2 Cor 12v9

Sunday, 25 May 2014

The End

It is over. Richard finally faced something he couldn't conquer, and he is now free from the fight and doing who-knows-what, who-knows-where.

Oh, how I wish I could see it. I know it's totally amazing, better than anything we can imagine with our physical minds, because it far outweighs anything we've ever experienced before. I know that there is no pain or sadness or worry, and that everything we've ever struggled with will suddenly make total sense because we will see it a way we've never been able to before.

A friend sent me this C. S. Lewis quote from The Last Battle:

"All their life in this world and all their adventures had only been the cover and the title page: now at last they were beginning Chapter One of the Great Story which no one on earth has read: which goes on for ever: in which every chapter is better than the one before."

That's what bring me hope and comfort. Not images of green meadows filled with rainbow ponies and candy floss clouds (which is what so many books on heaven seem to show). Heck, there was no way Richard wanted to leave his adventures on this world behind anyway, never mind for fluffy rabbits and people in sandals grinning serenely at each other. No, the next great adventure - the unknown chapters that get better and better - that's where my hope lies. All our frustrations with this world point us to the fact that we were made for somewhere else.

In the meantime, I am back, for the third time in my life, at that exhausting, core-sucking place where I have watched someone I love fade bit by bit by bit and fought so hard to change it any way I can. The images in my mind are still fresh of just what a degenerative disease, plus all the hard-hitting medicines used in a futile initiative against it, plus long periods of time where the body is debilitated and wasting away, can actually do. I could go into great detail about those last few weeks, but I am going to use the same tactics as I did for my mother-in-law and for Scooby, and keep choosing not to talk about them or give description to them, so that eventually time will do its thing and the memories will fade, and stop flashing into my mind when I'm trying to sleep.

But, as with all things, God can use them for good if you let Him, and right now the horrible parts of the end of Richard's life have a use, and that is to remind me how important it was to let him go. When those images come, I can turn them into an excuse to rejoice - his body doesn't look like that anymore! He has a new one! The old one was a trap, weighing him down, giving him pain and preventing him from doing what he wanted to do. It was wrecked and ruined, so why would I want to keep him in it? The new one is so amazing, we can't even picture it. And that's what makes it more exciting.

And as awful as waiting for death is, I am still glad that (for now) we don't get a choice about it. There is no quick and easy option to skip to the end - we have to let nature do its course, with as much comfort as modern medicine can bring us. So even though, in my sheltered experience, it's the worst thing I have ever ever been through, like a form of torture, I wouldn't want to change the law on it. 

This last week, as he faded fast, Richard found it really difficult to keep consciousness and kept fading in and out. He was easily confused about what was going on around him and couldn't always finish his sentences. But there was something so beautiful in the middle of all of it. Instead of the frustration of a busy mind that was desperate to do something "productive" and hating to be so dependant on others, I saw a man reduced to the character qualities that summed him up best: wanting to be useful, and consideration for others. All his dreams were about fixing things, and trying to make things better. All his interactions were about making people feel that they were understood and appreciated. Even though I stayed over to be with him while he was like that, he would frequently wake up and see me and say "Oh, you're here!'" and fall back to sleep with such a big grin that he didn't need any more words to show me how much he loved and appreciated me. While he was asleep he would chat to his dad and other friends about ideas and schemes for building things and seemed so happy doing it. Even when not fully conscious, he would thank the staff for everything they were doing and ask me if he was treating everybody okay and if he'd accidentally ignored people because he knew he was in and out of sleep.

One of my favourite moments, which turned out to be one of his last interactions with me, was caught by one of our incredible friends, who was sitting quietly crocheting in the corner. I'd leaned over to ask him something - maybe it was to sit up and swallow his meds or something - and as he opened his eyes and saw me, he said "Oh hello. You're very pretty. Can I please have a kiss?' 

