Filed under: Alzheimer's, Health, Hospice, Predictions, Preparedness, Sleep
After a long and valiant fight, my MIL passed away this morning about 5:20. My wife and I were with her.
Memorial arrangements, and further reflections on her battle with Alzheimer’s, to come later.
For now, think of her, whether in your prayers or your hopes.
Jim Downey
Filed under: Alzheimer's, Health, Hospice, Predictions, Preparedness, Sleep
OK, I shouldn’t be flip about this.
But my MIL continues to astonish. As noted previously, the woman is very strong. Our hospice nurse all but said (and this is no criticism of her or her judgement) that my MIL would likely pass last night. But she made it through. And through the morning. And through the afternoon. Late afternoon another nurse (our usual is off today) called from hospice to see what was going on – and whether we needed any help, supplies, et cetera. The hospice people have been great.
Anyway, my MIL is still hanging in there. She’s weaker, her breathing continues to deteriorate, she’s in a deeper coma than I mentioned earlier, and her fever is now 5 degrees above normal. But she is still fighting. It isn’t necessarily what I would have chosen for her, but my respect for her has stepped up another notch.
So, predictions be damned. We’re just sticking in there with her for as long as she’s with us.
Jim Downey
Filed under: Alzheimer's, Health, Hospice, Predictions, Preparedness, Sleep
. . . on my MIL’s condition.
She made it through the night, though has been in a light coma for the last several hours at least (that’s not a medical diagnosis, but seems to fit). My wife and are are still able to stay on top of her needs, and she seems to be in no pain, though her breathing is distressed and indicative of the nearness of death.
My wife and I are doing well through this, and have taken turns resting. My wife’s brother was able to come and spend a good long time with his mother this morning, and we’re getting plenty of support from friends and family. It’s about the best one could hope for, and I will have a lot to say about the whole experience once we have a chance to rest and recover a bit.
Best,
Jim Downey
Another brief update about my MIL . . .
Lisa, the hospice nurse was here a little while ago. Based on what she sees, she said that we should expect my MIL to pass on sometime tonight, and made arrangements to inform the people who are on call for the hospice organization. Based on her other recommendations we are also switching my MIL’s meds over to those which can be administered in liquid form, to minimize difficulty in getting them down.
It’s likely that my next update will be news of her death. May it come gently.
Jim Downey
Filed under: Alzheimer's, Health, Hospice, Predictions, Preparedness, Sleep
For all who are following things here with my MIL . . .
She has largely been sleeping/dozing comfortably, and we’re doing all we can to make sure that she stays out of pain, unworried. Either my wife or I are now with her all the time. She didn’t eat any supper last night, had a bit of yogurt this morning. Things seem to be winding down as well as they can be. Lisa, our hospice nurse, should be by later this afternoon to check and see if there is anything else we can do to help matters.
I will post updates as appropriate. Otherwise, do not expect to hear from me very much.
Best,
Jim Downey
Filed under: Alzheimer's, Daily Kos, Failure, Health, Hospice, Predictions, Sleep
“What’s wrong, MIL?”
She’d been restless most of the afternoon, but each time she called or squirmed enough to prompt me to investigate, the most she had been able to tell me was that she was “uncomfortable.” I tried to tweak her meds a bit, but I suspected that the duragesic patches which are supposed to be good for 72 hours were running dry half a day early.
She took a sip of water from the straw I held to her lips. She swallowed, then said: “I was just worried.”
“Worried? What are you worried about – maybe I can help?”
“Well, I think I need to go shopping.”
“Shopping?”
“For clothes. For when I take the train back to college this fall. I won’t have time to shop once I am there.”
* * * * * * * * * * * * *
My wife had been napping. These days, each of us does what we can to get enough sleep, whenever we can. Because while I write these entries about what I have been doing in caring for my mother-in-law, be assured that my wife does even more in caring for her mom. So we watch out for each other, try and leave time for napping.
When she came down, asked how her mom had been doing, I told her my suspicions about the patches. We’d seen evidence previously that they ran out a bit early for my MIL – everyone has a different speed at which they metabolize medicine, even something as supposedly stable as a transdermal patch. She agreed with my assessment, and we changed the patches 12 hours early. At worst, the hospice might complain that we had made a mistake, and not to do it again.
