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:
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?