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How much can change in just one day, 24 hours.... Answer, a hell of a lot!

Where do I start, so much to tell, without boring you to death. So yesterdays entry points out I was going to see a counsellor, which I did and am very grateful for. Visiting the counsellor at St Christophers Hospice it was my first chance to see the inside of the place we are trying to get mum to visit on a day basis. And it is fantastic! I know she will enjoy being there for sure, especially the pampering.

I had a long chat with the counsellor, and started to find the points that were really starting to eat away at me. The lack of rest, the explosions of tempers, the constant workload and worry. She is a lovely woman and very easy to talk to, so none of it was difficult to talk about at all. And by the the end of the meeting we had agreed that I will be returning, she will be speaking to mum and my sister, and hopefully we can all start to find some common ground. So thumbs up for that part of the day.

The Virgin guys turned up right on cue, fixed the phoneline in a flash and all is working fine there now, which means the Linkline alarm and pendant is working too now. We just tested it, and all is good there. So another little worry done away with there.

I'm not sure if it was luck or circumstances, but I sure felt like I slept well last night. Waking up feeling rested in a way I have not felt for weeks if not months now. Which brings me onto the next part. Because I feel better mentally today, sitting in the house with nothing much to do is not a worry, and does not feel like I'm hiding away from the world. Fact is its a miserable day outside and really not much can be done with it like that. I will instead get some odd jobs done around the house this afternoon once the carer and nurse have been.

Karen the nurse from St Christophers is visiting this afternoon, to check up on how everyone is doing, and to see that mum is ok following a long sleepy spell she had for the past 2 days. She seems more alert today which is good. But will be good to see Karen as I have a few questions for her, and will be good to discuss them too. She is also seeing if she can get a wheelchair brought over for mum, so we can get her out and about more... Not going anyway today obviously.

Another great relief is the arrival of mums temporary hearing aid. After getting one from Clearer Hearing after mum had her operation back in the summer, things seemed much better for mum, being able to hear was a godsend. But during her stay in hospital the hearing aid broke (ripped tube) and was then lost. Since then its been difficult.
I contacted them about spares but subsequently had to replace the whole thing anyway. So I was delighted when it arrived today complete with spare tubes too... Thank you Clearer Hearing 🙂

Mum is now sporting her new temporary hearing aid, able to hear the tv WITHOUT headphones, which is a first for a long time now, and most importantly, able to communicate with the various people who need to see her like nurses, doctors etc. Best part is hearing the tv without headphones though, as before she was constantly putting on and taking off the hearing aid, which caused the premature wear of the tube in the first place.

Joy joy!

So there you go, 24 hours later, things are quite positive for once 🙂

Thanks for reading.

Regards

Michael

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Today is the day of help. With Virgin due to come and look at the phone line, and an appointment to see the family worker at St Christophers today, all seems well. With 2 things like that in one day, things will start to move along for me again soon I hope.

Phone line you say, what's so special about a phone line? Well that's really quite simple, its for mums LinkLine panic button system. Once that is up and working I will have a little more peace of mind for times like when I am out walking the dogs, knowing she is just a button press away from help.
As well of course as getting a phone service I'm paying for, that will be nice too.

As for the family worker, well that's for me. Someone to speak to about where my mind it at right now, and start finding a way to get back on the straight and narrow, as well as getting back into a good sleep pattern. I have an hour with her today to cover off all the things that are bothering me etc, and from there she can see if there is anything they can do to help, counselling, therapy, locking me up and throwing away the key!

So what else is going on today. Well first there is mum. Since stopping her steroid tablets (4 week course since she went into hospital now ended) she is sleeping. The nurse had said they had a slight upper effect, giving an energy kick, so its possible that without them she is just rather tired. Although yesterday when I tried to wake her it was quite difficult, so I am a little concerned too. Hopefully I can get some clarification on this, and maybe even look at her remaining on a small dose daily just so she has some energy.

Me, well I'm still the opposite. After getting up and staying up yesterday, towards the evening I felt tiredness creeping in and thought "yay, sleep" however when it came to the crunch, it didn't happen. I am sleeping, but its a big effort getting there, and I don't think I am reaching deep sleep. Almost sleeping with one eye (ear) open for mum needing me.
I considered a nap while the carer was here this morning, but instead just lay listening, then got up.

