APPROACHING END WITH MUM : EVERY DAY IS DIFFERENT

[Jezzer]

Sorry you've had a bad week. This CHC business is a minefield and I honestly think they will put every obstacle, trick and whatever else they can pull out of the bag in your way to stop you fighting for it. It's disgraceful but there it is. Take care @AKiki13 xxx

 

[Kikki21]

Hi Monika. Yes I'm sure we all get down visits; sorry yours was so today. Thanks so much for your good wishes. Love Jan xxxx

The last couple of visits have been difficult. And today I have a definite sniffle which means that I won’t go till it has cleared up! Xxxx

 

[Kikki21]

One of the first things the lady said to me was do you realise that out of 100, 70 get a no! That had no bearing on anything when she hadn’t even seen any evidence at that point! Although, she did tell me that they do not automatically send the report out any more, you have to specifically ask for it, so if you do still have the letter, apparently it should tell you how to do this. I think you should request the full report because there maybe things in there that are incorrect that you could appeal on and you have 6 months to appeal. This system was set up to help people and all they do is say no all the time, it’s so frustrating because the dementia is so unpredictable and this is one of the areas they look at. In my opinion, anyone with dementia should get this because everything that surrounds dementia is most definitely a healthcare need and it all intertwines in each of the domains. The full panel meeting is on Tuesday morning where I’m sure we’ll all be doing battle with each other, I will let you know how we get on. Hope you’re all ok? Haven’t spoken much recently because it’s just been one of those emotional rollercoaster weeks where nanny has not been with it at all.

I totally agree with you. My mum got Funded Nursing Care out of it, that was it & we were meant to feel grateful for that. The nurse assessor was a real battle axe too & they determine scores with just a 45 minute window with the PWD. Also they said at the full meeting that my mum needed nursing care so a nursing care home was required & not a residential home. I raised an issue re language as I can see that my mum might come to a point which is already happening where she forgets she can speak English so what happens then when they can’t understand her?! CHC is a joke!

 

[Jezzer]

I totally agree with you. My mum got Funded Nursing Care out of it, that was it & we were meant to feel grateful for that. The nurse assessor was a real battle axe too & they determine scores with just a 45 minute window with the PWD. Also they said at the full meeting that my mum needed nursing care so a nursing care home was required & not a residential home. I raised an issue re language as I can see that my mum might come to a point which is already happening where she forgets she can speak English so what happens then when they can’t understand her?! CHC is a joke!

CHC = Cannot Have Care. As I've so often said, Dementia is dreadful for sufferers and we really go through hell at times. It can make us poorly too. I know my own health has suffered, like so many others. And then we still have to keep fighting. It's shocking. x

 

[kindred]

One of the first things the lady said to me was do you realise that out of 100, 70 get a no! That had no bearing on anything when she hadn’t even seen any evidence at that point! Although, she did tell me that they do not automatically send the report out any more, you have to specifically ask for it, so if you do still have the letter, apparently it should tell you how to do this. I think you should request the full report because there maybe things in there that are incorrect that you could appeal on and you have 6 months to appeal. This system was set up to help people and all they do is say no all the time, it’s so frustrating because the dementia is so unpredictable and this is one of the areas they look at. In my opinion, anyone with dementia should get this because everything that surrounds dementia is most definitely a healthcare need and it all intertwines in each of the domains. The full panel meeting is on Tuesday morning where I’m sure we’ll all be doing battle with each other, I will let you know how we get on. Hope you’re all ok? Haven’t spoken much recently because it’s just been one of those emotional rollercoaster weeks where nanny has not been with it at all.

A social worker mate says that the unpredictability is one of the main areas they look at ... really needs piling on thickly. Warmest, Kindred.

 

[kindred]

CHC = Cannot Have Care. As I've so often said, Dementia is dreadful for sufferers and we really go through hell at times. It can make us poorly too. I know my own health has suffered, like so many others. And then we still have to keep fighting. It's shocking. x

Yes, it is. I think, and I think and I cannot think of a way to get our plight noticed, it is a disgrace. Gx

 

[Jezzer]

Yes, it is. I think, and I think and I cannot think of a way to get our plight noticed, it is a disgrace. Gx

Will keep trying to think of a way to get this "out there". People have no idea about how it really is. xx

 

[stanleypj]

There's no denying that CHC is a lottery - with very few winners.
But I still feel that people should try for it.
My wife and I were extremely lucky to get it. A District Nurse took it upon herself to apply. There was a meeting, held in our house, which I was able to attend, and it was decided that she would qualify.
If this nurse hadn't bothered, I would never have applied for it because I knew that so many PWD are turned down.

 

[Jezzer]

There's no denying that CHC is a lottery - with very few winners.
But I still feel that people should try for it.
My wife and I were extremely lucky to get it. A District Nurse took it upon herself to apply. There was a meeting, held in our house, which I was able to attend, and it was decided that she would qualify.
If this nurse hadn't bothered, I would never have applied for it because I knew that so many PWD are turned down.

