A lifelong friend and me

[anxious annie]

Hi Palerider
so sorry to hear that SS still haven't sorted things out. I am really hoping that you hear something today and things stop dragging on.

 

[notsogooddtr]

Unfortunately you might have to scream and shout to get any help.When I was in a similar situation I called SS,sobbing crying,the whole works.I was literally at the end of my tether.Gave them 24 hours to sort something out or I would deliver my PWD to A and E and leave them there.I like to think it was an empty threat but at the time I was capable of doing it.Thankfully it didn't come to that,the help that I was told wasn't 'urgent' was arranged within 48 hours.As long as you are deemed to be 'coping' there will always be someone who is more of a priority than you.I really hope you get the respite you need very soon

 

[jugglingmum]

I'm sorry you are still in this situation.

Whilst you are with your mum she is safe and so it is lower on SS's priority list. As @notsogooddtr says this might be what you need to do, as they have to prioritise those who are most urgent. There is only so much resource they are working with.

Many people end up with a crisis to force the situation, as often the PWD won't leave their home to go into care, someone at work had to get his mum sectioned after she broke her leg and refused to go to hospital. From there she went into a care home, and was much better than the 2 years before when she had refused to leave the house.

In my case my mum was at my house - she wanted to return to hers but it wasn't safe(long story posted on DTP at the time) - so I found her an extra care flat, she wasn't happy about it but came round over the 3 months it took to sort out. OH asked what I would do if she wouldn't move, as earlier on it looked like she wouldn't and I had replied I'd take her to A & E and leave her there - she wanted to live with us, but it wasn't practical - mum was in late early stages and her behaviour was causing a lot of issues for my then 8 and 12 year old children, some of which I only found out about from daughter much much later. She was getting very nasty to dau when she got in from school and needed to do homework, she thought dau should do jigsaws with her. Dau was very fragile at the time, we moved her schools due to bullying a year later, if mum hadn't had her crisis we would probably have been able to see more clearly that dau had needed moving schools then.

 

[Palerider]

Thank you so much all of you for your posts, they have picked me up when I was beginning to become quite low with this mess.

Being alone with this is not easy. I am lucky in the respect that I have some good experience over the years to be able to let this not affect me so much as it could do, but with that said it has got to me and I have had some dark moments of late, in how I now cope with this illness which has turned my mum who I love very much into someone I don’t know anymore.

I don’t know about my brothers motives, and frankly I don’t have the time to chase him on that. But equally he could come here while I keep an eye on mum, and talk to me -which he has chosen not to do. I wash my hands of that responsibility now, but that is through his own volition.

At the moment I can’t read other threads on this forum, and it’s not because I am being selfish, I just can’t bare to read other stories that make my own anxieties even worse than they are already.

I am at my wits end with it all, and believe it or not the SS said this was down as ‘urgent’, which has been confirmed today. If this is the sense of ‘urgency’ that we now face from the state I can only say God help us all who care and we too move towards old age, with the uncertainty that brings. To coin a phrase ‘old age does not come cheap’ and by that I mean the ailments and illnesses older people are subject to, some of which need more than just simply the rhetoric that is continually bounded around. As much as I say I would leave mum here to reach crisis, I couldn’t do that, its not in my nature. Besides as a registered healthcare practitioner I am in a very difficult position -I have to obey the law, even when it comes to caring for my own. In that sense I could not deny that I too have a ‘duty of care’.

I have decided that the best course of action I can take is to calm myself, gather my thoughts and write to both our MP and the Minister for Social Care, and highlight what ‘urgent’ now means by the state, and invite their ideas as to what they think ‘urgent’ means. To channel this negative energy into a positive action. The only way of winning this is to be continually persistent, unfortunately for the Minister I will be.