I have however managed to get a good walk in with the dogs this morning, lots of fresh air and clear thoughts, which is a good thing. Still trying to find that daily routine to stick with, but for now just getting pieces of it right feels good. Still eating crap, piling on the weight, so the exercise is welcomed.

I wrote a to-do list last week, and have finally managed to do one of the things from the list. Its as simple as posting a letter, but just finding the mental energy to write the envelope has been a challenge, as daft as that sounds. That's what I'm facing right now, and kind of explains where my mind is at the moment... If its for me, I can't be bothered, if its for anyone else, I feel obliged.

Right, enough whining, I'm off to get some bits done 🙂

Have a good day.

Regards

Michael

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Is that really too much to ask?
OK so over recent years I have got into a somewhat "night owl" routine, sometimes not settling for sleep til 1-2am. But that has usually been based around a routine of getting up at 9am or so (lazy I know).

But recently I just can't settle. Regardless of how tired I am, and how early or late I put my head down, it just takes forever to get to sleep. And then when I do get to sleep, its badly broken sleep, either waking up randomly throughout the night, or being awoken by my mum going out in the back garden at 3am for a cigarette (which she denies ever doing).

But now there is a further frustration, one I am suffering from right NOW! The carer. Ok I can't be hard on her, she gets buses everywhere, today is an exceptionally bad day with the schools going back and all.... But she is late!
I struggled to get up this morning, so I would be awake properly for when she arrived so I could let her in. Plan being, let her in, pop back to bed for 45 mins, sleep my headache off, be back up for when she leaves. Instead I am perched on the end of my bed, slowly waking up, hoping she shows up soon. Almost twenty past eight now, so becoming pointless to go back to bed.

It was the same story yesterday too. Pain in the ass bit is, if I wake normally and have slept well, sods law dictates that she will arrive on time. And if I decide I can't be bothered getting up in time to wake up a bit, she arrives a little early.

Now normally if I was feeling down, the world would hate me right now, and I would be feeling like such a victim of circumstances. So this is a gentle reminder to myself for such days, that the world is NOT against me, but some days its just a bit crappier than others.

On the other hand..... I still really wanna sort my sleep out. While I know I am a bit stressed and depressed which will play havoc with sleep patterns, depression making me want to sleep all day, and stress stopping me dropping off, there is middle ground to be found. I know 5-6 hours a night is not enough for me right now, and that I need an hour or two more. But to complicate things, of I go back to bed after the carer leaves I will end up over sleeping and spend the whole day groggy. Lose-lose situation lol.

Right, I'm going to commit to waking up and starting my day now I guess. 8.25, still no sign (which is a bit wrong really). So once she has been and gone, give mum meds and breakfast, call the hospital, walk the dogs, do some cleaning (floors need mopping), and all the other stuff one does daily.

Hope your day started better than mine, have a great day.

Regards

Michael

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Well yet another encounter with mum, and another explosive ending to the "conversation". Was just in the kitchen making light conversation with mum, and the topic of the carer came up. Apparently mum asked for a 5 minute boiled egg this morning and it was runny! This makes the carer completely useless and pointless to mum, and just reinforces the point that she doesn't need a carer. That's of course ignoring the fact that her statement before mentioning the carer was that she was very wobbly today.

She is hell bent on getting rid of the carer, proving she doesn't need peoples help, and right now, just making my life a misery. Naturally I try to put across the reason for having the carer, and explain what she is here to do, as well as "defend" the carer where I feel mum is being unfair. Mum does not seem to grasp or maybe just not accept the limited role of the carer, and how it is meant to work. Complaining that the carer does not understand her or speak english (which she actually does very well) is her main thing. When the St Christophers nurse offered to intervene the other day mum refused to let her, yet as soon as everyone leaves, I am left to take it in the neck.

Its times like this I understand why I am on medication and off work at the moment, because right now I'm in a dark lonely place, and as confused as hell. Am I doing right by mum? Am I meant to just roll over on my principals and agree with everything she says? Am I meant to do what I think is best for everyone? Should I get the carer cancelled? Or should I just take a chill pill and forget about it by yhe morning.

Problem is, if we go with the last option I am left with this burning feeling inside. I don't like brushing things under the carpet, forgetting about things like they never happened, its just not me. And then I'm left wondering if it didn't matter, why did it happen in the first place.

