Death watch, and other miscellany

I’m back, although I have to confess that there were times today I didn’t think I could make it home tonight under my own power. But the regenerative characteristics of Starbuck’s bottled frappucinos (sp?) is amazing.

This business of trying to help someone you care about die with a certain amount of dignity is tricky. There are so many moments of sadness, loss, frustration, and sheer terror.

But then, there are also all of these opportunities for the blackest of black humor. Talking with the hospice nurse today, I relayed a couple of stories and noted, “I have a very black sense of humor.” She laughed and said, “You have a great future with hospice care should you ever want one.”

To wit, one: Tom still believes in his heart of hearts that he can do any thing he sets his mind to. His muscles are failing him (that could have something to do with the one-third or more of his body weight that he’s lost–one of Lisa’s questions for the hospice nurse a few weeks ago was “How can anyone so thin still walk?”), so getting up and out of bed is a challenge.

But Tom is an engineer, so he has figured out that if he can get positioned and rock back and forth enough, he can catapult himself to his feet. This has a good side and a bad side.

Last night on Tom-watch I lay down beside him and he decided to get up. Before I could get around the bed to help him, he used the catapult technique to catapult himself right into the dresser, head first. I didn’t even see the cut over his eye when I first helped him up. But I heard him hit.

Here’s where the terror comes in. I’m thinking, “OMG, concussion at the very least.” I’m starting to panic, wondering if I should call hospice or 911 or someone. Then reality kicks in.

Concussion. Headaches. Confusion. Trouble in recalling words and speaking clearly. What would be different? A brain tumor is something like a permanent ongoing concussion, or at least this particular brain tumor is. A part of me wants to giggle. Another part wants to cry.

The hospice nurse reinforced that. She said, “At this point, almost nothing matters.” The hospice primary care person said, “Now we talk about weeks rather than months. How do we keep him comfortable?”

As part of the comfort therapy, I drove across Salem today to pick up two prescriptions. A hospice volunteer was with Tom, who can’t be left alone at this point. Tom’s treatment plan changed abruptly today, and I thought if I picked up the medications, it would save Lisa a struggle with how to do it. The prescriptions were to be filled at a pharmacy about as far from Tom and Lisa’s house as you can get and still be in Salem, because the pharmacy happened to be the only one that had one of them in stock.

When I got there (about a 25-minute drive), the pharmacy had decided they could only fill one prescription without additional faxes and information from the hospice prescribing physician. So I could fill one prescription, but not solve the main problem.

I almost went ballistic. I even considered just leaning across the counter and bursting into tears (I was so-o-o-o tired at this point). But instead, I decided to get what I could get and go fight the battle elsewhere.

Then the clerk behind the pharmacy counter said (prescription medication in hand): “Since Tom has never filled a prescription with us before, we need to develop a profile for him.” (It is worth noting that at this time there were eight people behind me in line for this single clerk.)  I bit my tongue, gave her his full address (I couldn’t remember the zip code exactly, and after 2 minutes of dithering around with her computer and throwing various options at me, the clerk said, “Never mind, we’ll fix it later.”)  and phone number, date of birth, location of any moles, and so one. Then the clerk asked, “Does he have any allergies?”

That stopped me cold. “I don’t know,” I said, “but since he’s dying of terminal cancer does it really matter?”

“Well,” she said, “we wouldn’t want to make him sick now, would we?”

Now I’m having a lot of trouble even categorizing this post. I’m going to quit and go to bed. Lisa was so worried when I left that I called to tell her I got home safely (still feeling guilty for leaving her alone with Tom). She said (with a rueful voice) that he was stuck in the hall again. So we kept the conversation short and I felt guiltier than ever at leaving her to deal with this alone.

It should not be this hard to die.

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8 Responses to “Death watch, and other miscellany”

  1. akentuckycreation Says:

    I can identify with your journey. My mother lingered for some time. Her last morning she said that she should not eat the strawberries because of her intestinal problems, I told her it would be OK. I knew she only had a few days to live so why not enjoy the taste of strawberries. You are right that it should not be this hard to die, but I think about our Savior and what he endured for us. I will continue to keep you, your brother and sister-in-law in my prayers. I pray that God grants you strength and peace and your brother comfort in what he will be facing in the afterlife.

    Lee

  2. Marianne Says:

    Lee, thanks for your good thoughts.

  3. Barbara Says:

    People just don’t get it sometimes (the pharmacy clerk). But sometimes it takes more energy to explain than to just let them not get it.

    I know what you mean about that dark sense of humor. My sister and I shared some while my mom was ill, and there were some really bizarre moments (and expectations by people who had no idea what her illness involved for us), as well as the delicate problem of maintaining her dignity. My mom hated to let others take care of her personal needs. Then there were those heartbreaking moments, such as when she would talk about wanting to make a kaleidoscope quilt. She worried about all of us, too, just as she always had. Those were the things that got to me, and later made me wonder what my last thoughts would be about. Probably the same sorts of things. My love ones, my normal routines, my privacy, and my favorite activities, right up to the end. We don’t give up any bit of life easily.

    It is hard, but it’s a blessing for them that you could be there even for a day or two, I’m sure.

    Many blessings to you and yours.

  4. Marianne Says:

    Barbara, thanks for the note. I’ll be back in Salem at least two days a week for the duration. My daughter’s going by today to see her uncle. It’s so hard for Lisa to even be able to pick up a prescription or a few groceries. She’s blessed with some wonderful neighbors and some friends at work who are willing to lend a hand. And it looks like it won’t continue too much longer. That’s one of those good news/bad news sorts of things. But it’s very hard to see Tom in so much pain, so there is some light associated with what’s coming.

  5. Nathan Zeldes Says:

    Marianne, the right words elude me (if there even are right words for this), but my thoughts are with you.

  6. Marianne Says:

    Nathan, thanks so much. All good thoughts are welcome. I’m not the first (nor will I be the last) person to deal with something like this. We all get through this stuff somehow. And friends help.

  7. Philip Ferris Says:

    We helped to care for my mother-in-law for an long as we could then the hospice came on board. I understand perfectly the dark humour aspect, also the tiredness. (Every evening, after work, we faced a 1 hour drive to the hospice and the same drive back – I can’t even imagine how we found the strength to do so for over 3 months, you just do).

    As always my thoughts are with you, even when there is nothing I can say or do. (Have been visiting my godson for a week or so and not much online).

  8. Marianne Says:

    Phil, thanks. You are absolutely right. You do what needs doing. And you laugh when you can, because it’s easier than crying.

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