Changes

So, a lot has happened since my last post. Mum ended up being in hospital for ten days due to her low sodium level. She was discharged on 17 July but that ten days was an absolute rollercoaster.

The effects of her low sodium were frailty and difficulty in moving about plus, more alarmingly, a reduction in her cognitive function. This was tough to deal with and I touched on this in my previous post.

The time she spent in hospital was a tough experience for both her and us. A lot of the time she didn't really know what was going on around her and it was like hell on earth in there at times. Without wanting to sound horrible, she was surrounded by very old, very ill old ladies and this probably didn't do her mental state much good either. She couldn't sleep at night because of other patients wailing and screaming through the night and some wandering around the ward in a state of confusion. At times she started hallucinating that it was her doing the wailing (even while I was sat at her bedside).

For a lot of the time she was literally sat all day doing nothing until visiting time about 3pm. They fitted her with an adult nappy so she didn't even have to think about going to the toilet. This only served to worsen her mental state really. At times I felt anger about the situation but I don't blame the NHS staff I appreciate these poor people are operating in an environment with ever increasing workloads and ever decreasing staffing levels. They simply don't have the time to care for each patient individually 24/7. I left that hospital in tears on more than one occasion. There were days when I just couldn't see Mum ever coming out of there again.

But, mercifully, her sodium level finally crept up after endless Sodium Chloride drips and tablets and her mobility and cognition returned to something resembling normal. There's a saying about people who stay in hospital for long periods becoming 'institutionalised' and we had that fear for Mum. She got to the point where she would constantly need to be told what she had to do next and every time I left her at the end of visiting time she would be fretting about what she would do after I'd gone. Once her cognition had improved we would leave her with little lists of things to do, just small things like walking up and down the ward, doing 'stand up/sit down' exercises, a crossword, writing stuff down etc, just little things that would occupy her without having to ask someone all the time or worry about it.

Anyway, she's out of hospital now, but sadly, unable to live by herself anymore. She lived at home independently with no problem for 23 years after my Dad passed away but unfortunately she's currently not mobile or strong enough to do that. Plus with her chemo regime she has to visit hospital twice a week and needs reliable transport.

So, changes afoot, myself and one of my brothers will now be her full time carers, split between us, she'll live with me at my house in Kent for 2 weeks (which, geographically isn't ideal given her hospital is in East London) then 2 weeks at her own house with my brother and so on.

During the 2 weeks with me I'll be unable to work so this is a big change in my life situation and it's a bit daunting but it's a situation we don't really have a lot of choice in. My brother lives in Devon and will travel up to Mum's for his 'stints' every two weeks so, whilst he's retired and doesn't have a work situation to consider, it's still a big change for him too.

The saying about being afraid of change has never felt so relevant as it does to me at present but life has a habit of throwing curve balls at you from time to time. Hopefully we can bat this one out of the park but at the moment we're at the plate awaiting the first pitch (apologies for the corny analogy!).

New situations, new routines. Time will tell.

Day 1

I'm sat in an empty hospital cubicle waiting for my Mum to come back from the X-ray department. I have some time to kill and no Internet or phone signal so thought I'd write something.

Today was our first visit for her chemotherapy treatment. It's a simple injection and a few tablets and that should be it, however, 6½ hours later and we're still here! There was a 2 hour wait for the pharmacy to send her pills over to the chemo unit and then, following a review of her blood tests from a few days ago, they discovered her sodium levels were way lower than they should be. This subsequently meant she had to be transferred to the Major Treatment unit in A&E whereby she had further bloods taken, an ECG, hooked up to a sodium chloride drip and now is having X-Ray's taken. She will be kept in overnight for monitoring and possibly further blood tests tomorrow morning. As a result of all this, one of the chemo elements of her treatment couldn't be administered today so that will start next week on her 2nd visit.

So, what was expected to be a 2 hour visit is looking like it'll be a 24 hour visit. Not an ideal first chemo week!

Couple all this with the fact she also has to visit the dentist next Tuesday for a tooth extraction (after she's been back to hospital in the morning of course for some more routine tests), before then resuming week 2 of her chemo next Thursday, I just can't imagine what's going through her mind at the moment. I repeat, she's 94 (I have to keep reminding myself of this).

Speaking of her mind, the low sodium thing is a new one on me. The suspected cause is dehydration (although a number of things can be at the root of it) because she doesn't drink anywhere near enough fluids, despite our badgering her to do so. As a result of this condition, a loss of cognition can result and this solves a mystery for us because literally the day after I wrote my last blog where I banged on about how fit and on the ball she was for a 94 year old, she completely changed, almost overnight. Her mood had darkened (not in a sinister way, more a negative outlook way), her memory and awareness of what was happening around her started to fail her periodically and she became so very frail. Both of these could be attributed to the Myeloma but the doctors told us today that, certainly the cognitive issues, were most likely a result of the low sodium.

Quite alarming I must say. Having had a Mum who, all her life, has been fit and very sharp mentally up to age 94, barely been near a hospital (besides visits to give birth on 3 occasions) to suddenly encounter a lady who could no longer fend for herself and barely know which day of the week it was, is extremely upsetting and very difficult to deal with all of a sudden.

So, fingers crossed, the sodium transfusion will improve that, albeit whilst the chemo kicks in and simultaneously makes her feel poorly in different ways! All the fun of the fayre eh?!

I have moments of frustration with this, not aimed at my Mum, just at the situation because I hate not being able to fix things. I'm powerless to mend it and that's really tough to handle. I have a newfound appreciation of carers, my god what a tough job these people have and they probably deal with way more difficult people and conditions than my Mum and her sudden affliction (which I'm hoping will prove only temporary anyway). That all sounds a bit horrible but I mean it in the nicest way. It's not like we're having to bed bath Mum or anything, but having to more or less watch over someone and help them most of the time, all day every day, is both physically and mentally tiring. I don't begrudge it one little bit, I can't do enough for the woman who has done so much for me all my life and never asked for anything in return. It's just a shock to the system when it all comes about so suddenly. Three months ago, we were blissfully unaware of her diagnosis and were trecking around the Isle of Wight with her, climbing castles and walking along beach promenades, visiting old haunts we'd holidayed at when I was a small child.

It's all very sad but I guess such things come to us all eventually. I just hope when it comes to me, it comes quick and is over quicker.

It's now half an hour since Mum went to X-Ray, it's 9pm,i have no idea when she'll finally get back and then be allocated a bed for the night on a ward. I haven't eaten since about 1pm and I was up at 4am to go up to London to squeeze 4 hours of work in to earn some money before returning to Kent (where Mum is currently living with us) to then take her over to East London to hospital for her 2pm appointment. It's been a bit of a day, this Day 1!

But hey, it could be worse. I could be 94 and having chemotherapy for Multiple Myeloma. So wind your neck in sunshine and crack on!

Peace x