Yesterday was dreadful.
I don’t know what happened to trigger it, but it was one of the worst days that my MIL has had in a while. At least since this day. And this time it manifested itself as a constant need for reassurance. As I told a friend in an email:
Ugh. Not with the ongoing problems with MMIL. It can take me 20 minutes to get her to settle down, only to have her get wound back up about something ten minutes later. Needless to say, I’ve accomplished almost nothing today.
I literally spent at least half the day just sitting and talking with her, doing my best to help her remain calm and not obsess over contacting her parents or going “back to school”. Even with all my experience and what I’ve learned about distracting her and redirecting her attention, it was an almost constant battle.
And in the middle of it, I got an email from another friend with a link to this video:
That’s basically the last six years of my life compressed into six minutes. You want to have some idea what it is like to be a care-provider for someone with Alzheimer’s or other age-related dementia? Watch it.
Jim Downey
“Well, I’ve enjoyed my time here, but I really should go.”
I sat on the couch next to her chair. The slight hiss of the oxygen cannula under her nose could still be heard over the sound of the concentrator in the other room. Her hands picked absently at the shawl we had over her lap and legs. “Well, we’ll be having supper in about an hour.”
“We will?”
My wife entered the room, sat on the floor by her mother’s feet. “What’s up, Mom?”
“Well, I was just saying that I thought I should be getting home, but he tells me that we’re going to have dinner soon. I don’t have any money for dinner.”
“It’s OK, you don’t need any money,” said my wife.
“Oh.” Pause. Look at me. “But I should still tell my mother. She’s been on a long journey, and just got back. She’ll want to know where I am.”
This has become routine. I answer, “She knows. Everyone in the family knows where you are. They know that you live here and we take care of you.”
“Are you sure?”
“Yes, here,” my wife grabs a nearby phone book, turns to the page we’ve marked during this exact same conversation previously. “See, right here is your name, and the address, and the phone number. Anyone who wants to find you can, right here in the phone book.”
“Oh.” Still dubious. “But does my mother know?”
“MIL,” I say, “she asked us to look after you, until she comes for you.”
“Really?”
“Yup. And you can stay for as long as you want, until she comes. And then you can go with her.” I’m impressed by the certainty and reassurance in my wife’s voice.
“Oh, thank you dear, that would be lovely. This is a very nice place you have.”
Indeed it is. It’s been her home for 53 years, and is just the way she wanted it.
* * * * * * * * * * * * *
She seems to be stable again. Following the events mentioned in this post, we weren’t sure which way things were going to go. But after talking with the hospice people, tweaking her meds some, a few days of increased sleep, and with long talks with her to help settle things when she got anxious, she settled back more-or-less into the most recent patterns we’ve seen. There’s little doubt that she suffered one or more TIAs, or a small scale hemorrhagic stroke.
But she has once again proven to be surprisingly resilient. I’m fairly confident that she’ll make it at least to Christmas, probably to the new year. But as in all things, nothing is certain.
* * * * * * * * * * * * *
I wrote this a couple of years ago, as a submission to NPR’s This, I Believe series.
The Power to Forget
I believe in the power to forget. On December twelfth, 1969, my world changed forever. My father was murdered. I was eleven years old.
In the middle of the night I woke to flashing lights from a police car. A knock at the door, and I heard my mom answer it. Then I heard a man say: “Marlene, Wil’s been shot.”
See, my dad was a cop. And as happens all too often, he was killed during a routine procedure, in this case a burglary investigation. They caught the man who killed my father that same night. He was tried and convicted, sentenced to die. That sentence was commuted in 1973 by the Supreme Court, and to this day he is in prison.
I think he is, anyway. I don’t know for sure, because I have tried my very best to forget him. It was that, or succumb to the hatred that threatened to define my life.
For a while I tried forgiveness, since that is supposed to be liberating. When I say for a while, I mean for years. But I failed. There are some things that cannot be forgiven, at least for me.
Instead, I have slowly, and carefully, excised his name from my memory. Now and then something will happen; I’ll come across a story in the paper about him being up for parole, or a family friend will ask “whatever happened to so-and-so,” and I’ll have to start again to forget.
