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Dad getting more agitated and confused

deepetshopboy

Registered User
Jul 7, 2008
249
lifes became so difficult its getting to the point i don’t even want to go out with him anymore he’s getting more agaitated and more confused trying to live a ‘normal ‘life doing things normal people do lke go a bus is a nightmare
I live with my dad whos 72 id say hes at stage 5 moderate now
Ive got next to no help and have had to live with the whole situation is just horrendous for instance today I tried going home to were i live to pick up some post get clean clothes but the buses had been diverted so unbeknown to me we went on it get stuck in traffic for 2 hours i had two heavy bags of old clothes and dad gets agitated anyway on a normal 45 min journey back to my place hes wrings he hands he touched hes face constantly everbody stares its that bad so I deceided to get off the bus give up and try tomorrow dad couldnt understand why then i passed the train station i said shall we get the train over which is near were i live no he couldn’t understand that we would need to get train back again though as no buses idecide to drop it just go back to hes house ( 5 min away )theres s train station back on the way so he wanted to jump on the train to go miles away out to the country i saod no thats not the train theres no sense or reasoning i said no thats not the one he starts shouting then spots the original bus stop having forgotten we were there before buses diverted etc hr then insisted that he go back on the bus again to do it all over again sit on the bus for two hours in traffic god .
Unfortunately i live near literally over the rd from were hr lived for 25 yrs so he’s getting mixed up with were im living hes now threatening to walk ‘home ‘
I told him id call the police ,, tried telling him he doesn’t live there he lives here its a constant battle im beginning to actually hate him my life is awful if i bring him over to were i live he gets aggressive some times and totally forgets were he lives thinking that he lives in hes old flat ( as its samr area im on tender hooks everytime i take him over praying i get back ok that i dont have another episode of before i have to just stay 1 hour before he gets sundowns and get him back again home safely on the bus hes got no interest much in music ive bought him dvds which he hasn't much interest in the only thing hes ok with is reading a small bit of the newspapers but wont put hes glasses on forgets or loses them .(like most things ) he ok with mass used to go when well but have to watch him like a hawk incase he jumps up to go to the toilet and gets lost .he follows the cat around trying to feed her ive taking to hiding the cat food now as he’s feeding her all the time and im having to buy cat food all the time spending £20 /30 a week on it .he gets disoriented at evening time hes saying is it ok if i go to the toilet ? can i go bed now ? looking at me as if to see if i know were it is like its my house then he’s saying oh ill be going in the morning he just threaten to walk back to hes house he's at home-right now (to he's old house )which is 3 miles away insisting he was going to walk i told him id call the police thank god he's calmed down now but this is what ive got to put up with among other things he sits there whistling with he's arms folded out of boredom because he's used to being out all day every day he would just find stuff to do its like trying to entertain a toddler thats prone to tantrums:mad:
 
Last edited:

kindred

Registered User
Apr 8, 2018
2,362
Sweetheart, you cannot carry on like this. Consider contacting social services urgently and tell them he is a vulnerable adult and you are not able to carry on looking after him.
Warmest, kindred
 

deepetshopboy

Registered User
Jul 7, 2008
249
Sweetheart, you cannot carry on like this. Consider contacting social services urgently and tell them he is a vulnerable adult and you are not able to carry on looking after him.
Warmest, kindred
Thank you yes ive told sw im a breaking point im finding it difficult they have have just refreed my for conigitve behaviour therapy’s over the phone via memory clinic had my ist session tuesday but found it more like a tick boxing /market research for professionals not helpful for me tbh sw just sent emergency carers in said hes not ill enough but yes i know what your saying if i walk away they will have to take over ..
 

deepetshopboy

Registered User
Jul 7, 2008
249
Does anybody know how i copy these posts direct from my phone ie and and post type thing so i can show sw /memory and nurse clinic incidents etc ?
 

