Seems someone hasn't read the script.....

Thursday 20^th August, it’s daytime and Julie has taken no drugs orally since she briefly woke Tuesday evening. She’s slept upwards of twenty-two hours a day since Sunday. She’s hardly woken and when she has and we’ve given her fluid she’s hardly drank or if she asks for a meagre biscuit she feels like she was choking it, seems as fast as she wakes she’s back asleep again, she looks at peace, she doesn’t seem in pain, she’s asleep pretty much all day and when she wakes she is asleep again in seconds. I needed to speak to the experts for although sedated the untaken drugs include Fuzzy drug (Keppra) as Julie called it, another anti-seizure drug clobazam and more importantly Julie’s steroid Dexamethasone haven’t been taken since late on Tuesday night, I ‘know where we are’ so I’m not sure missing the drugs makes a difference now but I don’t want to be in a position where I’m ever accused of not administering Julie’s drugs, some of them are now clearly non-essential, her calcium tablets for example but it’s not for me to decide what is withdrawn if anything. I called the Macmillan team explained the situation and sought their advice, Jayne wasn’t available but their triage team said they’d check it out with Jayne and inform the community nurses, the view is the Dexamethasone needs to be in her syringe driver now but the drugs already in her driver should cover the main symptoms. It was also decided that we should no longer put Julie through the trauma of hoisting her out of bed for the commode or anything else if she woke, effectively she is totally bed bound now.

I’d spoken with  Hannah earlier in the week and she wanted to come and see or just sit with Julie, lol there are two huge bags of Pom-bears here for her too, I went to collect her, Maureen is with Julie, she’s never alone, one of us is always in the house with her or close by. It’s lovely to see Hannah, Julie barely wakes she’s so out of it, there’s something about each visit now, it’s like you can sense the finality of it all now, despite this Hannah say’s she’ll be back next week, always the glass half full or is it a coping mechanism, I can’t believe how strong a bond has been forged between these two.

Early afternoon Viv from goggle box contacted me privately to ask how Julie was and to tell me Eve (who was having phone problems) wondered if she could come and visit Julie again, again another amazing bond of friendship, I explained to Viv how poorly Julie was and Eve being young I explained or rather asked how Viv thought Eve would cope knowing ‘how close’ (to death) Julie now is, it’s hard for the older generation but we can’t assume how anyone is going to feel, I’d rather check, I did say Eve may find solace in spending time with Julie but Viv would know Eve better than me, next thing Viv messaged back asking if around six would be good, sure enough Eve came and Julie ‘rallied’ and as soon as Eve left Julie zonked out again, I’m beginning to get a complex! For ages of an evening I’d sit and watch Julie’s chest rise and fall, it’s certainly shallower breathing than it has been previously.

Thursday Evening and Celia, a dear long-standing family friend who lives close to Maureen has come up for an overnight visit, it’s been a busy day. I’d popped out to buy some food and lo and behold when Celia turned up she arrived baring carrier bags full of food too! I’d just laid out a mini buffet for us to pick at and had warmed up a couple of items too. Suddenly Julie woke, I mean woke! She wanted feeding and drink and she ate more in an hour than she had in the previous week! After a lovely evening we all headed for our respective beds, I haven’t mentioned it before but a while ago Julie had cried because we can no longer sleep together, she loves her cuddles and whilst we do kiss and hug daily overnight the closeness that was because hospital beds are singles the closeness of an evening had disappeared. I had a bit of a brainwave; if I took three of our dining room chairs and lined them up close to Julie’s bed and put my blow up mattress on top of them then I would be the same height as Julie and adjacent, close enough to hold hands. One small glitch, the mattress is wider than the chairs so nothing supports it and that’s the section closest to the bed, hmm a roll or inch too far and I would be disappearing and landing on the floor! I’ve always said “What Julie wants, Julie gets”, this is no exception, and I’d have to sleep carefully.