It’s not easy. Much of our culture, much of our popular literature, is based around the theme of a son avenging the death of his father. The whole “find the bastard who shot my pa…” thing. You may not notice it, but I do. And every time I hear about another officer down, every time Father’s Day rolls around on the calendar, I think about my dad. And I think about his death. And I deny the existence of the man who killed him.
Even now, as I write this, his name tries to emerge, tries to struggle free from where I have buried it. But forgetting means that I don’t have live with a constant, aching anger. It means that I don’t have to be trapped in that moment of history. It means that I can continue with my life, never forgetting the love I have for my father, or what it meant for him to die, but not being possessed by a need for vengeance.
I believe in the power to forget. How many old grudges still fuel the fires of revenge in this world? How often have more people had to die because of a fixation on a memory? How much better would things be if we could just clean the slate, forget the offenses we’ve suffered and the ones we’ve inflicted, and move on?
* * * * * * * * * * * * *
Now I am not so sure. Watching my MIL, caring for her as she slowly forgets even the names of her children, that she was ever married, I wonder whether the burden of forgetting is worth the peace. Certainly, she is at peace (most of the time), so long as we do not disrupt the carefully constructed cocoon around her.
I would not want that fate, even if I would be mercifully unaware of it, as she is.
Perhaps, as in most things, it is the matter of intent that makes the difference.
Jim Downey
(Cross posted to dKos.)
I wanted to follow-up to this post of yesterday, for anyone interested.
It seems likely that my MIL has had one or more T.I.A.s or possibly even a small full-blown stroke. This would explain her marked shift in sleep habits, increased confusion and much greater aphasia – and is really about the best explanation we can come up with, since there haven’t been any other changes in her diet or condition which would account for the rapid deterioration.
It is frightening, for both us and her. Clearly, she is confused and unable to explain herself and her worries to us, and frustrated by trying. She is completely lost in time and location, not aware of being at home, constantly fixated on “going home” and seeing her parents. But we know she still loves – every chance she gets when my wife is close to her, helping her stand or dress, she will kiss her, holding on tightly for a moment, letting that touch express her feelings.
I never did hear back from our hospice nurse, which is both disconcerting and disappointing, but since there didn’t seem to be a medical emergency to deal with, I didn’t want to keep calling her. This morning we will contact the hospice agency and see if they can help us out with some additional anti-anxiety meds for my MIL, since that seems to be the best thing for her at this time. Otherwise, we will do what we can to continue to make sure she feels comfortable, and safe.
Jim Downey
Those who dream by day are cognizant of many things which escape those who dream only by night.
— Edgar Allan Poe, “Eleonora”
A friend passed that along, from today’s Quote of the Day. It is very appropriate. Howso? Well, because for the last 24 hours or so we’ve seen a rapid deterioration of my MIL’s mental condition, including a lot of seeing people and things which are not there (at least in my perception). Further, she’s been holding conversations with these people and things, as though they are responding to her. And when you come into the room, genteel and considerate woman that she is/was, she wants to include you in the conversation, or explains what has been going on so that you don’t feel left out, and expects you to understand and participate. It is very disorienting, because there really is no logic or coherence to these visions, and the conversations are little more than word salad.
Further, her sleep habits have changed as well. She had been sleeping more and more, but all of a sudden yesterday afternoon she didn’t really nap, and last night she was awake more than she was asleep. My poor lady wife, who was on-call, had a very rough night of it (and I’ve sent her up to nap for as much of the day as she can).
We don’t know what is going on, and all my experience and speculation has been useless. I have a call in to our hospice nurse, and will discuss the situation with her, see if she has any thoughts on the matter. It could be as simple as a UTI (not that UTI!) , which is a common problem with dementia patients, and known to cause such symptoms. But we take prophylactic measures to limit the chance of a UTI in my MIL, so I would be surprised if that were the source.
Clearly, something is going on. Whether or not it is something we can or should try and correct, we’ll see.
Jim Downey
Filed under: Alzheimer's, Bipolar, Depression, Health, Hospice, Sleep, Writing stuff
We’re back to the train metaphor. My MIL has either been traveling via train, or is waiting for someone to arrive on a train, or is going to catch a train, or just thinks that she is presently on a train (this last happens when she’s in bed, with the bed safety rails up). I cannot help but think that this is her subconscious’ way of understanding that she is in transition from this life to whatever comes after. Why a train? Because when she was a young woman, that’s how she traveled, to St. Louis for shopping, back and forth to college.
