Skip to content

Ok so today is "I give up" day, mum not me.
Since the other day with the change of colour of one of her meds she has become more and more determined to do things her way. Refusing to take the yellow pill now, so I have changed it with the few remaining ones of the other colour until I can see the GP about it, and now eating less and less.

Needless to say it is frustrating as hell to sit back and watch someone slowly starve themselves, as well as have such a low intake of fluids.

To me, another stay in hospital is on the cards, but if course she can refuse that too.

She said in short to my sister today that she is fed up of it all now and just wants to give up. Which is fine if that's what she really wants. But there is a right and wrong way to do it, and right now, it's the wrong way of doing it.

On top of all this, her interest towards her sleeping tablets is a worry too. Complaining that I won't let her keep the entire pack of 28 in her room. My reasoning to her for this is the kids. All she has to do is drop one, or the pack, and one of the little ones could be enticed by their pretty blue colour and down some.
Obviously I have a dual agenda, and my other concern is, with no one about, on a bad night she could decide to take more than she should. For obvious reasons I want to minimise this risk.

One way or the other I am going to have to speak to the GP and the hospice in the morning and try and get some advice and some hands on help with all this, as it is rapidly becoming more than I can deal with.

I can't imagine how it feels to be going down hill, knowing you are terminally ill, and at any time there may be a droip off point. But at the same time I can't imagine not trying everything possible to stay on to of my game too. Maybe its because I am not in that position, maybe we have different mindsets or something, but I can't figure it out.

There have been numerous "false alarms" along the way with her getting ill over something totally unrelated, and we go to the hospital, she stays in, gets hydrated and comes home much better. But this time the train of thought is on another route. Fighting help, refusing to discuss, and turning away almost anything offered to make life a little easier.

Needless to say, that just makes my life harder. I know, I know, poor me, but I'm not the one dying right. Nope, you are of course right. Instead I'm the one feeling shitty about being off work for so long, wondering what is being said about me, on medication so I can think straight and life a "normal" life, and be there for my mum while she wastes away right under my nose. What would I know, right!

Ok rant over. Here's to hoping that I can get some help from the GP and hospice with this tomorrow.
Tomorrow, my 38th birthday, and 3 years to the day that I ran around like a crazy man trying to get a doctor to see my mum who had just admitted to me she thought she had breast cancer.

Birthdays are great eh!

Tense times ahead I fear, but time will tell.

Regards
Michael

Sent using BlackBerry®

Yesterdays weigh in saw another good weekly loss, another 4lbs gone, in 6 days. That's allowing for a chinese treat meal the previous Saturday, and slightly reduced exercise this week due to appointments, weather etc. As well as the reintroduction of food this week, turkey, bacon etc.

So I'm a happy man. I'm now in my comfort zone, so losing a few more lbs won't hurt, but if the loss slows right down, no bother.

Well as its my birthday tomorrow, I have decided for a treat. Pizza! If I can still lose a lb or 2 by the weekend, bonus. If not, I will still be happy 🙂

Regards

Michael

Sent using BlackBerry®

Following on from the past few days of negative behaviour from mum, I have to say no real improvement today. In fact if anything she is getting worse.
As some of the more frequent drug takers might know, the same drug from a different distributor can be a different colour. On this occasion it is an anti sickness tablet to help with excess acid, and indigestion.
This afternoon I asked how mum was and she said still feeling sick and poorly.
At lunch time while making my lunch I noticed all her meds for today were still there, so I asked if she was going to take them.
First off she said she was sick of taking tablets at all now, and was fed up of them all. Then she said she was not taking the yellow one. Insisting it had made her ill the day before and she didn't want to feel like that again.
I tried to explain to her that it was the same as the blue/white one, but was from another supplier. She still refused to take it. She grew angry about me challenging her, so instead I ended up having to open a different packet and give her a different coloured one. Which she took reluctantly.

So today, she feels weak, has a headache, says she feels sick but has had Bovril and 2 bowls of cornflakes, and some tea. So sick or not she is getting food and drink in her.

Problem is, with issues like this coming up more and more frequently, I have to ask the question. Is she genuinely tired and fed up of it all (understandably) or is she progressing to the early stages of confusion now.

With the recent behaviour I am starting to think more confusion than anything else. Blaming pills for making her ill, refusing to eat certain things, claiming people are not doing things they are meant to etc.

