sicut animam suam : 'it's just life'

[Palerider]

Yes, it is lovely.
Reminds me of someone who once posted on here, that she imagined us all, silently holding hands through all this.

 

[Palerider]

Last week visiting was restarted but no one told me of this . Its fine when not working but when I am it makes it difficult to fit in times to visit mum -I have explained this on a number of occasions -I may as well speak to the wall . Anyway I briefly had mum on the phone but she was more preoccupied with the nurse than hearing me lol, anyway I said I'll see you soon which prompted a response. I did get a decent update from the nurse which always helps when we haven't been allowed to visit.

Work is worse than ever as demand outstrips what we can do in a day and I don't know long term how this can be sustained as many colleagues are beginning to think of alternative employment or early retirement if they can afford it.

My work is progressing after weeks of endless reading and reading and yes more reading

Out of interest I have read this book which is an updated edition of Tom Kitwoods work on dementia care, some may find this a useful read:

 

[Palerider]

Well its now two years yesterday since mum went into a care home and there hasn't been one moment where I had wished it was different in all that time. Some things we just never get used to. On weds I had a call from her GP they have now confirmed she has heart failure (which I suspected for a while) and managing the symptoms seem to be difficult -but this is the nature of heart failure imposed on dementia.

 

[Jaded'n'faded]

I can't believe it's two years. And sorry to hear the confirmation of heart failure - I know you've thought this for a long time. Can anything be done or is it just One More Thing...?

 

[Palerider]

I can't believe it's two years. And sorry to hear the confirmation of heart failure - I know you've thought this for a long time. Can anything be done or is it just One More Thing...?

We all get slight chnages as we get older and our heart is one of those changes, but in some more than others. Its another complication to add to the list . Any management of heart failure with medication also means the risk of falls, but equally not managing means the risk of collapse and fall as well as discomfort. I had a long chat with the GP and agreed to trial bumetanide to offload any strain on the heart, but essentially heart failure means just that -a failing heart, the only long term solution is transplant, which of course would not be appropriate for anyone at this stage in their lives. Anyway we agreed the most important thing for mum is that she is not distressed or in any discomfort, so thats the aim. It also changes the game a bit in terms of what will ultimately be life limiting -HF or dementia?

 

[Palerider]

last few weeks otherwise engaged with work as the care home stopped visiting -yes AGAIN! -but its ok I had my rant two weeks ago! I am now booked in for tomorrow 14:30 and also Boxing Day 13:30 -the rest is hit and miss as covid creates ongoing problems with visiting.

Last week I had a voicemail that mum had fell so returned the call to be answered by yet another new agancy nurse. As mum has been commenced on butamide I asked when she had started it and whether it might be the start of more falls to come. I was not impressed with the silence down the telephone when the nurse didn't know A. mum was on it and B. didn't know if she had been given it in the morning. I think the tone of my voice was enough to prompt a response. I'm not being funny but medications are not something to be absent minded about, especially when there are associated risks of taking them. A swift check by the nurse clarified that she had the tablet and also educated them to know what they are giving -lesson learned I hope!

Christmas is approaching as we are reminded now on TV and I am not looking forward to it, but it can't be as bad as two years ago

 

[Sarasa]

Just catching up with your thread @Palerider. I hope the visit goes well tomorrow. Does your mum still like costa coffee. My husband has been taking in chilled coffee from the supermarket for his mum and she loves it.
I can't believe it's two years since she went into care.

 

[Bikerbeth]

I hope you have a good visit with your Mum tomorrow.

 

[Palerider]

Thanks @Bikerbeth and @Sarasa

Just figuring out how best to take some of the Costa sparkle chocky cake to the care home plus some very sweet coffe as mum finds it bitter these days unless there's sugar in there -oh and stirred not shaken

 

[Jaded'n'faded]

Take a suitable tupperware container with you to Costa, to keep the cake safe! I'd also recommend the caramel latte with added cream on top - very sweet! (I find it too weak so have an extra shot of coffee added but your mum won't need that.)

