Quick add-on to my earlier entry. I mentioned mums condition today, and my worries about her state.
I am back for my evening visit now and am having an almost identical conversation with her now, as I did a few hours ago. When I walked in she informed me she had two things to tell me.
Her first was that the art therapy teacher had been to see her, and had discussed her joining the class, and saying the consultant had asked for her to be treated as a priority.
And the second was that she was now willing to use the nebuliser. I didn't mention this in the blog earlier, but it was discussed. Now that she has had a day without smoking induced coughing, she wants to use the nebuliser to help clear her chest. She has refused to use it for a week now, so that's a break through for her.

Another interesting occurrence has just taken place. After insisting all week that they are putting her to bed really late and it is affecting her sleep, she has now said they are waiting to put her to bed (8pm). She is currently outside smoking, and said that she needs to get back upstairs asap as they have been waiting to get her changed since 7pm.
Other things like this happening indicate that although she has 2 clocks, being able to follow what time it is is quite difficult for her right now.

So as I prepare to leave for the evening, I am left with a loaded mind about how she really is. Breathing poor, thought process getting worse, and stress levels going back up again. Can only hope she has a good nights sleep.

Night all.
Regards
Michael

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Another week begins.

Kinda anyway. You know what I mean. A nice short week at least eh. So I'm just finishing work and am on the train home to check on the dogs before walking up to the hospice to see mum this afternoon. Second visit of the day today.

I had quite a long weekend, going up to Derby to stay with Cadell, before heading further NW to see my aunt and see how she was doing recently. I had some interesting conversations with her as usual, as well as a deep conversation regarding arrangements for when she is gone. All was more than fair, and I'm glad we had the convo.

Right let's get to the important stuff here eh, mum.
Over the weekend I have stayed in touch with her to keep her as calm as possible, however there have still been upsets and misunderstandings on when I would visit over the period. Mis-communications and delays didn't help. This week she seems a lot better at moving about, and more coherent, which is a great improvement to see. However her worry and anxiety remains. Still saying she is not sleeping, spending time worrying about things, and stuck on a certain subject for no apparent reason.
This appears not to have been addressed with medication yet. Regardless of what mum has said previously, a conversation with a nurse last night clarifies once and for all what meds mum is on... The same meds she went in on, only difference being is an antibiotic. So no sedative pills like she has spoken of. And the long waits for her sleeping tablets also explained to me.

Needless to say it is frustrating as hell to see her trapped in this loop of stress and distress. Her current worry is, that its the TV causing her episodes, and she now refuses to watch TV in case it causes her to feel confused again. So she is actually scared to watch TV. Her words, not mine.
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So I'm back here at the hospice now, sitting in the gardens with mum in the sunshine (occasional sunshine anyway), having just eaten my lunch/tea of a Subway, mmmm. Mum is her usual chatty self again, but as usual, repeating herself, and somewhat losing track of time with some stories and events. Her recollection of a man stopping us at the lift a couple of days ago, and make conversation for example. She has just told someone in the smoking area that is has JUST happened, on our way to the gardens just now. There are other things like this that she slips with. But other things she seems quite fine with.

Another development is the suggestion of doing art therapy. I originally suggested this a week ago but she rejected it. It was again raised by her doctor, who again she turned down. However, today she was visited by the woman who runs the art classes, and after a short chat mum has suddenly taken to the idea, and said she is seriously considering it, and how it would help.

Mum has seen the doctor already today, so I might not get to see them today, but I do want to have a proper sit down chat with them sometime soon. Just so I am up to speed with what their aims with treating mum are, how they see things going, and what we should expect next, coming home, staying here etc.

Meanwhile, I am left wondering about other stuff. The shared burden, and how my contribution towards the whole caring situation is perceived by others. Recently I seem to have had a few comments made to and about me that suggest I am not pulling my weight, and need to step up a bit. Not quite sure how this came about, but while people think it, I worry about why they think these thoughts. I confess, I escape regularly for a couple of days at a time. To clear my head, gather my thoughts, and do long round trips to see my aunt who is also ill. Apparently the only family member who can right now. I wonder if this is a sin to do. To dare to care?