* * * * * * * * * * * * *
But she doesn’t stop there. Yesterday morning I went to get her up from her morning nap, and she asked: “Is there a job or something I can do to earn some money?”
“Money? Why do you need money?”
“Well, to call my mother.”
“???”
“I came over here to play, and have been out playing on the grounds. Now I’d like to go home, so need to call my mother. But I was laying here thinking, and realized I don’t have any money!”
“Ah. Well, that’s OK. You can use the phone here – you don’t need any money.”
* * * * * * * * * * * * *
As I walked with the dog in the cold, stiff wind this morning, little pellets of spitting snow falling around me, I realized something I should have noticed a week or two ago: I’m a bit messed up. Lethargic, unmotivated, finding it difficult to concentrate even enough to write short entries for my blog. But I haven’t been sleeping well, either. I’ve been grumpy and short tempered, impatient and always feeling slightly annoyed. In other words, my mild bipolar condition crept into darkness, a slight depression.
Part of it is just the ongoing effort of being a care-provider, of course. Part of it is seasonal, with the grey clouds that settle in this time of year. And part of it is just personal, as we approach December 12th, the anniversary of my father’s murder. I’ve learned to expect something of a downturn this time of year, but it always seems to catch me off guard at first. You’d think after almost 40 years, it wouldn’t come as a surprise.
It’s not the vicious blackness of a full depression, and for that I am thankful. But still, it needs some tending – awareness, being a little more lenient with myself, a little more indulgent. Try to nap when I can. Worry less about my weight, enjoy some favorite foods in moderation. Work when I can, hope that my clients and readers will understand. Be as gentle with myself as I am with my MIL, at least for a while.
* * * * * * * * * * * * *
I was on-call last night. I first heard my MIL stirring around 1:00, but she settled back down again until a little after 2:00. The second time I got up, dressed, went downstairs to check on her.
I put down the safety rails, helped her sit on the side of the bed. At first touch I knew she was running a fever. I got some slippers on her feet, helped her onto the commode that sits beside the bed. Her eyes were watery, uncertain. Her temperature was 2.5 degrees above normal.
“Here, MIL, you need to take these pills,” I said, dropping her usual nighttime meds into the palm of her hand.
She looked at the pills, then at me, then back at the pills. “No.”
“???”
“I’ve already taken my pills. That woman was in here a few minutes ago, and I took them then.”
“Um, no, no one else has been here tonight. Maybe that was just a dream. These are your pills – you need to take them.”
“No!”
This was a completely new one – she’d never refused to take her meds before. “Um, yeah. You need to take those. Now. Here’s some water . . .”
“NO!”
It took me over 10 minutes of cajoling and commanding and pleading to get her to take the medications. She was adamant that she had taken them already, some memory fragment or bit of dream stuck in her head.
And it was almost two hours before I was able to get back to sleep.
* * * * * * * * * * * * *
She’s been cranky today. Stubborn, demanding, a bit petulant.
But also so very weak and confused. Perhaps another TIA. Or perhaps just another step down in her overall condition.
We’ll know more when the hospice nurse comes tomorrow. Or not. You learn to live with that ambiguity, that uncertainty. As best you can.
Jim Downey
(Cross-posted to dKos.)
Filed under: Alzheimer's, Book Conservation, General Musings, Guns, Health, Hospice, NPR, Predictions, Publishing, Science Fiction, Sleep, Society, tech, Writing stuff
As I’ve mentioned previously, I try and catch NPR’s Weekend Edition Saturday regularly. This morning’s show was hosted by John Ydstie, and had a very nice three minute meditation titled Reflecting on a Past Generation which dealt with the differences between his life and his father-in-law’s, as measured in physical weight and strength. You should listen to it, but the main thrust of the piece is how Ydstie’s FIL was a man of the mechanical age, used to dealing with tools and metal and machines, whereas Ydstie is used to working with computers and electronic equipment which is becoming increasingly light weight, almost immaterial.