I'm so pleased your wife qualified for CHC and I apologise if my posts have in any way discouraged folk from applying for it. I would urge folk to try by all means. I just feel upset that so many folk who are obvious recipients fail to be accepted. Thanks @stanleypj

 

[Jezzer]

A very quiet visit today. Mum was soundly asleep and looked so cosy and relaxed. So gentle words, many kisses and holding of hands. Lots of Love in her room, my brother and I both felt it. Jan xx

 

[AKiki13]

A very quiet visit today. Mum was soundly asleep and looked so cosy and relaxed. So gentle words, many kisses and holding of hands. Lots of Love in her room, my brother and I both felt it. Jan xx

Glad there was lots of love for you today, that’s such a lovely feeling to have especially when you go through so many rough patches. Everybody is totally correct about the CHC, maybe I’ll eat my words in the next few weeks if they grant it for nanny but I very much doubt it. What annoys me is that what is more unpredictable than dementia? All of you sadly know how horrifyingly unpredictable this disease is and tbh unless they’ve had a loved one go through it, they shouldn’t be making the decisions because they have no idea what this cruel disease does to people! I’ll also apologise if I put anyone off applying, I didn’t mean to do that. Everybody should at least try for it, but the system from what I’ve read and seen so far is utterly flawed and it seems especially with dementia cases. Anyway, good luck to those who are applying and trying and well done to those who have managed it.x

 

[Toony Oony]

Hi @Jezzer - glad that your visit today was quiet but loving and peaceful.

Can't say mine was the easiest - Mum's been very fearful this last week and her conversation now makes no sense at all. It's proper words, but all the wrong ones! She asks me questions and I invariably give the wrong answer, I so wish I could get inside her head and eliminate the fears and understand what she is trying to tell me.

Take care
XX

 

[Jezzer]

Glad there was lots of love for you today, that’s such a lovely feeling to have especially when you go through so many rough patches. Everybody is totally correct about the CHC, maybe I’ll eat my words in the next few weeks if they grant it for nanny but I very much doubt it. What annoys me is that what is more unpredictable than dementia? All of you sadly know how horrifyingly unpredictable this disease is and tbh unless they’ve had a loved one go through it, they shouldn’t be making the decisions because they have no idea what this cruel disease does to people! I’ll also apologise if I put anyone off applying, I didn’t mean to do that. Everybody should at least try for it, but the system from what I’ve read and seen so far is utterly flawed and it seems especially with dementia cases. Anyway, good luck to those who are applying and trying and well done to those who have managed it.x

Thanks for your kind words x Totally agree about CHC and that folk should keep trying. If they stop that's exactly what they'll want so go for it everyone!!

 

[Jezzer]

Hi @Jezzer - glad that your visit today was quiet but loving and peaceful.

Can't say mine was the easiest - Mum's been very fearful this last week and her conversation now makes no sense at all. It's proper words, but all the wrong ones! She asks me questions and I invariably give the wrong answer, I so wish I could get inside her head and eliminate the fears and understand what she is trying to tell me.

Take care
XX

Sorry to hear that Toony. It is so difficult and frustrating. Thinking of you and sending love xxxx

 

[Lindy50]

Hi @Jezzer - glad that your visit today was quiet but loving and peaceful.

Can't say mine was the easiest - Mum's been very fearful this last week and her conversation now makes no sense at all. It's proper words, but all the wrong ones! She asks me questions and I invariably give the wrong answer, I so wish I could get inside her head and eliminate the fears and understand what she is trying to tell me.

Take care
XX

So sorry to hear this @Toony Oony
It must be so difficult for you.
(((Hugs)))
Lindy xx

 

[Lindy50]

A very quiet visit today. Mum was soundly asleep and looked so cosy and relaxed. So gentle words, many kisses and holding of hands. Lots of Love in her room, my brother and I both felt it. Jan xx

Hi Jan @Jezzer
So glad your mum was peaceful today. Great to hear about the Iove surrounding you all too xxx

 

[Jezzer]

Hi Jan @Jezzer
So glad your mum was peaceful today. Great to hear about the I’ve surrounding you all too xxx

Thanks Lindy xxxxx

 

[Toony Oony]

Thanks for the kind words @Jezzer and @Lindy50
Love to you both
xxxx

 

[Jezzer]

Afternoon folks
arrived to find mum awake and calling out her own name. I wonder why she does that? When she's sleepy she seems to be having conversations with herself; maybe her younger self? Who knows. She wasn't calling out for her sister today though. She asked if I would help her and of course I said I would and what could I do to help her. She replied she wanted to go to bed and of course she's already bed-bound. It just so happened that the carers arrived to wash and change her so I said they were coming to help take her to bed. That did the trick and when I returned she was settled and told me she wanted to go to sleep so I sat with her until she was sound asleep. Ah the "tricks" we employ to try and sooth eh? My view is if it causes no harm and helps, then it's fine. For anyone else visiting today, I wish you well. Love to all. Jan xxx

 

[kindred]

Afternoon folks
arrived to find mum awake and calling out her own name. I wonder why she does that? When she's sleepy she seems to be having conversations with herself; maybe her younger self? Who knows. She wasn't calling out for her sister today though. She asked if I would help her and of course I said I would and what could I do to help her. She replied she wanted to go to bed and of course she's already bed-bound. It just so happened that the carers arrived to wash and change her so I said they were coming to help take her to bed. That did the trick and when I returned she was settled and told me she wanted to go to sleep so I sat with her until she was sound asleep. Ah the "tricks" we employ to try and sooth eh? My view is if it causes no harm and helps, then it's fine. For anyone else visiting today, I wish you well. Love to all. Jan xxx

Oh thank you so much Jan. Beautiful post and of course it does no harm and it helps. It's what our compassionate imagination is for. with love, Geraldine aka kindred. xxxx