 

Friday arrives and I went into work, I’ve already had a discussion with my boss and explained I’d been told Julie has just days remaining, he kindly told me to do whatever I needed to do and the company would support me. When I got home our Doctor had been out and re-evaluated Julie’s drug regime and the nurses had fitted Julie with a second syringe driver, they have now added dexamethasone to her second driver. There was still no instruction on the other drugs. Jayne had called too and she was coming out Monday, she’s also arranged for the Hospice consultant to come and evaluate Julie the following week, Julie had on a previous visit been teary talking to Jayne about the hospice, she wants to go in to give Maureen and myself a break! Still thinking of others even at this stage, the reality is a) The consultant is coming out to evaluate her treatment and drug regime not to assess her to go into the hospice and b) she is as cared for at home as she could be in the hospice and as crazy as it seems it would be a bigger burden on Maureen and myself if she was in our hospice, there are more needy patients for the hospice’s services in house.  We are supported here at home by a once a week visit by a service they supply called ‘Hospice at Home’ who will and do come and sit with Julie whilst Mum goes out, it’s four very valuable and gratefully received hours of respite. I mentioned Monday’s conversation when it was decided we need more night sits than the two we are currently getting, I had a second on the Tuesday night, this time supplied by the hospice team and Friday night I have another. The sitter does just that, they night sit Julie so I can go to my own bed, most bring a kindle or a book, If Julie is awake and wants to chat they’ll chat, tonight sit is going to be a quiet one Julie is back to full on comatose state. The one thing this team cannot and will not do is administer medicines to a patient, tonight is no different so I told our sitter in the very unlikely event Julie wakes to call me but as she is off her meds its unlikely either of us will be disturbed. Wrong! At three a.m. there is a knock at my door, Julie has woken and mentioned she is short of breath our sitter says “She mentions she has an inhaler?” I’m on my way downstairs having tugged on a pair of Jeans. I found Julie’s inhaler and gave her a couple of puffs on it. She seemed disturbed so I sat with her for a while to see if she’d settle, she started to sob, I asked “what’s wrong hunny?”, the response is a question I’d been faced with once before with my dad,..in the sobs Julie asked “Am I dying?”… It’s heart wrenching to hear a loved one ask and in this case can I really be so cruel to give her the blunt answer of yes? Ask yourselves what would you do?.. I chose as I did with dad to explain that we are all dying, I added “but hunny you know you’re very, very poorly don’t you?” in between the sobs came a very teary “Yes”.. I grabbed a tissue, wiped her eyes and held her hand, “you do know we are always with you don’t you?  Maureen and I won’t leave you alone”, she squeezed my hand, her eyes had remained closed. I sat with her for forty-five minutes until it was clear she had gone back to sleep, I whispered to the night sitter, see you at 6.45, they leave for seven fifteen and I like to do a mini handover. I really didn’t want to get up, what I would do for a lie in, I cannot remember the last lie in I had…

So our night sitter gone and it’s just Julie and I until Maureen comes down. I made Julie a drink, her thirst was back! I sat next to her bed, she’s gone weak and we’ve already had one cup of cold drink end up in the bed with Julie so we hold her drink cup and she drinks from a straw now. She took a sip and despite Julie having control of her intake she holds her hand up to indicate enough, bless her she’s extremely confused now. I removed the straw and put the cup down and held her hand, she broke down in tears again, again as I did in the middle of the night I asked “What’s wrong hunny?” I got the same question asked of me “Am I dying?” This time it hit me, I started to cry, I knelt on the floor next to her, our heads close together, I still cannot say the word yes, through my own tears holding her hand I just repeated, “You’re very, very poorly hunny, you do know that don’t you” she nodded her head, I am absolutely devastated, devastated because I know how close we are to her dying, devastated that it's upsetting her. Some of you are saying she has a right to know, maybe to make her peace with her maker but Julie is not religious, she’s already told me she wants a non-religious funeral service. On top of this I know deep down Julie does know she is dying, she’s known for two years and seven days to be precise, at best her questions are an attempt to know how close she is to death and I truthfully cannot give her a date or time, no one can… She went back to sleep.

