“She’s a strong woman,” said Lisa, our regular hospice nurse. We were standing out in front of the house, talking the way people do at such times, in spite of the 11 degree temperature and bit of cold wind. Neither my wife nor I had coats on. But it didn’t matter at that moment.
* * * * * * * * * * * * *
I came downstairs this morning, noted that there wasn’t a time marked on the blackboard in the kitchen. I went into the front room, where the health aide who stays here overnight three nights a week was waiting. I glanced at the monitor, heard my MIL snoring lightly.
The aide, Ruth, glanced at it as well, and then back at me. “She never called to get up to use the toilet.”
“Not at all?”
“Nope. She’s turned over or shifted around a couple of times, but never seemed to wake up at all.”
“Huh.”
“She done that before?”
“Not in recent history.”
* * * * * * * * * * * * *
We made it through the holidays. I kept thinking that I would write about how my MIL was doing, but everything seemed so unsettled, I wasn’t quite sure what to say. First Christmas, with my wife’s brother and his family over for a big meal and to exchange presents. That went fine, and my MIL seemed to enjoy herself, enjoy the company. But after her nap she had forgotten entirely that anyone had been to visit.
Then she had good days and bad days. Days when she mostly slept, days when she seemed to be tracking things around her pretty well, days when even simple words escaped her understanding. Fever would spike for a day, then back to normal for two. There were no trends that were easily identifiable.
New Years eve we mostly ignored. My MIL wasn’t aware of the date, and my wife and I weren’t up for doing anything. With the home health aide coming to stay overnight that night, we just did the usual routine, went to bed as normal – and I was asleep by 10:30. A friend teased me about it by email the next day, said I was getting old. I was grumpy, somewhat resentful in my reply. I’m often grumpy these days, due to the stress. I’m glad most of my friends understand.
* * * * * * * * * * * * *
Lisa came into the bedroom, set down her things, handed over the package of Depends for my MIL. Hospice covers everything, even that. My wife helped her mom sit up on the edge of the bed as I opened the drapes for the large double window.
Lisa pulled the wheelchair over to the side of the bed, settled herself, and began going through her usual exam, chatting pleasantly with my MIL all the while assessing her condition, asking us questions about how she had been doing the past week. As usual, she found it difficult to get a solid pulse when taking my MIL’s blood pressure, then her brows knit together for a brief moment. “78. Only number I can get.”
She looked from MIL to me and my wife. “Has she been sleeping long?”
“No, she just laid down after breakfast and getting dressed about five minutes before you got here.
Lisa nodded, continued the exam. But she was being a little more thorough than usual, checked my MIL’s fingernails closely, then her toenails. Listened carefully to her lungs, timed her heartbeat for a long time, tested the elasticity of the skin on the back of her hand. Asked about how much my MIL was drinking, kidney and bowel function. All the while smiling and interacting with my MIL, keeping her happy and engaged.
“How much is she sleeping each day now?”
My wife and I looked at each other, calculated a moment. “About 16 hours a day, give or take an hour or so.”
Lisa nodded. She looked at my MIL, asked “Are you feeling OK?”
My MIL continued her smile. “Well, I think so.”
“Any questions?”
She looked to me and my wife for some assurance. “No, no, I don’t think so.”
“Good, good,” said Lisa, packing her things.
“MIL, do you want to lie down again for a while?” I asked.
“Yes, I think that would be nice.”
My wife got her tucked back in bed safely as I escorted Lisa out.
* * * * * * * * * * * * *
Part of my difficulty in writing about my MIL these past days has been confusion about not just what to say, but about how I felt about it.
I’m tired. So very, very tired. As I’ve mentioned, this time of year usually carries something of a depressive element for me anyway. With the lingering uncertainty about where we were at with my MIL’s condition, I’ve felt a certain confusion about what I want, what to do. It is easy to understand how a care-provider will become exhausted by the process of doing what we’ve done for the past four or five years. It is even easy to understand how they might look to the end with a certain anticipation – not wishing for their loved one to be gone, but knowing that with the end will come release from the burdens of care giving.
What may not be easy to understand is how the prospect of that is a little frightening. No, I’m not talking about the mechanics of death – that is fairly easy to understand when you are a mature adult with the experience of losing friends and family. Rather, it is fear which comes from a change of definition of who and what you are.
And it is fear of guilt, at least in my case. Guilt over whether I could have done more, guilt over wanting to be free of the burden of care-giving.
* * * * * * * * * * * * *
“Are you finished with lunch?” I asked my MIL, as I came into the kitchen. I had been in my office, writing this entry.
“Yes. But I need someone to unblock the wheels.”
We have to keep her chair secured with a 2×2, otherwise she’ll try and leave the table. I set down her after-lunch meds on the table after I removed the plate for her lunch. “Oh, I can take care of that. Here, you need to take your pills.”
