Hi, looking for help for my mum to care for my dad who has FTD

xxKatwhixx

Registered User
Jan 27, 2018
11
0
Blaenavon
Hello all.

My dad was diagnosed with FTD a few years ago, I think it was around 2014/15. Dad will be 71 this April. We first started noticing changes to his personality, and he started to forget words. He had been a generally all round handy man and suddenly didn't know how to do the simpilest of things,he went from building garages to not knowing how to wash up! He has been fairly settled since his diagnosis, not that he will now go and see anyone, tbh I think the memory clinic and gp's have forgotten about him. He lives at home with my mum and for her , it is like having an overgrown toddler to look after, he has gone from being sociable and active to , in the last half a year or so, not leaving his dining room, where he smokes and usually watches a screen with no volume and unless its football, he doesn't know what he is watching , just says "I'm watching this". The most myself or my children can get out of him is " hello, are you going? goodbye" and that is when we have just walked in! He will not wash, brush his teeth or even change his clothes now, and nothing mum does can encourage him to do it, and to be frank, he smells! Please, does anyone have any ideas on how we can get him to look after himself (with mums help ) ?
sorry if this seems a garbled post, I don't really know what I am doing !
 

nae sporran

Registered User
Oct 29, 2014
9,213
0
Bristol
Hullo and welcome to TP @xxKatwhixx. Sorry, I don't know a lot about FTD, my partner has Vascular Dementia, but I was wondering if you have spoken to Social Services about a care plan and getting carers in to help look after your dad. C would never accept personal care like showering from me, but will accept it from outside agencies if they are patient and kind enough. It has to be worth speaking to your local council social services department to see what they can offer.
 

xxKatwhixx

Registered User
Jan 27, 2018
11
0
Blaenavon
Hullo and welcome to TP @xxKatwhixx. Sorry, I don't know a lot about FTD, my partner has Vascular Dementia, but I was wondering if you have spoken to Social Services about a care plan and getting carers in to help look after your dad. C would never accept personal care like showering from me, but will accept it from outside agencies if they are patient and kind enough. It has to be worth speaking to your local council social services department to see what they can offer.
Hi
thank you for responding.
Mum and I don't really know where to go for help, Dad won't go to any of his appointments , he doesn't like being asked questions and because he won't go anywhere, all the professionals seem to have stopped support ,so mum has nobody to inform her on who to go to for help, I know that mum booked an appointment at the doctors surgery to speak to someone who was going to help her, but when she got there, the person in question said they didn't know anything about dementia help and support. I will speak to her about trying to get into contact with social services though, and see if we can get something in place. Mum has managed to get attendance allowance for my dad , and is awarded carers allowance but not given money for carers allowance as she receives a pension?
I don't know how my dad would respond to someone coming in to help him, and can see that he would just say hello and goodbye in the same sentence, then carry on watching his computer monitor with the volume turned down lol.
 

Beate

Registered User
May 21, 2014
12,179
0
London
If you are in receipt of State Pension you can have an underlying entitlement to Carers Allowance but you can't receive the monetary value for both. Sorry, I know that's unfair. Is he receiving the council tax SMI disregard? If he is disregarded because of severe mental impairment, their household would receive a 25% off council tax. Ask your council for the form - his GP will have to sign it.

I agree, she has to contact Social Services and ask for a needs assessment for him and a carers assessment for herself. They could put all kinds of things in place like day care, respite, carers, sitters, telecare, OT gadgets.... Of course it's goi g to be difficult if someone's not receptive to help.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hello @xxKatwhixx
welcome from me too
I'm sorry your mum isn't getting the support she wants and needs - I agree, contact their Local Authority Adult Services and ask for an assessment of your dad's care needs asap - make it clear that your mum is having real difficulty getting him to co-operate with any personal care and that without her there to make meals and keep him safe he would be 'at risk' of harm due to self neglect - this is NOT a reflection on your mum in any way, it is an indication of how his dementia is affecting him and how much he needs a care package being put in place
do also keep his GP up to date and ask if the GP would make a referral too to back up how much your dad, and your mum, needs help - also let the GP know the effect all this is having n your mum as her health and welfare matter just as much
I wonder whether you have come across this site
http://www.raredementiasupport.org/
 

xxKatwhixx

Registered User
Jan 27, 2018
11
0
Blaenavon
If you are in receipt of State Pension you can have an underlying entitlement to Carers Allowance but you can't receive the monetary value for both. Sorry, I know that's unfair. Is he receiving the council tax SMI disregard? If he is disregarded because of severe mental impairment, their household would receive a 25% off council tax. Ask your council for the form - his GP will have to sign it.