This is not the first argument, but they are getting more and more fiery, and possibly more frequent now, and I'm really running out of patience with mum and myself, as well as running out of confidence that I can handle this much more.

Her argument of me caring more about the carer than I do about her bites hard, and leaves me bitter and resentful right now, and my honest feeling right now is b****x, do it yourself then.

In closing the "conversation" I tried explaining that people are doing their best to try and help in anyway they can, and if she doesn't want their help, fine, do it herself. Her parting shot was "well they are not going to die in the next few weeks are they." Which brings us onto (now I say it and think about it) the key part....

Mum is yet to accept, face up to, and start dealing with the fact that she is dying. It must be terrifying to have someone put a tight timescale on your life, and know your time is short, and I respect her fear and emotions. My only wish is to make that time as comfortable and enjoyable as I can for her, but feeling like this.... I can't!

As I'm writing, I'm calming down (which to me is why I blog anyway) as well as making more sense of the whole situation and not just the flashpoint.
After taking a deep breath, I can see the carer thing is not working out, and will need to address that tomorrow somehow, that's numero uno. After that, the dynamic will change, so will be another thing to look at and rearrange. Am I happy with this situation? no!

So, as I calm, and my mind returns to normal thoughts (as normal as they have been recently) I shall start to ponder..... What next.

Thanks for reading and sharing a moment in my life.

Regards

Michael

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Nope for once this isn't about my family, this is about the idiots that insist on walking on the wet concrete on the new driveway. Its not rocket science, if the slab was not there the day before, it will probably be wet. The planks laid across it are the second hint that its wet... But no, none of this was enough.

Over the past couple of weeks they have laid concrete on 5 days, on each of those days someone walked through it every time.

Today they laid the last slab, and refinished the whole driveway. Not content with walking through the newest piece, they have also walked right across the whole thing for about 20+ ft, so messed up the refinish too. Well done, that's outstanding!

I'm sure by tomorrow, the barrier put across the drive will be moved and they will park on the drive too. Like I say, No telling some people.

Irritating really, having had such a crap driveway for years, I really hoped everyone would give the new lay a chance, so we had a nice driveway.... But no!

Regards

Michael

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The daily regime of pills for mum. Not sure what's harder, being responsible for sorting them all out and administering them at the right times..... Or being the one taking them.

Regards

Michael

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...Kinda!

After a bit of trial and error yesterday, experimenting with different ways of getting on the bath lift, and building her confidence.... Mum has officially landed in the bath.

Although not without lots of drama, but that's my mum right? She told the carer on her arrival she would be having a bath today, and they set about getting it all sorted. I had already set the lift up in the bath to save some time. So they ran the bath, and started to get ready. Finally it was time, and I heard mum exclaim from the bathroom, "what's the matter with this thing, its never been so slow before, the bath will be cold by the time I'm in"..... This is her first day using it! Lol

So either way, that's a HUGE hurdle overcome to say the least. She is in the process of working out how to wash her hair between her and the carer. Fingers crossed by the end of all this she will be a happy woman for the rest of the day. I can hope anyway.

So with that sorted, and a somewhat more positive spring in my step, maybe I will achieve some good things today. Having successfully cancelled two phone contracts yesterday, in my on going money saving exercise, and getting mum a new temporary hearing aid until her appointment on the 11th Jan for her new one, I'm not sure what other great things I am left to do now lol.

I know I have a few little chores left to do, so will try and recall what they are and get some of them done. I have my goodies from IKEA to fit yet! Woop!!!

On another note, the driveway we have been having laid as part of the renovations is almost done. Fingers crossed it will be finished laying today. I hope this time no one walks on it. Every time they have laid a slab so far someone has walked it it.

They have cut a few corners on the original plan, but its still a vast improvement on what was there. Goodbye sweeping curve, hello straight lines and angles corners.

Right, I'm rambling, so I'm off. Gonna try and get the dogs walked this morning, all positive!

Have a good day.

Regards

Michael

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Well its sure been one of those days, from the low of the morning encounter with mum, and the rage that followed, to the high of speaking to Karen from St Christophers.

Its amazing what a single conversation, albeit a long one, can do for your state of mind.

When she came to see mum today I was happy to have a fresh perspective on things. A different pair of ears to hear her gripes and comments on things, and then compare their feelings on the matters with me.

