George and I were both introverted only children. We met at a pool party at his parent’s house when he was 11 and I was 7. Our parents worked together as scientists so we’d meet up over the years until I invited him to my senior prom.
We were together for 32 years until he died on April 10, 2013 at age 53.
George had always taken care of everything — doing the cooking, paying the bills, deciding what we should do for fun and driving us there to do it.
When he was diagnosed with metastasized male breast cancer in 2009, he chose to handle his treatment on his own. He drove himself to and from chemotherapy. He stopped off on his way to work to get his chest zapped with radiation before continuing on with his hour-plus commute.
He would not let me come to the hospital with him. He directed his doctors not to talk to me. He said that he didn’t like the way his doctors communicated because they were “gloom and doom types." He promised me that he’d always tell me the truth, but that the information would come only from him. I thought he was the most considerate cancer patient in the world.
I think he saw himself as a warrior. William Wallace riding into battle alone against the cancer, defying the oncologist who had predicted his doom. Keeping me safely away untouched like a princess in his castle.
Or maybe he was just George Hansen, software developer of almost unlimited bandwidth, taking on one more assignment.
His system worked for about four years while he was still in good shape. He was a mega-talented designer of furniture and electronics as well as software; he managed to design me out of his medical treatment.
But toward the latter half of 2012, his body started to fail. He was losing the ability to walk, moving from a cane, which I had to beg him to use, to a walker and finally to a wheelchair.
By December 2013, he could no longer manipulate the wheels of the chair on his own. He’d push a little, then I’d take over. I was afraid whenever I left the house that he’d hurt himself. But he refused to get outside help. I had to call 911 a few times when he fell trying to move from the bed to the chair.
George was in denial about his condition. He swore to me that he was getting better, even though his body was failing. This was what he truly believed, even as he became emaciated, the bones starting to show through the flesh in his back. I showed him pictures of his wounds on my cell phone, but he still insisted he was fine. His brilliant mind had somehow tricked itself into thinking he was recovering.
When I asked his oncologist, butting into the end of a phone call to George, why we couldn’t get George into the hospital’s rehabilitation facility, the doctor said physical rehabilitation therapy was limited to people who were expected to recover.
I started to go crazy. I was isolated. George was telling me what he thought was the truth, but he was so obviously wrong. And I didn’t know what to do, except to take care of him as best I could. He wouldn't let me speak with his doctors and he'd directed them not to talk to me.
Had I known that my limited care wouldn’t make a difference, that he was living out his final months as he chose, working on his computer code and his stereo system, still eating dinner with me every night, even though his meal had been reduced to a few Triscuits with Underwood Chicken Spread—that these were in fact his last days—I would have been OK.
I would have known that I was doing the right thing by him. That I wasn’t being negligent or risking his life. That however bad things became, they’d be over soon.
I wouldn’t have yelled at him. Or ranted that he needed to be in the hospital. Or screamed that I needed more help to care for his deteriorating body. Or whined that I needed sleep because I had to deal with his nebulizer and other devices during the night.
But I did those things, bearing my responsibilities angrily and gracelessly, tripping over the long cables from his oxygen tanks that snaked through our house.
Finally, one Sunday morning he was obviously addled, rambling in a way that made no sense. He’d been coherent up until that point. His condition was so poor and I didn’t know how to fix it. Against his wishes, as he begged me not to call, I dialed 911 to take him to the hospital.
He died in the hospital three days later on April 10th, 2013, still believing he would get better and come home. My last words to him were my agreeing to his prior wishes to return home after he’d recovered a bit. My next to last words were “What’s your fucking Wells Fargo password?”
Two-and-a-half years later, I still get insomnia. And occasional anxiety attacks.
I’ve seen a couple of grief therapists. I’ve talked to friends, gotten a medicinal marijuana card for anxiety, tried drinking, and later tried not drinking.
I’ve remodeled my bathroom and redecorated my bedroom. I‘ve rewarded myself with designer handbags (Chanel, but it was my 50th birthday) and punished myself with daily two-hour power walks. I have dated. I have socialized, hanging out with a car club, a synagogue sisterhood, the Rotary Club, fellow yogis and Meetup.com groups. I have written and joined writers’ groups.
And I still feel mired in shame and regret. I look fine, but what if people saw the real me, the angry, uncontrolled me I’d been when George was dying?
I’ve read a lot about caregiver’s guilt and burnout, but thought, “This doesn’t really apply to me. George wasn’t sick for that long. For most of the time, he was fine.” Or, I’ve distinguished my story from another person’s story because “This caregiver didn’t yell at the person they were taking care of the way I did.”
I’ve sympathized with others, but felt apart from them, because ”This caregiver’s charge acted like a jerk, but George was so considerate, trying so hard not to be a problem.”
My burden following my husband’s death was knowing that I was a terrible caregiver and a bad person.
Now that George is gone, I don’t know how I want to reorganize my uneventful suburban life, or even if I want to change things very much. But I can’t live a life subsumed by regret and guilt, reliving the past because I can’t forgive myself.
I‘ve read enough to know that many caregivers feel guilt over our anger and perceived failures at not having tended well enough to our charges whom we loved and meant to do better by.
I need to let it go, to let my wounds heal, to stop reopening them. But my wounds cannot heal if they are buried in shame.
If you are or were a caregiver and you feel like you fucked up, it’s OK. We were thrust into impossible situations. It wasn’t our faults. We did the best we could even though later, upon reflection, it doesn’t feel that way.
I have a friend who feels the presence of spirits. He once sensed George’s ghost in our home office. He felt George’s presence again on March 23, 2014 next to the stereo system which had been his passion. We figured out that he had last spoken with George on March 23rd the year before.
He said George was stopping by to let me know he was OK, that he knew that I loved him.
Unlike my friend, I have never felt the presence of spirits. I didn’t feel like I was with a specific entity, but I did feel a patch of cold, charged, dense air surrounding me. It was like being surrounded by a bit of live fog. Then it faded away.
I know that George is at peace. And I need to be at peace now too.