She complained earlier that the new carer had not made her bed for her. I asked mum if she had asked the carer to, and all I got back was a dirty look and the reply that she didn't notice in time. She did however comment earlier that the carer had nothing to do.

Time to talk to the GP again I think, appointment asap.
I feel my stress levels rising again.


Regards

Michael

Sent using BlackBerry®

My patience that is.
It seems that whatever is suggested or offered to mum recently is wrong. The hearing aid was not as promised, the nurses at St Christophers are getting on mums nerves, she is sick of the doctor mentioning anxiety, the new carer is no good as she doesn't understand what mum wants, and my sister should not come around daily but believe text updates from mum.... All of these are of course mums perceptions of how things are.

In reality, but without wishing to sound harsh, she just seems a little unwilling and ungrateful right now. With help being offered at every turn and dip in the road, I personally feel humbled by how much is being done by both the NHS and the hospice to help with mums comfort and condition.

Anxiety IS an issue, and the more you step back and look in, you can see how some of these mood swings and outbursts are driven by the anxiety she is feeling. And before you say it, yes, of course I can understand the feeling of anxiety in all this. Difference is, I am accepting medication to try and help with my anxiety, caused by dealing with the stresses of mums anxiety. She of course finds it amusing that I am in fact taking medication for her. If I wasn't, I honestly think I would be close to giving up right now.

Today, following on from yesterday, the carer situation has once again changed.
Meeting the new carer yesterday afternoon mum said other than some difficulty understanding the carer (middle aged indian woman), she was lovely, effective and efficient. Today however she is now useless, not going to work and can't understand a word mum is saying, let alone mum understanding her.

The old carer made her last visit this morning, and from what I understand, Sandy, the new one starts covering both visits from tomorrow. From "just hanging around passing time", we are now at "could not get out fast enough". It truly seems, like me, whatever the carers do, its wrong.
As I have mentioned before the carer has been coming an hour early recently. It started as a one off and soon became the norm. This is why I requested a change. Today, when poor Sandy said she would be here at 8 tomorrow, mum was angry with her, complaining that she was messing about and she was meant to be here for 7. Not actually the case, 8 is correct. They finally agreed 8, which is a relief to me. I then explained in private to Sandy why there was confusion. Thankfully she was fine about this.

I am really hoping that mum can get along with this carer, and all the worry and stress about her that I have can relax a little. With my sister now visiting in the afternoons too, (just started yesterday) hopefully this is the start of me getting back to work. That said, mum is already saying to my sister that it must be a terrible strain on her, and maybe she should just call or text if she needs anything. Obviously I have set my mum straight, telling her that her recent honesty issues and hiding problems meant this was not an option, and physical visits were the only way. (Harsh but fair)

OK all this thinking is giving me a headache now. The day has already been too much for me. Medication and walk the dogs time I think. Air is needed!

Thanks for reading

Regards

Michael

Sent using BlackBerry®

So I ignored the talk about Graze for ages, then finally took a look, and was shocked.
Expecting nothing but seeds and rice cakes I was surprised to see the range of nibbles on offer, for those wanting healthy intake to those wanting their 5 a day but have a sweet tooth, there is something for everyone.

Don't believe me? Take a look yourself at http://www.graze.com/p/1XL4VNP, enter the promo code on the site and get your first box absolutely free, and a second half price, a whacking £1.70 delivered!
You can choose from a wide range of yummy snacks, and cancel any time, commitment free.

And the best part, I get £1 off my next order, just for you getting your box FREE! Talk about win-win!

So, promo code 1XL4VNP is all you need to feed us both for literally nothing.

This afternoon we headed to St Christophers for a meeting with Karen, one of the care nurses. From the off mum was obstructive and not really willing to talk about anything. Still hell bent on this whole "blood too thick" situation that she has been focusing on, which has been rejected a number of times now.

As Karen tried to work through the various problems mum described with her health, she dared to touch on anxiety. Big mistake! Just like with the doctor a few days ago she almost displayed disgust at the idea that she was in any way anxious or depressed with her situation, and insisted there was no point talking about it, or taking drugs. Instead it was something she needs to deal with herself, and not talk to people or groups about what she can do to help her cope.