Baker17

Registered User
Mar 9, 2016
435
Thank you yes ive told sw im a breaking point im finding it difficult they have have just refreed my for conigitve behaviour therapy’s over the phone via memory clinic had my ist session tuesday but found it more like a tick boxing /market research for professionals not helpful for me tbh sw just sent emergency carers in said hes not ill enough but yes i know what your saying if i walk away they will have to take over ..
I see that you’ve been referred for CBT, I was also referred and at first I thought it was just a tick box, after my six sessions were up the therapist referred me for further therapy which to be honest I wasn’t very confident about. It was only at the second to last session of this further therapy that I suddenly realised that it was working and I did feel much better. Oddly enough I was talking to someone about something completely different and they said they’d been through this type of therapy and they had the same experience as me so my advice would be not give up as I found it a great help
 

deepetshopboy

Registered User
Jul 7, 2008
249
I see that you’ve been referred for CBT, I was also referred and at first I thought it was just a tick box, after my six sessions were up the therapist referred me for further therapy which to be honest I wasn’t very confident about. It was only at the second to last session of this further therapy that I suddenly realised that it was working and I did feel much better. Oddly enough I was talking to someone about something completely different and they said they’d been through this type of therapy and they had the same experience as me so my advice would be not give up as I found it a great help
Its called ‘ start ‘program as she was kind of explaning it was like a service were she gives me tips on helping with behaviour I've had a hour on the phone which by the time I finished if im honest just felt like a question and answer session that i felt was just helping them to understand it better as professionals dealing with dementia rather then helping me but i will persevere and see if it’s helping me
 

Roseleigh

Registered User
Dec 26, 2016
306
Its called ‘ start ‘program as she was kind of explaning it was like a service were she gives me tips on helping with behaviour I've had a hour on the phone which by the time I finished if im honest just felt like a question and answer session that i felt was just helping them to understand it better as professionals dealing with dementia rather then helping me but i will persevere and see if it’s helping me
It's appalling that you've been referred for CBT when YOU don't have a problem, you are in an intolerable situation and need at the very least a break from caring for your dad.:(
Unfortunately ASC will not provide this unless you are clearly at breaking point. To demonstrate this you have to tell it like it is and don't let personal pride make you put on a brave face when you speak to them.
They have to be aware that allowing this situation to continue is putting your mental health and your dads safety at risk. Have you told them that sometimes you hate your dad now, and how guilty you feel? You have to tell it like it is. You also need to be clear what the risks are to him in his current situation and point these out.
You need to be clear in your own mind too what you want for your dad, help at home, respite in a care home or is it time to move him into long term care? If he has savings you need to consider what he can pay for. Know what youre looking for from them.
 

Roseleigh

Registered User
Dec 26, 2016
306
Also speak to his GP. As he's suffering from anxiety and becoming agitated he needs medication to calm him. Whats he on now?
 

deepetshopboy

Registered User
Jul 7, 2008
249
Also speak to his GP. As he's suffering from anxiety and becoming agitated he needs medication to calm him. Whats he on now?
Hes on mementine and
Aricept since 2013
Mementine since December 2018
No anxiety tablets ...
Im giving him,
Herbel sleeping tablets
Drs just keep referring me back to memory clinic
Nurse were shes eventually got annoyed and said there is nothing we can do it will make him worse whatever medication we give him could make him more confused .
 

Roseleigh

Registered User
Dec 26, 2016
306
Hes on mementine and
Aricept since 2013
Mementine since December 2018
No anxiety tablets ...
Im giving him,
Herbel sleeping tablets
Drs just keep referring me back to memory clinic
Nurse were shes eventually got annoyed and said there is nothing we can do it will make him worse whatever medication we give him could make him more confused .
Its true that anti anxiety medication probably will, in sedating him, make him a bit more confused. You could ask his GP to try Mirtazapine which seems to be the mildest first line treatment and may help to reduce his anxiety and calm him a bit. But if visiting the GP it would also be an opportunity to emphasize your dad is no longer safe to live alone. He is wandering, which makes him a huge risk to himself and unless his anxiety can be reduced enough to ensure he stops doing this he is no longer safe to remain living alone even with you and carers keeping an eye on him.