I didn’t care about that, and I wasn’t sure that it would matter – that the end would probably come before we had to worry about a new Rx for the patches.
* * * * * * * * * * * * *
It takes a while for the painkillers from the patches to saturate the system – there’s a ‘ramp up’ period, once they have gone dry. This is well understood, and we have additional painkillers on hand to help get past the initial stages – what are called “breakthrough” medicines. We’d given her what we hoped was enough of this when we got her to bed, along with something to help relieve her breathing difficulties. For a while, she slept fitfully.
Then at midnight she woke, tried to get out of bed. I heard her (I was on-call), got dressed and went down to see what she needed. As I got her disentangled from the bed rails and onto the commode, I asked her if she was OK.
She looked at me, her eyes watery and unfocused. I never did get much of an answer out of her, but it was clear from how much difficulty she was having breathing that I needed to do something. I did – increasing the dosage of the med she takes to control this kind of spasming. This is what we’ve been instructed to do by the hospice nurses.
It worked. After I got her back into bed and settled, her breathing relaxed, and she started snoring loudly. She snored like that for two and a half hours, during which time I actually got some sleep. You learn what sounds are good sounds when listening to a monitor at night.
And you learn what sounds are not. I woke about 3:00 to the sound of silence. Not even a hint of breathing from my MIL.
I went to check, found her still breathing, but so lightly and shallowly that you could barely tell it, even when standing right over her.
Two more times before I got up at 6:00 I went to check, see if she was still with us. She was.
* * * * * * * * * * * * *
She wanted to get up for breakfast, so we did that. But she was breathing and coughing so hard that when she’d finished we didn’t even suggest that we go ahead with her normal Sunday morning bath. Getting her dressed, she was barely able to hold herself upright in the wheelchair. When we got her into bed her breathing was again stressed, and again we gave her something to help, half a dose.
And then we called hospice.
Lisa, our usual nurse, had told me on her last visit Thursday: “Call. Anytime. We don’t like surprises.”
So I called. The office put us through to the nurse on call this weekend. It was Lisa. I told her how things had gone in the previous 24 hours.
“I’ll be right over.”
* * * * * * * * * * * * *
“There’s significantly diminished lung capacity,” said Lisa, setting aside her stethoscope. Kneeling there next to the bed, her hand gently brushing my MIL’s hair away from her face, she looked up at us, then back at my MIL. “Can you say goodbye to me? I just stopped by for a moment, and have to leave now.”
It took my MIL a few moments to understand. Then she smiled slightly, and with a weak voice said “Goodbye.”
Lisa gave us another patch, this one to help control secretions into my MIL’s airway. Some swabs for her mouth, when it needs moistening but she is unable to drink. Told us how to arrange the pillows under my MIL to help control aspiration problems. And that we should freely use the meds which help control breathing spasms, keep her comfortable. “It’ll probably make her even sleepier. But at this point, that is not a bad thing.”
I nodded.
And now we wait.
* * * * * * * * * * * * *
Jim Downey
(Cross posted to Daily Kos.)
No, sadly, not the musical movement. Rather, the approach we now take to caring for my MIL. All our routines are slipping away, the carefully practiced choreography which has defined our lives for years no longer relevant.
I’ve been saying for a while that we were coming to a close of this chapter of my MIL’s life. I’ve been wrong before in my predictions that it would come on this day or that, before or after a particular holiday or birthday. And so I may well be wrong again when I say that we are now on the last few pages of the book.
There is something to this of that bittersweet moment, that sense of coming to conclusions you know are there, the resolution of conversations and plot lines that you get at the end of a cherished book. She no longer needs to wait for the usual markers of the day – when to get up, when to eat, when to nap. She got up this morning, and the rest of the day has followed as best we can to her wants and desires. Lunch an hour early, and including her favorite soup even though she just had it yesterday. (Campbell’s Tomato, if you want to know.) Supper about a half hour early. Bed more than an hour early. Because that is what she wanted.
Her worries we have answered as best we can, telling her that tomorrow we will see if we can help her find “the people she came here with.”
