Critical Mass

Of course, as soon as I get back to San Antonio, all hell breaks loose.

My dad has hit a wall as constant caregiver. He's overwhelmed and frustrated, isolated and impatient. Having nurses and aides come for an hour or two each day still leaves him the rest of the day and night to care for her. He's trying to let logic override emotion, but without realizing it, his emotions are overriding logic. It's too hard for him to think about her being gone, so he thinks about it all the time. He's lost sight of why it's important to keep trying with her, to talk with her, to get her out of bed, to help her eat and drink, to take her to doctor's appointments. He doesn't see the point in any of it and he gets upset with me for questioning him.

Today, he had two things on his calendar: Take mom to the oncologist in the morning and meet my aunt Florence at the airport in the late afternoon. Having the Hospice aide call to schedule a visit in between those two events was too much on his plate, so this morning, he decided not to take mom to her appointment - thought it was a waste of time, told the Hospice aide not to come today - not convenient, and said that he was considering not driving to the airport to pick up his sister.

When I told him there was a point in taking her to the doctor - they were very clear in saying that they wanted to see her today - and that the aide comes to help both of them, he got defensive and told me I was suggesting he wasn't doing a good job with mom.

"Dad, you're doing a great job, and this is unbelievably hard. It's what you've been doing day and night for a month now and that's a lot to ask of anybody. All I'm saying, is that there's a disconnect. I'm hearing you say it's time to just let her slip away, but I have not heard that the doctors have said that it's time to discontinue treatment. Her doctor saw her Monday and wanted to see her again today, dad. There was a reason the doctor wanted to see her again in two days."

"The doctor wasn't going to be able to tell us anything," he protested. "It's just more of the same. The tumors are getting larger and there's nothing we can do about it, and you have to accept that."

"Dad," I said slowly. "How do we know what kind of tumor growth is there? You canceled her CT and PET scans last week. Her oncologist says her blood markers are improving."

"The blood markers go up and down all the time," he snapped. "It doesn't mean anything."

"Yes it does mean something," I said. "If it didn't mean anything, the oncology nurse wouldn't have mentioned it to me on the phone yesterday. She said it's the second time in recent weeks that it's gone down. It's one of the reasons they were very eager to see her today. You can't just not take her to these appointments."

"Fine. You take her to the doctor and to get her scans," he said. "I'm hanging up the phone now. Call me later and tell me what you decide to do."

What I decide to do. He's done and he's giving it over to me. For the first time, I have no idea what to do or say. I'm frustrated from the confrontation and I feel like I need to drive back up there again.

I spent the rest of the afternoon on the phone with the Hospice case manager and the social worker. I made my case for an intervention and the social worker is making a home visit tomorrow. She's going to suggest to my dad that in addition to Hospice, that he bring in another caregiver who can spend more time there during the day.

Connections and Updates

Being here on the weekends gives my dad a break from being mom's primary caretaker. As she sleeps in the living room recliner, he sits at his computer in the waning daylight, reading and responding to e-mail.

My dad has a lot of friends and acquaintances, so it's no surprise that his inbox is full of sincere inquiries about my mom's health and messages offering caring and support.

In the upscale, "active adult" community where my parents live, aging, illness and death are not sugarcoated. It's part of everyday life here, so the notes from friends and neighbors here are gentle, but candid, because most of them have been through the experience and understand. 

My dad responds to each one, with the latest updates and information about my mom. His words are more realistic than hopeful. Some people might cut and paste to avoid having to relay the same information over and over again, but for him, I think composing each e-mail individually is part of what he needs to do right now. He's preparing himself for what he sees as the logical conclusion to this episode and if he talks about it and writes about it enough, maybe he thinks he'll be better prepared.

As caregiver, he hasn't been getting out of the house for his normal activities and routines, so e-mail is his outside connection right now. But because most of the e-mail he's receiving/responding to is about my mom, I wonder if the constant reading and responding to the same questions and concerns is taking him far enough away from this for the break he needs?