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!
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!
