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!

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.

 

 

Now this is exciting news…

I’ve been sitting on this one for a little while…

Check out the new Parents-space.com!

Check out the new Parents-space.com!

There’s a new home for parents on the web.  Parents Space is intended for those of us who aren’t perfect, who don’t have all the answers. It’s a collection of parents of every stripe, from all over the world, talking about the issues that are meaningful to them and supporting each other. The brainchild of fellow WordPresser, Einat Skaked, this is the site for parents who have “lost their manual” (or, as in my case, was never issued one in the first place.)  And I’m pleased to say that I get to be one of a whole host of contributing writers.  It’s a wonderful and talented group I get to hang out with here.

I do hope you’ll come check us out!  And hey, we’re just getting started so why not tell a friend or two?  Maybe read a few posts, click a few likes, Tweet a bit?  You know, help us settle in and feel loved.

Thanks – and please, I’d love to hear comments!  Tell me what to write about!

 

A coming out story – how not to tell your parents

Wave the flag!

Wave the flag!

 

My daughter is many wonderful things: she’s beautiful, she has a razor sharp wit, she loves children, animals, art and music.  And oh yeah, she’s gay.  This is not a story about parenting a gay child or coming to terms with having a gay child or any of that jazz.  She’s gay, that’s cool, we’ll deal with what we need to deal with as she lives her life and support her however we can (that doesn’t result in her living at home till she’s 35, that is).  This is a story of the day our daughter decided she was ready to come out to those people most important in her world, and by that, I mean her close friends, some neighbors (who heard from their children, from the close friends group), her social media circle and then, oh yeah, her parents.  The order in which this information was spread was not necessarily her intention but it is how it worked out.  Hell, I think the cats knew before I did.

This happened a year or so ago – more or less.  I’m not entirely sure what filled our day that day but I do know it was a Saturday.  We all had our stuff to do and our places to go.  Our morning was likely filled with getting the kids up and out the door to their various private music lessons and back home again. Other stuff happened – it was a typical Saturday. At some point during the course of the late afternoon, I had to stop at a neighbor’s house – good friends of ours – and pick up my son who had spent part of his afternoon playing video games with their son.  As is usual when I run into these folks, the boy got an extra half hour of video time because the grownups got to chatting. In the course of my conversation with this lovely couple, one of them remarked at how proud I must be of my fearless daughter and how wonderful it was that she was so open and willing to talk about her identity.  The conversation went on along this thread for some time, with me smiling and nodding but having no real idea of what they were referring to.  I discovered later, of course, that my daughter had talked to her friend, who then mentioned it to her parents – the couple in question.  Frankly, their daughter should also be congratulated for being so open with her own parents about my girl’s revelation.

DAAfternoon wore into evening and we all went about our business.  My husband and I were getting ready for bed when I noticed a Facebook alert.  My daughter had posted a note on my and my husband’s walls:  “Mom, Dad, look at this:”  with a link.  The link, as it turned out, led to her Deviant Art profile page (DA is a social network for artsy types) where there was a simple message posted.  “I’m bisexual”.  Well okay, then.  Not what I was expecting to hear and certainly not HOW I’d expect to hear it.  Suddenly, things became clearer – this is the “brave, fearless move” she’d made earlier that her other friends already had seen and their parent’s discussed.  She’d posted this news on her DA page and word got round but as I didn’t look at her page that day, I didn’t see it when everyone else did.  She finally got sick of waiting and took the Facebook post route.

We called our daughter in to talk to us.  Nothing too deep – just that we were glad we knew and that we loved her and yes, she was very brave for being so honest.  Leave the bigger, deeper conversations for another day – the “how did you know?” and “how long have you known?” and “why the hell did you decide to use a social network used by almost a billion people to tell us?”.  Frankly, we treated it rather matter-of-factly; not to diminish the importance of her declaration but rather to make it not feel like a crisis or SOMETHING WE MUST DISCUSS.  Little by little, over the following days and weeks, more came out about her feelings and hopes.  She felt more comfortable talking about things like how it felt to be open and whether she felt accepted by her friends.  A month or two later, I noticed that her Facebook profile page listed her as “lesbian”, not “bi” any longer.  (See, I’m learning – I need to stay on top of these updates!)  I did ask her about that and she confessed that she never actually was bisexual – she just thought it might be easier for us if we did the transition from straight to gay gradually.  Uh, sure.

Here’s the important thing.  She’s my daughter.  I love her no matter what.  I am in awe of her bravery and ability to hold her head high and say to the world who she is.  Gay, straight, blue or purple, she’s my girl and my dearest hope is for her to be happy in her own skin and lead a fulfilled life.  My and my husband’s job is to support her while she grows, protect her when she needs it, comfort her when it’s hard and keep on pushing her to be her best her.  How we do that – who knows?  We’re learning as we go along, much as we are with our son.  And there’s a ton I don’t know – are her needs different?  I’d love to connect with folks who have been through this – both parents and those who have come out – to understand what I don’t know.  If you’re gay – what would you have liked to have had from those you loved when you were a teenager?  What did you get that helped – or hurt?

likeOne thing I do believe we’ve learned from the experience.  Major life announcements should not be made via certain social media networks. 🙂

 

CC Flag Image used courtesy of Datchler on Flickr

This week in overload…

So, this week’s calendar includes:

  • Monday night rehearsal for the daughter with her community orchestra (across town, of course)
  • Tuesday night band festival prep clinic for the son
  • Tuesday afternoon viola lesson for the daughter
  • Wednesday evening orchestra festival prep clinic for the daughter
  • Thursday afternoon ACT class for the daughter
  • Friday evening orchestra festival
  • Saturday band festival
  • Sunday community orchestra concert

And this is, of course, on top of our regular jobs, MIL care, homework and the rest of the circus of activity that seems to follow us around.  Is it wrong that I’m sort of rooting for the snowstorm that’s headed our way to knock a few of these items off the schedule?

snow