared-for person is still alive it may not recognize that the carer is grieving.  The outside world may not see the many losses that have removed the known individual and replaced them with the unknown.  The opacity of the losses contributes to the disenfranchisement of the grief, especially if the dementia is a long, long good-bye and people stop having either empathy or sympathy and tire of hearing about the carer's sorrow.

Anticipatory grief is the knowledge that the final death and loss of the loved one is approaching.

And as the loved one changes the old shared life and the hoped for and expected future disappears.  Manteau-Rao writes of this grief, "Dementia invites you to let go of your old life and to make room for a reality you did not ask for.  This is hard, and demands that you grieve for every bit of your life before the illness.  There is a method to this type of grief, starting with the listing of all your losses."

And that's part of what this blog will be about:  listing all our losses.  I don't intend for my work here to be a book report, though as a retired academic, I will of course be referring to texts.

One of the biggest losses for us has been the inability to travel together.  The last big trip we took was to Seattle in spring, 2018.  We went to see a couple of old friends Will used to teach with.  They used to be good friends, though, in spite of assurance that they would come visit us sometime they haven't done so.  But then they are a bit scattered as a couple.  The trip in the car of 6 hours was hard on him.  I asked if he wanted to stretch out in the back but he didn't -- he stayed on the front seat.

When we were there, he napped a lot.  He no longer has the energy to walk around and I spent time wandering by myself.  On the plus side, I decided that we would stay in an excellent hotel -- the Four Seasons.  In the past when we have traveled we have done so in the cheapest way possible and one of my gifts to myself is choosing pricey places.

Why has travel been so important to us?  It's not just that we live in an outdoors "vacation paradise" while preferring the urban pleasures of opera and art museums.  It's also because we decided in the twentieth year of our long relationship that we are at our best together during travel.  Why?  Because we each had clear roles to play:  I would map out travel and accommodations and make all the practical arrangements, he would do each day's tour planning -- museums and tourist spots -- and then I would figure out how to get us from one place to another.  We worked so well together! 

Early in our marriage travel was sometimes scary to me because he always had problems dealing with people in situations of stress and would revert to yelling.  I didn't like to be around raised voices.  But once I took over dealing with planes, trains, and automobiles and the people working them, travel became a pleasure, especially European travel.  We had some terrific trips abroad.

We actually started planning a trip to Amsterdam in 2015.  I kept asking him about it and he kept putting me off - "We'll talk about it later." 

Eventually we chose to go to Philadelphia and New York City that spring.  (We'd been going to New York during my spring break since 2002). It was our last flying trip together.  He had gut issues on the flights and walking in the cities.  The day we went to the art museum in Philly I noticed he started leaning to the side like a question mark.  He didn't notice it.  I asked if he was okay and he angrily said, "Yes!"

You need to understand that I have never "forced" an issue with him.  He's always had full autonomy in our relationship -- his decisions about his "own" life were sacrosanct.  I was never the kind of wife who manipulated my partner into doing things he didn't want to do.  We were both free agents -- friends who lived together in love.  He remained in his odd position on the walk back to the hotel.

When we got to the hotel he got into bed.  I asked again if he wanted a doctor and he said "no," that he wanted to sleep.  As he napped I googled "leaning to the side" and found a few diagnoses, including inner ear infection and stroke.  Then I sat with a very difficult decision:  did I call for an ambulance?  Did I send him to a hospital in a strange city?  Or did I let whatever was happening play out?

Because he has always hated hospitals and disliked most doctors I went conservative and waited, telling myself that if he woke up with a drooping face or showed any other signs of stroke I'd make the call.  But when he woke up he was "fine." 

I believe I did the right thing, sparing him the terrible stress of being panicked in a strange place with strange people.  I could not stop respecting him just because he was changing.

Another awful thing happened during that trip but that's a story for another time.