Hospice

I am so grateful Glen had end of life care though our local hospice organization. I started thinking about home care when Glen’s radiation therapy failed to decrease his pain. On February 6, 2009 I wrote:

I find I am increasingly unable to hold all of this together. My insurance will pay for in home care and this is the next thing I will investigate...I realize I cannot do all this by myself.

After Glen is admitted into the hospital due to his increasingly debilitating pain, he begins to consider end of life care. On February 26:

Glen’s goal is to come home...Doctor K talks about hospice...the social worker comes to talk to us about Hospice services available.

The next day, Friday, we meet with the doctor and he advises a hospice release for Glen.

We meet with the social worker and a hospice representative...Glen fills out the DNR directive and signs admission forms for services. A “soft” release from the hospital is arranged...

Glen comes home on Saturday, February 28. A hospice nurse arrives in the afternoon to conduct an intake with Glen. The hospice doctor comes on Monday and identifies the appropriate pain reliever, a nerve block. A hospice nurse visits daily. Glen dies relatively pain free 12 days later. I will always be thankful for this end of life care.

My Valentine

Monday was the second Valentine’s Day without Glen. I remember that final valentine’s day two years ago - Glen was pain free for three days. On 2-14-2009 I wrote:

Valentine day - and small hope flows from my heart...(he) has experienced a good deal of relief from his pain since he got the cortisone shot...I think one of the most frustrating things for him is that he has been unable to do anything because of the pain.

The pain relief was short lived and not due to cortisone shot but the nerve block administered prior to the cortisone. Last year, the first valentine’s day after he died I wrote:

Valentine’s day - (we) used to laugh about this “hallmark holiday”...I suppose we were an unusual couple for our time, so interdependent on one another that I never realized what loneliness I would feel when he was no longer with me.

Last year I tried to focus on our love - hugs, kisses, not just reserved for that one day, but shared every day. This year I received a valentine in the mail. It was from the County of Santa Barbara, vital statistics office. It was a copy of our marriage license. I luxuriated in the memories of our love once again.

Guilt

I think about all of the emotions I experience as I grieve. Some emotions move us out of a stuck place, others keep us stuck. Guilt keeps me stuck. Last year as the first anniversary of Glen’s death approached I was unable to get unstuck. On January 24, 2010 I wrote:

My heart aches when I think about how much he suffered. He spent a lot of his day alone with just the television to erase the silence of an empty house.

I felt guilty about leaving him alone. This guilt continued as I tried to find a way to move out of my grief. On February 7, 2010 I wrote:

At one point I told Glen I needed a little space, and I would sit in my chair in a corner of the living room behind him...He would forget...and interrupt me. I now realize it was because he was alone, in his own space so much of the time that he couldn’t bear to be alone when I was home...

I felt guilty about my inability to recognize his need for me to be present as the debilitating pain Glen endured after the cancer metastasized into his spine keeping him isolated. On May 14, 2010 I wrote:

I struggle with feelings of guilt about my failure to recognize how much Glen’s physical pain shaped his behavior - instead I blamed him for not making changes in his life that he could not possibly have made...

Today as life propels me toward the second anniversary of Glen’s death, guilt still keeps me stuck in my grief - even as I try to move forward.

Depression or Sadness?

I am in a phase with my grief where I can’t decide if I’m sad or depressed. It’s that crazy grief again. I cry a lot, feel unmotivated, and can’t stop thinking about my final days with Glen. On March 9, 2009 I wrote:

Elaine left today...a brief visit but one I desperately needed. I gain so much strength from my sisters, even in this “death watch” time when my heart is breaking...

I think about those final days with Glen and the folks who were there to support us during this difficult time. Our friends came to say goodbye.This brought a wonderful smile to Glen’s face in the moments where he is able to join us in this reality. I wrote:

His acknowledgment as they left, “goodbye baby” to the little one who loves him with all of her heart.

People far away call - friends and family alike - people checking in to see how we are doing. Glen’s parents arrive on March 11; we have tried to prepare them but I am unsure if they know how close Glen is to the end of life. I write:

Glen is holding on, sleeping most of the time now, waiting for him mom to come and say goodbye.

And when the end of Glen’s life journey arrives, his brother Mike is on the phone, his parents, his sister, and our two sons sit together around his hospital bed.

Lots of tears but also a time for letting go and guiding him toward the end of his journey in this body and time and space...

This was a time when I felt the support of friends and family. Today, almost 23 months since Glen’s death, I sit alone with my grief. Depression or sadness - I don’t know.