The conversation of funerals has been brought up, how its going to go, how its being funded etc. My aunt is also discussing hers with me too, and her wishes for when she passes. So there are some deep conversations being had. Unfortunately its a little derailed right now, but I'm sure we can get it all back on track somehow. In the meantime, its time to get things formalised and make sure that everyone's wishes are respected.

Right, I guess I better leave it there for now. Thanks for reading my thoughts of the day.
Regards
Michael

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Back at the hospice.

And this afternoon she is a little bit confused.
She is repeating a story to me about someone else who is poorly, and what is wrong with them. Now I'm not one for stealing someone's thunder, but I hate seeing mum being left to believe something that's not right. So I'm trying to make more sense of it for her, but its not happening.

Mum has however been making use of the pad I arranged for her, writing down thoughts and ailments to tell the doctors. She was also suspicious that I am collaborating with the doctor about things, as he dared to mention maybe doing some painting as a creative therapy. Sadly in her books its still a stupid idea, as there is no way she can use a paintbrush. Pen, yes, fag, yes, tea cup, yes, knife and fork, yes..... Paintbrush, uh-uh!

Either way, mum is somewhat calmer and less highly strung than she was this morning so that's helping her through the day somewhat. I had a nice fast pacer walk here from home this afternoon, after popping in to check on the puppies. So feel revitalised now. Head still a bit wobbly though.

Still not been able to see or speak to the doctor yet, although he was looking for me this morning after I left. So hopefully I can catch up soon. I am told a medication has changed today, so am keen to know what that is, and why it has been changed. I still want to know what she is taking in the evenings to settle and sleep.

We shall see where we go from there. I will prob come back this evening to at least speak to the nurse doing the meds to see what has changed.
Regards
Michael

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I'm not sleeping!

Well, I'm not, but this is more about mum. Today, as for the past few days, she insists she cannot sleep properly. Since being admitted a few days back, she has not agreed to try and sleep without medication. On the first night she was sedated due to the state she was in. Since then she has said they have sedated her a couple more time, but this is more than likely a sleeping tablet.

Speaking of sleeping tablets, she has been arguing since she was in the hospice last, saying that they won't give her the right ones, or that she is left begging for them. Now she says they give them too late to be of any use, and she can't sleep without them. I'm sure they could use a placebo, and she would sleep just fine. Dozing throughout the day, and dropping off in the evening. Even at home she slept well on the odd occasion she forgot her sleeping tablet. So I think this is nothing more than grasping at straws to stay in control of things.

What it all comes down to is more than likely anxiety. The GP has said this for months now, and has been trying to give her something to help with that, and finally had success the day she was admitted. So sadly that medication has never started. However they do seem to hae been using some form of stimulant or upper, as her spirit has been a lot higher over the past few days.... Until today that is.

Today, as we sit in the gardens she has just expressed that she has been feeling very up and down the last two days, feeling happy and miserable, but has not yet told the doctors. So I will see to that when we go back in.
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Been back in since writing the above but the doctors were doing handover, so was unable to speak to them. But will catch them a little later.

So I shall continue what I was saying already. Mum said while outside with me that she had asked a nurse this morning if someone could take her out for a cigarette, but was told by the nurse that she could not go out until she had calmed down a bit. Which is also an indicator of her stress and anxiety levels rising again. This is where it all started earlier in the week.
She has commented how the nurses were slow putting her to bed last nightn but admits she didn't ask them to put her to bed early. Also complained that apparently the nurse this morning didn't wash her back. That they left her sitting for ages in only a nighty, so was cold. As well as a number of other complaints about the hospice staff today alone.

Could the love affair with the hospice be over, or could this be the brain tumour coming into effect again as it may have earlier in the week, causing a mood swing and irrational behaviour? Either way, I am kind of glad to see it happening while she is still there. I was worried for a while that after her sedation on the first night, her moods and anxiety would not show again, and it would go untreated. Hopefully its becoming obvious enough now to look into.

So I'm on the train to work now, typing furiously to get this all said and done before the journey is over.

I left her in a fairly good state, but a little down maybe. She just seems over grateful for little things right now, like the cans of drink I took in this morning. Let's see how I find her in a few hours when I return.
And in the meantime let's hope that the rain holds out for my journeys on foot between stations and destinations.