After the session finished (somewhat early as mum was fed up and tired) I spoke to Karen in the hope she had seen the same as me. Mum stone walling anything offered or suggested to her. Massage, exercise groups, group discussions, medication etc, all very bad ideas in mums mind.

Problem is, this leaves me in a really awkward situation, of knowing mum is spiralling mentally, but not being able to do anything about it. Feeling a little powerless at this point to say the least, but trying to stay positive that I can do something at least. Hopefully the weather will be good to us over the coming days and I can get mum out a bit in the afternoons. Clear her mind a bit and let her unwind.

On a positive note, a new afternoon carer came today, prompt, efficient and mum seems happy with that. No hanging about, does what she needs to do and leaves. Which right now is what suits mum. She hates people hanging around for no reason at all. She says she will be back tomorrow, so I'm hoping this is a permanent fixture now. Now just the mornings to sort out. Mum said at the meeting today with Karen that the carer is MEANT to come at 7am. A little confusion maybe, or is mum trying to allow the current carer flexibility in order to keep her. Would be far easier if she just said " I want her to say ". Rather than having a go at all the other carers who come, about her timing, then being nice to the one in the wrong.

Phew, seems there are a few issues cropping up here again now, but all I can do is keep an eye on things, and try and get help when I can. Main concern now, mums mental state.

Regards

Michael

Sent using BlackBerry®

I can't complain really as the last few days have been quite good really, but I will come back to that. But today more problems with the carers.
The regular carer has started making a habit of showing up at 7am for some reason. Its hit and miss if she makes it on time, and today was a great example. Yesterday she said see you at 7am. She text me at 7.10am this morning to say she would be here for 8am, and arrived at 8.30.
On leaving she informed that it would be someone else this afternoon as she has college today.

Now this is where it becomes a bit wonky. The new carer has never been here and was a little late. We were called to be informed, and on her arrival she seemed lovely. I introduced her to mum and left them to it. Next thing I hear is mum ripping into her to say she is sick of the lateness and not knowing what's going on. The poor girl tried to explain to mum that she really needs to call the office and tell them she is unhappy, and that the carer can't really do much about it. Then mum started talking about why should she pay for the phone calls etc.

The habit of talking to the wrong person about things seems endless.

I will make sure she speaks to the care agency asap now though. I'm sure she will protest and say she should not have to though.

(As expected I just spoke to mum and she refuses point blank to speak to the office about it, apparently she has had enough for the day. So that's not going to get solved)

Other than that things are ok, her health has been getting better day on day. Oh although yesterday I walked into a kitchen flooded with gas. Mum had turned a burner on the cooker on, not lit it and sat down for lunch. I have never smelled so much gas in a room before. Worrying! Because of this my GP (who is also mums GP) feels its better she is not left alone right now.

Today, I am off to the housing benefits office to see if they can re-establish the payment for mum. Having just had a claim for DLA refused I'm not holding out too much hope. Also in the post today I received an official notice of possession on the property due to rent arrears, strangely enough caused by the sudden and unannounced suspension of mums housing benefits. Fingers crossed, but not holding my breath!

In other news, weight loss going nicely still. Daily intake of turkey and another of porridge are getting the stomach working again nicely.

Oh and I had a lovely blast from the past the other day too which has put a little smile on my face too.

Right, off to see the benefits people.

Regards

Michael

Sent using BlackBerry®

Thank you once again to the benefits office at Lewisham Council. Thanks to you I took a lovely call from my housing organisation today, informing me that I will be served with a "Possession Notice" because of the non payment of the benefits part of my rent for over 4 weeks.

I should add that I don't blame L&Q for this, its their procedure and right to do so. And the kind lady was good enough to go on to say that they are not considering eviction, but the notice is a formality for them to do.

Thankfully they are aware that the payment is based on the decision of the benefits office, whom I am meeting with on Wednesday to further the claim. If of course the claim is NOT successful, then I will have to absorb the full punch of the arrears, which stand at about £400 so far.

Add that to the other screw up from Lewisham with the council tax, and I have been dumped with £1000 of back payments because of their slow arsed, backwards way of dealing with enquiries and claims.

I also went to see Marilyn, the family worker at St Christophers Hospice today, to follow up on previous meetings and discuss where I stand right now. The more I talked, the more I realised how uncertain I am about things like work, caring for mum etc. I have a dilemma.

