While caring for my wife during the last 4 years of her life (she suffered from Primary Progressive Aphasia) I wrote the pieces in this blog to help me sort out what I was thinking and feeling and as a way to reduce stress by being objective about facts, sentence structure and story.
I have not written much since she died but someone asked me how different I felt now and my note to this person turned into the following.
Perhaps it is not appropriate to write when I am depressed, but that depression is a real thing and it is what I want to write about.
Jackie never went through a really difficult stage, especially compared to others I’ve read about and so I believe I had it relatively easy as a care giver.
While I was taking care of Jackie, I didn’t think too much about the real issues of the future, just entertained the vague idea that I wanted to have a try at a new life.
I wanted to live and not just exist.
While I was a care giver, I had a role that kept me going. I could care for her and not think about tomorrow. No matter how silly it seems, I could even fantasize that something miraculous would happen and she would recover. I went on mindlessly from day to day, the disease making all the big decisions and me handling the rest.
About a year prior to Jackie’s death, I was lucky enough to find a wonderful person to help me. She had great experience and was better at every aspect of care than I was and eventually took over virtually all of the difficult tasks with Jackie. I became her helper whenever she needed it, doing all the shopping, some of the cooking and whatever else a household needs. Best of all, my time with Jackie could be low-key and comforting – to both of us. As Jackie’s disease got worse, between the care giver and her mother, Jackie was cared for every waking moment, seven days a week.
As expected, because Jackie had always been a fragile patient, she declined quickly, went into in-home hospice and then, two months after entering hospice and just four years after diagnosis, she died. She died, as she lived, quietly and gracefully.
For the first few hours after her death, all I felt was relief, relief that she wouldn’t get worse, that she would never really suffer, that the disease had left our love intact.
And then I went into a haze.
For about two weeks I got up, worked on the house, walked around quiet and numb. When I asked her care givers to advise me about a memorial reception, because I was incapable of figuring out what and how, they told me to go rest and they arranged everything.
The days after the reception, I went about things on autopilot, seemingly all right, but in reality just numb. I still slept on my side of the bed and tried to keep the house going the way that Jackie would have. As my consciousness gradually surfaced through the haze, it seemed clear to me that I must move for several reasons.
Jackie and I had lived here in this house for 32 years – most of our married life – and everything, every single inch of the house and its contents reminded me of her. If I was to actually live, I needed to have some relief from the constant reminders- both good and the bad.
The prior four years had been a struggle to put aside how relatives and friends had forgotten Jackie – and me. I needed to leave that anger behind completely.
The house was much too big for me alone and the struggle to empty it would only loom larger the longer I stayed and put it off.
We lived in a town crafted for families and couples and young single people. I needed a place with more, more to see, more to do, activities that would be distractions, if not actually enjoyable.
Yes, I know that conventional practice is to wait a year before making any big decisions; yeah, so what.
A year might be a substantial part of the rest of my life and I needed to do something and not just stay in place and slide deeper into depression.
A move meant leaving my only two good friends behind – and that hurt – but I couldn’t make a new life here.
So I spent 6 weeks getting the house ready.
I couldn’t bear to sell anything so I gave away the entire contents of my home until everything I own now fits in my minivan.
When I am not traveling, I am living with my daughter and son-in-law and will eventually take an apartment in Hudson, NY until the spring when I will move into Manhattan.
That is what I am doing, how I feel is something completely different.
Everything I do is meant to be a distraction. Nothing is really enjoyable and I am incredibly lonely. But not lonely for just any companionship, I miss my wife.
Her death took away, not only her presence in my life, but the last responsibility I had. I was taking care of her, the most important thing I have ever done and when she died, I was left with nothing.
So now I am free, with no responsibilities and can do whatever I want except be with her which is what I want the most.
The days are filled with distraction and thus are tolerable but the nights are terrible.
I am seeing a grief therapist and she tells me that everything I feel is normal.
I have tried to live these last four years by holding onto the Four Noble Truths of Buddhism; these say essentially that life is suffering, that we suffer because of our attachments and expectations and the only way to relieve the suffering is to let go of these attachments and expectations.
These ideas were helpful to get through the day to day struggle with the disease and an ill wife.
Now all I have is the loss and the pain and I don’t know how to do anything but hold onto it.