Where do I go from here?

[limafoxtrot]

Mums CPN now seems to think Mum is now doing ok & said Mum had told him she is eating ok & said she was confused when she came home last week from the care home but was now a lot better. I know she not eating enough (although ate a frozen meal a carer helped her to cook yesterday but won't cook it herself & she is still confused a lot but he said he can only go on what he sees when he visits her. I don't think he believes me when I tell him that:
1: She goes out but doesn't really know where she has been but luckily does find her way home
2: Went up the road to the paper shop on Sunday which takes about 1/2 hour there & back but was out 2 hrs but Mum still insists that's the only place she went to.
3: Leaves windows open when she goes out (lives in a bungalow) & Mum thinks its ok as she wasn't out long.
4: Takes painkillers but can't remember what time she has taken them.
Now has carers coming in 3 times a week but not sure how long that will last this time around (has already had 2 lots of carers in earlier this year but stopped them).

CPN then said a doctor is going to see Mum to see if she has capacity, then they will be having another best interest meeting, which he wants me to attend, unfortunately he doesn't seem to understand, I can't just hop on a 7 hour flight when it's convenient to them. Next he said he's had a good chat with Mum & he told her about her memory problem again, at which point I lost it I said I didn't want him mentioning it to her as she gets upset but he insisted she was ok with it & that we should keep mentioning it to her so she understands. I asked to speak to Mum & asked her if she understands what he said to her, she said he mentioned lots of things, so I said what does she feels about what he said about her memory, Mum just said, well lets face it, what do you expect at my age!

What I can't understand is, why he feels the need to keep mentioning Mums memory to her & what can I do to stop him mentioning it to Mum again Mum seems to tell people what they want to hear, so comes across really well.
Now not sure where to go next or what to do. Any help will be appreciated.

Lima x

 

[Grannie G]

I would write a letter to the CPN suggesting what to tell your mum and what to leave out. If you explain telling too much increases the confusion you have to deal with eventually, he might realise.

It`s what I did when professionals gave my husband too much information.

 

[Pennie]

This is an extract of a letter my brother wrote to the GP last year when we were being constantly monitored - I have removed names and places:

P is taking S to the mental health meeting in W on Tuesday 20th November with Dr., with whom P spoke on the ‘phone yesterday. He confirmed her fears that S would yet again be put through another cognitive assessment testing regime. To what end, we are unsure, as her condition is well documented, stable at present and well managed.

We understand due process must occur but we all hope sincerely that unless there is significant deterioration and/or change in her condition, further testing of this nature may be avoided as it is very distressing for S.

Again, thank you so much for your understanding and help.

Yours sincerely

We have had another one since, in May, because it seems that 6 monthly is part of the protocol. Any significant changes and I am on the phone to the GP, that's my route anyway.
Not sure if that might help.

 

[jaymor]

My husband has been in a nursing home for nearly 12 months now and has 1:1 care. Some days he chats but nothing makes sense, other days he talks perfect sense but none of the incidents he talks about has happened.

He will tell us he has been out in the car or his van and goes into great detail as to what he has done and then tells me how much I have to invoice the person for the work he has carried out. He will point out work he has done around the nursing home and the jobs they have asked him to do.

I find it very difficult to understand why a CPN, a mentally trained nurse, cannot see what is happening. Do they truly not grasp dementia or are they so overloaded with work that anyone who seems to be coping, if even for a few hours, is deemed to be managing ok?

Why do they not listen? We the carers know our loved ones best, we are dealing with dementia every day. They don't deal with the actual living with dementia, they deal with the text book dementia, the written word. I could read a book about someone climbing Everest but I certainly could not put the boots on and start climbing.

So much of what help we can expect is measured by their written word and it seems so wrong.

Having a qualification does not mean they know it all.

Jay

 

[Noorza]

Your mum has to be aware that her memory is bad in order to accept help. You as you say, are seven hours away. My mum's memory is bad, she has put eggs on at 3 am and set her alarm off with the smoke damage, the police called me and I had to get there in minutes. You can't do that.

Mum has had to accept her memory is bad so that if she sets another fire (she has set three) the smoke alarm triggers an alert to a central place who contact me and a secondary contact and if we are not available they get the emergency services.

Mum has to accept her memory is bad to accept the whiteboard that allows us or her carers to write safety reminder messages such as turn the gas off or don't use the microwave.

She has to accept her memory is bad to accept the clock provided which is in huge print to remind her what day and time it is.

The doctor is trying to do the best for your Mum. If you are not there it is difficult for you to understand as you are not there for the assessments. I am for my mum, that's not a judgement call but you asked why do they need to remind her that her memory is bad, it is to enable her to accept that she needs extra aids to help her to be safe in her home.

My advice is to stop fighting them and to accept they are helping mum. I truly hope this helps even if I haven't told you want you want to hear.

 

[Noorza]

My mum is the same, her meds also need to be put in blister packs which date and time the medications. Mum has Monday to Sunday and Morning, Dinner, Afternoon and Evening and the tablets are placed in the appropriate section when she needs to take them.

Coupled with the clock it helps her to manage her own tablets.

 

[limafoxtrot]

Thank you

Thank you all for your replies. I've now called Mums SW who is attached to the CNHT where the CPN works. I asked if he cannot speak to Mum about her memory, luckily she agreed, saying it will not do any good. She also gave me the managers email address for me to complain to, at the moment in still so will wait until I calm down before I send one.

Even though I'm not near Mum, I do speak to her everyday & can tell by the tone of her voice if she is not telling me the truth or if something is wrong, apparently something the CPN can't recognise as he only sees her maybe once a week.

Mum must have had a fall yesterday as her ankle is swollen & bruised (her very good neighbour has confirmed this), unfortunately Mum still wants to go out & even though I've explained to her it could make it worse, she doesn't understand

Lima x

 

[limafoxtrot]

My mum is the same, her meds also need to be put in blister packs which date and time the medications. Mum has Monday to Sunday and Morning, Dinner, Afternoon and Evening and the tablets are placed in the appropriate section when she needs to take them.

Coupled with the clock it helps her to manage her own tablets.

Unfortunately Mum has refused these before & won't entertain them again, saying she can manage by herself. Mums GP has been great & has now stopped the paracetamol & codeine & has replaced it with codeine as she thinks this is the safer option when she forgets what time she last took her meds

Lima xx