For me to return to work, which right now I dearly want to do, I need certain things to happen, and certain assurances to put my mind at rest.
I need to know that mum will not be left unchecked for more that about 2 hours at a time. When I go to work there is approximately a 7 hour window that I am not here for. At the moment the carers second visit is 12 midday, which would be just after I have left for work.

My thinking on the matter is if someone visits from 2 til 2.30 and someone else around 4.30, when I return home for about 6.30 I will know mum has been looked after. Because she is resistant to the idea of the carer being around too much, I would like my sister to be able to make one of these visits. Firstly to spend time with mum, and secondly to break the load up.

I have been putting off the inevitable preparation for me to return to work, knowing that the care side of things is going to go tits up somehow, and today proved my point perfectly. Mum is back to her negativity towards carers, saying they do nothing, are useless, and just wanna get in and out asap. But in the same breath, hates when they hang about for no reason. *sigh!

*time out for deep breaths, shallow breathing just writing this!

Riiiight, back to the keyboard.
So mum has decided to put up barriers again, out of the blue her mood has swung violently towards care, medical help and other things relating to her condition. I can't help but feel we are going backwards at the moment. Doesn't want to go to anymore appointments, and to top it off, spiralling from a simple comment made by the blood test clinic last week, has become obsessed by the fact she believes she has thick blood.

The comment made referred to the difficulty the nurse was having getting a vein to give up blood. She commented that the veins were thin, then when she got a good one, she said the blood was thick, too thick to get a feed from the smaller veins. Mum heard this as "Oh my god, your blood is like syrup, you need help", and since that time has told everyone she has spoken to that the nurse told her to get it sorted... Which she didn't. All she said was, aspirin or salt would help thin the blood a little.

Of course she mentioned it again today, and that turned into an argument, so I have said I will book her an appointment to see the GP asap.
Next up was my apparent failure to get her more sleeping tablets, as she has apparently me asked numerous times to get them from the doctor for her. My fault of course, even though she saw him last week herself.

So an all round pretty pants day really.

Highlights otherwise.
I reached my weightloss goal at the weekend and had a chinese. 6 hours to eat what usually takes me 20 mins.
Adapted diet starts from today, with the intro of porridge and protein every couple of days.
The weekend saw the 20th anniversary of me passing my driving test, and also the re-passing of my mock driving test.

Ok, fingers are aching now, so adios for now.

Regards

Michael

Sent using BlackBerry®

Ok, so we have been leading up to this day for a while now, and finally it arrived. Audiology and mums fitting for her new hearing aid.
We rolled up just in time for the appointment, and were called almost immediately. Lovely little, clear spoken audiologist. She explained what the new hearing aid was all about, how it worked and what was expected of it etc. Mum had her old hearing aid in and said she understood.
It was programmed and fitted, and when asked was it a bit loud mum said it was indeed loud and clear. All was explained, we left, and on the way down the corridor she exclaimed she was fed up of seeing different people as they all say different things and do different things.
I explained that they had been consistent in their decisions, and all had been done as planned.

In the car on the way home she then decided to say that the new hearing aid was in fact no different to the current one, no improvement in sound or volume. Great, so instead of telling them that, she has told me, which makes me feel is was somewhat pointless bothering.
Unless of course she is just being bloody minded about things and it IS actually better.

I have to say I am somewhat grumpy today, just no patience for things, blocked in by a builder, messing about with the appointment, and now we are in the kitchen where she is (through no fault of her own) not making a very good job of her tea. I really should take my meds and hide away for a while lol.

Meanwhile work called for an update on my return. This brought to mind that I still have not managed to get a proper plan in place for when I do. So still have that to arrange. Making sure the correct number of visits and checks are made on mum daily in my absence is indeed still a worry. Not sure I will ever achieve it to be honest, but I can try.

Days like today, watching her walking around the kitchen with a saucepan of boiling water, confused with how best to deal with getting the egg out of it, whilst shaking and tipping her hand is a massive worry for me. A number of other things indicate she is starting to get a little confused, so that's something else to go and get looked at.

I just dared to mention to her that she is getting a facial twitch, much like the one she had before last going into hospital. Apparently I should just shut up and stop depressing her.... Hmmm OK.

Regards

Michael

Sent using BlackBerry®