Is residential care what you want for him.? If so and he has his own money you can just choose a care home independently. If the LA have to pay then you need to ask for a needs assessment by the social worker and be sure that you can demonstrate to him/her how your dad is now a vulnerable person who is a danger to himself if left alone. His wandering and inappropriate behaviours in public which reveal his vulnerabiliity should alone be enough to show he qualifies for LA funding for residential care. Write down a list of his self endangering behaviour so you dont forget stuff when she comes to assess him
 

deepetshopboy

Registered User
Jul 7, 2008
249
Hi the gp wont prescribe anything without the memory clinic go ahead they are saying no
He definitely wont be going in to a home the sw said they won’t fund it unless a crisis happens i cant bring myself to walk away
He's been getting carers from ss for last month , 6 week free they now finishing up Ive emailed the sw rung etc to ask what now ? Ive also did the forms and heard nothing back regarding the financial assessment and nobody got back looks like im being left in the lurch back to square one
They are probably short staffed with not enough sw and backlog after xmas
in addition im paying for 1 carer 3 hours per week to take him out
not going well i dont like her shes not working with me number of issues
 

deepetshopboy

Registered User
Jul 7, 2008
249
Update so ive had a meeting with memory clinic will be calling them next week as discussed again about my dad going on medication for hes anxiety ( this has been going on for months now with gp refusing to help stating he cant give him anything unless memory clininc say and memory clininc refusing to give him anything dad is getting mood swings restless on the bus making repittive hand movement were people are staring at him not sleeping ive had to resort to giving him herbel sleeping tablets and herbal anxiety tablet i feel ive just been left to cope with him and the situation ive also had a meeting with the social worker that never went well either as again i feel im getting no were she doesn’t know about direct payment ive done the financial assesment after xmas and now there asking me to do all the forms over again !! the social worker didnt know why
he's been assesed as having to pay £74 towards care then the rest is free but not getting care !! social worker said oh well he will have to pay for hes own care as if say for instance he's going continue with the previous carer he had @£ 32 per week that falls under the amount of care I've told her ive got a private carer to take him out on tuesday for 3 hours does that not count ? That costs £72 plus if he was getting the carer would come tp £32 .shes saying she doesn’t think they pay for private agency carers ive got a feeling im deliberately been given the wrong information as they dont want to pay anything towards it i never asked for help ive been paying anyway for the last 1 yr out of my dads savings i told her I couldn’t understand it was complicated she said oh no its not
in the meantime my dad has only 1 carer 1 day a week all arranged by me paying £72 out of hes own
money the emergency carer has left after 6 weeks no care arrangements put in place by sw nobody told me nothing ive been ringing the agency all week and nobody has got back to me
 

Wildflowerlady

Registered User
Sep 30, 2019
112
Hi,
Sorry your not getting the help you need its appalling I can only suggest that you keep on at the Social Service department threaten to withdraw care you provide dad with, say you are ill etc etc. We told Social Services in 2017 following hospital admission that we couldn't be with dad 24/7 and that he definitely needed people going into him as he lived alone mum had died in 2016.
It was only because we were checking on dad daily after mum died that when a crisis happened we were able to 'Save him'. Sister found dad in a empty bath at lunchtime no water and stark naked I arrived to see him within 10 minutes of her arrival she was in a state of panic and in tears. We had no idea how long he had been there but I called a ambulance and we sat with dad stuck in bath for a further 7-8 hours and then in A & E until 2 am when they admitted him with delirium and poor kidney function. Dad has refused a bath and shower since so will only have a strip wash with carers.
.
My dad is fortunate in that after a re-ablement service which was free following hospital admission over two years ago he was provided 4 care visits a day 45 mins in the morning 30 mins for lunch afternoon tea and bedtime. The only issue I have with this is the morning call isn't early enough and can be as late as 11am.
My sister goes into dad around 8.45am which I had also done alternative days with her but as my partner has Parkinson's I had to stop going end of June 2019 as he needs me in the morning now. I visit afternoons instead.
Decision didn't go down well with sister but until she decides to agree with me about going back to Social Services I don't think they will try to get dad a earlier call.
Dad came down his stairs the other week as sister decided to have a few mornings/days off I feel this makes him vulnerable as he carried his night bag in a bowl down his stairs as he didn't know why she hadn't turned up. Dad is 85 yrs old.
Dad does have a permanent catheter which he cannot operate and he is doubly incontinent but physically able to use stairs etc.
My dad pays a portion of the cost but to be honest not much its based on his savings he has no property so its in Social Services interest to keep him at home as long as possible.
I hope you get this resolved soon I cannot imagine how we would manage dad without his carers coming in. Its so unfair that people have to wait for a crisis before Adult Social Care will take notice we were lucky that dad did recover although his dementia has progressed somewhat which is hard to deal with.
 

