This is long overdue but I just wasn’t ready to spend any time in this before now. I did a lot of free writing and journaling while things were going on, but I couldn’t write a blog post. No way.

Early in March I got a call from my stepmother that my father had stopped eating and was going in to the hospital. He had been struggling with dementia for several years. He was slowing down- this was the last stage.

What followed  were a tense few days. He was severely dehydrated. If he recovered, we would need to decide whether or not to have a feeding tube inserted. The general wisdom was that it may be a good thing to do as, they said,  all he needed was to be rehydrated and fed and he may still go on to have a few more good years. (What constitutes good years to one person is mind numbing dullness for another. My father spent most days in bed watching movies.) He did enjoy sporadic visits from friends and family, as evidenced by his smiles and the noises he made when people visited. I still wondered, what would be keeping him around for, his benefit, or ours?

After a few days in the hospital he was rehydrated and my stepmother said he was looking better. Someone would have to hand feed him when he went back to his nursing home, and there was the chance he may refuse the feedings. This was when the discussions of feeding tubes came in. If he refused the feedings, the next step would be to make him comfortable, and well, you get the rest…

To make it sound nicer the doctors call if a “peg.” Easy really, just a peg inserted in to the stomach, twenty minutes in the office, then they can hook up a bottle of Ensure whenever they want. Sounds fucking lovely. Picture it, an overworked aid, who may or may not wash his hands after he goes to the bathroom,  comes in every few hours, plugs him in, adjusts dad’s  pillow if he’s lucky, then he’s alone again.

 All I could think of is how my father, who often got scared and confused by unfamiliar people, places, and things, would react to this. Maybe fine, but what road are we steering on to if we go that route? My sister, ever the one to keep her head-reassuringly like my mother in times like this, did some research and found out the ugly truth. Go find out for yourself if you’re curious. In some cases, it may be warranted, say in the case of a twenty year old with his whole life ahead of him, who just needs to get back on his feet after a bout with cancer. In my father’s case the peg would serve to force calories and nutrients into him that his body had decided to reject, risking ghastly infections in the process. What about the natural progression toward a peaceful death? Why do we have more faith in the wisdom of someone else’s mind than in that of our own bodies?

 The doctors argued that this was somehow a different case than most, though how I still didn’t see. End stage dementia is end stage dementia, no matter how much we might not want that to be true. Refusal of food and a general shutting down are part of the natural progression. My father also signed papers that said he did not want to be kept alive by artificial means. The fact that we were still discussing this, and doctors in charge of his care were encouraging it, after learning that they would be going against his wishes, I still find deeply disturbing*.

My stepmother decided that dad would go back to his nursing home without the tube. Thankfully the home he was living in did not take patients who needed feeding tubes and my stepmother, who was doing her best to make the right decision, was not willing to move him to an unfamiliar place to make that happen. This along with the advice of our cousin, a geriatric doctor** convinced my stepmother to set up Hospice and keep him off the peg.

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 I was already scheduled to go stay with my father in three weeks from this time. After almost losing him suddenly, I didn’t want to wait. The timing was horrible. My writing class was wrapping up with a big party in a few weeks and I just started an internship with an agent that I was really excited about. I   didn’t want to lose it because I had to fly off to see my dad when I was already set to see him in a few weeks anyway.  Was the trip really necessary?

After a few hours of back and forth, I decided it was. I called my stepmother and told her I wanted to come out within the next few days. His health had improved, she said. It would be much easier if I just stuck to the schedule. This just felt wrong to me. I have never stood up to my stepmother, but I had to then. I told her I was coming out and it was wrong to keep me away from him. I couldn’t just turn off my worry just because she said he was ok again.

My husband was sulking because I would be gone an extra week. I carried with me the stress of knowing I was putting an extra strain on him, he would have to coordinate work and babysitters, but I did it anyway. I missed class, and planned to work remotely for my internship.  The agent I worked for was incredibly supportive, and for that I will always be grateful.

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My father was watching TV when I came in. His elbow poked sharply into the air, his left arm bent behind his head. The bed was adjusted so that he sat up and several pillows were arranged behind his head.  All that was visible under his blankets were the top of his sunken  chest, and arms which were so thin they belonged more to an anorexic then to the man who used to hold them out in front of him to dive-a dive  that always ended  in a red bellied flop, or that dealt painful though well deserved spankings after a talk that lasted far longer than the actual discipline-he made sure I understood what I had done wrong, and that he loved me, but explained right before the blow this had to be done.  Thin silky hairs barely covered the top of his scalp which was shiny and stretched tight over his skull. His skin was grey, the same shade as the gums of childhood pets after they had grown cold,-exactly the same color my mother took on in her last days. His lips were dark, a familiar blue, the shade of the cold pads in the packaging under steaks; purple on the outside, a hint of red at the very edges, a deep irrevocable darkness in the middle. The skin under his eye sockets hung down the same way they did under my grandmother’s eyes, eyes that were impossibly old to me then. I thought I had seen a lot then, I was in my twenties when she died.

This was everyone’s definition of getting better?  When he saw me his face broke into a grin, his light eyes were wide, and his scruffy eyebrows raised in an expression that would have been comical if it hadn’t said so much.  Seeing him like this confirmed that I made the right decision.

When I took his hand, his grip was strong, impossibly strong for hands so icy cold.

Inside I felt sadness, fear, resignation, but outside I remained cheerful, I watched movies with him, I told him about my family, showed him pictures, and read to him. I did some work for my internship and class while he slept.

I congratulated myself for following my instincts.

* I learned several lessons from this whole process. One worth mentioning here: how terrifying to think that my wishes may not be honored, even if I have them written down, signed, sealed- legalified, because the judgment of my family is clouded with the threat of impending loss. Doctors still think they can beat death, sacrificing the quality of your last days in pursuit of this goal. There are doctors, like my cousin, who work to make other doctors aware of the problem, but it is an uphill battle. Scary, Scary, Scary. Thank Goodness for Hospice. Make sure EVERYONE knows what your wishes are, you’d be surprised how different it looks when you’re in the bed and other people are in charge, well meaning, or not.

A few sites my cousin gave for more information:

1) EPERC.mcw.edu
2) CAPC.org
3) AAHPM.org

**She was a huge help to me, not only because she was the final voice of reason, but because she cried when talking about my father’s situation, telling me what she remembered about him when she was a child: attending my parents wedding, visiting them in Montana, and watching me ride around on his shoulders. Everyone, including family members talked about dad’s situation so clinically, detached, like we were talking about a distant relative, not my Father.