It's compliments like this, of which there were many in the week, and only for me (thank goodness) that I am choosing to fix in my mind. When the adrenaline that I no longer need in case of emergency gradually fades and I can start doing normal things again, and I rebuild strength in my muscles that I haven't used for long walks and other exercise, and I can remember what it feels like to wake up in the morning and have a pre-planned schedule for the day, I will no longer feel like I have been ripped apart by this process. I will heal and be so glad that I walked him through every opportunity I had to be with him. I will treasure the few happy moments that I would've missed if we'd cut the journey short, and I will know that no matter how tired I was, and desperate to see his suffering end, and ragged by the emotions that pulled me all over the place and back again, that I did my absolute best for him, without holding back. Because physical suffering is not the worst thing that happen to us. We are so ready to run away from it and find comfort instead, but then we miss out on so much that will shape us, and deepen our understanding, and take us beyond limits we wouldn't have gone otherwise.

So I am not bitter about this. I am still waiting for peace, as I still can't accept this outcome yet without wanting to scream about, but I know that eventually the peace will come, and probably a whole load more unexpected blessing with it too.

So goodnight Richard - you now have your perfect peace, and soon I will have a less-perfect but still amazing version of it here too. See you soon xx

Sunday, 18 May 2014

How Are We?

This weekend has been like an oasis in the desert. Some amazing friends looked after the children for me for two nights, I did absolutely nothing at home and got lots of sleep, more good friends came to visit from far away, and best of all, after some really awful downhill days, Richard felt well enough to try and go on a trip out of the hospice. 

Deciding between the hospital, hospice and home had been a really tough decision when they told us we were looking at end of life care. The hospital was familiar and had lots of equipment and expertise on hand, but the hospice was nearer to home and had really nice facilities, including gardens with wheelchair access and lots of space for the children to play when they came to visit. We ruled out home because the tall Georgian design of the house meant Richard would have to be stretchered in and then just stay in a bed in one room of the house, with carers coming and going throughout the day, and then just us at night. We chose the hospice because we thought it would be the best option for the whole family, and it's definitely been the right decision. On Richard's bad days (which are now the more common ones) we are grateful that his pain relief can be quickly altered and his extra unexpected symptoms like swollen hands and feet can be seen immediately, but on his good days, especially when the sun is shining and he's able to be lifted into his chair, it's been even more worth it. And because we bought a car with a fitted wheelchair lift for Scooby (which he never got chance to use), we were geared up for making a trip away from the hospice at the first chance. On Saturday we nervously went for it and managed to get him into the car, through McDonalds drive through for a cheeky frappe, and onto the prom just outside our house in Morecambe. 

We met up with the kids there, and took Ace to the bike shop at the end of our road to choose a new bike. We went along the prom, watched the kite surfers and some kayakers, and bought ice cream. Then we headed back so we were still within our three-hour time period. Richard suffered for it afterwards - last night and today he was in a lot of pain, but hopefully we can do it again some time.

Here are the pictures:

The love we got on Facebook and Instagram for these was brilliant and much appreciated :)

Every day people ask the same three questions and it's always difficult to know how to answer them, so I thought I'd put them here so it's easier to see them:

How's Richard?

Different every hour. Some days when I'm with him he's drifting in and out of sleep for hours, then he wakes up just as I'm about to go and is really disappointed that he's hardly seen me. Sometimes we have phone conversations where he launches into all the repairs that need doing on the car and goes into great detail about sorting out tax and I'm totally lost in the amount of information he's giving me, and other times he falls asleep halfway through speaking and I have to talk loudly to wake him back up. Sometimes people are shocked when they come to see him and he is laughing and joking and making inappropriate jokes about death and we all wonder what he's doing in a hospice because he looks like a big fraud and we wonder whether he'll actually have months and months to go and may even recover use of his legs in the meantime. Other times I feel like he is already fading and I worry that I may get a phone call in the night to say he's taken a turn for the worse. 

For this reason it's been totally right for him to be in control of the visitors he gets. People have been really good at messaging him to check when to come, and he's really good at being honest about how he's feeling. 

How are the children coping?

Two of them are coping ridiculously fantastically (to the point I have to keep checking that they know what's going on) and two of them are going through hard times right now. I can't tell the difference between natural periods of growth and change, and anxiety about our family situation, so it's really tough knowing when to give them huge amounts of leniency, and when to be very firm. It's such a very very weird situation that there is no expectancy or answer for. I am very aware that I am mainly wanting compliance and quietness from them at the moment without having much energy to input fun and creativity back into them, but I am relying heavily on some fantastic friends and family who are amazing at giving the kids what they're missing from me at the moment. I really am so blessed in this department. And although I mess it up sometimes and really lose it when I don't want to, my secret is that I'm really good at pretending to be patient. I'm actually a very impatient person, but I'm a really good actor so I keep pretending to have far more patience than I actually do, so unless several things happen at once, or they're out of bed after 8:00pm, then I'm just about managing to be what they need me to be right now.

