I've been avoiding this part of TP, but I think it's time to accept it...

[Palerider]

Oh dear @Palerider I know how debilitating back problems are and the pain is so draining. Have you tried an osteopath? I was lucky to find someone really good who sorted me out even though I still take care and try not to bend.

It`s awful when you are prevented from visiting. Your mind can work overtime imagining all sorts while your dear mum will probably be unaware you haven’t visited.

As far as guilt is concerned. Take the advice I’m sure you would give others.

I hope your back gets sorted and you are able to make your holiday

In all honesty @Grannie G my mum talks about 'Simon' a lot, but when he visits he is someone else entirely, and at best there is some vague familiarity, but all I see is my mum regardless -it is a very strange place to be.

Last night culminated in excruciating pain and my dialling 111, only to be called back after I had finally nodded off on a cocktail of my new pain management regime at 3am. It was of course a complete waste of time resulting in my being seen by an out-of-hours GP who essentially did nothing other than say to attend ED at yet another hospital which would mean another start-over and the ever increasing going round in circles -back to square one as I refused to sit in ED for hours on end only to be told I need a scan and that would probably take another several hours if lucky. The difficulty is that my spinal team referral has joined a very long waiting list and essentially its the neurosurgeons who need to see me in the right hospital. The problem with that is the right hospital where the regional team are is a 20 mile drive away which currently is not achievable unless of course a miracle should happen, in which case I would not need to drive anyway. I do find it amusing because on the receiving end of it I can see how bad things are, so when I am at work I find myself agreeing with the public 95% of the time.

Anyway, this morning I resolved to visit my mum. I took yet another range tablets and forced myself into the car and went to see my mum having to prise myself out of the car on arrival which was not a pretty sight and resulted in spillage of coffee in all the places one would not one coffee to go -such a waste as well, only to be met with my mum on an 'off day' 🫣

 

[Grannie G]

such a waste as well, only to be met with my mum on an 'off day' 🫣

That’s the point. While you’re feeling guilty because you haven’t visited, your mum doesn’t really know whether you’ve visited or not.

At this stage the main point of a visit is to let staff know your mum still has a son who cares how she is being cared for and to hope you might strike lucky on a random visit when she knows Simon is you.

 

[Palerider]

That’s the point. While you’re feeling guilty because you haven’t visited, your mum doesn’t really know whether you’ve visited or not.

At this stage the main point of a visit is to let staff know your mum still has a son who cares how she is being cared for and to hope you might strike lucky on a random visit when she knows Simon is you.

Yes I know that's the point, but even though I know that I feel a sense of abandonment if I don't make the effort to see her directly and keep a check on things too. Its a real catch-22 for me and drives me to the point of despair at times

 

[Palerider]

Things are not improving and I am getting anxious over how this may pan out if I can't visit mum as there is no one else 🤔

 

[Grannie G]

You can only concentrate on getting better yourself for now @Palerider because you don’t need me to tell you you will prolong any recovery if you take chances.

I hope you have enough confidence in your mothers care home to know she will be well looked after until you are fit enough to visit

 

[Palerider]

You can only concentrate on getting better yourself for now @Palerider because you don’t need me to tell you you will prolong any recovery if you take chances.

I hope you have enough confidence in your mothers care home to know she will be well looked after until you are fit enough to visit

You are right @Grannie G and I don't know where to begin but the last several years with one thing after another dealing with the state, the CHC and a broken healthcare system have made me feel utterly worthless. The one thing in all of that is being able to visit my mum which at least feels worthwhile as opposed to feeling worthless. I worry about lots of things other families don't have to because they are not diminished as mine are to one estranged brother and united unlike mine and I get frustrated at the situation I am in despite trying to be a part of the solution. I do have have some confidence in mums CH but I know I have to keep watch and sometimes prompt when things aren't right especially when the staff (who are constantly changing) think things are ok -because in that kind of cultural environment things become 'normalised' when they are not 'normal' at all.

