• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

So is this it...?

ladysuisei

Registered User
Nov 13, 2019
19
I am so sorry that you are in this situation. I am lucky in having Dad in CH & mum a distance away with carers - & I really appreciate that when I read other carers posts.

it gets to a point where you don’t have a life - I can see that.
Please take care of you first & foremost.

My Mum said on Sunday “ you don’t really have a life do you?”

that insight made me think about what is it that makes us do what we do as carers.

I don’t have any answers but know now that self preservation has got to be a major part in my life now. I feel so unwell all the time & people keep telling me I look ill!!

I hope you find resolution-soon.

Take care & hijack away, it’s nice to have social interaction!
x
Hi there- yes the last say 10 years have just flown by in a haze of awfulness. Crisis after crisis.... in the past I managed my feelings with drinking to excess, but in March 2018 I quit, realising that I was doing myself a lot of harm as well as not solving anything at all . It’s dreadful isn’t it ? My mother lost her mobility and speech so many years ago, nobody can actually believe how she is still here and fighting.
At the moment, both me and my sister feel very low. This isn’t helped by the fact that my father seems to be in denial.
I know what you mean re feeling ill etc. I have started making time for a few decent walks in the park every week , but inside I feel dreadful.
Take care x
 

ladysuisei

Registered User
Nov 13, 2019
19
Hello @ladysuisei and welcome to DTP
I’m sorry to read that caring for your Mum and supporting your Father has caused you such difficulties I hope your appointment with your CPN helps.
Now you have found the forum I hope you will continue to post for support it is a friendly forum
Thank you- at the present time, I do feel extremely low . My CPN keeps reminding me she can’t change things!! I have to laugh because she’s the professional apparently looking after my mental well-being. If it wasn’t so awful I may be tempted to laugh ( possibly with a tinge of hysteria thrown in) .
Actually I dont know how long we can carry on doing this as a family- we are having a SALT visit tomorrow, but as mum is gradually losing her swallow reflex I can’t see what possible help they can be. We shall wait and see.
You are right, this forum is full of the most lovely people and, if nothing else, we can come here to offload.x
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Hi there- yes the last say 10 years have just flown by in a haze of awfulness. Crisis after crisis.... in the past I managed my feelings with drinking to excess, but in March 2018 I quit, realising that I was doing myself a lot of harm as well as not solving anything at all . It’s dreadful isn’t it ? My mother lost her mobility and speech so many years ago, nobody can actually believe how she is still here and fighting.
At the moment, both me and my sister feel very low. This isn’t helped by the fact that my father seems to be in denial.
I know what you mean re feeling ill etc. I have started making time for a few decent walks in the park every week , but inside I feel dreadful.
Take care x
Its easy to blot out situations with glass temporarily & I have done so in the past! Not to any avail & just gained a lot of weight to boot! I am regularly giving myself a pep talk, daily - hourly on bad days!
I deserve a life
I’m a good person
My parents chose not to move closer to their only child.
I’ve been a dutiful daughter

yep I’m that person muttering away to herself when walking the dog!

rather infrequently if you ask the dog’s opinion!!


The guilt monster just eats you up! It’s because you are kind, thoughtful & put others before yourself.

my new year resolution is to be more selfish!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Thank you- at the present time, I do feel extremely low . My CPN keeps reminding me she can’t change things!! I have to laugh because she’s the professional apparently looking after my mental well-being. If it wasn’t so awful I may be tempted to laugh ( possibly with a tinge of hysteria thrown in) .
Actually I dont know how long we can carry on doing this as a family- we are having a SALT visit tomorrow, but as mum is gradually losing her swallow reflex I can’t see what possible help they can be. We shall wait and see.
You are right, this forum is full of the most lovely people and, if nothing else, we can come here to offload.x
I think you will know when you have to say actually I need more help, hence the salt team. Ask if it’s NHS funding criteria & see what they say. It can’t hurt to ask. You are amazing doing what you do - honestly I couldn’t do it .
take care of yourself first though, you still have a life to lead. Your Mum like my parents is at the end of her journey now.
Last month I almost reached the end of my journey through stress & I’ll health- seriously it was a wake up call!

