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I suspect my father may be struggling with dementia...

Shedrech

Volunteer Moderator
Dec 15, 2012
9,034
Yorkshire
hi @AztecCamera87
the rules for funding care fees while still living at home are different from when in a care home (then the thresholds come into effect) and are down to the LA ... however they should do a proper assessment and explain the results
and YOU definitely should not be asked to pay for anything, everything that is linked to your dad's care should be paid from his finances

let them know that your dad is requiring care during the night, as that's really what begins to lead to a need for residential care ... and qualifies for the higher rate of Attendance Allowance

your dad being on the floor is a worry ... take care in getting him back up and in bed, ideally you should have help, even a call out to paramedics ... you risk an injury to both of you, stress that to the LA

maybe contact Admiral Nurses also
www.dementiauk.org/get-support/admiral-nursing/
 

AztecCamera87

Registered User
Mar 12, 2019
148
Had two missed calls on my mobile from the Council this week, it's very annoying as the phone number that comes up has no extenstion (just the generic council number) and they don't leave messages explaining who it is. So when I called back the person I spoke to explained that without me knowing who tried to call, they can't help. argh.
 

AztecCamera87

Registered User
Mar 12, 2019
148
It was my dad's birthday earlier this week, neither of my older brothers sent a card, which is rather annoying, especially as i have ensured a card and gift 'from dad'. I don't see why i need to remind either. Dad enjoyed opening thing, or rather me and my sister opening things for him and looking at the cards he got. Although he forgot an hour later, he still had fun in the moment.

Dads balance is getting worse, and we cant get him to stand up with a frame at all now with out support, needs two people with all changes pretty much now, although ive had to do it on my own once or twice.

He seems to have an iron grip though, prying things from his hand is difficult, and sometimes he really holds firm when i hold his hand for his comfort when hes at his most anxious. It's odd as i thought grip weakened with dementia?

His arms are becoming more rigid when changing, and the deadweighting becoming more frequent. Poos more frequent, and the smell a bit odd... more like the smell of baby poo? Doctor has perscribed some fibre powder, not really seen much difference except for being less runny.
 

AztecCamera87

Registered User
Mar 12, 2019
148
FINANCES & CARE NEEDS
The council have sent us a letter explaining that dad needs to start paying 100% for his care. I have tried to explain to the Council we have not had a single bill in a year, but they have not been able to explain why this is. Anyway, The letter we have had explains that dad's normal care cost is over £620 a week. I mean, that's just crazy. But as I said, we have not had a single bill, we had been told previously we were meant to be a large contribution towards dad's care, but not 100%. If we had been paying bills for care, if we had been sent bills! we would not now be paying 100% of care costs.

£620 (plus) a week is not sustainable, and for what, 3 hours of care calls a day... which at times the carers will not be there for the full hour, but we have been told each call needs to be an hour as they will need to clean and wipe dad when he poos himself. Right now we have no carer calls, the thing about the lockdown means we are at home, although I am working from home, and dad won't call out when he needs help, as he forgets there are people in the house with him.... but that's another story.

Right now I'm thinking... that cost is just crazy for 3 hours a day. How much more would it cost for dad to be in a care environment where he can be properly looked after. I'm having one of those days where I could very easily just wipe my hands clean and walk away. Last night I was woken up by dad screaming, turns out it was possibly a bad dream as he was fast asleep when I checked on him. and then he was coughing a lot.

Anyway, on another note, it's been over a month since occupational health came to visit and reassess dad... we still haven't had the things they promised to help make things easier to clean and look after dad.

I tell you what..... I have not seen my girlfriend for about 6 weeks now, and i probably wont see her for another couple of months. I never said I could care for dad, I have told social services as much as this when he was last in hospital.... but then the social worker made all sorts of promises which were dropped 2 weeks after dad was back home.

But even when things go back to normal, and we are not working from home... then what.... over £620 a week for care costs.
 

Weasell

Registered User
Oct 21, 2019
222
How interesting to hear you comment about the ridiculous dementia test, your dads critical assessment was spot on in my opinion, what is the name of the Monarch is a question, and the rest are not much better.
 
Last edited:

Rosettastone57

Registered User
Oct 27, 2016
1,211
FINANCES & CARE NEEDS
The council have sent us a letter explaining that dad needs to start paying 100% for his care. I have tried to explain to the Council we have not had a single bill in a year, but they have not been able to explain why this is. Anyway, The letter we have had explains that dad's normal care cost is over £620 a week. I mean, that's just crazy. But as I said, we have not had a single bill, we had been told previously we were meant to be a large contribution towards dad's care, but not 100%. If we had been paying bills for care, if we had been sent bills! we would not now be paying 100% of care costs.

£620 (plus) a week is not sustainable, and for what, 3 hours of care calls a day... which at times the carers will not be there for the full hour, but we have been told each call needs to be an hour as they will need to clean and wipe dad when he poos himself. Right now we have no carer calls, the thing about the lockdown means we are at home, although I am working from home, and dad won't call out when he needs help, as he forgets there are people in the house with him.... but that's another story.

