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, there's an "elephant in the room" implication with this photo choice too

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.

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

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.