Have a good day. Update to follow.
Regards
Michael

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Amazing the difference 24hrs makes.

In fact not even 24. After being admitted back to the care of St Christophers Hospice last night in a terrible mental state, mum was in good hands. After hearing what the doctor (Laura) had to say, and their plans for tackling the issues, I was confident they would do all they could.

After I left at about 8 last night I finally had some time to relax, and reflect. As well as call the care agency to cancel them again til mum is back out. I would love to say I had a good nights sleep, but that would be a lie.
So this morning I have come to the hospice (currently sitting on a wall by a tree, see pic) and am astounded in the change in mum. She was very upset last night when they tried to put her to bed, so was eventually sedated, and from that had a good nights sleep. Strangely she seems to have woken as a new woman.

Last night she struggled with her date of birth, what year it was, and counting backwards. Today she is as I would usually expect her to be. Talkative, coherent, and a lot happier in herself. Delighted to be back in the hospice. Which leads me to a strange conclusion.
While I won't dispute that she is genuinely unwell right now, and that the illness could be having some baring on the situation, I have to acknowledge that there is something stress related there too. After being sedated last night she calmed down, and I wonder if there is something still in her system, or just being back in a stress free environment that is causing such a radical and sudden reversal of most of the issues, especially with her mind.

While she showed happiness at being back at home, I do wonder if she stresses about being a burden to me and my sister, as well as stresses about the carers coming 'harassing' her and other such goings on, are having a negative effect on her health.
The carers have been brilliant til now, so there have been no visible signs of mum stressing or being distressed about them, but from day one being back home she has been confused about who is coming when, and has gradually gotten worse.

So being back here seems to have changed a lot of that, maybe the sedative has helped too. That would also indicate that using anti depressents would have been of benefit a while ago, just like the doctor ordered. This takes me back to wonder if a home is the better place for her now.

We have just finished speaking with the social worker, and I have expressed my feelings about the stress side of things, which Marilyn feels this could also be the case. While the sedatives are still in her system she seems much calmer. However as we sat and talked, and time passed she has become a little more confused again. But nothing like yesterday. Just getting stories a little muddled, crossing facts up, and repeating stories.

So let's see what happens with the doctor today, what line they pursue. I will try and give some feedback to them about what I have seen, and hopefully we will be on the same page :)

Right, back on duty I guess.
Regards
Michael

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How the day ended.

Phew, in a nice way.
Regards
Michael

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Off to the hospice we go...

...Again.
After an afternoon of phonecalls, confusion for everyone and some stress, we finally had a breakthrough at about 5.40.
The doctor called, as did the hospice nurse to say they had secured a bed for mum in the hospice, so mum will be somewhere safe, that can help in the next hour or so. No arguments, just a few frowns and groans, so all is well.
Now that she is not trying to do anything, and just sitting in the front room "relaxing", her frustration and aggression has calmed down somewhat, which is a relief.
So the ambulance is booked, and due by about 6.30. I will follow down there and get her settled in for the night, make sure she has everything that she needs, and a proper handover is done to the ambulance crew and the hospice staff. What to expect etc.

After that, chill the f**k out for a bit, and try and settle my mind a little. Today has put a strain on everyone involved, so everyone needs to take a deep breath (or a happy pill in my case) and recharge their batteries a little, ready for whatever comes next.

Thanks for reading todays events.
Regards
Michael

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Update on mum

Since the entry this morning and mum seeing the GP, things have got much worse. To the point where she has lashed out at the carer, screamed her lungs out at her, and become very confused. For the past 45 mins she has been getting on and off the toilet, each time she gets off it, she sits back down and says she needs to use the toilet again.

Its now reached the point where she doesn't know what she is doing, is unsure of what is happening, and I hae had to speak to the GP and NHS Direct, while my sister spoke to the hospice.
On the GP calling back he has decided she needs to go in for care, either the hospice or Lewisham Hospital.

Her levels of confusion and distress hae reached such a point that it is now unfair on anyone to have to deal with it, let alone to leave her feeling this way. So fingers crossed we will get a call back soon to see if a placement can be arranged for her. Hoping that it will be the hospice, then we will get a true picture of how she is being with people.