 

[Grannie G]

Just try to look after yourself and improve the situation with your back problems. An osteopath worked wonders for me but they did come with a recommendation.

 

[Palerider]

Just try to look after yourself and improve the situation with your back problems. An osteopath worked wonders for me but they did come with a recommendation.

Thanks @Grannie G -after further consultation with one of the GPs at the start of the week by telephone they increased my pregabalin considerably, consequently the first 24 hrs were a haze but it seems to have helped. I have agreed to be seen by a physio but I can't see it of being of any benefit as I have already been down that route.

I visited mum yesterday feeling more comfortable, but getting in the car is the worse bit as it involves raising my left leg which is still painful. Mum was smiling and seemed quite happy to woken by someone who seems familiar to her, she quickly scoffed the two cakes I took in and then managed to dose off. I did a quick sort of some of her clothing and had to reinforce yet again mums clothes are clearly labelled on the washing tags sewn into the seams. Its seems petty but I am sure other residents relatives will be wondering what happened to their loved ones clothing too.

I think the reality for me is that there is little I can do now to impact directly on mum's world, I guess dealing with what seem like lesser issues gives me some way of still being able to add some value to my mums life as it is now.

 

[Grannie G]

I agree with you about a physio @Palerider but wish at least you would give osteopathy a try I have had severe back problems and been on traction but an osteopath really helped. I’m careful now and recognise the warning signs but now I’m no longer a carer am just careful about bending and standing

 

[Palerider]

I visited mum today and she was shuffling down the corridor, I managed to get her to sit down to have her usual cake but she was in a mood which is unusual for her but this is the nature of this illness. It was clear that today I was not someone familiar. I don't have the emotional pain I used to feel when this happened previously, I have come to accept that this is it now, most days will be like this with the occasional shine through and thats it -its OK I'll take anything I can get these days.

I noticed she has a very yellow complexion and her eyes were tinted slightly as well, her fingertips and fingers were blue/purple and freezing cold. I suspect that her heart failure has worsened and I will contact her GP on Monday about her new yellow colour as in her liver function. There isn't anything anyone can do, but at least raising awareness of this change can help make sure she is not unduly suffering silently.

I now have an urgent MRI scan appointment which is smack bang in the middle of my planned trip to Greece. I was mulling things I've I decided this is an omen not to travel given how unpredictable the behaviour of my spine is these days. Can i get the cost of the flight refunded?? R is quite understanding and she was going anyway whether I went or not -I think she and her parents did well when they bought the apartment out there.

 

[Izzy]

That’s a pity re the timing @Palerider. Given that it’s an urgent scan I’m sure the travel insurance should cover that.

I hope the contact with the GP is helpful re your mum.

 

[Palerider]

Its been a strange week with the CHC and today is mums birthday, she is 84 today and she has surpassed the age she hoped to get to by 4 years, sadly not enjoying her golden years bound by this disease. I was surprised to find my nephew visiting -well shocked more like! His dad however was sat in the car, luckily for me as I have nothing to say to him, the care staff see things in a different light, but then they don't know what the history is with certain behaviours. Anyway mum seemed to be enjoying seeing her grandson and I joined in, D stayed with mum and myself for a good 40mins before he left and we exchanged phone numbers, to my surprise he seems to have seen some sense away from his father and he was telling me he has a baby boy on the way. So some peace making with some of the family, but I am afraid I can't extend it to my brother no matter how I try to think about it.

Besides the surprise mum was on good form today and that pleased me knowing she is ok in herself, that is my only worry now in all of this. I did forget her big card I bought, but she did get two boxes of chocolates and some new clothing plus some nice new posh PJ's which she really like -not a bad day I suppose.

She does have some mild liver failure @Izzy but nothing anyone can fix and it won't change anything in terms of eating for pleasure etc.