 

[Linton]

Hi.. Reading all the many post on this forum.. Heartbreaking accounts of the struggles people have.. Makes mine seam so trivial... I feel unable to post them... Love to all who struggle xxxxxxx

 

[Lirene]

I wish you well with your MP. I emailed mine and was surprised at the double quick response I received.
This is a living hell - there is nothing else to describe it. Please stay strong, don’t give in and keep posting- we are with you all the way. Love and hugsxx

 

[millalm]

Hi.. Reading all the many post on this forum.. Heartbreaking accounts of the struggles people have.. Makes mine seam so trivial... I feel unable to post them... Love to all who struggle xxxxxxx

@Linton there are no struggles in caring for someone with dementia that are trivial, so please don't hesitate to post about yours. I find even replying to others gives me a sense of accomplishment on days where I feel I am going in circles Most days lol

 

[jugglingmum]

Hi.. Reading all the many post on this forum.. Heartbreaking accounts of the struggles people have.. Makes mine seam so trivial... I feel unable to post them... Love to all who struggle xxxxxxx

Please do keep posting, as every one is at a different point in their journey and we all find different things harder than others. There will always be threads about very very hard situations, but there will also always be threads about smaller things.

Your last post was about hallucinations which seems way more difficult than much of what I've had to deal with, so I don't think that is trivial in any sense.

 

[Palerider]

Hi.. Reading all the many post on this forum.. Heartbreaking accounts of the struggles people have.. Makes mine seam so trivial... I feel unable to post them... Love to all who struggle xxxxxxx

You must never allow yourself to feel any less than anyone else, we are all in the same boat, although it may rock at different times. Your should post your own experiences here

 

[jugglingmum]

As much as I say I would leave mum here to reach crisis, I couldn’t do that, its not in my nature. Besides as a registered healthcare practitioner I am in a very difficult position -I have to obey the law, even when it comes to caring for my own.

I don't think many of us would want to be extreme, my thoughts gave me a safety valve at the time, and I had to protect my children. It would have been a last resort if I couldn't persuade mum to go somewhere suitable, by SS standards she still had capacity. My mum would happily have returned to her house, 200 miles away, 2 foot deep in hoarded newspapers, rotten food, electricity turned off goodness knows when , filthy as anywhere I've ever seen on telly etc. How on earth the police and SS had allowed her to live there I can't comprehend - the lady police officer who had seen her 3 weeks before crisis had given her a telling off about it (mum and police officer gave same account) which is certainly lacking in dementia training/awareness - but I couldn't have her living with me (and my now invisible brother was in the same boat) as she was being very nastily critical of both children (and my nephews when she stayed with my brother.) to the point of doing permanent harm. My children in total understood, my brother's were too young, but my 8 year old and my brother's 6 year old were being subject to unacceptable verbal criticism and needed protecting (she stayed with us on fortnightly alternating basis until we sorted out her flat).

I have certain things that I won't do as I feel it crosses a line imposed by my profession(potential for strike off), which most find acceptable to do in life and think I am being prim when I behave this way.

 

[Palerider]

I have certain things that I won't do as I feel it crosses a line imposed by my profession(potential for strike off), which most find acceptable to do in life and think I am being prim when I behave this way.

No your not being prim, you are bound by your own professional registration to act accordingly, even though others may have the blessing of being able to walk away

 

[Linton]

Thanks for your reply.. It gives me encouragement to post my feelings again.. Thanks... Xx

 

[Palerider]

Thanks for your reply.. It gives me encouragement to post my feelings again.. Thanks... Xx

Then post, start your own thread and tell us your own story

 

[DesperateofDevon]

Hi.. Reading all the many post on this forum.. Heartbreaking accounts of the struggles people have.. Makes mine seam so trivial... I feel unable to post them... Love to all who struggle xxxxxxx

No ones struggles are trivial ever.. the key word ... struggles

 

[DesperateofDevon]

I don't think many of us would want to be extreme, my thoughts gave me a safety valve at the time, and I had to protect my children. It would have been a last resort if I couldn't persuade mum to go somewhere suitable, by SS standards she still had capacity. My mum would happily have returned to her house, 200 miles away, 2 foot deep in hoarded newspapers, rotten food, electricity turned off goodness knows when , filthy as anywhere I've ever seen on telly etc. How on earth the police and SS had allowed her to live there I can't comprehend - the lady police officer who had seen her 3 weeks before crisis had given her a telling off about it (mum and police officer gave same account) which is certainly lacking in dementia training/awareness - but I couldn't have her living with me (and my now invisible brother was in the same boat) as she was being very nastily critical of both children (and my nephews when she stayed with my brother.) to the point of doing permanent harm. My children in total understood, my brother's were too young, but my 8 year old and my brother's 6 year old were being subject to unacceptable verbal criticism and needed protecting (she stayed with us on fortnightly alternating basis until we sorted out her flat).

