The home coming.

I'm sitting in the hospice now, just waiting on mums lunch to be brought around, so we can get ready to take her home. This morning I emptied the chemical toilet to get that all fresh again. Sadly I could not get the sewer open to drop it straight in, so it had to go into the loo, and that got a little messier than planned. But hey ho, all cleared up now, and I know what I'm doing in future eh.
After refilling that, I got myself off to the hospice a little later than planned.

After a soak in the sun, and a fag break we went back inside, where I set about making a large Moonpig card, complete with pictures of the hospice, written from mum and sent to her sister, so she can see where mum has been, and now admits she will miss.
While doing this Barbara, one of the nurses I know came over for a chat, laughing about the stories circulating amongst the staff here about my ways and my sexuality (jokingly). Having joked with Anna about me possibly being gay due to my ways and my man-bag, Barbara kindly dismissed any doubts in that area for me. (Being my friends mum and all)

So for now we are back up in the room waiting for lunch to come around. And as I write I have just noticed a nasty cut on mums leg, so the nurse is just taking a look at it now. That's a shame, because she was having a pre-lunch nap. Still, better that its cleaned up and dressed before it gets infected.

Meanwhile I have remembered that mum still didn't see the art school people about her modelling clay. So I will pop off to the art shop or something, and grab something she can use to practise with at home, and get some strength back in her fingers and hands.
The staff nurse has just come around to start the handover for mum, the meds and what's needed to take home with us. So once that's done, and dinner is consumed, we are freeee to go :)

Better get on now, catch y'all later.
Regards
Michael

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Home time.

Its that time again, and I have had official confirmation from the hospice Staff Nurse that mum is to come home tomorrow. Having spoken to Jemma (apologies for earlier spelling her name Gemma), we have confirmed the arrangements for tomorrow.
She will be let go after lunch tomorrow, once she has food and meds inside her, and will be sent home with a dose-it box for her meds, and a nebuliser for her breathing. The nebuliser is her new best friend, and she is delighted with it.

The mattress however is another matter. The engineer came today to inspect and replace the air mattress (if required) but decided it is working fine, so there is no reason to replace it. Have a look at the picture and you decide if you could sleep on that. It has a rubber sheet over the top, but how the hell do you get on it?
So everyone from the district nurse to the hospice are aware that mattress is awkward as hell for mum, but apparently she needs to try it out, and use it in front of the district nurse, so she can be assessed, and they can decide if it indeed needs replacing for another style.

However.... Mum has other ideas. In her world she will simply NOT sleep in it at all, not even try it, but instead she will use her reclining chair to sleep in. Sadly she doesn't pay any attention to the fact that it will make her bed sores terrible, and just cause more discomfort. Oh well, there is no telling some people eh! So that's something that needs dealing with as soon as possible, but at a steady pace to allow mum to feel in control of the situation.

I have to say her walking is much improved, and she does her walks up the hallways to collect her wheelchair, and as a reward she gets to go out for a cigarette. As she does better with her walking, I have now increased her walks to return the wheelchair after a cigarette too. Positive rewards, and its working well. She has also championed getting out of low chairs, as well as kicking doors open. Mum is turning into a proper thug!

Work have just been informed that I will need to take tomorrow off due to mum coming home. Not sure how it really went down, but my manager was gracious and polite, so I don't feel any pressure from there about being off, for which I am grateful. Now to arrange with my sister with regards to what she plans to do tomorrow. With mum coming home at 12, and the first carer arriving at 3pm I wonder how she will fit in coming around to help mum settle home. Fingers crossed I will be back to work by Friday, and working out how this new routine of mine with working and caring is actually going to work. I do love a challenge.

I always dread mum coming home from hospital or the hospice. Not because I don't want her there, but not knowing what to expect. With her saying she is going to sleep in the chair, will go to the kitchen window to smoke when desperate etc. Then there is how much she will try and move about, will her eating and drinking habits change from what they are now (which is near perfection) and so on. Coming home sounds such a simple thing, but when you break it down, there are so many factors to consider its mind boggling.

Right, I'm getting dizzy thinking about it, so I'm off for some fresh air. Catch you soon.
Regards
Michael

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Flustered!

