Is it 'Just another day'?

 

Saturday 5^th September:

This journey gets no easier,  the last 24 hours haven't been fun. Firstly due to continued anxiety & agitation it was agreed with & by Julie yesterday that her corresponding drugs doses were to be increased from lunchtime today. She has been hallucinating and continues to as I type. She had a bad night,  I was awake probably every hour with her either wanting moving in bed or in pain and requiring 3 doses of Oramorph throughout the night and she's just had an unprecedented fourth now.

The community nurses have been & upped Julie’s Midazolam and her Levomepromazine the anxiety and agitation controlling drugs per the conversation with our Macmillan Nurse yesterday (By the way it's the Macmillan Coffee morning later this month, whilst our fundraising is generally for local Clatterbridge Cancer Charity rather than a giant national like Macmillan, if you wondered where your donations go & what good they do, well here's an excellent example).

 

The nurses at the same time discussed with Julie the amount of morphine she was taking as a top up, for by now we are (again) already matching the volume in the driver, it was decided by Julie that we would see how the next 24 hours go. At the same time they (the nurses) mentioned that the in house stock of Midazolam (due to the dose increase) was low and if Julie needed to be sedated in an emergency they would have insufficient to do the next driver refill. They would sort out an emergency prescription and “Could I collect it”.

 

Nails courtesy of Tara, photo-bomb courtesy of Winston

Tara painted Julie’s nails for her as she dozed in and out of sleep bless her, I’d noticed Julie’s breathing had gone shallow, really shallow, even before the syringe driver dose increases, being totally honest this was a frightening moment of realisation that things are closing in on us. I grabbed another chair and sat the other side holding her immobile left hand, she seems to have ‘dipped’ very quickly, my eyes welled up and I’m not sure how but I (think I) managed to hide it from Tara. As Maureen entered the room I left Julie’s side and spoke to her, I explained quietly that I felt we were entering the final stages and asked would she sit with her too as I needed to go out;  rather than us just being in the room with Julie as we have been it just seemed right that this became a bedside vigil now.

 I needed to get some personal care items for Julie and another box of disposable gloves, somehow (despite they’re meant to supply their own – nurses & carers) ‘we’ve’ managed to go through a box of 50 pairs in less than a week! Tara’s partner Pete & her daughter Sommer who came to visit too came out with me, I didn’t want to be away long.  I’m seriously worried and whilst Julie has consistently proved herself to be the 'comeback queen' I am seriously concerned that she's already made her final comeback and she's entering the final stages of her life, there is no doubt she is seriously poorly, though as you know she delights in proving me wrong.

Mid-afternoon I shot out to get the extra midazolam, whilst away Maureen called me, Julie had woke in pain saying her catheter wasn’t working, my gut feel was because she’s barely drunk, I mean she’s probably drank less than two pints in a week that this is just a sensation and there is no fluid to pass but as we seem to be giving her increasing doses of morphine I said she could wait for my return or call the community nurses out. On getting home Maureen confirmed she had called the nurses, they were on their way.  Jenny arrived on her own; we only see her occasionally of a weekend. It’s a two person job to change a catheter and Jenny was going to call a colleague but this was going to cause a delay, as one was needed to insert the new catheter and the second was needed to keep Julie’s legs in a certain position she asked if I could assist, it took no time at all to replace it and well around 200ml of pee flowed, it seemed there was a blockage, as I write this Sunday morning the volume is barely at 350ml.

 

Tara, Pete & Tara's daughter Sommer headed home, it was just a quick dash this time a one night stay but I can say their visit was a tremendous help and support, (No that's NOT a dig at anyone) it's fair and sad to say that despite Tara spending an age beautifully painting Julie's nails she'll probably forget who did them by today but I know Tara has found today’s visit cathartic.