I agree, she has to contact Social Services and ask for a needs assessment for him and a carers assessment for herself. They could put all kinds of things in place like day care, respite, carers, sitters, telecare, OT gadgets.... Of course it's goi g to be difficult if someone's not receptive to help.
Hi
thank you for responding .
I am not sure about the council tax thing, but thank you, I will ask mum and see what she says. It sounds like contacting Social services is going to be the way forward, and I think I will get mum to sign up to here as well , maybe she will find the support in being able to speak to people who are going through similar things. I know that I already feel much more positive and less confused with just the few answers I have received on here! :)
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
My OH has FTD and he too does very little apart from sitting all day in the conservatory with his android. A lot of people with FTD get stimulous overload so like to be by themselves in a quiet room. MY OH is not as far on as your dad as he still showers and changes his clothes, but I have started getting someone in to help me with the cleaning so that he gets used to someone coming in and doing things. I contacted Age UK for their Help at Home scheme. You do have to pay for it, although it is cheaper than other places. I am also hoping that OH will be able to go to a day centre soon to try and give him more stimulation and a weekly routine. Your dad may be too advanced for this now, but it is something to think about. Once I need help with OH getting dressed and showering, then I shall contact Social Services for a needs assessment and get carers in to help.

I hope your mum manages to get extra help, dementia is tough and will take all your energy.
 

xxKatwhixx

Registered User
Jan 27, 2018
11
0
Blaenavon
hello @xxKatwhixx
welcome from me too
I'm sorry your mum isn't getting the support she wants and needs - I agree, contact their Local Authority Adult Services and ask for an assessment of your dad's care needs asap - make it clear that your mum is having real difficulty getting him to co-operate with any personal care and that without her there to make meals and keep him safe he would be 'at risk' of harm due to self neglect - this is NOT a reflection on your mum in any way, it is an indication of how his dementia is affecting him and how much he needs a care package being put in place
do also keep his GP up to date and ask if the GP would make a referral too to back up how much your dad, and your mum, needs help - also let the GP know the effect all this is having n your mum as her health and welfare matter just as much
I wonder whether you have come across this site
 

xxKatwhixx

Registered User
Jan 27, 2018
11
0
Blaenavon
My OH has FTD and he too does very little apart from sitting all day in the conservatory with his android. A lot of people with FTD get stimulous overload so like to be by themselves in a quiet room. MY OH is not as far on as your dad as he still showers and changes his clothes, but I have started getting someone in to help me with the cleaning so that he gets used to someone coming in and doing things. I contacted Age UK for their Help at Home scheme. You do have to pay for it, although it is cheaper than other places. I am also hoping that OH will be able to go to a day centre soon to try and give him more stimulation and a weekly routine. Your dad may be too advanced for this now, but it is something to think about. Once I need help with OH getting dressed and showering, then I shall contact Social Services for a needs assessment and get carers in to help.

I hope your mum manages to get extra help, dementia is tough and will take all your energy.
Hello
thank you , I'm sure we will get somewhere with support soon. I hope you continue to get the support you need.
 

xxKatwhixx

Registered User
Jan 27, 2018
11
0
Blaenavon
Hello again.
Well, things have gone from bad to worse for my dad since early hours of Tuesday morning when he had a fall in the bathroom and mum and I are now desperate for some help/support.
Dad fell about half 4 Tuesday morning when he got up to use the bathroom. Mum rang me because he was on the bathroom floor saying he was in pain and hurt all over. We rang the ambulance service. They took 2 hours to get to him and he was taken to a&e , they x-rayed his hips /legs where he said the pain was , said nothing was broken but dad couldn’t walk. He was the most cooperative and lucid than I have seen him in a long time, listening to the doctors and OT and Physio. OT and Physio couldn’t get him to walk so they kept him in overnight in the hope that Wednesday morning he would be in less pain and able to walk. He couldn’t , but they gave him a zimmer and a commode and he was brought home . Since then, he has refused to eat, he can’t walk and has wet the bed , and the floor and soiled himself . We have made a bedroom downstairs for him so that he doesn’t have to try and walk up any stairs , he has a urinal bottle next to him and a commode but he just isn’t able to use them , or won’t use it in the case of the commode. We’ve managed to get a small bit of food into him over the last day or two. A slice of toast here, and a bite of sausage there. He has gone from a mobile person to a person that can’t stand up ! He had another fall last night , as mum was trying to clean him after he soiled himself and we managed to get him up ,clean him and put him to bed. He has wet the bed again . It’s like he isn’t even in there anymore , he just looks at you blankly when you you talk to him, I don’t think he even recognised or realised who my daughter was when she came to see him with me : how has he gone downhill so rapidly ?!? And please, where do we go from here?? Mum is at breaking point , she’s not a nurse and we are just struggling on. The gp came to him Friday but just stood in the doorway as if she was going to catch something , she did listen to his chest, and said she would try the referral . But we really can’t wait , we need help now and just don’t know what to do ! Any advice greatly appreciated !
Thank you .
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Has he been checked for an infection @xxKatwhixx - especially a urine infection?
Infections can cause havoc and sudden increase in symptoms in people with dementia.