Hope you have a good visit - the choccy sparkle cake is yummy

 

[Palerider]

Thanks everyone. Visit was ok, mum nodded off as she had been awake as usual half the night. She chatted with me a little and wolfed down the cake (as I knew she would). I put classic FM on which she use to listen to when driving and it seemed to help her relax and she was snoozing within a few mins, so I kissed her on the head and left. She also has a whole new pile of chocolate until the next time

 

[Palerider]

Difficult as Christmas draws near, I try not to listen to any music on the radio that resembles Christmas as it just sets me off. Visited mum today and dropped off some new clothes from M&S including a Peanuts sweatshirt with Snoopy on -she liked it. Took some Costa sparkle cake in, but she was so tired only ate half of it. Traffic is bad as well as the weather -what do people find to buy???

 

[Palerider]

This time last year I was vsisiting my sister in the hospital and watching her deteriorate rapidly. I can't believe a year has gone by now and that someone who I was close to is gone. There isn't day goes by when I don't wonder what its all about -I mean really all about, but as we are a part of it I guess we will never really know what that answer is, becuase we can't objectively take ourselves out of the equation as humans. What I have learned about over the last six years since this whole journey really started is the human condition, its ups and downs and how different people see the world and how people with dementia are met with real malignant positioning. Its made me change my whole career path at this stage, because I really feel that older people with dementia get a raw deal. In November I had my appraisal and announced my change in direction which to my surprise was welcomed and also supported, so here's to the next step and a change in direction. If I can make one small difference to how my mum has been treated in hospital for others then I will have done something no matter how small that is hugely significant.

 

[Jaded'n'faded]

Your mum would be proud of you. I hope the change in career direction brings you some satisfation and gives you hope.

You are right about the human condition! Going through this journey/process certainly makes you look at life in a different way and makes you re-evaluate what is really important.

 

[Palerider]

 

[Palerider]

I've been reflecting and thinking today about when my dad died, he had left a letter to my mum which for the most part I will not repeat on here save one thing, he wanted 'be still my soul' at his funeral and so it was on the the song list -it was one of the most awful congregation attempts I have ever heard at this song, so here is a very different but beautiful rendition of Sibelius's original composition and also as a hymn its beautiful music but very hard to sing by those who don't know how the melody unfolds -catches a lot of people out to be fair:

 

[Izzy]

Totally beautiful. One of my favourite hymns. My friend, who is a classically trained tenor, sang it at the funeral of a close friend of his.

 

[Palerider]

I've had writers block academically for the last few days (I'd taken a week off to crack on with my write up) -I have all of the references I need but when I sit down to do the work I drift off and today is no exception as I have been out in the car. I think its the time of the year. Its been a while but today I have got some chores done early and visited dads spot and layed a wreath. Felt odd going there after so much time now mum is in care. She would always buy roses and insist on arranging them just so.

Thursday night was diffcult as mum had fell again and the home called me late at night, then at 5am I got another call, so of course I was dashing round the house half asleep trying to find my phone thinking the worse when finally I got through they had dialled the wrong number -I then spent the rest of the day half awake and crashed out watching TV docuseries, if the phone had wrang at that point I would never of heard it. One of these days I will answer it not suspecting anything is seriously wrong after so many minor calls and get a shock.

I'm trying to ignore the fact that Chrstmas is coming, but hiding my head in the sand does not seem to working...

 

[Grannie G]

This is one of the ‘firsts’ for you @Palerider. It`s bound to make you feel unsettled. Can you leave your writing until after the ‘festive season’ ?

 

[Palerider]

This is one of the ‘firsts’ for you @Palerider. It`s bound to make you feel unsettled. Can you leave your writing until after the ‘festive season’ ?

Thanks, its true I am never short of words, but to be honest what I have found in the research has made me feel angry and also unable to articulate the rest of the article without being overly contrite -its about finding the right fix and pitch and to be frank I am sick of hearing about finite resources, efficiency of care provision and cost effectiveness because it creates a huge big paradox for people with dementia when they need acute care. The very thing that has become a target (efficiency) is the very thing that does PWD no good at all. I have spent today trying to justify my fidnings and by chance found Goodharts law further emplified by an eminent Cambridge Prof Marilyn Strathem, so I have tomorrow left to now re-write and hand in to the board by 22nd Dec as a prelim to a fully funded PhD