Anyone have any advice please?

Notenoughsleep

Registered User
May 25, 2015
31
Wales
Hi all,
Haven’t posted for a while, but browsing daily - am now after some advice from you kind lot.
After going through a nightmare summer full of confusion, hallucinations, utis and mobility problems etc, mam was finally diagnosed by the memory clinic in September with mid alzheimers and lewy bodies dementia. We had previously paid private for a diagnosis of mid alzheimers back in June and she was prescribed memantine which worked only initially. At the September diagnosis, she was prescribed donepezil and the improvement was almost instantaneous – within 2 days she was back to her old self - hoovering, washing dishes, no use of a walking stick and very much aware that she had “been away”. Conversations were back to normal, she knew who I was and knew how to use a toilet again – brilliant! It was like the “on” switch had been flicked – a real miracle! She continues to be doing well on the donepezil with just the odd memory lapse but mobility problems are creeping up again and she now uses her stick - we have a follow up appointment at the clinic later this month. However, although this miracle drug has worked its magic throughout the day time, the night time is still an issue for us as she still wakes for the toilet and is very shaky on her feet - if she were to fall, I am convinced it would be at night time. She was prescribed melatonin which brought her night time waking from 11 times to 4, which is where we are now at. Since June, I have been employing night people to assist her. I initially employed the cheapest agency I could find which was £10 per hour but now employ friends/colleagues/people I can trust, so this works out even cheaper – I’m talking 10 hours per night, 7 nights per week. I work, have kids and cannot stay over unless in an emergency. As you can imagine, £600-£700 per week is eating its way through mam’s savings – she initially had £11,000 but we’re now down to about £3,000 and I’ve just started on the £20,000 she gave to me to “mind” for her over the years (I’m an only child). She owns half her house, step sister is tenant in common, full value of house about £100,000. She gets a private pension and higher rate attendance allowance. GP and SS are aware of her night moves but SS won’t provide night help, instead we are allowed respite care every few weeks. We had a financial assessment back in September regarding payment for respite care and the house was disregarded from this assessment but the letter states if she has to go in permanent then they may consider the house (part owned with step sister). The cost for respite at the LA run dementia home she attends, and which is the one she will eventually move into, is £187 per week - much cheaper than paying night sitters. The actual cost of the home if she were to permanently reside would be about £550 per week.
I feel we’re now at the stage where she will have to go into a home permanently this year as the money will run out but she is not at the stage where she needs to go into a home. So, what do I do? Should I tell her while she is lucid, that the money is running out and that selling the house and moving into a home is the next step? Should I tell SS of the financial position now? My other worry is I have no receipts to show where the money has gone as I pay the sitters cash in hand. I do have POA.
Sorry to ramble - the New year coming in has brought all this year’s realisations with it and I’m just trying to keep my mam safe from falling at night but it is SO expensive. If you’ve got this far, thanks for reading!
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,450
Yorkshire
Apologies Notenoughsleep, I don't have time for a long reply
but I seriously wonder if SS are correct about the house - if it is owned and lived in by both of them, it surely would be disregarded when assessing your mum's financial situation
if you don't have receipts, maybe put together a spreadsheet of payments as accurately as you can, just to show that you have been acting in good faith and for your mum's benefit
the finances of night care v care home don't really stack up - but it's not all about money, you are trying to give your mum the appropriate care for her
if it is realistic to have a chat with your mum about her wishes, you may even discover that she would be happy to stay in the home
it's a tough time and difficult choices to be made (dad went into a care home last year) but you will find your way through
 

Notenoughsleep

Registered User
May 25, 2015
31
Wales
Apologies Notenoughsleep, I don't have time for a long reply
but I seriously wonder if SS are correct about the house - if it is owned and lived in by both of them, it surely would be disregarded when assessing your mum's financial situation
if you don't have receipts, maybe put together a spreadsheet of payments as accurately as you can, just to show that you have been acting in good faith and for your mum's benefit
the finances of night care v care home don't really stack up - but it's not all about money, you are trying to give your mum the appropriate care for her
if it is realistic to have a chat with your mum about her wishes, you may even discover that she would be happy to stay in the home
it's a tough time and difficult choices to be made (dad went into a care home last year) but you will find your way through
Thanks for your reply shedrech. I have been keeping a spreadsheet but didn't think it would stand somehow. But if that's the only proof I have then it'll have to do.
Step sister doesn't live with mam, haven't seen her for 21 years just her name on the deeds .
I agree, decisions to be made all the time , exhausting.
 

Pickles53

Registered User
Feb 25, 2014
2,474
Radcliffe on Trent
Thanks for your reply shedrech. I have been keeping a spreadsheet but didn't think it would stand somehow. But if that's the only proof I have then it'll have to do.
Step sister doesn't live with mam, haven't seen her for 21 years just her name on the deeds .
I agree, decisions to be made all the time , exhausting.
Sounds like you may need some legal advice but my initial assumption would be that a sale could not take place without the consent of stepsister. If she doesn't live there, it will be harder to argue that the house could not be sold if needed to pay care home fees.

Do you know where stepsister lives? Could you contact her if needed?
 

Notenoughsleep

Registered User
May 25, 2015
31
Wales
Sounds like you may need some legal advice but my initial assumption would be that a sale could not take place without the consent of stepsister. If she doesn't live there, it will be harder to argue that the house could not be sold if needed to pay care home fees.

Do you know where stepsister lives? Could you contact her if needed?
Thanks pickles. Her address is stated on the deeds but not sure if she still lives there. Think I'd prefer solicitor to contact her anyway. But wouldn't she HAVE to agree to a sale ? After all, she'll benefit. And am I right in assuming only mams share would pay for care home fees?
 

luckymalcolm

Registered User
Mar 16, 2010
8
Grimsby
Hello Im sorry to hear of your plight.