On arriving this afternoon mum is very frustrated and flustered. Getting stressed again over nothing in particular. Her latest encounter with Gemma, one of the ward nurses has left her upset and angry, because she dared to raise the subject of mattresses again.
I arrived towards the end of the conversation, just in time again it seems. Where mum was trying to tell the nurse that she did NOT want an air mattress at home as they were too soft. Gemma explained they were still trying to get the right kind of mattress installed at home for mum, hopefully similar to what mum is using here at St Christophers. However as I understand it, the Sidhil Plus is the only air mattress Mediquip supply, so if the one they deliver tomorrow is the same and operates the same as the one we have already, we will be back to square one.

It seems that every subject I touch on, mum goes on the defence to it. Trying to explain the mattress situation to mum, and how you can make the mattress harder, I was shot down in flames, and she just became irate and huffy about it. Once I demonstrated the P-Max setting on the bed, she accepted it was usable.

Then we moved onto using the toilet. Angry that she has been told to try and use it more, she has refused to have a drink this afternoon when she came down stairs. Stating that she doesn't want to use the comode too frequently, and wants to be able to use the toilet properly, especially once back at home. With this in mind, and seeing as the toilet is only just outside her room at the hospice, instead of asking for the comode to be brought to her, instead ask for help to the loo, and practice dressing and undressing herself and going to the loo. But surprise surprise, she refuses to try, or practise, siting it as pointless. Confusing or what!

So to get her home, their main concern is her bed arrangement, once that is sorted they seem confident that she can get back to being at home. I'm not sure if she is using the can't use, and refuse to practise line as an excuse NOT to go home. Hoping that they will keep her here longer until she can. Maybe she doesn't want to go home at all. But either way, with their stated plan it doesn't sound like her idea would work anyway.

So we have not drinking, and not wanting to use or practice using the loo as her starting blocks for being awkward. Now add to that the return of confusion. We have just had a five minute exchange about the bar or peppermint I apparently bought her the other day. I did buy her a bar of peppermint chocolate the other day, so suggested she meant that. NO she said, the white bar of mint you got me. And continued that she wanted some when we got back to the room. I said there is no bar of peppermint, just the mint chocolate, to which she promptly just sulked and refused to answer me. Once we got back to the room, I gave her the chocolate and asked her to sniff it, which she did, and agreed it was mint, but not what she was talking about. *sigh.

The latest conversation has just been with Gemma again, about the bed and carers etc for when mum comes home. As soon as the bed was mentioned mum started talking about the frame having no bottom to it, and that mattresses won't fit it. That is in line with what she was saying to my sister earlier about putting a piece of board under the mattress to support it. Not quite sure where she has got this idea of a bottomless frame from, but it seems that she is stuck on this. Let's hope this isn't the start of a repeat of before.
What worries more is that she is putting the television on to try it out for a while. Put this experiment with the confusion and it will be enough to convince her that the TV is the cause of her episodes once and for all. Even though I have said here that she is clearly irritable already.

So I am somewhat filled with worries and concerns about how she is going to be over the next day or two. Is this a passing moment, or is she slipping back down hill again.
One bonus is that she will be taking a nebuliser home with her, and she is positive about this. So, grateful for small mercies eh.
Regards
Michael

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Honesty sucks!

Honesty is the best policy, the truth will set you free, and all that other bullshit... I'm sure I have written about this before, but here we go again. Lies and secrets will kill you and destroy the soul blah blah blah... But sometimes that's just not true.
There is a time and a place for total disclosure, and its certainly not a majority thing. The truth doesn't set you free, but instead it ties you up and beats your brain up until you can't take any more. Well they are my findings anyway.

Recently I have found it hard to keep my thoughts and emotions under cover as I usually would, and anything that has bothered me or sprung to mind, I have just blurted it out. Apparently that wasn't such a smart idea. Honesty combined with a low feeling results in nightmares, thoughts that won't leave you alone, and your mind working overtime building up scenarios to make you feel like shit.

Yesterday it all came to a head with Cadell over what started out as small trivial matters. Me being me spoke my mind, the response I received was not what I wanted to hear, and my mental state at the time just turned it into the nastiest mixture of thoughts that I have had for some time now. Some still linger now.

But looking back over the past few days, the same has happened over and over with different people and situations. This was just the one that made me realise how much of this stuff I actually manufacture for my own suffering. Situations I create which deep down I know will spiral out of control, cause arguments, and leave me in a worse state than I started in. Self harm of the mental kind if you may.