* * * * * * * * * * * * *
Last weekend, as part of my preparations for tackling in earnest the big conservation job for the seminary, I got a large fireproof safe. I needed something much larger than my little cabinet to safely secure the many books I will have here at any given time. And about the most cost-effective solution to this need was a commercial gun safe, the sort of thing you see in sporting goods stores and gun shops all around the country.
So, since a local retailer was having a big Holiday sale, I went and bought a safe. It’s 60 inches tall, 30 inches wide, and 24 inches deep. And it weighs 600 pounds.
And the retailer doesn’t offer any kind of delivery and set-up.
“Liability issues,” explained the salesman when I asked. “But the guys out at the loading dock will help get it loaded into your truck or trailer.”
Gee, thanks.
So I went and rented a low-to the ground trailer sufficiently strong for hauling a 600 pound safe (I have a little trailer which wouldn’t be suitable). And an appliance dolly. And went and got the safe.
When I showed up at the loading dock and said I needed to pick up a safe, people scattered. The poor bastard I handed the paperwork to sighed, then disappeared into the warehouse. He returned a few minutes later with some help and my safe, mounted on its own little wooden pallet and boxed up. The four guys who loaded it into my trailer used a little cargo-loader, and were still grunting and cursing. I mostly stayed out of their way and let them do the job the way they wanted. Liability issues, you know.
I drove the couple miles home, and parked. And with a little (but critical) help from my good lady wife, it took just a half an hour and a bit of effort to get the safe in the house and settled where I wanted it. Yes, it was difficult, and I wouldn’t really want to tackle moving anything larger essentially on my own. But using some intelligence, an understanding of balance, and the right tool for the job I was able to move the 600 pound mass of metal with relative ease. And it made me feel damned good about my flabby own self.
* * * * * * * * * * * * *
In contrast, the most difficult things I have ever done don’t really have a ‘weight’ to them. Communion of Dreams took me years of hard work to write and rewrite (multiple times), and yet is nothing more than phantasm, able to fly through the internet and be read by thousands. There are no physical copies to be bought, shared with a friend, lugged around and cherished or dropped disgustedly into a recycle bin. It is just electrons, little packets of yes and no.
And these past years of being a care provider, how do I weigh them (other than the additional fat I carry around from lack of proper exercise and too little sleep)? I suppose that I could count up all the times I have had to pick up my MIL, transfer her between chair and toilet, or lay her down gently on her bed. But even in this, things tend towards the immaterial, as she slowly loses weight along with her memories of this life. And soon, she will be no more than a body to be removed, carried one last time by others sent by the funeral home.
How do you weigh a life?
Jim Downey
It was the second time I’d been in this morning, checking to see what the sounds I’d heard coming over the monitor were all about. My MIL was over next to the side of the bed, almost up against the safety rail.”Are you OK?”
“Yes. I was just trying to turn on the lamp.”
The lamp is deliberately out of her reach, otherwise she’d turn it on in the middle of the night in her confusion. “Why did you want the lamp on?”
“So that they could find me.”
“Who?”
“The people who are coming for me.”
Ah. “Well, until they come, is there anything I can get you?”
“Do you know where my toothbrush is? And toothpaste?”
“Yes. They’re in the bathroom.”
“You’re sure?”
“Yes.”
“Well, I don’t want to forget them.”
“We won’t forget them. And we won’t let anyone else use them.”
“You promise?”
“Yes, I promise. Now, see if you can go back to sleep. It’s still early.”
“OK.”
* * * * * * * * * * * * *
After my last post, and other conversations, my wife’s sister decided to come in a week early, rather than wait until her scheduled visit starting the day after Thanksgiving. She didn’t want to miss seeing her mom one last time before the end, since it seemed so sure that the end was close.
She got in late, and we chatted a bit before she retired. She asked how her mom was doing.
“Not bad. Of course, now that you’ve rearranged your schedule to be here I’m sure she’ll live until January or something.”
“Yeah, but had I not come early, she would have died this week. That’s the way of it.”
“True enough.”
