How everything still turns to gold (our home hospice experience #5)

It’s getting harder. Much harder.

D. is in a new phase. Her ability to draw breath is deteriorating by the day, leaving her more uncomfortable. With this discomfort comes all sorts of emotions for all involved. For us, it’s sadness, dismay and even incredulousness when she’d choose to go have a smoke even when it took her the better part of an hour to cross the room to the door outside. For her it’s mostly anger and resignation; anger when she can’t do something she wants to or feels trapped by her own body – trapped in a room, trapped by the unrelenting parade of treatments and scheduled medications, trapped by the condition she’s forced upon herself. It’s easier sometimes to be angry at us for pushing yet another breathing treatment or dose of nasty-tasting morphine than to face her anger at herself for getting her here. Or so I presume.

But even this phase has largely passed. D’s breathing discomfort has reached a point where she requires ever-increasing doses of the morphine to make breathing possible. And yeah-it seems counter-intuitive to give morphine to someone who can’t breathe but it does actually work. It relaxes her from trying so hard to inhale that she’s tense and laboring and just lets her breathe as best she can. The downside of this is her morphine intake is at a level that she’s largely lost sight of reality. She mostly knows who we are but isn’t entirely sure where she is or why we’re keeping her here. After each dose – every 90 minutes now – she has an hour or so of relative comfort and ease. Then she becomes either paranoid or angry, sure we’re up to no good. She’ll ask questions: “when do I go home?” or “who lives in this place?” Or even “who are you?”. We’ve learned to roll with these questions and answer best we can without trying to inject logic that she can’t process.

And we have our moments of fun, too. Last night, when she was having difficulty orienting herself in her current location, Mike had her at the window and was pointing out the neighborhood homes and who lived where – many of whom she’s met. At that very moment, a couple walked by, (presumably) dressed for some sort of party with shiny silver Mylar wigs on their heads. WE freaked a bit, assuming this was a very bad thing for a morphine-addled person to see. D took it in stride – it was the blinds at the house across the way that had her more concerned. (They were opened just enough for someone to watch her, she felt).

And the guy who treated our asphalt driveway (and has for years) noticed D in her room and all her medical accoutrement and brought a large bag of leaves and dried greens that he called “the herbs from Africa” and a tea made with these “herbs” would fix her up good. Seems it “cures the cancer, fixes the ‘rheumatiz’ and everything else that ails you. Mike asked what kind of plants were in there and was assured it was simply “the herbs – granny sent from Africa”. We have yet to try “the herbs” tea but maybe Mike and I will at some point. If it cures all, why the hell not? 😉

All that aside, it’s safe to say we’re on the downslope of our journey. There will be ever more morphine at ever shorter intervals. At some point, we’ll stop being able to get her to take her other pills and the breathing treatments that give her some increase in O2 intake efficiency. At some point it will be all morphine.

How soon this happens, I have no clue. It does feel like its moving faster – that the snowball is speeding up down the hill. We’ll deal a day at a time.

Thanks to all who continue to read these rambles – means the world to me. Please let me know if you want to hear more or have questions. Or if you’ve been through this, I’d love to hear about your experiences. But most of all, thanks.

And Happy Mother’s Day to D – and all of you moms out there.

There walks a lady we all know (home hospice experience #3)

And exhale

Balance is everything

Balance is everything

Our hospice experience continues. We seem to be finally hitting our stride in many ways, these days. We’re getting the routine down – medications, meals, wake, sleep, etc. We’ve met all of the various hospice-provided staff, from nursing aides to social workers to chaplains, and all are lovely and dedicated people. We’ve rearranged the room a few times and are happy with the current configuration. And, probably most importantly, we’re finding the balance of medication – i.e.: morphine – to help D feel comfortable and breathing easy but not too groggy and out of it. And by “we”, I of course mean my husband. He’s leading the way here – I just follow directions. For now, we have a certain balance.

It’s the great unknown – the what happens next just waiting out there to upset our applecart – that haunts us.

Right now things feel good. D is comfortable and happy. She’s fully present and participating in life, albeit from a hospital bed. Yes, she’s a bit muddled from time to time – losing the threads of conversation, for instance – but she is on a steady diet of morphine; however low the dose, it has an effect. She’s eating very well – better than she has in some time, I think. We have a stylist coming in every few days to shampoo and dry her hair so she feels good there too. From where we’re sitting right now, that answer of “you should think in terms of weeks” when we asked “how long” seems way too pessimistic. We’re rocking this whole thing, right?

What we don’t know is how quickly her lungs will continue to deteriorate. She’s getting regular breathing treatments and is on oxygen all the time but her issues are mainly around her inability to exhale effectively, rather than inhale. Having oxygen on doesn’t help significantly because only so much of it can get in because the CO2 in her lungs is taking up the real estate. She’s on breathing treatments regularly that alleviate this somewhat but the damage is already done – it won’t get any better. What we don’t know is how quickly and what will happen. She’s hospice; she isn’t on monitors so we don’t know, for example, what her blood oxygen levels are at but we know they aren’t good. We briefly considered getting a blood O2 monitor ourselves but decided that would only become a number for all of us, especially D, to obsess about. And there is not a damned thing we can do to truly affect it so why go through it?

balanceSo we go, day by day and week by (hopefully) week. We’ll take what comes when it comes and will do our damnedest to be as ready for it as we can be. For now, we have a precious gift of comfort and conversation and we’ll make the most of it.