Hi all,
Haven’t posted for a while, but browsing daily - am now after some advice from you kind lot.
After going through a nightmare summer full of confusion, hallucinations, utis and mobility problems etc, mam was finally diagnosed by the memory clinic in September with mid alzheimers and lewy bodies dementia. We had previously paid private for a diagnosis of mid alzheimers back in June and she was prescribed memantine which worked only initially. At the September diagnosis, she was prescribed donepezil and the improvement was almost instantaneous – within 2 days she was back to her old self - hoovering, washing dishes, no use of a walking stick and very much aware that she had “been away”. Conversations were back to normal, she knew who I was and knew how to use a toilet again – brilliant! It was like the “on” switch had been flicked – a real miracle! She continues to be doing well on the donepezil with just the odd memory lapse but mobility problems are creeping up again and she now uses her stick - we have a follow up appointment at the clinic later this month. However, although this miracle drug has worked its magic throughout the day time, the night time is still an issue for us as she still wakes for the toilet and is very shaky on her feet - if she were to fall, I am convinced it would be at night time. She was prescribed melatonin which brought her night time waking from 11 times to 4, which is where we are now at. Since June, I have been employing night people to assist her. I initially employed the cheapest agency I could find which was £10 per hour but now employ friends/colleagues/people I can trust, so this works out even cheaper – I’m talking 10 hours per night, 7 nights per week. I work, have kids and cannot stay over unless in an emergency. As you can imagine, £600-£700 per week is eating its way through mam’s savings – she initially had £11,000 but we’re now down to about £3,000 and I’ve just started on the £20,000 she gave to me to “mind” for her over the years (I’m an only child). She owns half her house, step sister is tenant in common, full value of house about £100,000. She gets a private pension and higher rate attendance allowance. GP and SS are aware of her night moves but SS won’t provide night help, instead we are allowed respite care every few weeks. We had a financial assessment back in September regarding payment for respite care and the house was disregarded from this assessment but the letter states if she has to go in permanent then they may consider the house (part owned with step sister). The cost for respite at the LA run dementia home she attends, and which is the one she will eventually move into, is £187 per week - much cheaper than paying night sitters. The actual cost of the home if she were to permanently reside would be about £550 per week.
I feel we’re now at the stage where she will have to go into a home permanently this year as the money will run out but she is not at the stage where she needs to go into a home. So, what do I do? Should I tell her while she is lucid, that the money is running out and that selling the house and moving into a home is the next step? Should I tell SS of the financial position now? My other worry is I have no receipts to show where the money has gone as I pay the sitters cash in hand. I do have POA.
Sorry to ramble - the New year coming in has brought all this year’s realisations with it and I’m just trying to keep my mam safe from falling at night but it is SO expensive. If you’ve got this far, thanks for reading!
Your situation is similar to mine. If your Mum needs nursing care then you could be funded by NHS continuing health care. If her house is part owned and lived in by your Step Sister then it will be classed as your sisters address too and social services cannot make you sell it to pay for care home funding as it is her home too (as long as she has lived there for some time and not just moved into the house). As the other comment made, do a spreadsheet or list of payments made to show Social Services you have used the money for your Mum. As you have POA you are entitled to use the money to help your Mum. Moving into a home is a big step. As with mine, she is at that mid stage of hallucinations, not knowing what is real and then having a normal conversation when visitors arrive. I try to be cheerful when Im with her and not get stressed, though I know that is difficult at times but she will remember the happy times you spent with her. I try to watch comedies or talk about the past with her. She often says she should be in a home but then cannot make a decision. I hope things get better for you.
 

Notenoughsleep

Registered User
May 25, 2015
31
Wales
Your situation is similar to mine. If your Mum needs nursing care then you could be funded by NHS continuing health care. If her house is part owned and lived in by your Step Sister then it will be classed as your sisters address too and social services cannot make you sell it to pay for care home funding as it is her home too (as long as she has lived there for some time and not just moved into the house). As the other comment made, do a spreadsheet or list of payments made to show Social Services you have used the money for your Mum. As you have POA you are entitled to use the money to help your Mum. Moving into a home is a big step. As with mine, she is at that mid stage of hallucinations, not knowing what is real and then having a normal conversation when visitors arrive. I try to be cheerful when Im with her and not get stressed, though I know that is difficult at times but she will remember the happy times you spent with her. I try to watch comedies or talk about the past with her. She often says she should be in a home but then cannot make a decision. I hope things get better for you.
Thank you luckymalcolm. It's hard not to get stressed about all this and I too try not to show it and keep cheerful, though I think my mam senses when I am not myself. We've had no contact with step sister for 21 years and I think she'd be delighted to hear that the house needs to be sold! I did speak to mam about all of this as she is "normal" at the moment (you wouldn't think she has dementia, apart from the odd slip up. It's the mobility that's the problem). She was horrified to know this is the stage we are at. I suggested her going into the home for 2 weeks a month, every month, for respite and am about to ask social services if this would be possible. This would make it financially better for us and mam is in agreement to it. Don't know what social services' views will be though. The dementia was so fast moving at the beginning of last year - there was a massive deterioration from January to March, and from March to June it had reached its peak. This donepezil has been brilliant for the last 4 months but I can see little cracks beginning to appear so I'm thinking it is still creeping along rather than racing. I'm having a chat with the consultant at the end of the month. If she was in the state she was in last June, then it would feel justifiable putting her into a home, but to put her in when she fully understands seems cruel - and plays on my mind every waking moment. We have got even closer since last year and I, like you, try to watch comedies and record anything about the royal family, which she loves! Trying to avoid the Emmerdale storyline though. What has your mother been diagnosed with and is she on medication?