* * * * * * * * * * * * *
There’s a common phenomenon with Alzheimer’s patients which has been known to drive care-givers nuts: that for short periods, they can rise to a level of lucidity which makes it almost impossible to tell that they are suffering from the disease. This usually happens in response to the visit of company, particularly family members, whom they don’t get to see often. As a result those family members will have a decidedly mistaken impression of how their loved one is doing, and will wonder whether the care provider has been over-dramatizing things, or what. It is insidious, in that it undermines the support the day-to-day care giver gets from the rest of the family, who think that things really can’t be as bad as they say. And it leads to a lot of tension between the care giver and the patient, since the care giver will sometimes resent the ‘performance’ put on for other family members but not them.
The solution to this is to have a family member stick around long enough that the facade fails and the true condition of the patient is shown. Since my SIL usually comes to visit for a week or more, this always happens with her mom, and she has come to expect it. This time, however, the period of performance was extremely short, reflecting my MIL’s deteriorating condition. I think that, as much as anything else which has happened in the last ten days, told my SIL that she was right in coming early.
* * * * * * * * * * * * *
It was the third time I came into the bedroom. “What are you doing, MIL?”
“I want to get up.”
“Well, it’s early still. You don’t get up until 8:00. See, the clock says that it is only 6:50.”
“But I have to get up early to get to school!”
“Don’t worry, today is Saturday. There’s no school on Saturday.”
“Oh, OK. ”
* * * * * * * * * * * * *
I was napping when the Hospice nurse came to visit this past week. Because of the holiday the schedule was rearranged, and she came in the middle of the afternoon rather than first thing in the morning. I’m trying to do a lot of sleeping now, banking it while my SIL is here to help out, because the coming weeks are likely to be even more demanding. So I didn’t get to hear what the nurse had to say. It sounds like it was the usual routine – slow decline, we’re doing all that can be done, let her know if there’s a problem.
* * * * * * * * * * * * *
My MIL started choking and coughing at the dinner table, disconcerting the other family members who were over for the big Thanksgiving meal. As she coughed spasmodically, her face turning red, my wife and I looked at her, and in unison called out loudly “Take a deep breath. Real deep. Hold it. Now cough real hard.”She did, and it cleared the blockage caused by aspirating some of her food. In a moment she was back to eating, her attention focused on the food before her, mostly oblivious to the reaction around the table.
“That’s the best way to clear it – she just had a bit of something go down the wrong way,” I said to the others. And from the look on their faces I realized that my wife and I must’ve appeared unconcerned and relaxed in the face of what seemed to be a sudden crisis. My SIL nodded.
* * * * * * * * * * * * *
I came down from a nap this afternoon, came into the kitchen where my wife was doing some baking. The monitor to her mom’s room there on the counter, the sound of my MIL snoring emanating from it.
“Good nap?”
“Yeah.” I nodded at the monitor. “How’s she doing?”
“Pretty well. We got her up from her morning nap, and she wanted to know where her mom was. Said that she had been in bed with her just a little bit earlier.”
“That’s becoming pretty common.” It has – my MIL has said some variation on this almost every day for the last week.
“Yeah. She’s close to the veil, but fighting with everything she’s got.”
* * * * * * * * * * * * *
Jim Downey
(Cross posted to dKos.)
It has been a difficult week in caring for my MIL. As noted previously, we went to a three-day trandsdermal patch to help with the pain associated with her aspiration and breathing difficulties. And that has worked pretty well. But as I suspected would happen, after her trial period with the oxygen she didn’t want to use it any longer – even when she was laboring to breathe and I offered it to her, she declined. Only once, when she was having a coughing spasm, did she consent to put up with it again. This means that she has continued her slide, probably at a faster pace than were she using the oxygen. It is a tough thing to watch.
* * * * * * * * * * * * *
After a particularly rough patch of it yesterday morning, I was helping her from the toilet to her usual seat in the front room, where she likes to sit and look at magazines. As we transitioned from the wheelchair to her comfy chair, and I got her settled safely there, she looked up at me, her frail thin arms still around my neck, her light brown eyes clear for a moment, and said “thank you, son.”
In the over twenty years I’ve known her, in the twenty years I have been married to her daughter, she has never once before called me “son.” In fact, since my own parents died almost 40 years ago, no one has called me that for a very long time. It was a strange word to hear directed my way. And it touched me like no other thanks she has ever offered.