take care lovely
Xx
 

ladysuisei

Registered User
Nov 13, 2019
19
Its easy to blot out situations with glass temporarily & I have done so in the past! Not to any avail & just gained a lot of weight to boot! I am regularly giving myself a pep talk, daily - hourly on bad days!
I deserve a life
I’m a good person
My parents chose not to move closer to their only child.
I’ve been a dutiful daughter

yep I’m that person muttering away to herself when walking the dog!

rather infrequently if you ask the dog’s opinion!!


The guilt monster just eats you up! It’s because you are kind, thoughtful & put others before yourself.

my new year resolution is to be more selfish!
Well , considering how selfless you have been to date, I think a bit of selfishness would be perfectly okay for 2020. Haha, as I write this I realise that neither of us will give up on our parents, as we would have done so a long time ago.

I hope things are feeling slightly better for you- I don’t have a dog, but my cat is a very good listener xx
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Well , considering how selfless you have been to date, I think a bit of selfishness would be perfectly okay for 2020. Haha, as I write this I realise that neither of us will give up on our parents, as we would have done so a long time ago.

I hope things are feeling slightly better for you- I don’t have a dog, but my cat is a very good listener xx
I know we talk the talk, it’s the equivalent of teenage banter for the carer! I really am going to be more selfish though! I haven’t seen my son for 18months now as he’s in Australia!

it tears me apart, yes FaceTime etc is fab but I want to have a big bear hug & G&T with him & some time together! So Australia 2020???? Hope so....
 

Dimpsy

Registered User
Sep 2, 2019
1,041
I know we talk the talk, it’s the equivalent of teenage banter for the carer! I really am going to be more selfish though! I haven’t seen my son for 18months now as he’s in Australia!

it tears me apart, yes FaceTime etc is fab but I want to have a big bear hug & G&T with him & some time together! So Australia 2020???? Hope so....
Making time for yourself isn't selfish, we all need to have something to look forward to, but knowing you from your posts, you will still involve yourself with your mum and dad; caring people can't stop being caring and what exciting plans you have for next year.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Making time for yourself isn't selfish, we all need to have something to look forward to, but knowing you from your posts, you will still involve yourself with your mum and dad; caring people can't stop being caring and what exciting plans you have for next year.
I’m going to have to save up hard as I have DVT issues so cattle class is not an option as I have to walk about every hour!
But I am going to either pay for my sons flights over or go on a very expensive extended journey! Either way I am going to squeeze my boy again in 2020!!! I might not go!!!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Okay folks I’m entering silly season so please don’t worry if I don’t post for a few days ... the Christmas events & mad finishing off of artwork means I may be gone a while !!!
Wish me luck!
ps Have OH & Daughter On visiting duties with the carers all prepped & aware. Care home are a law unto themselves still but hey Dads now comfortable & that’s the priority always!!

Wish me luck folks I may be a while! xxx
 

silver'lantern

Registered User
Apr 23, 2019
166
@DesperateofDevon
Best wishes and enjoy your time in your world. Craft and Events are a great escape, and this is a busy time of year for you. Well done for detaching enough to give yourself free time and leaning on those that are Willing, Able and Trusted to do a good job.
 

ladysuisei

Registered User
Nov 13, 2019
19
I think you will know when you have to say actually I need more help, hence the salt team. Ask if it’s NHS funding criteria & see what they say. It can’t hurt to ask. You are amazing doing what you do - honestly I couldn’t do it .
take care of yourself first though, you still have a life to lead. Your Mum like my parents is at the end of her journey now.
Last month I almost reached the end of my journey through stress & I’ll health- seriously it was a wake up call!