deepetshopboy

Registered User
Jul 7, 2008
249
Update so ive had a meeting with memory clinic will be calling them next week as discussed again about my dad going on medication for hes anxiety ( this has been going on for months now with gp refusing to help stating he cant gove hom anything unless memory clininc say and memory clininc refusing to gove him anything dad is getting mood swings retless on the bus making repittive hamd movement were people are staring at him not sleeping ive had to resort to giving him herbel sleeping tablets i feel ive just been left to cope woth him and the situation ive also had a meeting with the social worker that never went well either as again i feel im getting no were she doesn’t know about direct payment ive done the financial assesment after xmas and now there asking me to do all the forms over again the social worker didnt know why
he's been assesed as having to pay £74 towards care then the rest is free but not getting care !! social worker said oh well he will have to pay for hes own care as if say for instance he's going continue with the previous carer he had @£ 32 per week that falls under the amount of care I've told her ive got a private carer to take him out on tuesday for 3 hours does that not count ? That costs £72 plus if he was getting the carer would come tp £32 .shes saying she doesn’t think they pay for private agency carers ive got a feeling im deliberately been given the wrong information as they dont want to pay anything towards it i never adked for yelp ive been paying anyway for the last 1 yr out of my dads savings i told her I couldn’t understand it was complicated she saod oh no its not in the meantime mu dad has only 1 carer 1 day a week all arranged by me the emergency carer has left no care arrangements put in place by sw nobody told me nothing ive been ringing the agency all week and nobody has got back to me
Hi,
Sorry your not getting the help you need its appalling I can only suggest that you keep on at the Social Service department threaten to withdraw care you provide dad with, say you are ill etc etc. We told Social Services in 2017 following hospital admission that we couldn't be with dad 24/7 and that he definitely needed people going into him as he lived alone mum had died in 2016.
It was only because we were checking on dad daily after mum died that when a crisis happened we were able to 'Save him'. Sister found dad in a empty bath at lunchtime no water and stark naked I arrived to see him within 10 minutes of her arrival she was in a state of panic and in tears. We had no idea how long he had been there but I called a ambulance and we sat with dad stuck in bath for a further 7-8 hours and then in A & E until 2 am when they admitted him with delirium and poor kidney function. Dad has refused a bath and shower since so will only have a strip wash with carers.
.
My dad is fortunate in that after a re-ablement service which was free following hospital admission over two years ago he was provided 4 care visits a day 45 mins in the morning 30 mins for lunch afternoon tea and bedtime. The only issue I have with this is the morning call isn't early enough and can be as late as 11am.
My sister goes into dad around 8.45am which I had also done alternative days with her but as my partner has Parkinson's I had to stop going end of June 2019 as he needs me in the morning now. I visit afternoons instead.
Decision didn't go down well with sister but until she decides to agree with me about going back to Social Services I don't think they will try to get dad a earlier call.
Dad came down his stairs the other week as sister decided to have a few mornings/days off I feel this makes him vulnerable as he carried his night bag in a bowl down his stairs as he didn't know why she hadn't turned up. Dad is 85 yrs old.
Dad does have a permanent catheter which he cannot operate and he is doubly incontinent but physically able to use stairs etc.
My dad pays a portion of the cost but to be honest not much its based on his savings he has no property so its in Social Services interest to keep him at home as long as possible.
I hope you get this resolved soon I cannot imagine how we would manage dad without his carers coming in. Its so unfair that people have to wait for a crisis before Adult Social Care will take notice we were lucky that dad did recover although his dementia has progressed somewhat which is hard to deal with.
Thanks for your reply unfortunately now after trying to leave my dad alone at night he needs 24/7 as hes a night wanderer he also doesn’t tolerate carers well in hes territory hes ok enough but wanders why there here making him tea in hes kitchen he doesnt like them sitting down either in hes living room he wanders why these strangers are here .im living here to try and keep him safe the ‘ carer’is too give me respite.the ss are running rings around me im sure they are dojng it deliberately the only thing i can imagine is money and similarly to memory service its money which doesn’t help me its just going end up me having to walk away and dad in a home
 