So from this point, I will think twice before opening my mouth about things, and think hard regarding their validity and relevance to the situation I am trying to connect it with. That's a hard thing for me to do, think before I speak, but its worth a shot.

So I apologise to anyone who suffered the consequences of my thoughts, conversations and actions over the past few days. I am working hard to cleanse my mind of all these stupid thoughts, and get me back on track. In the meantime, if I talk shit, look the other way :)
Regards
Michael

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Under the influence.

So after my earlier outburst of emotion, like a man full of hormones lol, I took my meds and went to bed for an hour or so, just what the doctor ordered.
I would like to say I woke perfectly fine, but that's not quite the case. However I did feel much calmer and numb to my earlier thoughts. Even to the point of realising that I might have been a little OTT earlier. Regrets I do not have, but a different perspective I do. Thank goodness for drugs eh!

On returning to the hospice with a revived brain, I was able to engage more in conversation and thoughts. Sadly all this has brought is more concern about mums state. Talking to me of earlier conversations with me, however remembering them as conversations with Paula. And then changing the stories of how things had actually happened too.
Yesterday she told a woman how it was a shame they could not water the plants at the hospice, but was not sure why she had said it, nor on what grounds. Today she is doing the same again, starting to make a comment on something, but not actually having anything to say. Or making a completely unfounded statement. Tonight she was hell bent on talking about the mattress situation, but actually has no understanding of it. She just wants an opinion on it, and for that to be heard. So I play along with it.

She also mentioned the physio again, and saying she had been told to both exercise and not exercise by different people. However we still managed a very good paced walk up the hall to collect a wheelchair before going out this evening. Adjusting her walker along the way to better suit her height and walking stance.

The big one however is the TV. Mentioning in the garden that she still hadn't tried watching it, but really should, I popped it on when we got back to the room. Slightly panicked she aired her concerns, but I said I would be there anyway until I had to leave. So I have left her with the nurse, and hopefully I won't get any stories of how badly she slept etc.

Anna, one of the staff on the ward has been brilliant with mum too, always popping in for a chat throughout the day :)

Right I'm off for dinner and more sleep. G'night.
Regards
Michael

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Total Confusion!

That seems to be the way today is going. Mum is starting sentences and ending them with a different subject, getting muddled about little things, and most worryingly, seems to be confused about what she has been told about exercise, and how they administer medication.

Starting with the exercise thing. On speaking to mum a few days ago she mentioned that she had been taken to the toilet by a nurse during the day, she had walked her to the loo using her frame. On talking to the nurse, mum is sure the nurse congratulated her on how well she had done, and said she would practise this with her, however mum was not to walk with ANYONE else, and that the same nurse would walk with her again in one weeks time! Very strange, and hard to believe, however mum is sure thats what she was told. The physio on the other hand has been encouraging mum to practise walking, but NOT on her own. Which is slightly more believable to me.
So to laugh in the face of this idea, on returning from the gardens this morning, I took mum for a walk up the hallway and back again. To give an example of her pace, the trip to get a wheelchair and return takes me about 40 seconds. The walk with mum took exactly ten minutes. So when she said her problem was trying to go slower, I chuckled to myself (in a loving way). But it was a very worthwhile exercise, and one she seemed to enjoy greatly, so I have said we will repeat it whenever possible. Its also nice for her to get out and about and see the other people on the ward.

When we were downstairs this morning getting tea, she proved how popular she has become there, and how social she is becoming, waving to people, speaking to staff etc, so she really is coming out of her shell a bit. Which is nice to see.

So then we get to the nurses and medication. Once again mum is starting to show doubt towards some of the staff, and build up a black book of whos who. Starting from a few days back she started commenting on the way some of the nurses work. The way meds are administered, how they speak etc. Examples being, a nurse asked mum if her visitors could please return the wheelchairs after use. Seems fair enough but mum took offence to this and felt the nurse was being awkward, so she has a mark against her now.
And another nurse 'apparently' forgot to administer her eye drops, so is now useless.
Other than that, they are all still lovely in there.