I have certain things that I won't do as I feel it crosses a line imposed by my profession(potential for strike off), which most find acceptable to do in life and think I am being prim when I behave this way.

its very easy to give advice I find but very hard to take your own advice at times; my gauge in life is to treat others how I’d like to be treated myself. With the odd slip up here & there!
No matter what as a person you have to be comfortable with your actions - so I always put Mum & Dads best interests first.
I occasionally cannot take anymore & need time out but really don’t get much of that. My children are adults but dementia has effected their relationships with their grandparents & myself.
Each persons experiences with dementia are a personal journey with a myriad of differences & a bucket load of similarities.
Being able to vent on TP is a pressure valve for many, & informative ( in my case how not to get help!)

 

[Palerider]

I wish you well with your MP. I emailed mine and was surprised at the double quick response I received.
This is a living hell - there is nothing else to describe it. Please stay strong, don’t give in and keep posting- we are with you all the way. Love and hugsxx

If I have to right every week, through every screen of mist on this I will do, until the law governing social care is changed, I will bend and I will sway, but enough is enough. If I go to my grave writing and protesting every week then I will -that is my resolve, but I won't stop

 

[silver'lantern]

Hi.. Reading all the many post on this forum.. Heartbreaking accounts of the struggles people have.. Makes mine seam so trivial... I feel unable to post them... Love to all who struggle xxxxxxx

others seeming worse does not lessen yours. you wouldnt say your broken leg didnt hurt because the next person has broken two..... we all have levels of stress and things going on at different times. and each cope (or not) in our own way.

 

[Bunpoots]

I didn’t have to walk away for my dad to reach crisis point. It was caused by the unwillingness by the professionals to see what I could see - that he needed full time care. More than I could manage. It wasn’t until he had a stroke which landed him in hospital and I refused point blank to have him sent back home alone when he couldn’t even walk that I finally managed to get him the help he needed...and I really had to fight.

The way frail, old and confused people are treated is a disgrace.

There are some wonderful carers out there but trying to access help unless you’re self funded is a nightmare.

 

[DesperateofDevon]

If I have to right every week, through every screen of mist on this I will do, until the law governing social care is changed, I will bend and I will sway, but enough is enough. If I go to my grave writing and protesting every week then I will -that is my resolve, but I won't stop

Totally agree with you, I really want to make the horrendous experiences mean a more positive outcome for others. It’s to late for Mum & Dad nothing will drastically change in time now.


I am on my own personal crusade for Dad at the moment, & I totally get where you are coming from. The deeper I dig around in Medical history the more I realise how once you have a dementia diagnosis it’s becomes not how to treat this illness but who is going to pick up the bill - social services or Health authority!
The number of times I’ve heard those words
Whose going to pick up the tab?

my OH & I have been gobsmacked that this is the first priority in many needs assessment meetings - imagine if this happened with a cancer diagnosis !
Both are terminal illnesses, both eat away at the person til nothing is left!

I guess if enough of us band together & join forces we might get noticed.

 

[DesperateofDevon]

I didn’t have to walk away for my dad to reach crisis point. It was caused by the unwillingness by the professionals to see what I could see - that he needed full time care. More than I could manage. It wasn’t until he had a stroke which landed him in hospital and I refused point blank to have him sent back home alone when he couldn’t even walk that I finally managed to get him the help he needed...and I really had to fight.

The way frail, old and confused people are treated is a disgrace.

There are some wonderful carers out there but trying to access help unless you’re self funded is a nightmare.

If only Dementia care was under one organisation instead of the multitude of agencies, how can a medical diagnosis be a social services issue? It’s a terminal illness .... why isn’t it treated as such?
This I can never get over... I must be thick to not understand the convoluted systems that are in place.