Right now I'm thinking... that cost is just crazy for 3 hours a day. How much more would it cost for dad to be in a care environment where he can be properly looked after. I'm having one of those days where I could very easily just wipe my hands clean and walk away. Last night I was woken up by dad screaming, turns out it was possibly a bad dream as he was fast asleep when I checked on him. and then he was coughing a lot.

Anyway, on another note, it's been over a month since occupational health came to visit and reassess dad... we still haven't had the things they promised to help make things easier to clean and look after dad.

I tell you what..... I have not seen my girlfriend for about 6 weeks now, and i probably wont see her for another couple of months. I never said I could care for dad, I have told social services as much as this when he was last in hospital.... but then the social worker made all sorts of promises which were dropped 2 weeks after dad was back home.

But even when things go back to normal, and we are not working from home... then what.... over £620 a week for care costs, ffs.
My mother-in-law was paying over £500 a week for her care, similar hours over 3 years ago . She was paying more at weekends and bank holidays. It's better value in my opinion, for full time care in a home. If your dad is now self funding, you can explore this option yourself
 

TNJJ

Registered User
May 7, 2019
1,376
cornwall
FINANCES & CARE NEEDS
The council have sent us a letter explaining that dad needs to start paying 100% for his care. I have tried to explain to the Council we have not had a single bill in a year, but they have not been able to explain why this is. Anyway, The letter we have had explains that dad's normal care cost is over £620 a week. I mean, that's just crazy. But as I said, we have not had a single bill, we had been told previously we were meant to be a large contribution towards dad's care, but not 100%. If we had been paying bills for care, if we had been sent bills! we would not now be paying 100% of care costs.

£620 (plus) a week is not sustainable, and for what, 3 hours of care calls a day... which at times the carers will not be there for the full hour, but we have been told each call needs to be an hour as they will need to clean and wipe dad when he poos himself. Right now we have no carer calls, the thing about the lockdown means we are at home, although I am working from home, and dad won't call out when he needs help, as he forgets there are people in the house with him.... but that's another story.

Right now I'm thinking... that cost is just crazy for 3 hours a day. How much more would it cost for dad to be in a care environment where he can be properly looked after. I'm having one of those days where I could very easily just wipe my hands clean and walk away. Last night I was woken up by dad screaming, turns out it was possibly a bad dream as he was fast asleep when I checked on him. and then he was coughing a lot.

Anyway, on another note, it's been over a month since occupational health came to visit and reassess dad... we still haven't had the things they promised to help make things easier to clean and look after dad.

I tell you what..... I have not seen my girlfriend for about 6 weeks now, and i probably wont see her for another couple of months. I never said I could care for dad, I have told social services as much as this when he was last in hospital.... but then the social worker made all sorts of promises which were dropped 2 weeks after dad was back home.

But even when things go back to normal, and we are not working from home... then what.... over £620 a week for care costs, ffs.
That’s what dad’s is. I have cut down his time 45 mins In morning x2 carers.30 at lunch with 1 .30 at tea with 1. 30 x 2 in the evening. For 28 days it works to £2000. After all this I’m going to see if I can get it down to 1 carer in the evening as he walks with a frame. But I agree it is horrendous. Dad is self funding.
 

AztecCamera87

Registered User
Mar 12, 2019
148
That’s what dad’s is. I have cut down his time 45 mins In morning x2 carers.30 at lunch with 1 .30 at tea with 1. 30 x 2 in the evening. For 28 days it works to £2000. After all this I’m going to see if I can get it down to 1 carer in the evening as he walks with a frame. But I agree it is horrendous. Dad is self funding.
My dad needs two carers now for each call as he can mess himself at any point and need changing, he can't walk, even with a frame, unless he is being held up and supported (and even then it's a struggle). Right now at least we are paying nothing as we are working from home and dealing with his care needs. However, when we are back at work it will become an issue. we are thinking of just cancelling the morning call (although, if he's having a bad morning, it will mean being late for work, but I could rearrange my work hours hopefully) and then I'm probably going to need to rearrange when I see my girlfriend at weekends to cut back on calls then. Basically, we have calculated if we can cut calls by a third it will at least be sustainable over the long term.

But then at the same time it's like, is sustainable costs really doing to match his care needs... probably not
 

AztecCamera87

Registered User
Mar 12, 2019
148
I know I have asked this before, but how do you know when someone with dementia has a UTI?
Like, I have read through symptoms, and my dad tends to have the symptoms it lists on a daily basis anyway.

Delirium, confusion, mood changes and just... well... just not being him. He tends to need to pee a lot and a bit cloudy, because I assume his diabetes, and it always seems to smell fishy. We can never tell if he is in pain, he just doesn't seem to know he has pain, like he feels it less and less, he will give an occasional grimace. but even if his urine was burning, he wouldn't tell us or maybe even not know himself.