* * * * * * * * * * * * *
She had a restless night last night. I was ‘on call’, and consequently didn’t get a lot of solid sleep. After I had been downstairs early this morning, trying to get her to settle down through one of her (fairly rare) combative fits, it hit me: we’d screwed up and not replaced her duragesic patch late afternoon, like we should have. Meaning that the opioid in her system had been tapering off for about 12 hours, with nothing else to mitigate the effects of pain. And with all the other difficulties her brain faces, that extra pain causes unpredictable effects.
I mentioned this to my wife, who woke somewhat as I came back to bed. Shortly thereafter, we were back downstairs, getting a new patch on my MIL, and getting her something else to relieve her pain more quickly than the patch would kick in. As we were getting her tucked back in, she whispered to my wife, asking: “who is that strange man?”
* * * * * * * * * * * * *
Lisa, our hospice nurse, did her routine check of vitals, asked the usual questions about changes we’d noticed. After spending an extra long time with the stethoscope, she looked over to me and my wife, an honest but pained look in her eyes.
Later, after all the rest was done, she chatted with us on the front porch, my MIL again sitting in her comfy chair in the living room. “Yeah, there’s a lot more crackling all over her lungs.”
This came as no surprise. I’d been able to hear it myself, just in my MIL’s routine breathing. But it was a substantial change from the aspiration congestion being confined to just one part of one or another lung.
Then she added: “And her heartbeat is much more irregular.”
Ah. I asked, already knowing the answer: “Is that . . . significant?”
“Yes.”
* * * * * * * * * * * * *
My wife’s older sister is coming to visit from California beginning Thanksgiving weekend. Last week I was worried that my MIL might not last that long, given how things had been going. The beginning of this week I had changed my mind, since the duragesic patch seemed to help so much.
Now I’m not sure again, even though we are a week closer to Thanksgiving.
That may be the toughest thing about this, the not knowing. I mean, there are few of us who know in advance the how and when of our deaths – I’ve long accepted that, having lost both parents suddenly (and separately) just as I was on the verge of adolescence. But when you are dealing with a terminal illness, such as hospice usually aids with, you usually have some kind of time-frame that everyone understands. This is different – this isn’t cancer, or a fever, or some other relatively simple cause & effect. This is a general debility, prolonged by our caring and care giving in a way that both breaks your heart and makes you proud.
Jim Downey
(Cross posted to dKos.)
Filed under: Alzheimer's, Book Conservation, General Musings, Health, Hospice, Predictions, Sleep
Last Friday I dropped a note to the Library Director I’ve mentioned in this post about this big project, basically asking why I had yet to see payment for my work when I’d been told I should see it as early as 10/19. I got the following reply right away:
Thanks so much for letting us know. We turned in the invoice and will go tracing the situation. Again I apologize for this delay. You should not have to ask these things. We are in a transition period with a “temporary” agency helping us out in our business office until we can hire some staff. I’ll ask Mr. R to also help us with this situation and we will write you probably next week with any details.
*Sigh* Beginnings are fragile times, as we learn to dance with someone new. Is this delay a portent of things to come – will I always have to hassle them to pay their bills on time? Or is it just a fluke, an unfortunate glitch which means nothing? I replied this morning:
Thank you – any help you can provide to expedite payment will be greatly appreciated. I’m somewhat distracted by our hospice care-giving for my mother-in-law at this time and don’t have the attention to spare trying to track such things down.
So we’ll see. And I mention this because it does sort of sum-up how I am feeling now, as we enter into the closing weeks of my MIL’s life: distracted, tired. Yes, we’re now getting more sleep, and that helps a great deal – but still, the emotional stress has cranked up along with the demands of routine care giving, as I have tried to outline in all my posts related to this. I do have work to do, as does my wife, and then there is the routine of just getting through the needs of ‘normal’ life. But to a certain extent such concerns fall by the wayside as we turn more of our focus to giving my MIL a good death, as comfortable and pain-free as possible – all the while trying our best to pace ourselves, since we have no way of knowing exactly how much further this marathon has to go.