A member of staff she does like is the physio. Other than complaining that she doesnt come around frequently enough, apparently she should work a seven day week, she is a lovely woman. This lovely womman happened to be on the ward this morning when mum was having a walk, and was also there right at the very moment mum rose from a rest on a low seat. Having taken mum to the end of the hallway, I got her to sit for a minute to get herself together before the return trip, but the only chairs were low. Expecting her to need a hand to get up, I told her to get ready to go, and prepared myself to help her up. To my surprise, and the physio's delight, mum got up with very little effort and was ready to go. The physio exclaimed "very good, I dont need to come and see you today do I"

As a whole she is doing well, perky, full of energy, but just needs to get moving now. So I will make a point of that each visit now, and hopefully my sister will too.
Speaking of my sister, mum is growing increasingly worried about her health. Being ill the other day from what she thinks was lack of eating. Always on the go, and clearly stressed. Mum is now trying to avoid Paula doing too much for her, feeling guilty about how ill it seems to be making her. Mum seems to think that she is making Paula ill. I dont know where mum is getting this from, if Paula is telling mum things that she is misunderstanding or what, but mum really doesnt need this sort of worry right now.

So thats me for the morning, I shall report back on her condition this afternoon.

Another day draws to a close.

And so the weekend ends. Pretty quiet weekend for me this weekend, compared to those of recent weeks anyway. A lot of time spent at the hospice, and with mum, starting with our trip to Bromley onm Saturday.
A great confidence boost for mum on many levels, not feeling like an oddity to be stared at in public, and building confidence in being able to be around the shops and choose things for herself once again. Not to mention the exercise walking to the car on her walker. A long way compared to recent walking expeditions.
The evening was spent relaxing and not doing a whole lot, in fact I believe for a weekend I had quite an early night. Then again this morning, back to the hospice for cigarette duties. 3 visits today (as usual). The 2 days have been so different, from blistering heat on Saturday to a chilly, rainy day today, which has proved lazy and non productive.
I am at the hospice for my last visit tonight now, sitting in the gardens under shelter, watching mum smoke away, and listening to the raindrops falling, and the koi jumping in the pond nearby.
I have noticed the latest change in mums behaviour is quite interesting. Her memories are formed from conversations and triggers. I was here for her dinner being brought around this evening and it was omelette and salad. She protested about the salad saying she didn't like salad, so would eat the omelette.
However on my return this evening and asking her what she had, she told me it was omelette and cauliflower. The cauliflower was a memory from earlier in the day when I showed her the kitchen working on lunch. She had not actually had any at all. She has done this a number of times today, and over recent days, but this was the most prominent example to date.
At the same time her memory itself is wavering away, some long term stuff right up there, short term not so good for her. Losing track of time frequently, and replacing content of conversation with things she would rather have heard. That bit gets awkward at times, especially after meetings when agreements have been made about her care.

All in all though, her general health seems pretty good, and her spirits high. Speaking to her sister, Joan, on the phone for 20 mins this afternoon, their longest convo by far for some time. Eating well, craving chocolate and fizzy drinks like an 8 year old. Her worries are mainly about my sister, and her well being. Constantly worrying that she is not looking after herself. Obviously a worry mum really doesn't need right now.

Things as ever are strange between them, some strange comments made by both. Coping mechanism, or true feelings, I don't know which it is, but its hell to be in the middle at times. Whisperings of my distance are again rearing their heads. Quite how I am distant, coming 3 times a day, working and living a home life inc the dogs, is beyond me, but hey, my critics have spoken.

Right, I better get mum back inside now, and let them get her ready for bed. Oh speaking of which, getting ready for bedm mum has slipped back to the old "they come when they want to" story about nurses getting her ready for bed. Shying away again from the buzzer, and asking to be put to bed. Instead preferring to wait til they come, then complaining the next day about how late it was, and how she begged for her tablet. Her other grip today is how a nurse dared to ask for the wheelchairs to be returned to the top of the hallway after use. Seems fair to me, but not to mum lol.

Oh one more bit, we had a great conversation in the garden this afternoon with another lady, proper exchange of thoughts and words, and mum said how enjoyable it had been. On coming out tonight she commented on how she hoped that woman was not out here again, as she talks too much and was irritating. My my!

G'night.
Regards
Michael

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How things change.

Gone for just a few hours, but within that time mums mood has changed somewhat. Currently out for a cigarette, she commented that she has almost finished her last book to read. When we spoke about this earlier, I suggested I will take her to the shops tomorrow, book shopping. Will do her confidence some good to know she can still be helped around the shops in the chair.