After the doctor suggested a urine infection it seemed plausible, but as the afternoon has progressed, the situation has become out of control. Now it can only really be something more serious, possibly the tumour.
Regards
Michael

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The confusion continues.

This morning mum was awake when the carer arrived, which is a first since she came out of the hospice. The reason soon became apparent. Half way into the carers visit I was summonsed to the room. It appears the carer was prompting the morning medication and had noticed last nights was still in the cup.
The sealed dosage box was still sealed for Mon AM, and looking at the meds in the cup it was clear they were PM meds. However mum point blank refused to accept that she was wrong. I removed the meds, broke the seal on the AM meds and put them in the cup. As the carer left a little later she called me to say mum had still not taken her tablets so I said I would keep an eye.
The second the door closed as the carer left, mum called. I went in and she told me she was sure the meds were wrong, and that she took all these last night. I reminded her that she had just watched me replace all the meds, which she was not sure she had seen at all, but still insisted these are the wrong tablets.

Throughout the carers visit a number of conversations were ended abruptly with mum saying "oh don't confuse me". In my mind the whole matter has gone from a slight concern to keep an eye on, to quite a serious worry now.
With mum having made herself something to eat in the kitchen too in the past few days, the thought of her being left alone in this confused state, where she is breaking her word of not moving about too much, I am now left worried about what will happen if she is left even for a short period.

I have spoken with the hospice and the GP's office this morning to arrange some attention for mum asap. The home nurse from the hospice tried to arrange a visit but it sadly clashed with the visit to the GP, which at this stage takes priority for me. He is more able to assess and take action.

Since she has been out for a ciggy the confusion has continued. She has just this second called me in to say I have incorrectly medicated her, and given her a sleeping tablet, as she is feeling woozy. I have checked and double checked the meds from last night and the sleeping tablet is definatly there in the bin, and was NOT administered this morning. However she remains convinced that she is feeling its effects. At the moment she is outside, showing occasional signs of distress, talking to herself about how she "can't do it".

I'm very confused myself now, so will cut this entry short and see what I can do to try and make things better for her.

Who knows what lays ahead.
Regards
Michael

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What time is it?

Over the past couple of days mum has really been struggling with time and the routine with the carer. Since she came out of the hospice, after demanding four carers a day were NOT imposed on her, she has been asking where the forth carer is. Every evening when the third carer has visited and got mum ready for bed, she will ask what time the last one is coming, and what time she can go to bed.
Explaining over and over that there are no more carers, she is yet to grasp that there are only 3 carers a day, plus my sister at lunch time.
Until yesterday this was not too much of a big deal, just a repeated conversation each evening, which is simple enough. Asking when she can take her meds, what time she can sleep, and what time the last carer will call. All easy.
However yesterday that all changed.
The carers changed around a bit as it was the weekend, which might have started the ball rolling. The evening carer did the morning visit, and the afternoon carer did the afternoon and evening visits.
For some reason during a conversation with Fatima (usual afternoon carer) mum believes she asked if she could come to mum later. This may have been prompted by mum commenting that she was early, to which the carer would have responded "did you want me to come back later". Either way mum assumed the carer was coming back late at night.

To add to the confusion, mum then thought there was another carer coming so waited up. At about midnight she pressed her buzzer, and Chantal went to see what was up. Mum has re-written this to be Fatima letting herself in at midnight, and is now furious that she did this. Subsequently she complained to the morning carer this morning, which was reported to head office.

From there on the story spirals into such a tangled web of confusion, I dare not start typing it all, in the fear of being institutionalised. The end result is mum not understanding the explanation of the carers timetable. I have marked the clock and written a key to what times people are expected, but on showing her it, she could not work it out, let alone understand what order it went in.

There is also a problem with her hearing things. Insisting the doorbell is constantly ringing. Which its not.

Add all this together, and add in her inability to complete a sentence, forgetting mid-flow what she was talking about. Not remembering that she saw someone half an hour ago, repeating her stories over and over, and all other such things, and now it becomes a serious concern.

Her train of thought is truly derailed, so help is required. I will speak to the GP tomorrow and we shall have to go from there.

Today has been a very testing day... I need a holiday. Magaluf anyone?
Regards
Michael

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