Twopoodles

Registered User
Dec 23, 2019
35
Sorry to hear you’re having so much trouble. Although mum is difficult (won’t accept help and hostile to carers etc) she is at least not a wanderer. You must be so frustrated. It also sounds like the memory clinic (mental health team ) are letting you down too. Mum also on memantine . We had an appointment with the mental health clinic consultant last week and from everything I described he prescribed trazadone to help with the anxiety. Been taking it for 10 days now, no side effects but no real change yet either. But it wasn’t a problem to get it. I had emailed and printed and hand delivered a copy of all the issues we were having with instances too before the appointment as impossible to remember them all and gave the Dr something to work with by the time we arrived. As mum is self funded ( still waiting on attendance allowance first forms got “lost”) we haven’t got a social worker but luckily the consultant we have is brilliant. Her own doctor was useless which is why took us 3 years to get a diagnosis and that’s only because a locum was in. almost wish that these gps and sw end up in a similar situation as us so they can finally get it. Don’t need the extra hassle of doing battle with the authorities as well as trying to look after your dad.
 

deepetshopboy

Registered User
Jul 7, 2008
249
Sorry to hear you’re having so much trouble. Although mum is difficult (won’t accept help and hostile to carers etc) she is at least not a wanderer. You must be so frustrated. It also sounds like the memory clinic (mental health team ) are letting you down too. Mum also on memantine . We had an appointment with the mental health clinic consultant last week and from everything I described he prescribed trazadone to help with the anxiety. Been taking it for 10 days now, no side effects but no real change yet either. But it wasn’t a problem to get it. I had emailed and printed and hand delivered a copy of all the issues we were having with instances too before the appointment as impossible to remember them all and gave the Dr something to work with by the time we arrived. As mum is self funded ( still waiting on attendance allowance first forms got “lost”) we haven’t got a social worker but luckily the consultant we have is brilliant. Her own doctor was useless which is why took us 3 years to get a diagnosis and that’s only because a locum was in. almost wish that these gps and sw end up in a similar situation as us so they can finally get it. Don’t need the extra hassle of doing battle with the authorities as well as trying to look after your dad.
Thanks yes there being difficult its been going on for months since November im having to give him herbel sleeping tablets but this morning reached mini crisis i rung the emergency number given to me by sw which is memory clinic number turned out to be wrong number they dont deal with people with dementia typical so now have to call tomorrow im getting angry now as dad sundowning during the day now suddenly and packing bags wanting to go home
Friday night he packed hes bags was up
All night up n down all night
Yesterday woke up
In a bad mood i had to unbolt the door he wanted to go out was about 8 am i had to give in and let him go he was getting aggressive lucky it was cold he came back after 10 min today hes wanted to go out with bags in hes hands to go home its becoming a nightmare im trying to keep him safe but hes going end up getting sectioned how can i keep him in safe now ive emailed the sw and ill ring the dr for the usual urine test and ring the memory clinic yet again im getting the run around in circles so unfair to let me deal with this