When I mentioned that we had talked about it before, and that I would get her books tomorrow, she said she needs one for tonight. So I suggested watching TV. She replied that she didn't want to. Asking why she didn't fancy TV, she said that to be honest there was nothing she wanted to watch on. So I asked if that was the truth, or was she still worried about watching TV in case she had another episode.
She didn't seem to like that question, so I was chastised, and told not to talk to her about that. When I asked why not, I was told that she didn't want to, and didn't like talking about it, and that was that. Oops!

So it seems after all the reassurances of the doctors and specialists, mum is still too worried about having another episode, to watch TV like she used to, which to me is rather sad and upsetting. She has had so much joy and pleasure from TV over the years, and now suddenly is almost afraid of it.

So the best I can do is try and take her shopping tomorrow, quickly popping out from the hospice, some fresh air, change of scenery and give her the chance to pick a new book or two up for herself.

Hope tomorrow is a bit more cheerful. Although to be fair, now I have managed to change the subject she is chatty again, albeit complaining about hygiene. Always something to 'talk' about eh lol.
Regards
Michael

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A few moments to reflect.

So the past 48 hours have been quite the strain really. Nothing drastic, but a whole lot of little things all at once can really take it out of you.
Yesterday for example, taking the day off work to sort out seeing the doctors at the hospice turned out to be a smart move for more than one reason.
Mainly of course to see the doctors and get the low down on mum was the important part, and I succeeded in doing that. I will come back to that soon.

The day started with good walk with the dogs, then home for a healthy breakfast. All going well so far. Next up, pop to the shops for mums daily paper on the way to the hospice, this is where the cracks started to appear. As I walked in the shop I realised I had not put any change in my pocket, so walked to the cashpoint to get some money... Errm problem, request declined for just ten pounds! This was the sign of trouble. Then on going in the shop they didn't have mums paper. I managed to get a paper for mum using another card, but was left wondering what was wrong with the main account. Stressing all the way to the hospice, I finally remembered after a bit that I could use the PC's there to check my account.

Horror, 2 direct debits I was not expecting to come out til next week were gone, leaving me seriously overdrawn. Panic set in further. The next few hours were spent trying to gather together enough money to balance my account to ensure the payments were honoured. Finally by mid afternoon I managed to get that sorted, and was all squared again. Panic over with.... Almost anyway, but that's another story! Trust me.

So early afternoon I had got a message (finally) from the hospice to say the doctor was able to fit me in mid afternoon, so that gave me something to work towards.

I finally got to the hospice and went straight to see the staff for 'the chat'. The idea of the talk is to get everything out in the open, any concerns and worries addressed, and of course to plan how mum can come back home again.
The conversation started with concerns, so I raised my main one, being that mums original problem of confusion and distress had not been forgotten as it was now hiding away well. I was assured that they felt the confusion was caused by the chest infection they were treating, and they were confident it was unlikely to re occur unless an infection returned.
The add-on to this is the whole issue was her 'fear' of the television, and what it might do to her if she tries to watch it again. Once again they cited the infection as the true cause, and suggested that she should maybe try 30 mins of TV supervised while still at the hospice, so she could build confidence that it would not cause complications for her. She was not too keen on this idea, saying that she felt she was not getting a say in any of these decisions, and like her opinions didn't count. So we left that part there.
After this part she got a little defensive and started to almost avoid the conversation, instead choosing to make her own topics to discuss. As we discussed the mattress she needed for home, she rejoined our conversation, saying she just wanted her old foam mattress back. Forgetting all the pain and discomfort of bed sores, in place of an easier life. The idea of this convo was to get rid of the segmented bed that she currently has, and replacing it with a solid air mattress. She caused confusion by stating her bed sores were back, but still wanted the foam mattress back at home (which will just make them worse). So planning for the future we have agreed they will look into getting the style of air mattress for mum at home, as the ones they use in the hospice. Another problem addressed, and hopefully sorted.

So after over an hour of talking we decided on the following.

Mum will try the art therapy classes and consider coming back weekly for them.
She will continue to come to the hospice for physio.
We will try her watching TV before she leaves the hospice, so she can regain confidence in watching it.
The plan is to have her home mid-end of next week.
That's cutting it all a bit short as I have just realised this is dragging on a bit, and I have another entry to write yet. So thank you for reading, and I hope this all made some sense.
Regards
Michael

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Beautiful poem *gulp

When fear comes through the window, common sense flies out of the door.
I know because I experience it more and more.

'How brave you are' my friends all say, but they don't know how every day, I fight the demons and I pray, for strength to face what lies ahead,
Regards
Michael

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