Jim Downey
*** Update, 10:00AM November 5 ***
Got word back from the client:
Good news. The check was sent out Friday (November 2), so you should receive it within a day or so. As suspected, the turbulence in our business office is to blame for the delay. We apologize again.
So, provided nothing gets ‘lost in the mail’, looks like we’re off to a decent start. With institutional clients, I usually expect them to take upwards of a month to process payment, and this client would not be tardy.
Fingers crossed.
Jim D.
Filed under: Alzheimer's, Hospice, movies, Science, Science Fiction, Star Wars
When my MIL’s hospice nurse was here the week before last, she clearly saw a decline in my MIL, as I noted here. What I didn’t mention in that post was that one of the things she suggested we consider was to move to a transdermal patch to help alleviate some of the pain associated with the breathing difficulty my MIL is starting to develop. (When people start to develop pulmonary aspiration problems, the coughing and gagging can be quite painful and cause a great deal of distress for both the patient and care providers.) Pain relief and comfort are our primary concerns with my MIL, but choosing to go to a derm patch of a powerful drug could well contribute to hastening her death – a common concern about all opioid-class drugs with the elderly. My wife and I discussed the matter, agreed that it was an option we should consider if conditions worsened.
Well, when Lisa (the hospice nurse) came this week, it was clear that my MIL had continued to develop aspiration congestion in her lungs. And we’d seen several instances of very painful and frightening coughing fits, usually late in the day when she was tired. My MIL was exhibiting additional effort at breathing even when just sitting at rest. We talked it over again with Lisa, and decided to give the derm patch with the lowest dosage a try, in spite of the potential problems.
Lisa also recommended using an oxygen supplement for my MIL, to ease her breathing problems. We discussed it, and agreed to give it a try. Lisa left, saying she’d make the arrangements for getting the derm patches to us, and would have an oxygen set-up delivered to the home, both that afternoon (this was Friday).
The guy from the medical supply place called, then came over to deliver the oxygen machine. We got a back-up tank of compressed oxygen as well. He walked us through the operation of this machine, which concentrates O2 from the air and delivers it in a regulated flow at whatever volume you need. It’s about the size of a kitchen trash can and sounds just like the food cooker ‘Aunt Beru’ was using in the original Star Wars movie.
When my MIL got up from her afternoon nap, we got her settled in her chair in the front room, where she usually looks at magazine and whatnot. And we showed her the new oxy set-up, explained that it would help her breathe when she was sitting up. To say that she looked on it with a dubious eye would be understatement. I’ve mentioned before that Alzheimer’s patients don’t respond well to change, and as far as she was concerned, this new-fangled thing with the tubes coming up to her nose was just more than a little weird. But we convinced her to give it a try.
A short while later Lisa came by with the derm patches. We got one on my MIL, and discussed how we should change the mix of her other pain meds once the new drugs got into her system (a derm patch takes 12 -18 hours to saturate the system, then delivers a constant dosage for a period thereafter, in this case about 60 hours). Lisa also checked to make sure we had the oxy set-up correctly, just to be sure. Everything was fine.
So, results since then? The new pain meds have definitely helped my MIL. She has been sleeping better at night, and seems more free of pain. But she has also been inclined to just stay in bed more, particularly the last two mornings. The oxygen has also been a clear help, and she is working less hard to breathe when she is sitting in her chair.
The difficulty is that she pretty clearly doesn’t like the oxygen delivery system. The tubing coming up to a simple cannula is strange and distracting, and she wants to fuss with it or just take it off altogether. We told her that we wanted her to try it through this weekend, to see if she could get used to it, but that if she still didn’t like it, we wouldn’t force her to wear it.
Because while this would probably lengthen her life, if it is decreasing her ‘quality of life’, it isn’t worth it. It is the exact flip side of the ethical considerations of whether or not to use the transdermal patch, where quality of life is improved but there is a risk of shortening her life. And that’s not a neat and easy calculation to make. We know that she is entering the final weeks of life, but there are no clear mile-markers indicating just exactly where we are on this journey. We want her to enjoy as much life as she can, but that is a judgement call as to whether it is better to go for a longer period, or for more comfort.
And no matter what choices we make, we can never be entirely sure that they were the right ones.
Jim Downey
(Cross posted to dKos.)
Communion Of Dreams 