“Oh, OK.” She took her pills.
“Ready for a lie-down?”
“Yes, I am.”
I got her away from the table, removed her bib, and wheeled her into her bedroom. She used the toilet in there, then I helped her into bed. As I was tucking her in, she looked up me and said, “thank you for that delicious lunch!”
“You’re welcome. Have a good nap and call when you are ready to get up.”
And as I walked out, closing the door softly behind me, my eyes filled with tears.
* * * * * * * * * * * * *
I escorted Lisa out, after the examination. “I take it you see something?”
We walked down the front steps. “She’s declined. There’s congestion in the lower lobes of her lungs, and they sound rough all throughout. The low blood pressure and high pulse rate – it was over 110 – is not a good sign.”
“How was her heartbeat? Same irregularities as before?” I asked, as my wife came out to join us.
Lisa looked at my wife. “Yes, but hard to tell, her heart is beating so fast it kind of covers it up.”
“What do you think?”
“She’s close. The end could come at any time. Hopefully in her sleep.” Lisa said it in a way that was plain, honest, but sympathetic.
I nodded, looked back up at the house, the flags waving on either side of the front porch. “We were surprised she made it to new year, frankly.”
“She’s a strong woman.”
I nodded, looked at my wife. “She is, indeed.”
* * * * * * * * * * * * *
Jim Downey
(Cross posted to Daily Kos.)
Filed under: Connections, DARPA, Expert systems, General Musings, James Burke, Music, Predictions, Science, Society, Survival, tech, Writing stuff, YouTube
I’ve mentioned previously the work of science historian James Burke. This past weekend I finished watching the last couple of episodes of his ground-breaking series Connections. Overall, you would probably enjoy watching the series, and will find a lot of chuckles over what was “high tech” in 1978 versus the reality of what we have today. But the closing bit was just stunning – it was a prediction of the need for and use of the Internet before DARPA had even begun to let the cat out of the bag. Here’s the last ten minutes:
In particular the bit that starts out at about 5:00 is the culmination of his entire thesis about change – that understanding how things change is the key to understanding everything. At about 6:45 is this remarkable passage (transcribed myself, since I couldn’t readily find it online – how’s that for irony?):
Scientific knowledge is hard to take, because it removes the reassuring crutches of opinion and ideology. And the reason why so many people may be thinking about throwing away those crutches is because thanks to science and technology, they have begun to know that they don’t know so much, and if they are to have more say in what happens in their lives, more freedom to develop their abilities to the full, they have to be helped towards that knowledge they know exists and that they don’t possess.
And by ‘helped towards that knowledge’, I don’t mean give everybody a computer and say “help yourself.” Where would you even start? No, I mean, trying to find ways to translate the knowledge, to teach us to ask the right questions. See, we’re on the edge of a revolution in communications technology that is going to make that more possible than ever before. Or, if that’s not done, to cause an explosion of knowledge that will leave those of us who don’t have access to it as powerless as if we were deaf, dumb, and blind.
Digital divide, anyone? Anyway, I find it just fascinating that Burke was so dead-on in his prediction of the Internet, even if he didn’t have the term for it, and yet even he failed to understand how phenomenally all-encompassing it would be. Whereas he thought that it would be impossible to just give people access to the information and say “go to it”, that is exactly what we’ve got – and self-organization of information and resources like Wikis make that information understandable, not just accessible.
When, as often happens, I feel somewhat pessimistic, that our greed or violent tendencies will outstrip our maturing as a culture/species, it is helpful to come across something like this. And I think that is why I read SF, and have written Communion of Dreams: because there, with all the ugliness and human folly, there is nonetheless room for hope. Look at what we’ve done in just the last thirty years – what more can we accomplish in the next forty, if we don’t destroy ourselves?
Jim Downey
(Cross posted to UTI.)
Filed under: Feedback, General Musings, Promotion, Publishing, Writing stuff
I took yesterday off from all blogging (including commenting on blogs), just to relax and watch movies. But I did stop by here and get the year-end stats for the blog and my Communion of Dreams site, and here they are:
- 6,288 have downloaded the novel. As noted in this post, that reflects a slow down over the past couple of months, but still amounts to over 500 downloads per month on average. Sure, it’s not block-buster size sales, but it ain’t bad.
- This blog has had a total of 10,834 visits.
- Typical visits per day is now between 50 and 70. The best day was in August, at 152 visits.
- I posted 247 entries in 2007, which amounts to something on the order of 100,000 words (or more – this software will not allow me to calculate that easily, so I am estimating an average post length of between 400 and 500 words). That’s a solid-sized novel, and makes me feel pretty good about maintaining my writing skills.
So, just for reference, there it is. Thanks to everyone who visits, links, comments, or helps to promote this blog or my novel.
More later, depending on how the day goes.
Jim Downey
Communion Of Dreams 