take care lovely
Xx
Hi there- well the SALT visit was frustrating to say the least. She said that swallowing poses “ significant risk “ and she will send a report to the gp. I feel at breaking point now. In addition to my father being in denial, I feel that I’m holding an unexploded granade with this significant risk being taken every day. I thought we’d get some constructive help. No . We have the confirmation that swallowing is considered a high risk situation. I mean has the world gone mad . I can’t take much more. I have reached crisis point and I have decided to ask my cpn for help. I really don’t want to relapse with the alcohol. I realise that would be a disaster- I’ve accepted I’m dependent. Oh god. I hope you are doing ok x
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Hi there- well the SALT visit was frustrating to say the least. She said that swallowing poses “ significant risk “ and she will send a report to the gp. I feel at breaking point now. In addition to my father being in denial, I feel that I’m holding an unexploded granade with this significant risk being taken every day. I thought we’d get some constructive help. No . We have the confirmation that swallowing is considered a high risk situation. I mean has the world gone mad . I can’t take much more. I have reached crisis point and I have decided to ask my cpn for help. I really don’t want to relapse with the alcohol. I realise that would be a disaster- I’ve accepted I’m dependent. Oh god. I hope you are doing ok x
I realised I was at breaking point & stepped back. your a full time carer & that’s harder to do; but ring the Clinical mental health team & talk to them about your Mums needs- I think it’s coming to the time when some decisions need to be made.

Take care lovely
Xx
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
The Dietician assessed Dad today with the care home - over the phone! Interesting..

wonder what the care home told them? hope it’s not a repeat situation....
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
I’m a coward.... officially! & I am not ashamed!
Dads safeguarding meeting minutes arrived via email yesterday.... & I’m not opening them until my events are out of the way next week!

me first! my blood pressure is lowering & the constant headaches are gone!
sorry folks .... but no matter what it says what has happened has happened! Minutes of a meeting that was weeks ago are not derailing my somewhat happier mode!!!

I’m protecting my bubble of normality! Woe betide any bubble poppers ....!
 

silver'lantern

Registered User
Apr 23, 2019
166
I’m a coward.... officially! & I am not ashamed!
Dads safeguarding meeting minutes arrived via email yesterday.... & I’m not opening them until my events are out of the way next week!

me first! my blood pressure is lowering & the constant headaches are gone!
sorry folks .... but no matter what it says what has happened has happened! Minutes of a meeting that was weeks ago are not derailing my somewhat happier mode!!!

I’m protecting my bubble of normality! Woe betide any bubble poppers ....!
well done....about time! enjoy your event
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
I knew I had psychic abilities.... nah! Just the ability to predict human nature on observing behaviour patterns!!!

the care home have given notice to Dad, no discussions just an email!

Now they want a nurse who said just a few weeks ago that Dad was capable in the safeguarding meeting to do a CHC assessment.
Can I ask for an independent NHS review from the clinical mental health team?

advice anyone please?
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Had email from the SW who is too busy to contact me until she has some news on other homes! nice !!!

When does LPA actually mean something ?
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
This system I have realised is going to do whatever it wants no matter what! Even as LPA we are have no voice with the GP - who has asked us to go through the home. The care home that said Dad didn’t need a profiling bed/ special chair / soft diet/ help feeding himself. The same end of life care home that specialises in dementia care who have served Dad notice. The care home who repeatedly told me he didn’t need CHC funding who now have requested the district nurse who told me that my Dad after being put on palliative care was fully capable of movement & didn’t need any extra help. Even in the safeguarding meeting this nurse insisted she’d had an interesting conversation with Dad only recently. Dads not able to communicate & we have been his LPA s since 2016 to ensure his needs & best interests are met! His dementia means he is in & out of sleep/ consciousness minute by minute.

This same nurse suggested as LPA I could overturn Dads wishes & the cod evils on the office of guardian documents!
So this professional has been asked by the home todo an apparaial for CHC funding

whatdoido I have to give my permission ??