How are you?

I have no idea.

I wish there was someone else who could answer this question for me. I know I'm exhausted, and that's the answer I usually give. But apart from the exhaustion, sometimes I feel remarkably normal and have to remind myself of the reality of what's actually happening to us, and other times I just cry all the time at the tiniest of things, and other times I talk and talk about nothing and wonder what I'm talking about. My mood rises and falls with Richard - his bad days are my bad days and his good ones mine too. I am normally a very rational person but my emotions are doing very strange things to me at the moment - any change of plan or interruption to what I'm doing makes me feel very anxious and sometimes angry, and I have to spend a long time unravelling why. It's really unnerving, and makes me want to retreat from people even more. I am retreating more and more and would really like to be by myself so much of the time. I just want the kids to do what they're supposed to do at exactly the right time, and the rest of the time I want to be reading or sleeping or doing inane puzzles or other unexpected obsessions that keep overtaking me. I am watching and reading every bit of material on World War One that is being produced at the moment. I'm knitting a cardigan. I read all of the Harry Potter books in three weeks. I write down lists off the top of my head of all the British monarchs in order, or all fifty of the US states. I look stuff up on Wikipedia and generally fall asleep reading articles of people I've never heard of. I don't know why.

But if I need to make decisions or plan out tomorrow or finish a task or make a phone call or sort out some paperwork, my brain turns to mush and I can't finish a single thought. Thinking about the present is like a giant spider diagram in my brain - every thought is connected to another and they all link each other at roughly four different items a second, so there's no way I can remember where I started or why it was important, but I have thought of several other things that haven't been done, in the few seconds that it's passed through my brain. 

Thinking about the future is even worse - I see or hear something that makes me think "When everything's calmed down again, we'll do that," then I have to stop myself making plans that go beyond Richard, because it feels like a completely treacherous thing to do.

So I keep thinking about the past, which is sometimes lovely and other times gut-wrenching. But I have to think about something because my brain won't stop. 

And, of course, so many past memories are linked to Scooby, which confuses the situation even more. On Wednesday it will be D-Day - two years since he died. I don't feel I'm properly processing my grief for him (is there a proper way to process grief?) because I can't distinguish between the two situations. I compare his past to Richard's present all the time as so much of what they've been through is so eerily similar. I keep basing my expectations about Richard's illness on what we've already seen - for example that we would only have a month once the treatment was over and the end-of-life care started. When I get upset about watching Richard go through difficulties, it's often because it's brought back a memory of the same thing two years ago. Sometimes I'm even blasé about our current situation, as if I've seen it all before and know exactly what to expect. I have to remind myself that I'm not just facing memories that I've already lived through, and that can be boxed up and put to the back of my mind for a while longer - I'm actually living it right now, in this moment, and I still need to choose my reactions and work out what to do in the next moment.

So I'm a mess, really. Just hoping that at the end of all of this, when we get a miracle or death, that I'll be able to think again, and make choices, and find a way to work through all of this. I hope I don't screw things up too badly in the meantime to make the journey even more messy than it needs to be, but the knowledge that there will be a way is so reassuring. 

And by the way, how are you?

Tuesday, 13 May 2014

My Message

I don't have any words to describe how I'm feeling at the moment. I'm just going back and forth to the hospice to spend as much time with Richard as possible, and coming back to be with the children as much as possible, and then I'm sleeping as much as possible in-between (and thankfully, I am getting lots of sleep - that's one thing I'm not struggling with). Richard is having a few good days, where he can be hoisted into his wheelchair and sit up for a couple of hours, but more bad days where he drifts in and out of sleep and is uncomfortable.

For some inexplicable reason I found the ability to get up in church and speak a week last Sunday, which in retrospect is really weird, because I spent the week before it in pieces, and have been in pieces since, but felt it was the right thing to do at the time.

So that's what I'll share instead of my written words. This kind of sums up all the preaching I've done for the last couple of years really, and the reason that I will continue to feel bruised and battered by all of this, but not destroyed.

Home Church Morecambe 4th May 2014