 

We  had a Marie Curie sitter last night, a lady called Lynn who in the early sits Julie got on incredibly well with; I'd often hear them giggling in the early hours from my bedroom above. Due to rota's Lynn hasn't been for six weeks or maybe more. Despite dealing in palliative care sits for years when she first came in & stood next to our comatose lady here, we discussed today’s events and her recent rapid decline, Lynn quickly left the room in tears, this poorly woman somehow impacts on the emotions of anyone somehow, I consoled Lynn she was apologising for crying, it's touching when someone else feels the same raw emotion that I do.
Before I headed to bed I explained should Julie express that she’s used her pad Lynn is to call me instantly so that we can clean Julie up and change the bed, I won’t compromise on Julie’s personal hygiene; years ago she said “Promise me if I ever end up in a nursing home or poorly that you’ll make sure they keep me clean and well dressed and don’t let them shave my face! I can’t help but go hehe to this, ‘they’ turns out to be Maureen and myself and I’ve had to remind her more than once recently of this conversation when she’s tried to decline being washed and tidied up daily. Remember if you’re ever in this situation although our looks and body’s may change our personalities and standards invariably never change, we owe it to our loved ones who would spend hours getting made up to keep them as ‘pretty’ and as presentable as they would want to be if they could do it themselves, there has to be dignity in dying, don’t give up on your loved ones.  I headed to bed & chatted on my iPad briefly with a couple of dear friends who probably don’t realise how helpful they are being (just in chatting) before my eye lids get the better of me.

 

It’s now 09.51 on Sunday morning,  I came down at 06.40 and it’s already been ‘one of those days’; Lynn explained Julie had needed two shots of morphine in the night because of pain and that she’s woken every hour on the hour. Julie was awake and Lynn said “See, Andy’s here, he was only upstairs sleeping”, “Yes but he’s too late, you’re too late to help me with my purple thing!”… I kissed her and stroked her hand and she just went back to sleep. I chatted to Lynn as she headed to our front door, she knows she might not see Julie again, I’ve told her on or off duty she can pop in. I returned to Julie’s bedside and began to write this blog. Julie woke a couple of times including once wanting a drink but telling me not to drown her, Maureen came down and she and hugged and kissed Julie, I think the scariest thing for me right now in addition to losing Julie is the impact Julie passing away is going to have on Maureen, this is going to be heart breaking and she’s still not recovered from losing Henry in January, life is just so sodding unfair at times.

 

Shortly after Julie woke shouting “Andy, untangle me & make my leg wet”.. I rubbed her right leg and asked was that ok, she just nodded.  A little while later & Julie started crying, she’s in pain again, by now its 08.15 I offered her morphine for her pain, “yes please but don’t drown me”, Julie has forgotten the co-ordination of drinking not breathing and swallowing, even sucking on a straw as she drinks she still holds her hand up to say “enough”. Maureen drew up the 2.5ml of Oramorph and I checked it before Julie took the dose. This dose is a standard routine for the carers are due in around 08.45 and there is a lot of rolling and moving her so it helps with the pain.

 

08.30 and Julie wakes, Maureen is holding her hand, she cries out again and adds, “Please help me go to sleep, I can’t sleep”, there was distress in her tone so I called the district nurses, I feel she is agitated for she cannot be tired, restless yes, tired no and definitely in a mild form of distress, is this the time to sedate her with a shot of midazolam? Kate on the phone agrees and colleague Hayley is on her way out, I again said the team need to chat to Julie, I’m almost paranoid now that someone would even think I’m trying to keep her sedated, Julie herself at times has even suggested that even after she’s asked for more medicines, it’s an awful feeling and it’s a burden making or suggesting how a loved one should be treated and medicated, I’ll never do anything to cause Julie harm or suffering, I’ll support her and offer my opinion but so long as she can make decisions herself she must be allowed to.

 

Shortly after the call the carers arrive, today it’s Steph and Sonia, Steph has an amazing approach to Julie’s care, its touching to see and watch, even today as she stood next to Julie’s bed holding her hand again you can see the affection and the effect this wife of mine is having on someone and they never knew each other until around 13 weeks ago. I was prepared to let Julie’s personal care session slide today because of her distress, she said “you can do it later”. I invited Steph to chat to her so they could decide together, the view is we can leave it for now…

 

Hayley was with us shortly afterwards, I explained the overnight situation and the recent distressed plea to be put to sleep, I said I’d back away as Hayley spoke with and assessed Julie, it was quite a garbled conversation partly because of drifting in and out of sleep partly due to her confused state. It seemed the 08.20 dose of morphine had kicked in and was doing its job. Hayley’s view of her status right now is that the morphine has kicked in and is doing its job for now and as Hayley is back out around noon to do Julie’s driver it’s probably worth waiting until then and at that point increase the doses in the syringe driver then, Julie agrees and I lol ‘concur’…

 

So, three hours of non-stop activity...... “Stop the world I want to get off”