Anyway, for those carers who have a similar PWD, have UTIs gone diagnosed for a long time due to not knowing?

Thanks
 

TNJJ

Registered User
May 7, 2019
1,376
cornwall
I know I have asked this before, but how do you know when someone with dementia has a UTI?
Like, I have read through symptoms, and my dad tends to have the symptoms it lists on a daily basis anyway.

Delirium, confusion, mood changes and just... well... just not being him. He tends to need to pee a lot and a bit cloudy, because I assume his diabetes, and it always seems to smell fishy. We can never tell if he is in pain, he just doesn't seem to know he has pain, like he feels it less and less, he will give an occasional grimace. but even if his urine was burning, he wouldn't tell us or maybe even not know himself.

Anyway, for those carers who have a similar PWD, have UTIs gone diagnosed for a long time due to not knowing?

Thanks
Has your dad been tested for his kidney function lately? My dad has CKD and has diabetes. .
 

TNJJ

Registered User
May 7, 2019
1,376
cornwall
My dad needs two carers now for each call as he can mess himself at any point and need changing, he can't walk, even with a frame, unless he is being held up and supported (and even then it's a struggle). Right now at least we are paying nothing as we are working from home and dealing with his care needs. However, when we are back at work it will become an issue. we are thinking of just cancelling the morning call (although, if he's having a bad morning, it will mean being late for work, but I could rearrange my work hours hopefully) and then I'm probably going to need to rearrange when I see my girlfriend at weekends to cut back on calls then. Basically, we have calculated if we can cut calls by a third it will at least be sustainable over the long term.

But then at the same time it's like, is sustainable costs really doing to match his care needs... probably not
It is never easy is it? To me it is one long juggling act.
 

AztecCamera87

Registered User
Mar 12, 2019
148
Okay, so I managed to speak to a GP at his surgery..... Wasn't aware of anything about my dad's situation. has prescribed dioralyte and told me dad isn't drinking enough and that's why he has a mucus build up and is coughing all night and not sleeping. So it apparently won't be an infection.

I tried to tell the doctor that my dad does drink as we are monitoring it but it's his swallowing that's the problem and that's why he was last in hospital (fluid in the lungs). Anyway... he wouldn't listen, and is only prescribing dioralyte because I said dads poos are very very loose and messy. Everytime I bought back to sleep and night time problems... I was told, oh the dioralyte will sort it out, which is not going to help and then he just told me to call back tomorrow.

SALT have also discharged dad.
 

AztecCamera87

Registered User
Mar 12, 2019
148
Dad is drooling a lot, I'm sure it must be linked to the coughing and the mucus build ups. We've been trying to get him to swallow it, but he wont and there isn't any point to keep pushing him to do so, as he won't remember anyway. But yeah... what I'm wanting to ask is what can I do or buy to at least help keep him clean.

I'm feeling a bit stressed and depressed the last few days, lack of sleep is not helping really. Also just feeling a bit sad as I've been trying to get help but we are just not taken seriously.
 

canary

Registered User
Feb 25, 2014
12,153
South coast
Have the SALT team not recommended thickening fluid so that it is easier to swallow?

You can get adult bibs, but what about using a small hand towel instead?
 

AztecCamera87

Registered User
Mar 12, 2019
148
Have the SALT team not recommended thickening fluid so that it is easier to swallow?

You can get adult bibs, but what about using a small hand towel instead?
We have been using thickening powder for the last 3-4 months, when we noticed the coughing and the choking returning, we got back in contact through the GP as we thought his swallowing was declining and because dad has issues with his speaking and sound levels.

When SALT came to visit, dad was on his best behaviour and had no problems with the level of thickener he's on, I explained this but was just told we must not be doing it correctly (we are and follow the plan to the letter).

SALT have now discharged dad, we are all having patchy sleep at best now.

EDIT: I should also note with regards to the coughing it gets progressively worse during the day and is really bad at night time.
 

TNJJ

Registered User
May 7, 2019
1,376
cornwall
We have been using thickening powder for the last 3-4 months, when we noticed the coughing and the choking returning, we got back in contact through the GP as we thought his swallowing was declining and because dad has issues with his speaking and sound levels.

When SALT came to visit, dad was on his best behaviour and had no problems with the level of thickener he's on, I explained this but was just told we must not be doing it correctly (we are and follow the plan to the letter).

SALT have now discharged dad, we are all having patchy sleep at best now.

EDIT: I should also note with regards to the coughing it gets progressively worse during the day and is really bad at night time.
You can get a suction pump to suck out the mucous. Bit like a dentist . But he might not let you . District nurse could get it. I know not everyone agrees to this but I used to take photos and email them to doctors etc so they could see.
As regards tabards to keep your dad clean I got cotton ones for dad X4 off eBay. They pop around the neck and easy to wash.
Also regards your dad coughing sometimes a neck pillow will keep the head up.
Dad has a hospital bed and sleeps upright as at risk of coughing and choking.
Would a hospital bed be any good.?