When it came to my turn to speak to the nurse, almost immediately she identified that I was feeling a little out of my depth. We discussed what was available and it has been decided that I will see the family worker/counsellor to talk through my feelings and fears, as well as anything I am subconsciously struggling with.

Mums meds will now be taken care of by the pharmacy, who will put them in doses so that's one less thing for me to worry about. After that conversation with the nurse I managed to be calm enough to talk to mum about the bath lift, and got her to try it out and find a method of getting in and out of the bath, so another hurdle overcome.

That's not to say a lot of negatives were not raised in her conversation with the nurse. I did feel rather bruised by the time she had finished talking with her, by some of the comments mum had been making about how things are.

I have asked for a wheelchair for mum, so I can get her out and about a bit more. The back garden and the walk to the doctors must get a little boring at times. Hopefully we should be able to collect that soonish.

So the day ends quite well, even talking to mum about taking a sleeping pill for the trip to Wales to see her sister, so there is hope yet.

Time to let the mind rest now, take care all.

Regards

Michael

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So for days now I have been building up to today, getting back on track, making a plan etc. But as we all know even the most simple plans fall foul of life itself.

I woke this morning.... With a headache! Great start. So the plan was, let carer in, take headache tablets, ask not to be disturbed unless it was important, then sleeeeeeep!

So I toddled into mum to see if all was well this morning and to tell her of my plan. At first all was well, she said get some rest, and that she would like to try doing her own lunch today to give me a break.... Awwww.

Then as I left the room she asked if I had bought her any cigarettes yesterday. Having not been asked for any, the answer was obviously no. To this she got very mad, shouting and complaining that she had specifically asked me to get her some.... I left the room.

For the next few minutes she huffed around the house getting upset, and I sat pondering how I would work this out. Carer due at 8am, I have to keep the dogs away from her. Now just before 8am, did I have time to run to the shops? Typically the carer ran late today, so by 8.05 I ran out the door, only to meet the carer half way up the road. I explained the situation and continued. Home minutes later, I let the carer in, put the dogs away and looked for mum. Finding her in the back garden..... SMOKING!

Morning world...... But not a good one!

PS trying to decide at present if I can be bothered to try and sleep this headache off once the carer has gone. Or take the dogs out and hope fresh air does the trick.

Regards

Michael

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Well as usual its been a long time since I last wrote anything, hot and cold, that's me. Anyway, let's get up to date shall we.

So since I last wrote a lot has changed. The biggest bombshell being mum going back into hospital. She had let herself get in a terrible state, and finally we had to make a decision for her.
A day or so after going in, I was summonsed to the hospital by one of her doctors for a sit down chat. The cancer has now spread to her lungs and brain, so time is suddenly much shorter for her.

She was in for about 2 weeks, and in that time I was also having a massive amount of refurbishment done in the house, so life was hellish to say the least.
During this time, the NHS, and St Christophers Hospice did an amazing amount of work, putting in place loads of equipment for her including a motorised hospital bed, motorised rising chair etc. Meanwhile we laid laminate flooring throughout the hallways to make walking easier.

So mum is home now, slowly adapting to a new way of life. Less balance and reduced mobility. We now have a carer come in twice a day to help mum wash and dress, the bits I can't really help with. I would like to say its made things easier, but that's not really the case. Tempers are short in this house these days.
Yesterday brought it all to a head for me, with mum getting angry about her medication and how I was getting it wrong. After trying to explain what was what a couple of times, she started shouting she would sort it for herself. Sadly she doesn't know what day it is, let alone what drugs she should be taking. She swore blind that the hospital had told her to stop taking 2 of them... Which they had not.

So I am slowly coming to terms with the fact that I'm in a pretty cold and dark place right now. I am off sick from work with stress and depression, on some mild medication to try and level me out, and struggling a little with day to day life at the moment.

I need some structure back, a routine, something to keep me occupied and my mind away from stressing 24-7. So I'm trying that from today. Hoping to get the regular dog walks in, and reach out to a couple of long forgotten things to keep me ticking over.

Meanwhile, the pity is not with me, its with mum, and for her suffering through this all. I know she just wants to throw in the towel some days, but other days she is happy as anything. When her health slips she tries to avoid doctors, but each time they eventually fix her up again. So we just have to stay on top of all of that. And keep her in the best possible health.

Love ya mum 🙂
X

Regards

Michael

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