Sunday 23^rd and amazingly ‘Superwoman' is awake, lively, demanding breakfast and she’s wide awake, we are having the bizarrest conversations, I’ve already explained some of them in the last blog, at times now the stuff is so funny its hysterical at times and it’s a job to keep our faces straight. Early Sunday evening Julie’s dad calls, these are tearful and very private moments we tend to step out of the room usually but today Julie insists I stay. It’s heart breaking, I’d answered the call and stepped into our lounge, I'd previously  warned Bob, Julie’s dad how ill she was, I’d told him earlier in the week that if he wanted to see Julie, now was the time, I warned him things were not much better and the medics view still remains just days, Bob is upset as you’d expect, I was shocked for him to tell me that he’d asked a close relative to bring him over, everyone knows this is going to be the last visit, I was totally aghast to hear him say the person concerned refused on the grounds it would be too upsetting for them!! Sorry but whilst I tried to keep my counsel on certain things, this is without doubt the single cruellest act I’ve heard of, to deny a father the chance to see his daughter one last time, I’ll stop short of naming them and this hasn’t been shared with Julie, she would be devastated. I took the phone into Julie she has it on speaker nowadays unable to hold the phone, she sobbed to her dad that she’s not good, “I’m not good at all Dad, I’m frightened”, this conversation is painful, then to confirm what I already knew (that Julie does know she’s dying) Julie said as she sobbed “Tell our Mick (her brother) to get over here fast or it will be too late” She sobbed “I can’t carry on end the call, I love you dad”.  I took the call outside again and apologised to Bob, he’s distraught, I feel so helpless I cannot leave Julie and even if I could because Bob would need to be back home the same day because Julie’s mum is ill too it would mean 720 mile journey for two round trips, it’s too much and it’s not my responsibility, Julie is..

I received a call from another family member that night explaining they’d too been told that Bob wasn’t going to be able to come over, I cannot break this to Julie, it will destroy her, it’s yet another burden to shoulder, as if I’ve not got enough to worry about already.

On Tuesday Jayne came out with the Hospice Consultant and Julie was quite lucid, very teary though and being apologetic for it, the consultant told her not to apologise as this was an emotion that was outside of her control now and therefore she owed no one an apology. The consultant confirmed 'we' were all doing everything for Julie that could be done, there was a moment of humour, I'd left the room whilst Julie was being examined and came back in to overhear a summary of what had been discussed, one that included talk of "seeing if we can get you an improved hospital bed but we're not sure at this stage if we'll be able to get you one", I asked "what sort of bed?" The answer from the consultant was "Oh you can get beds that tip the body to an angle, it takes some pressure off just raising the head so it makes it easier to swallow", Oh OK I responded, reaching for the bed remote, I pressed one of the buttons "What a bit like this one?" as I raised the top half of the bed and lowered the bottom half! I laughed as they just stared at me! Jayne our Macmillan nurse smiled and mouthed something similar to "you smart arse" and said out loud "Well, we never realised this bed did that".. It's good to be able to laugh at times like this.

On Thursday this week it was confirmed that Julie’s first husband George has stepped up to the plate and is to bring her dad over this Sunday (30^th August)! I’ve always got on well with Julie’s original in laws, they’ve at times shown incredible kindness in actually making me feel part of their family, June, also Julie’s best and longest friend has given us over nine weeks of her time since Julie’s diagnosis, George has gone above and beyond with this gesture, so much so it moves me to tears as I type this.

Friday and 28^th and I am totally confused now, despite the whacky conversations we are having with Julie she has been and continues to be as bright as ever, she ‘clearly has not read the script/rule book’ she is giving no indication that she is going to give in to this, she’s not making any declarations to continue fighting either. The worst at the moment is the clear confusion, sleeping slightly longer than usual and having a much reduced appetite but other than this she is battling on regardless. It’s very much a mixed blessing, It is draining on Maureen and myself and I have to say Julie’s quality of life has deteriorated further in many aspects including more dignity gone, because we cannot hoist her she lies on a pad similar to a child’s nappy, she won’t be out of her bed ever again, she suffers the daily indignity and pain of being rolled to be washed and to have her bedding changed, this can be up to five times a day now, this is no way to live, early this morning as we lay side by side she sobbed and told me she wished she could end it all now but an hour later she’s ‘demanding’ porridge for breakfast’. I’m not sure if she is ‘holding on’ to see her dad even though she’s clueless to his imminent visit or what, I’ve previously told her that despite believing she should ‘let go’ now that ultimately this is her decision and whether I agree or not she has my total support until the very end of her Journey. The dilemma I have remains per my comments in the last blog and my work, I cannot just sit here waiting for Julie to die equally I need to be with her, I chose to go into work on Friday for a few hours in the afternoon, my emotions are in tatters, this rollercoaster is not for stopping and letting me/us off yet, all I know is there is no happy ending here.