Unless she finds them on her own in her sleep.
I’ll keep you posted.
Jim Downey
Lisa, our regular hospice nurse, arrived while we were getting my MIL dressed this morning. She sat and watched, observing my MIL, seeing how she interacted with us, how she moved, how she looked. Then she went through her usual examination, checking vital signs, listening to heart, lungs, intestines, asking the usual questions about sleep, and appetite, and signs of pain. She sat back, looked at my MIL, and said pleasantly to her: “you always have such a beautiful smile.”
* * * * * * * * * * * * *
There is light snow falling, but the winter storm which had been predicted has missed us for the most part. The grey fits my mood.
In anticipation of the storm, and in response to the accelerated use of wood mentioned in this post, I spent most of yesterday afternoon out at our farm, cutting seasoned downfall and then hauling it back home. It felt good to be physically tired, rather than just emotionally exhausted. The soreness I feel today is a reminder of just how out of shape I am, but also holds a promise that I can once again get back into something resembling decent condition. Pain isn’t always bad.
* * * * * * * * * * * * *
The last few days have been oddly quiet. My MIL has slept most of the time, for all but 3 – 4 hours each day. My wife and I move through the house as silently as possible, even chastise the cats and the dog if they get noisy. We want her to have whatever peace and quiet she can.
When she is up, she is confused about where she is, who we are. We roll with it the best we can, though sometimes we’re caught off balance and react poorly. At least a couple of times we’ve played the “oh, here, let me call your mother” game again.
Today at lunch she was worried about where she had left her purse – she was concerned about how she was going to pay for her meal. I told her it was all taken care of, that she didn’t need to worry. She looked at me with such gratitude, the thanks not given a son-in-law of 20 years, but rather of someone offered unexpected shelter and food by a stranger on a long and difficult journey. Then we watched a squirrel play, and she laughed.
* * * * * * * * * * * * *
We were just getting her tucked into bed for the night. My wife leaned over the bed rails, down to kiss her mother on the cheek, as she usually does. “Sleep well. Have good dreams and pleasant journeys.”
My MIL looked away for a moment, rather than replying, “you too, dear,” as she usually does.
“Something wrong? Is there something you need, do you hurt?”
A glance, almost embarrassed. “Could you stay with me?”
It was my turn to be on-call. My wife looked at me, back to her mom. “You mean just for a little while?”
“No. Sleep here with me.”
“Of course. Let me go put some things away, and I’ll be back in a little while.”
* * * * * * * * * * * * *
“Any further signs of T.I.A.s?” asked Lisa, once she was done with her exam.
“No, but she’s been sleeping so much we likely wouldn’t have noticed.”
She nodded. “Her heartbeat is now much more irregular, and that can frequently cause a T.I.A. at this point.”
We nodded. The signs of hypoxia were very clear, and there was a mottling to my MIL’s skin in places we’d not seen previously.
“Her lungs are also very crackly, breathing labored just from sitting up. Pulse is weak, blood pressure low.” She looked calmly at my wife and I. “Is there anything you need? Do you want someone else from the team to come out and give you a break, so you can get away together?”
My wife and I exchanged glances. We have discussed this. As tired as we are, we don’t both want to be gone at this point. One of us is always here now, both of us most of the time. “I think we’re fine.”
“OK. But this is exhausting. I know it is.” Lisa brushed my MIL’s hair again with her hand, smiled at her. And repeated what she had said moments earlier: “you always have such a beautiful smile.”
* * * * * * * * * * * * *
Jim Downey
(Cross posted to UTI.)
Filed under: Alzheimer's, Climate Change, Global Warming, Health, Hospice, Predictions, Science, Society
Humans have altered Earth so much that scientists say a new epoch in the planet’s geologic history has begun.
Say goodbye to the 10,000-year-old Holocene Epoch and hello to the Anthropocene. Among the major changes heralding this two-century-old man-made epoch:
- Vastly altered sediment erosion and deposition patterns.
- Major disturbances to the carbon cycle and global temperature.
- Wholesale changes in biology, from altered flowering times to new migration patterns.
- Acidification of the ocean, which threatens tiny marine life that forms the bottom of the food chain.
