Getting Through Each Day

Andy here, I thought I’d bring you a slightly different perspective of how things are for us carers (Mum & myself), I suspect for a lot of others too,  I also need to update you on the things I’ve been ‘working on’ though that might be a separate blog.

Julie’s most recent blog sees her explaining her worrying quite a lot, this is from past experience with losing my dad the same way a similar trait of this disease, my mother and I comment often how similar their journeys are, the worrying and agitation is all part of the journey. It’s hard as a husband to see this occurring, it’s hard at times to handle too but somehow we all have to cope  Julie, myself and Maureen my dear Mum, I can only tell you how I feel and how I cope, so here goes.

Julie & I promised early on that we would remain true to the people we were when we met and that we fell in love with, this still holds true today, it would be easy to fall into the trap of patronisation and putting on those whiney voices that I’ve heard others do in the past, why would we change? I’ve had to try and become more understanding, I’ve bit my lips so many times I’m amazed I’ve not bitten right through it. I can tell anyone reading this that this journey is not easy, it has to be walked, as I’ve told many people recently who have checked on me that for me there is only plan A, there is no plan B, in other words whatever it takes to walk this journey with Julie as long as it takes I will be there with her day and night, that extends to me sleeping up to four nights a week in ‘her bedroom’ on the floor on a blow up mattress, I’m never fully asleep for there are times that Julie needs assistance or reassurance, often too the night is the only time we are truly alone. If you know anyone walking a similar path and you can support them, well, just do it..

In terms of worrying a lot its obviously not just a one way street, everyone worries about Julie, a lot of you ask with great frequency and it’s lovely and yes it helps, I do get a lot of “Make sure you look after yourself” comments, my answer is always “Easier said than done”. Julie acknowledges herself that her fretting and her illness at times makes normal day to day tasks demanding and draining, I’ll give you some examples but whilst they are draining and exhausting there really is no option but to get on with it. I often remind others that our wedding vows said “In sickness and in health”, to me our vows were precious and although I’m not necessarily the kind hearted saint a lot of you seem to find me I am totally devoted to Julie and even more so as our time together is increasingly diminishing, another saying I use a lot and mean is “There is no plan B”, Julie is plan A, end of story, what she wants she will have, what time it takes, well it takes be that day or night. We have fantastic support and I’ve said before if it is offered to you in a similar set of circumstances gratefully accept it. Julie, Mum and I are supported by a team of carers and community nurses, furthermore we are supported by our local hospice St John’s Hospice who run a service called ‘Hospice at Home’, basically their team will come and sit with Julie for up to four hours, sometimes we get one visit other weeks it is two. When it all first started Julie’s view was “I don’t need this service”, she and I suspect a lot of you may not realise that a service such as this AND the equally excellent Marie Curie Nurse team that support us too up to four nights a week are primarily not for the patient’s benefit they’re to relieve the pressure of the family care workers and they’re invaluable. For my (she’ll shoot me for telling you but..) 83 year old Mother whom I am sure believes she is still just fifty the way she runs around, Hospice at home gives her a chance to go down town, to shop or just to chill, to go lie down and catch up on sleep, whatever she wants to do to recharge her batteries, Julie really could not be in more capable hands than Mum, Mother, Maureen… She washes and Irons, she cooks fresh meals, she makes Julie more cups of tea or coffee than most navvies could consume in a day, she tires me out just thinking about what she does. From my own perspective from arriving home from work I try to assume the role of loving husband, soul mate, nurse & carer, I can tell you and it’s not Julie’s fault it is the disease but her insecurities and fretting makes her more demanding of my time and attention, it can at times be a non-stop onslaught of “Pull me up the bed please, (more on that another time), check my catheter, may I have a cup of tea, I’d like a biscuit, help the carers put me on the commode, help them get me in to bed properly, put my cushions in place (long story for another blog lol), is my urine bag empty, please make sure my ‘kylie’ (water proof/absorbent bed cover) is in the right position and right way around, where are my drugs?” (of an evening Julie takes one liquid, four different types of tablets, five if we include paracetamol, six if we include the ad hoc doses of liquid morphine, on top of this she now has two drugs in her syringe driver too but those are the exclusive domain of the community (district nurses). When the night nurse team come in to check her syringe driver they will also on request (every night) hoist Julie out of bed on to her commode, as I’m there despite the professionalism of this team Julie insists I assist and oversee the operation, to a degree it is a case of many hands make light work by assisting, once on the commode Julie’s modesty kicks in despite to put it bluntly all of her ‘bits’ on display whilst being hoisted in her sling but once on the commode she likes her privacy from everyone.. except me hahaha… I use the time to talk to her, to get the freshen up kit ready for the nurses as they pop into our lounge to be entertained or fed home-made cake by Mum… the freshen up kit includes baby wipes, a bin bag, various creams, invariably I’ll light a scented candle

