And she’s buying a stairway to heaven (home hospice journey #7)

It is done.  We lost our lovely Dianne 1 week ago on Thursday, 5/16, at 10:15am.  Her passing was peaceful – far more so than we dared to hope for with a COPD patient.  She’d had a rough Tuesday night and difficult Wednesday morning but as her day progressed, she gradually slipped into a semi-comatose state by evening, with that rattling sort of breathing that means we’re nearing the end. We settled her in bed and made her as comfortable as possible and settled in to keep watch.  Around midnight, I headed off to bed with the intention of taking over in the morning and letting my husband get some rest.  Once my daughter was off to school (my son saw the writing on the wall, so to speak, and refused to leave), I got settled into place and sent Mike off to get some rest.  

Mostly I hung out bedside and got a bit of work done on my laptop.  Every so often, I’d get up to ensure she was comfortable. I noticed at one point that she was warm and a bit sweaty so took off her socks and bathed her face a bit.  I kept watch on the color of her lips and fingertips and listened to the rhythm of her breathing – mostly so that if anything noticeably changed, I could go get Mike.  None of that happened.  She was breathing one moment and the next, she wasn’t.  There was no gasping, nothing erratic, no sound.  She simply was and then she wasn’t.  I ran to wake up my husband to let him know his mother was gone.

All of the official hustle and bustle of a passing began: hospice was called, the police came, the cremation service notified.  Forms were signed, i’s dotted, t’s crossed.  Once the legalities were complete, Mike laid back down for a bit and I did some straightening up – stripping the bed, packing away clothing and supplies, that sort of thing.  

Things feel a bit unsettled.  Dianne’s wishes were to forego the whole funeral home and service thing and instead transport her ashes as a family to a park in the Bitterroot mountains of Idaho, to be scattered in a place that she loved dearly.  We’ll make that trip later this summer.  In the meantime, the healing needs to begin.  It’s a long road we’ve been on and we all need a bit of rest.  I’m so glad her passing was peaceful and serene. Hopefully she left a bit of that peace and serenity in her wake. 

Thank you all for the support and just for reading. Your presence is felt and appreciated.

And if you listen very hard (home hospice journey #6)

Short entry tonight. It’s been a long day.

Our journey is soon to come to an end, it seems. D. Is mostly quiet; what energy she has is dedicated to continuing to draw breath. She’s at pretty close to the safe dose of morphine, which seems to keep her fairly peaceful. My husband witnessed his great aunt’s death to the same cause – cigarettes – that was not morphine-assisted and said it was pretty brutal. I’m glad that she’s getting whatever peace she’s getting.

So, it may be tonight ( but I don’t think so, for whatever reason), it may be tomorrow but it will be soon – that I know.

When my dad died, he spent the last few days calling my mothers name. He’d had a stroke – a severe one – and this was the only word we heard from him after that. Just “Mary”, every so often, while gazing into the distance. I hope D feels the presence of those she loved waiting to welcome her too.

And now I sleep for a bit.

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.

Who shines white light and wants to show (home hospice experience #4)

For those just tuning in – this is another entry in my ongoing series about our journey through home hospice (our hone) with my mother-in-law, who is dying of emphysema.

Yes, I’m well aware of the “elephant in the room” meaning of this photo choice…

Things are coasting right now. D seems to be feeling better by the day. Why? Well, lots of reasons, I think. She’s eating good food and eating well at every meal. This is a big change because she’d been feeling so poorly for so long that her eating habits had really deteriorated. When we weren’t coming over with meals, she existed largely on frozen dinners, cookies, tea and the ever-present cigarettes. Nothing fresh, nothing that’s actually “real” food. She’s getting that now and it’s likely making her feel better. She’s hydrated. Yes, she still drinks a lot of tea but she also drinks a lot of water too so not all of her fluid intake is of a natural diuretic! She’s sleeping. 8-9 hours every night, plus naps here and there. And yes, there’s the drugs. The combo of morphine/xanax/fentanyl keeps her relaxed (!) and the frequent and consistent high dose steroid breathing treatments keep her remaining lung capacity, such as it is, operating as best it can. She’s also regaining her strength – she’s up and around quite a bit, wandering the family room, her bedroom and outside to the back porch. This is all wonderful. It is delightful to see her enjoying her days.

What isn’t so wonderful is her strength, her mobility and her delight in feeling so much better means she’s also smoking again with a vengeance. When she first came home to us and asked to have a cigarette, it wasn’t a big deal. She was weak as a newborn kitten and just as dependant. If she wanted a cigarette, she needed my husband to help her into the wheelchair, wrap her in a blanket, wheel her outside, hand her the smoke and light it. She’d draw in a few puffs before she tired of it and asked to go back inside. She only requested it every few days or so. It was largely ceremonial; a “see, I still can”. Now that she can do this under her own power, that’s changed. She’s grabbing her jacket and heading out on her own several times a day – maybe even 8 or more. Is it hard to watch? Heartbreaking? Is it her choice? Yes, yes and yes. Why? I think it’s a lot of things. She’s feeling better right now than I think she has in a year or more. I think that, along with drugs that will naturally imbue a sense of euphoria have maybe given her bit of a “second wind”, if you’ll excuse the expression. A feeling that perhaps it’s all going to be fine and these damned cigarettes aren’t going to kill her after all.

Yep, still flammable.

On a side note, we did have to have the hospice nurse, during one of her twice weekly visits, give D a stern lecture on the dangers of open flame and oxygen. When we weren’t watching, D would toddle out to the porch, take off her oxygen canula, hang it over the back of her chair – still running full blast – and light one up. How we haven’t all blown up by now, I’ll never know. Even though she’s been on nearly full-time O2 for over a year, D insists no one ever told her this wasn’t the safest of set ups. (Even worse, in her own home, she was indoors and doing this!) Now she has to remove the canula, turn the machine off, go outside, have her cigarette, come back in, turn it back on and start breathing air again. This is tough stuff, especially right after a smoke, so the 15 or so feet from the porch to her bed without her air on takes 6-7 minutes or more. She can’t breathe and has to stop and rest every step or two. Will it slow her down? Probably not. She has the energy and the drive to get out there just fine. She’s not considering the tough trip back in afterwards, just the gratification right now.

We don’t know, of course, what this means for her lifespan. I think it will likely cut this period of relative well-being shorter than it might be. It certainly isn’t doing her lungs any bit of good at all – either the smoking or the time off oxygen smoking requires. Nor is it doing her brain any good either – every moment with diminished O2 to the grey matter makes for another blow to her mental acuity. It’s so painful to watch but it’s her lungs, her choice and her life to spend as she wishes and this is what she wishes. She’ll spend her last days servicing the gods of addiction that are killing her.

I have no idea if these posts mean anything to anyone but myself and a few scattered friends and family. But they do help me to record what’s happening and it’s affects on all of us. (affect or effect? damn, that one gets me every time!) If you have your own stories of this journey, please share. In the meantime, thanks for coming by – even a click of the “like” button tells me someone’s paying attention and cares a bit. Thank you. And I do promise to get back to posting on some less weighty topics soon – this blog, and my own psyche, could use the break!

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

And exhale

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?

So 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.