Friday, June 12, 2009

The Last Visit

You are not always gifted with the knowledge that the last time you see someone will in fact be the last time. But when you're spending time with someone with a terminal illness who could slip away at any time, it's best to always prepare yourself that when you walk away from a visit, you may not see that person again.

Yesterday I had my last visit with Kathy.

I rearranged some of my conference calls, questioned whether it was a good idea to leave the office a few hours after I started working and drove up to the house with the usual uneasy feeling in the pit of my stomach. I didn't want to go, but I felt compelled to go and wanted to see Kathy. Knowing how lonely she gets, I was drawn up there.

When I called Daddy-o to tell him I was going to come up for a visit, he hesitated and said that Kathy did not have a good morning and it may not be the best idea. In hindsight, I'm so glad I didn't listen to him. I told him that I had a few things to drop off for him (a picture of Kathy blown-up for the service and some foam board for other pictures he wants to put on display) and that I could just pop my head in to say hi. And if Kathy wasn't up to a visit, I would leave.

After visiting with Daddy-o for a little bit, I went into Kathy's room and was shocked at just how much worse she looked than when I last saw her on Tuesday. I wondered how so much could change in two days. In many ways it was like looking at a skeleton. Barely any skin actually covered her bones. Her energy level was way down. She didn't even attempt to smoke. And I'm sorry to share, there was so much of her chin and mouth missing that I could now actually see the roots of her bottom teeth. I once again felt so sorry for this woman and wondered why in god's name would she want to be alive in this state.

She indicated, through barely audible moans, that she wanted water. She haphazardly pointed to some orange juice on her bedside table. She tried to hold the cup in her hand, but started dozing off before remembering to take a sip. I asked Daddy-o to grab these mouth swab type of things that are like a little sponge. I dropped that in the water and gave it to Daddy-o to put in Kathy's mouth. I held her hand and asked her to open her mouth just a little more so we could help her get some hydration without having to do really any work. She seemed to like that and expressed a tiny bit of relief at the prospect of fluids in her mouth. I sat patiently by her bedside, holding her hand as we continued to get some additional water and juice in her mouth and asked her to open her mouth just a little more so we could get the swab in her mouth.

I couldn't help but notice how much more sick she looked. The infection or illness or whatever had reached her eyes. Gunk was coming out the corners. Her breathing was labored and sounded junky. It was like she was snoring, only she wasn't.

Although Kathy wasn't too alert, I did spent some quality time with her. I suggested that Daddy-o call the hospice nurse to inform her that Kathy seemed to have changed dramatically in a matter of days. While he slipped out of the room to make the call, I asked Kathy for her hand and we sat there quietly, seemingly okay with just being in one another's company. I'd give her hand a little squeeze from time to time and she'd give mine a little back- not with as much strength as Tuesday, but I was encouraged that she could squeeze it at all. We didn't do as much talking as we had previously.

During our last visit, it became obvious to me that Kathy was scared to die. She mentioned not wanting to leave us and she's said other things along the way that made me realize maybe the reason she was hanging on for so long was because she was afraid. Since I have often felt out of my league in this situation, I've relied on some books to provide insight and guidance when I couldn't figure out the path on my own. My aunt gave me a copy of a great book by Jane Brody called "Guide to the Great Beyond." There's a whole chapter titled "What to Say: Conversations at the End of Life." I turned to it on Wednesday to see if there was anything that could help me talk with Kathy about dying, or anything I could say that would make her feel less scared.

Although it didn't specifically address the whole I'm scared to die bit, I found a lot that was helpful. And a lot that put into context what this experience has been like- helped explain why I've been doing what I've been doing. One of my favorite parts of the chapter says:

"Strength does not lie in stoic, unemotional encounter, but rather in full exposure to one's own emotional responses, including intense angst. They urged that those in contact with someone who is dying should help the person wrest life-enhancing meaning and value from a situation in which many can find only despair. They do so primarily by their willingness to engage in authentic conversation with the one who is dying. Authentic conversation has the power not only to enhance how people cope practically with dying, but to illuminate and enrich the very meaning of life for patients and caregivers alike as they enter the sacred moment of mortal time together."

It then went on to say:

"One of the biggest problems faced by terminally ill patients is that people won't talk to them, and the feelings of isolation add a great deal to their burden. Contrary to what many people seem to think, talking about dying does not create new fears and anxieties among those who are terminally ill. Rather, those people who are dying and have no one to talk to typically have the highest levels of anxiety and depression."

Without knowing it, I was doing a lot of this- having authentic conversations with Kathy, trying to alleviate her anxiety about dying and help her find meaning at the end of her life.

Unfortunately, because Kathy was so out of it, I didn't get to have as deep of a conversation with her during yesterday's visit. I wanted to talk with her more in depth about dying and how she was feeling. However, the only meaningful question I was able to get out was asking her, again, if she was ready to let go. Kathy shook her head no and I continued to be baffled by her desire to stick around.

I did crouch down, hold her hand, look her in the eyes and tell Kathy how brave I thought she was. I told her how much I had learned from watching her over the past couple of months. And that I really admired her for how she's handled everything- for her strength. She acknowledged what I said by giving me a squeeze of the hand. I told her that I loved her. She struggled to mouth that she loved me too. And I walked out of the room.

I called today around 2pm to find out how Kathy was doing and Daddy-o said, "Yeah. I have some bad news." He continued to tell me that when he went in to check-in on Kathy this morning, he found her slumped over and discovered that she had died at some point in her sleep. While he didn't call me, either of his sons or anyone else in the family, he did call the hospice nurse. She came up to the house, declared Kathy dead and then called the mortuary who showed up to remove Kathy's body from the house. I'll never understand why he didn't call me or his sons to notify us that Kathy had died. As wacky as it is, I can't even try and make sense of why he chose to handle it this way.

It's hard to say how I'm feeling about the whole thing though. I haven't cried much. I feel an enormous sense of relief knowing that Kathy is not suffering anymore and is finally at peace. But when I went up to the house tonight, I realized how sad it was to walk in without Kathy there; I'd never been at that house without her there. And it was even sadder to watch Daddy-o get choked up when Steve and I said goodbye after our visit this evening. I hate the thought of him up at that house all alone. I hate to think about what his life is going to be like without her.

I take enormous comfort knowing how instrumental I was in helping Kathy find meaning at the end of her life, encouraging her family to connect with her in a way they hadn't done in years and even learning a lot about myself and life in general throughout this whole process. And I feel so happy that as much sadness, anxiety and overall shittiness surrounded this whole experience, my last conversation with Kathy was one that I could be proud of and take comfort in knowing that it brought Kathy some comfort and happiness.

I've been humbled by how much our relationship has changed through this experience and will always treasure how this path to Kathy's death brought us closer together and enriched both of our lives in a very unexpected way.


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