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New to dementia journey - Page 62 - Carers UK Forum

New to dementia journey

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Thought I would share this. DD visited hubby today and he was so lucid! One of the residents had been weighed, and wanted to know what it was in old terms.Quick as a flash hubby said it's 9 and half stone. When staff checked, he was spot on. I had to Google yet again about vascular dementia as I had a doubt. Of course he has it along with the other complex needs.
The brain is so complicated, as is Dementia.
Glad that DD was there to witness it and share it with you. :P

Brian is indeed strange Pet. When my FIL got to the stage he could remember very little and often forgot who we were , he could always be relied upon to any multiplication table up to 20 quick as a flash and always right. Impressed the grand kids no end.
Had an issue on Sunday. I was told by the day staff that they had put a complaint In about night staff. They are under the impression that the night staff had filled inthe records stating that they had completed hubby's care needs but are basically lying. According to them, poor hubby was in such a mess his personal care had been neglected?? As you can imagine, Sunday evening /night was awful for me. Kept visualising him lying in his poo and urine for hours. He has had upset tum again.
I felt so ill on Monday I couldn't go to the home. I went today, managed to speak to the general manager. She read the timings written down. So, once again, the day and night staff are in conflict. The manager is going to investigate. I want reassurance that hubby isn't neglected at night. I know, if hubby refuses personal care, they leave him for a few minutes, go back and try again.
I'm waiting now for the explanation. I did state, that on Sunday evening I was all for contacting the CQC. However, I know, it's best to go through the management first, as CQC would suggest it.
So watch this space.
Hubby today had a slight temperature, not eating but at least drinking, adding to my anxiety.
Hi Pet,

it sounds as if neither shift are acting professionally. I hope the manager gets to the bottom of it. I wonder if hubby soiled at around shift changeover with night staff keen to clock off and day staff not impressed at being greeted with a job they felt should have been dealt with. It shouldn't have happened but at least with everyone aware and the manager investigating, hubby will be ensured proper care. Easy to say, but try not to worry.

Seems the manager will be speaking to the day staff individually,and explaining that writing such comments in hubby's records, is not acting in a professional way. CQC will read it as accusations. I'm not sure how I feel to be honest, as they were very concerned. IF, not staff are not doing their jobs to an acceptable standard, then it's worrying.
Am going to have to leave the staffing issues to management to sort out.
The doctor went to Hubby yesterday. He has agreed with the nurses that hubby can have food supplements, as his weight loss is rather drastic. He also is taking temazepam off hubby, as it's making him lethargic and out of it too much. Maybe temazepam has built up in his system?? He has one at bedtime.
Hubby is on loads of medication including anti psychotic. Will have to see. Has the vascular dementia taken a big step down,or is hubby drugged up. Or both?
Pressure sore is no better or worse, so the tissue viability nurse will be seeing him again.
On it goes, my inner strength is being tested.
Oh Pet I do feel for you. Co-morbidities are a nightmare and at times it seems every medication causes more problems and side affects. I guess it is a nightmare trying to keep your husband safe and happy. I am against drugging generally patients but can see how sometimes it may be the only option to give them some 'quality of life' if they are constantly upset.

You are one very strong lady and although I do not comment often, I do read your posts and have a huge amount of admiration for how you cope and fight so hard for your husband. Sending hugs.
I guess the doctors have to try and keep him 'stable' at a time when the toll of dementia is simply irreversibly increasing, though at what rate is hard to say.

I agree that trying to find the right 'cocktail' so that the side-effects of one don't exacerbate or cause problems themselves, is very hard to get 'just right'.

It does sound, 'sub-text' that there are some 'conflict issues' between the two sets of staff, day and night, with each side blaming the other, or perhaps just trying to 'offload' some of their work onto the other shift?? Tricky for the residents and their families, to get caught in cross-fire here....

Maybe, in the end, the priority has to be, can only be alas, that your poor husband is 'of quiet mind' and has the least 'distress levels' possibly, though I do appreciate that physical distress or discomfort or worse is not going to make for a 'quiet mind' for him.

I hope things can be resolved shortly, and that your husband can find a new 'comfortable level', even if that is 'down' a few notches.

Having myself seen my sister in law's mother in final end stage of dementia, I am always reassured to know that she died, when the end finally came, very 'peaceably'. She took to her bed, and simply was 'inert' for a long, long time (possibly months, my memory is intermittent alas, as I only visited occasionally), before simply closing her eyes one day and the end just 'slipped in' almost invisibly..... and certainly without any distress at all....... (my husband died of his brain tumours in a similar blessedly quiet fashion, for which I have always been profoundly, profoundly grateful.....)
Pet, sorry, hope that last paragraph of mine did not upset you - I was simply trying to let you see 'beyond' the current difficult situation, to show that in the final stages, dementia is usually a very 'peaceful' illness, which might comfort you in that respect at least???
Jenny, I am trying to prepare myself for eventualities. Not easy, and as you know it's a long goodbye.
Yesterday, hubby was awake, all through my visit. Very confused, seeing people that weren't there. He picked up an imaginary glass and had an imaginary drink. I fetched a jug of juice and he drank out of jug!! Also seemed in such a tangle with his duvet and cover. I asked if I should sort it out which he agreed to. Oh how I wish I hadn't! He really turned on me, accusing me of throwing water on him?? I won't go into the language he used. I'm afraid I retaliated ( not following my own advice). Managed to get a cotton cover over him. The manager said I can write in his records as long as I sign , so I did. Then, sat there for a few minutes, then said, come on, let's not fall out, gave him a kiss which he responded to. Not sure if he even realised he had been so awful.
I'm now wondering if he is getting some sort of withdrawal from not having temazepam for 4 nights or whether it was just one of those days? He hasn't shown agressive behaviour to me for months.
I won't be sorting his bedding again, that's for sure. Will fetch staff.
It's left me a bit wobbly, even though when I left, I told him I loved him, and he actually said it back to me. That's a rareity these days.
I will try not to visit today, as my normal pattern is every other day. We will see.
941 posts