Hoist & Harness at full lift position knees would be in front of where the 'gold sections are

too, the last thing I want is Julie being upset nor her living her life in a less than freshly smelling room. I’d like to thank all who have given Julie scented candles she loves them and at times like this they can be most useful. Julie lets me know when she is ready for the nurses, the operation of getting Julie into her harness and onto the commode is almost a military precision operation, the harness has to be slipped under Julie as we gently roll her from one side of her bed to the other then the harness is slipped under her, she’s rolled back and the harness is retrieved and put in position, positioning, it is essential it’s in the right position to prevent pain and to prevent the risk of injury. Julie’s harness has four straps four near her legs, two near her shoulders, these are attached to an electric portable hoist, her bed has to be lowered (electric controls) the hoist raised to its maximum height to ensure Julie is clear of the bed, as a team of two or three we then have to assist her lifeless left leg off the bed, the hoist is turned 90 degrees, the legs opened and the commode slid under my poor dangling wife. We then have to lower her accurately into the right position (and god help us if we get that wrong!). The opposite applies after she has used the commode, she is lifted, the commode carefully slid from under her and the Nurses or occasionally myself will freshen Julie up, again at this point she is freely ‘suspended’, of course this raises her stress levels so speed is of the essence but so is gentle.. We then have to twist the hoist 90 degrees and get Julie back over the bed, trust me it sounds simple, it isn’t always and she has specific requirements to positioning. Once safely in we as a team work to prop and support her limbs with cushions (5), her pillow must be ‘just so’, she has to have a night bag fitted to her regular urine bag as it holds more fluid, we have to cover her up then put a final cushion in place to support her lifeless left arm, we then


The one and only Winston

add ‘Winston the teddy’ who as well as being cute acts as a seizure alert to Julie. Her left side is completely dead until a seizure occurs and they mainly present themselves in her left hand & arm, as soon as she sees Winston twitch we know a seizure is on its way and we have to grab for her seizure meds instantly. Once Julie is settled down its then a case of doing the less pleasant clean up jobs such as emptying and washing out the commode, re-positioning the hoist and putting it back on charge, getting rid of the nurses aprons and the clean up kit, whilst I complete these tasks the nurses do a final check of Julie’s syringe driver. As these medicines are classed by the home office as controlled drugs, the Nurses have to go through a strict recording routine each night. Daft as it sounds, it’s probably an hour from start to finish, as I wave the nurses off and by now it can be 11pm I then have to give Julie her tray of drugs explaining nightly what each

Winston the seizure alarm in situ

is for giving her drinks in between, after this its “Can I have a tea please?” so I’ve been up since 06.15, mum since 06.30 and although Mum has had Julie to look after all day she heads to bed for 10pm, on the other side as soon as I get up I go through the routines of getting Julie settled and ready for the carers, preparing her 10.00 a.m. drugs, on some days she may need my support until the first team of carers arrive at 08.45, I’ve then an hour’s drive to work where I remain most days until around 6pm then its home to the above routine, so its 10 or 11pm, I’ve not eaten, barely sat down and I’m exhausted. At least three and often four nights a week Marie Curie support us with a night sitter who arrives at 10pm and sits in with Julie overnight and they leave at 07.00, with me coming down to relieve them and for a handover chat around 06.30. This team are truly invaluable, again Julie didn’t recognise or realise the worth of this team to especially me. On nights we don’t have a sitter I sleep in with Julie, I sleep on a blow up mattress some three feet below her bed, a combination of blankets, throws and a quilt over me, I do get some sleep but I hear Julie ‘rustling’ or occasionally asking for help, this could be that she’s uncomfortable or occasionally “I’m hungry” despite it being one thirty in the morning bless her! (This isn’t Julie it’s the drugs and the disease), I can tell you when I rise at around 07.00, I am mainly exhausted. It’s not fun but as I said there is no plan b, Julie comes first, morning, noon and night. Sounds hectic for one day uh? Imagine it for seven days a week for (so far) nine weeks… This wasn’t a plea for sympathy, I can hear the ‘awws’ from here, it’s just me explaining from a partner’s and carer’s perspective of how your life gets turned around, I would not have it any other way, Julie comes first, first time every time. I suppose what I hope it does is help those in larger families who are close enough to help support another relative, it’s different from afar be it in the this country or be it for relatives abroad but, if you’re local hopefully this gives you a flavour of what it takes getting through each day…

Julie & Winston


This Blog is dedicated to St John's Hospice Wirral  & Their 'Hospice at Home Team' & to Marie Curie Nurses everywhere ( A special mention for two of ours, Lynn & Dot, who either keep Julie in fine humour or oversee her as she sleeps and equally as important that I can enjoy the comfort of my own bed knowing Julie is in safe hands.)

Please visit the links & see what they do, they are both registered charities too if you can support them please do.

http://www.wirralhospice.org/

https://www.mariecurie.org.uk/