If its not an infection I would recommed that your mum contacts the continence nurse for an urgent assessment and in the menlwhile you can buy pads for the incontinence and kylie sheets for the bed. Also contact SS for an urgent assessment as his needs have changed and your mum needs extra help. Please stress that this is urgent as your mum cannot cope now. The buzzwords to use are that he is a vulnerable man who is at risk.

Personally, I dont think the hospital should have sent him home before extra help was organised.
 

xxKatwhixx

Registered User
Jan 27, 2018
11
0
Blaenavon
Has he been checked for an infection @xxKatwhixx - especially a urine infection?
Infections can cause havoc and sudden increase in symptoms in people with dementia.

If its not an infection I would recommed that your mum contacts the continence nurse for an urgent assessment and in the menlwhile you can buy pads for the incontinence and kylie sheets for the bed. Also contact SS for an urgent assessment as his needs have changed and your mum needs extra help. Please stress that this is urgent as your mum cannot cope now. The buzzwords to use are that he is a vulnerable man who is at risk.

Personally, I dont think the hospital should have sent him home before extra help was organised.
Hi,
I don’t think he was checked for infection, to be honest , they didn’t do a lot at the hospital and the Gp did nothing at all. We have bought the bed pads and mum is going to get some Tena pants for him today. I’m staying with my dad so she can go out . I stayed last night . Ss came round on the Wednesday and put a hand rail up the stairs and that’s it ! I don’t even know how to contact them. It feels as though nobody is willing to give us the information we need and it’s like it’s all top secret. Dad won’t get up this morning , and I know the bed is wet, mum and I struggle to move him , he doesn’t help in any way so we are trying to move a dead weight ! It’s all very frustrating! Thank you for your reply.
 

Beate

Registered User
May 21, 2014
12,179
0
London
I agree, he shouldn't have been discharged. They have hospital social workers who should have assessed him for more help at home to be put into place before allowing him to go home. If he has to go back to hospital, please push for this!
For now, I say what I said before already: contact Adult Social Services!
 

xxKatwhixx

Registered User
Jan 27, 2018
11
0
Blaenavon
I agree, he shouldn't have been discharged. They have hospital social workers who should have assessed him for more help at home to be put into place before allowing him to go home. If he has to go back to hospital, please push for this!
For now, I say what I said before already: contact Adult Social Services!
Thank you. I have found some phone numbers for ss ,one is an out of hours emergency number but I don’t think it’s classed as an emergency ? When he came out of hospital on Wednesday he was standing and using his frame and the urinal bottle , but now he can’t. His urine is very dark .
 

DeMartin

Registered User
Jul 4, 2017
711
0
Kent
Dark urine could indicate dehydration, can you get him to drink anything, tea, water, squash, non alcoholic beer. Anything wet, jelly, ice cream etc.
Tomorrow push for a visit, sob, Wail, cry, vulnerable adult, duty of care.
If you are concerned take him back to hospital, refuse to take him home.
 

Beate

Registered User
May 21, 2014
12,179
0
London
Thank you. I have found some phone numbers for ss ,one is an out of hours emergency number but I don’t think it’s classed as an emergency ? When he came out of hospital on Wednesday he was standing and using his frame and the urinal bottle , but now he can’t. His urine is very dark .
You said your mother is at breaking point and you need help NOW. If that's not an emergency, I don't know what is! Phone them now!
 

xxKatwhixx

Registered User
Jan 27, 2018
11
0
Blaenavon
Hi all.
thank you for your messages, I think @canary was correct. we have had the ambulance out and dad has been re-admitted with possible sepsis! My mum and Uncle are with him at the hospital now,and I am waiting for more news. The paramedic said we were right to ring as dad is a very poorly man.
thank you for all of your advice, it really is greatly appreciated. x
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hi @xxKatwhixx
I'm sorry to read that your dad is so poorly - I hope he now will receive the treatment and care he needs
I hope too that your mum is holding up - It's good that she has your uncle with her

you might use the phrase 'failed discharge' to anyone who suggests your dad comes home - make it clear that you consider that this is what happened ie he should not have been discharged so soon from the previous admission and that you won't accept your dad back home without a full care package of home care visits in place before he is discharged - indeed, suggest that he moves (when it's time) to an assessment care home to recuperate and give your mum time to look to her own health and welfare
I'd contact the PALS at the hospital, when you have the time and energy, and explain what has happened - it would be useful for your family for the ward staff to know that PALS are involved
 

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