The idea, first suggested in 2000 by Nobel Prize-winning chemist Paul Crutzen, has gained steam with two new scientific papers that call for official recognition of the shift.
There’s more, basically explaining how the shift from the Holocene can be established. Worth reading.
I may post more later, but am fighting a bit of a sore throat thing that has my energy reduced. Brief update on my MIL: hospice nurse was in this morning to bring us meds and do a check up, and it is clear that my MIL is losing ground. We’ve stepped up her duragesic dosage again, to make sure that she stays comfortable, and Lisa (the nurse) went over some other things we can do if she gets into difficulty. We’re just taking things on an hour-to-hour basis.
Jim Downey
Filed under: Alzheimer's, General Musings, Health, Hospice, N. Am. Welsh Choir, Patagonia, Predictions, Preparedness, Sleep, Travel
I came downstairs yesterday morning a little after 6:00 to discover from the home health aide that my MIL had not been up all night. This has happened a couple of times recently, and usually she calls or rustles around enough to indicate that she wants to get up and use the potty sometime shortly thereafter.
But not yesterday. She was quiet, sleeping until my wife and I went in to check on her. And she didn’t want to get up at her usual time of 8:00, sleeping until 9:30. Then she had a light breakfast and went back to bed, sleeping until noon, when she had some lunch and then again back to bed. Then she slept until 4:30. When I got her up then, her cyanosis was the worst it has yet been, her entire fingers a disturbing deep blue, as were her feet. This indicates a level of generalized hypoxia that shows just how poorly she is doing.
At no point whenever she was awake did she know just where she was. She kept thinking that she was on a train, or wondering where her car was, asking about when she was going to go home. We played along as best we could.
* * * * * * * * * * * * *
I sent this to a good friend last night:
Anyway, then dishes, got my MIL to bed, et cetera. Now, catch up on some email, do a bit of surfing. I need to start doing some research, find a good online source for learning a bit of survival Spanish.
Why? Well . . .
You probably already know about the North American Welsh Choir tour to Patagonia next October. And you may know that in return for my wife coordinating all the reservations and money and whatnot on the Choir’s end, she is getting her cost of the trip offset (in full, it looks like). Just in the last few days I’ve decided that I am going to go along.
Yeah, surprises me a bit, as well. I have no desire to go to South America. I have never had any desire to go to South America.
But my MIL is going to die soon. And late this year I should have decompressed from that, and been working hard for months being a good little book conservator, maybe an author. It will be a good time to challenge myself in a new way, get out of my comfort zone. This tour will be a good opportunity to do that. Plus my wife and I haven’t had anything approaching a real vacation in a couple of years, and we didn’t do anything to celebrate our 20th anniversary last October. So, this will serve that purpose as well.
So, I guess I should learn some survival Spanish. It is only courteous. And doing that won’t hurt me, either. Neither will pushing myself to get in better physical condition for the trip – something I am planning on for all the other good reasons I know, but this will provide additional incentive.
It’s odd to be thinking ahead this way, to a time when my MIL will no longer be with us, no longer our hour-to-hour responsibility.
But if you know of a good online tutorial for Spanish, let me know.
* * * * * * * * * * * * *
She seems somewhat better this morning. She slept well last night, but wanted to get up to use the potty at 4:30 this morning (I was on-call). I checked her temperature then, and it was almost three degrees above normal. But her hands were their normal color, with just a trace of blue under her fingernails.
And she was anxious to get up and have breakfast at her usual time, though a bit reluctant to get her weekly bath after. During her bath, my wife reported a return of the more noticeable cyanosis. After, she was limp and sleepy, barely able to stay awake while we got her dressed and back into bed.
I just checked on her, helped her get settled in a new position in bed. She is getting weak enough that she has difficulty just rolling over sometimes. This time she was also worried about whether she was going to disturb the person who was sleeping next to her. I told her it was OK – they would understand.
* * * * * * * * * * * * *
It’s odd – making plans to be gone traveling this fall, yet being very tentative about what I am going to be doing this afternoon. Like so much of my life these days, it is the exact inverse of what anyone would consider ‘normal’. But so it goes.
Jim Downey
Communion Of Dreams 