Now to focus on myself for once, MRI in two weeks hopefully will then know what has changed since the last one 🤞

 

[SeaSwallow]

That sounds like a really good visit @Palerider. Chocolate always goes down well.
And lovely to have a visit from your nephew also.

 

[Palerider]

So I visited mum today, not so good a visit today. She had fell asleep in a chair in the corridor just about hanging onto her dessert bowl with her thumb. The carers were all different again today. I know they have just had a recent recruitment drive and training but I can only imagine not all of the new recruits will feel this is work they can do. It does truly take a very special kind of person to this work day in and day out and to be consistent in being kind no matter what.

I took mums usual cake in which she woke and ate not surprisingly. It was painful not being able to help her get out of the chair which took some twenty minutes until she gained the gusto for one final push and then she was off, a painfully slow and awkward shuffle, her ribs on her back poking through her garments as she is crouched over. Once she starts this journey there is no stopping her. I walked very slow with her for a while and then said my farewell. Each time I visit I notice it is that little bit harder for her to get up and move or actually shuffle. The lady I see now sometimes when I enter is almost unrecognisable at times. There is nothing more I can do now other than keep on visiting and be with someone who I love very much.

 

[Sarasa]

So sorry that your mum is on a long slow decline. It makes me smile when you talk about her favourite cake though.

 

[Palerider]

I felt a need to do something that is in the fashion of how we used to be long before all of this. So today I started to make Christmas pudding just as my mum would have. Sadly we no longer have my grandads recipe who was a chef in the RAF during the War right up until after the War finished, mum bless her socks had lost it some time ago, so I use Delia Smiths recipe which is very close to it. The smell of the alcohol and fruits just reminds me of a time when none of the present mattered and for one brief moment I myself soaked it all up 😁. Tomorrow evening I will steam two puddings having divided the mixture. One for Christmas day and the other for New Years day which is one of the most important days my grandfather having passed on that day and now too my sister having passed on the same day. I have good memories of mum making her magic in the kitchen and my sister and myself wanting to help, I am sure at times much to her annoyance, but she never showed it.

 

[SeaSwallow]

Your post has brought back so many memories of how the family house used to smell when mum was making her puddings and Christmas cakes.

 

[Palerider]

Your post has brought back so many memories of how the family house used to smell when mum was making her puddings and Christmas cakes.

Yes, just mixing it and the aroma sent me back to the 1970's when things were of course all very different and life was as a boy so much more simple and my mum master of her kitchen -I don't know how she did what she did to be honest as my dad was often away in the middle east back then. It still amazes me how such a sloppy mixture transforms into Christmas pudding. Anyway they have both been steamed and sat wrapped to mature a little before xmas.

 

[Palerider]

The last two weeks I have been visiting mum more often as I was on two weeks annual leave. It gives a good picture of where we are at, no surprise nothing has improved. It is interesting how each person differs with dementia, mum apparently was writing in one of the activities which surprised me, I was shown a photo of it and she had separated the page up with lines and had written a list, most of it undecipherable but some of it clear as day, interesting there was a six digit number the first three obviously part of an old phone number, the last three I couldn't make out. It gave me some insight I hadn't seen before about my mum at this stage. The carers tell me she often shuffles to and sits in the nurse's office at the desk which I find quite amusing -truth be told she could be a bit bossy and I can just imagine her as she used to be saying 'its got to be done properly!'.

Anyway Friday was my birthday which I spent quitely and had a twilight zone moment in the car, my clock read 13:00, outside temp 13 degrees, my odometer last digits were 13 and it was Friday 13th - freaky stuff. It doesn't bother me because Friday 13th was my actual birth day. Later I attended my MRI appointment and late evening had a chinese take out as my only special treat.

 

[Hermann]

smack bang in the middle of my planned trip to Greece.

I hope you do manage to get away and have a break.

On the subject of the ancient world, what is the intended meaning of the Latin motto in your avatar?