Thank you to everyone, both friends and strangers, who have taken the time to read these posts and leave me your own words of experience, strength and hope. It means so much.

Our shadows taller than our souls (home hospice experience #2)

Abbie Cat (under the blanket) watching D watch Buster Keaton.

Abbie Cat (peeking out from under the blanket) watching D watch Buster Keaton.

And our hospice experience continues. D has been home since Tuesday afternoon and we’re all trying to get our feet under us and settle into some sort of rhythm. We’ve got the bed and furniture set up and added a few items from her home, including some paintings and personal objects. That’s all well and good but most importantly, D’s kitty Abby has moved into her new home here. How very happy they were to see each other! Abby has settled right in and spends most of her day on the bed with D.

Naturally, there are challenges; each day brings its own set of “OMG, what do I do now?” moments. D is on some serious medications, including morphine and fentanyl, which do a lot to help her breathe easier and ease anxiety but don’t do very much for mental acuity. Combine these meds with the challenges that come from low blood oxygen levels and we’ve got some serious confusion on our hands. Some of it is to be expected – losing the thread of a conversation or being unsure of day, time or location but it also manifests itself in odd ways – sudden anger about things like the order she takes her pills (round ones go first, we’ve learned), for instance. We just roll with it and it all seems to sort itself out. My husband has depths of patience and caring that are amazing to behold.

We did have a fairly big deal to handle early on, though. D is a smoker. It’s her smoking that got her to this condition and it’s her smoking that will eventually bring her to her end. Knowing and understanding this, however, doesn’t mean her desire to smoke has gone away. As any smoker knows (and both my husband and I are ex-smokers) this is one terrible bitch of an addiction – one that defies any rules of logic or common sense. So, it wasn’t too much of a surprise that D wanted a cigarette not long after moving in here. Handling a request like this is certainly not in the hospice handbook! Husband consulted with her doctor and the visiting hospice nurses and their advice was unanimous and unambiguous: give her a cigarette. Their contention was the cigarette itself was not going to do her any true harm at this point but the anxiety and other symptoms of withdrawal certainly would. This was, needless to say, not a popular opinion among all of D’s family but my husband agreed with the experts and bought his mom a pack. Each day, they go outside and she has a few puffs on a cigarette. That’s all, just the one, and she’s so much happier. Hard to argue with this one.

As I see it, our job here is to help her feel as comfortable and anxiety-free as possible. Quality of life and comfort, to the best of our ability. If that means she wants her cat, she gets her cat. If she wants nothing but donuts for a day, she’ll get donuts. (Although we might slip some fiber or vitamins in somehow). It’s about D and her wants – not what we think she should want or what we’d feel better about her wanting. It’s her life and her death – we’re just the back-up singers.

Siobhan in cosplay costume

Siobhan in cosplay costume

Incidentally, while she may be a bit addled about where she is or what she’s doing at any given time, she’s completely on the ball in areas you might never expect. My daughter is an active cosplay fan so hits the “Cons” whenever they’re in town. This weekend brought a ComiCon type event so she dressed up as a character from the online comic Homestuck. My husband asked her to stop in and see her Gran before she left – I wasn’t so sure how that was going to play out – how would the lady who isn’t quite sure who’s currently living in the White House handle her granddaughter popping in wearing a black wig and horns? As it turns out, she LOVED it. No uncertainty or confusion about the horned girl – just delight. And delight is exactly what the doctor ordered.

And as we wind on down the road (home hospice experience #1)

My mother-in-law is dying.

Hard words to say about a lady I have known for 22 years now and love very much. Hard words to say when I know the affect they are having on my son, my daughter, my step-daughter, my niece and, more than anyone, my husband and his sister. Hard words to say, in spite of the fact we’ve known it was coming for some time now. Just hard words to say.

Mike gazing at a beautiful sunsetDianne is a smoker. I guess I can say was a smoker now, because she officially “quit” last Friday when she went into the hospital for the last time. She’s been battling COPD and emphysema for some time now – depending on the brief bits of respite her inhalers and nebulizers offered in order to continue to function. We’ve known for some time her condition was worsening but weren’t so prepared for the sudden decline in recent weeks. No level of logic and understanding of the inevitable consequences of smoking makes it any easier to accept when the doctor starts saying words like “nothing we can do” or “hospice”.

I’ve done this hospice thing before, of course. When my father died a few years back, we used hospice care for his final days. I’ve been through the meetings with caregivers and nurses, organizing the delivery of hospital equipment, learning to handle morphine administration and, worst of all, signing the papers that said yes, my father wasn’t going to get any better. This time it’s a bit different. I’m almost, but not really, on the outside looking in. I’m not responsible for the decisions, I’m not signing the papers, I’m not talking to the doctors and nurses. That’s all up to my husband and his sister this time. I’m involved, of course; Dianne will be living out her last days here in our home. I will be providing some care, supporting those who need supporting and generally keeping the basics humming so my husband can dedicate himself to his mom. But supporting is not the same as responsible. I’m not in charge this time around.

It will be quite a roller-coaster over the next few days and weeks. I say weeks, because that’s what we’ve been told to expect. All I can say right now is how proud I am of my husband for taking this on and my children for bravely welcoming this into their home. It’s no small thing my family is doing and I’m nothing but proud of them for doing it. Dianne is loved – wish us luck as we help her on her way.