Dementia care (home Vs care home)

noclaf

I'm currently a carer for my mother who has Dementia/Alzheimer's. She is still mobile and independent in the house but we have carers who visit daily (arranged via LA) and I manage her finances including payment for care costs by way of a deputyship.
I'm stuck in a hard place at the moment in terms of future care decisions, preference is to keep her at home and build out a extension or granny annexe of some kind as we are at a point where living quarters/space needs to be segregated to make this work better.
If we go down the route of keeping her at home I will be funding most of the costs with regards to building work needed. 
I'm a bit stuck as to who can really provide 'advice' here as each situation is different. 
It would be good to get any other carers experiences and to understand if I am being realistic about home care and have taken into consideration all important factors...my mother's condition could easily accelerate without warning, are the impending care costs for home care actually cheaper than a nursing home?...do I fully understand how challenging it might be managing the home care along with my own family when that time comes?
 A lot of different questions on my mind but if anyone has relevant experiences they are ok to share then I'm all ears as it might be a good starting point.
I'm.aware there are charities out there and.of course social services and the GP but nothing beats real life experiences hence posting this thread.

tooldle

I can't remember the exact figures but did look at this some years ago when making decisions for my mum. At home care on a 24/7 basis was at that time considerably more expensive than a care home. In a situation of mixed care, things are a lot more complex in that you can contribute but your own wellbeing and circumstances will vary with time. Segregating living space does bring its own difficulties unless, you are wanting to deny access to the outside world. So much depends on the progression of dementia. My mum for example is reasonably placid. She is safe as there is someone 'caring' 24hrs for her. If she were unattended in a kitchen for example, she would be dangerous not just to herself but also to any attached household. Mum's care costs are a few pennies less than £40K, which works out at just under £4.50 per hour. There are no additional costs for household maintenance, food etc.
I'm not sure i have answered you question, but i hope the above helps with context if nothing else.

Mojisola

I have a relative who is paying £1,300+ a week for a live-in carer and extra carers morning and evening to get him up and then back into bed (one carer can't be expected to lift and move him).  Family visit every day to give the carer a couple of free hours.

Add on to that all the household expenses and he could definitely pay less in a good local care home.

Having had experience in the family of caring for several people with dementia and doing building work at home (not at the same time), I wouldn't go with the extension.  It would be very stressful for your mother to have all the disruption of the building work and you could find that she deteriorates and needs more care than you can provide before it's even finished.

Most carers underestimate the impact of being a 24/7 carer on their own health, both physical and mental.

noclaf

Tooldle - Thanks, that's a useful post and it reinforces some of my thoughts that home care isn't necessarily cheaper than a nursing home, it's just a more familiar environment. 
I've been thinking/preparing/planning for this for years.to be honest so have a sense of what the options are but need to look into the cost elements a bit further.
As it stands, my mother could live in an annexe though whether she will stay in there is another question! No risk of her leaving the house (so far) but she does move around the house and that in itself can be a challenge when trying to avoid her eating/drinking certain food or drinks or manage her diet etc

The £40k figure you quoted is in line with  my fathers care costs as recent as last year.
My mother's pension+benefits such as AA would certainly not cover anywhere close to £40k so we would have to sell her share of the house if her care requirements change such that additional care is needed in-house or via a care home. This I'm already planning for from a financial perspective but would need to be able to get a mortgage and even before that for the CoP to agree it's in her interests etc.
I have to also weigh up the costs of adapting the house to create an annexe both financially and physically/mentally (will need to put her in a care home on a temp basis if major work is needed) Vs care home option.
Just a thought but let's say pie in the sky figure of £50k minimum total costs to renovate/adapt house and then potentially £40k annual care fees on top...that will.not be financially workable unless there is additional LA funding and even then a benefit such as FNC will not suffice.

noclaf

Mojisola said:

I have a relative who is paying £1,300+ a week for a live-in carer and extra carers morning and evening to get him up and then back into bed (one carer can't be expected to lift and move him).  Family visit every day to give the carer a couple of free hours.

Add on to that all the household expenses and he could definitely pay less in a good local care home.

Having had experience in the family of caring for several people with dementia and doing building work at home (not at the same time), I wouldn't go with the extension.  It would be very stressful for your mother to have all the disruption of the building work and you could find that she deteriorates and needs more care than you can provide before it's even finished.

Most carers underestimate the impact of being a 24/7 carer on their own health, both physical and mental.

Much of this post resonates with my experiences as a carer too. I've done well to get to this point as my mother was diagnosed many years back with the last couple of years being the most challenging with the gradual deterioration. I also work full time in a stressful/demanding job...it's not a good combo and certainly won't be sustainable long term.
A few years back I had to get house work done and also arrange temp accomodation for my mother with family...one of the most stressful periods ever...my cortisol level was likely through the roof lol.  I had an incling that building work + temp accomodation + every other stress life brings will not balance out going down the route of extension so might need to look into the care home option a bit more and also discuss with wider family too.

tooldle

Back to add another point. Like you I work full time and have a career. Back when I was first considering a Care Home for my mum, a lot of people 'suggested' that she won't be here forever and perhaps it would be best for all that I looked after her myself. I've found people / family are generous with their advice and are the exact opposite when it comes to hand on support. My mum has now been in care for almost eight years. There is no way I could have managed my own life /career/family and full time care of mum for eight years. What was familiar to her back then is no longer familiar.
Are you a joint owner of the current property with your mother? I'm in Wales so it might be different where you are. We have Carers Centres that provide support to Carers and their families, this includes advice on benefits and finances. If you have a similar service in your area it might be worthwhile having a chat with somebody experienced in the financial side of things. My mum has a small pension of her own and has a widow's pension from my Dad along with some of his State Pension. She gets AA and I plug the gap by drawing funding from her investments (proceeds of house sale). For the most part her investments have grown enough to cover costs and the capital remains untouched (it does fluctuate a bit).

noclaf

tooldle said:

Back to add another point. Like you I work full time and have a career. Back when I was first considering a Care Home for my mum, a lot of people 'suggested' that she won't be here forever and perhaps it would be best for all that I looked after her myself. I've found people / family are generous with their advice and are the exact opposite when it comes to hand on support. My mum has now been in care for almost eight years. There is no way I could have managed my own life /career/family and full time care of mum for eight years. What was familiar to her back then is no longer familiar.
Are you a joint owner of the current property with your mother? I'm in Wales so it might be different where you are. We have Carers Centres that provide support to Carers and their families, this includes advice on benefits and finances. If you have a similar service in your area it might be worthwhile having a chat with somebody experienced in the financial side of things. My mum has a small pension of her own and has a widow's pension from my Dad along with some of his State Pension. She gets AA and I plug the gap by drawing funding from her investments (proceeds of house sale). For the most part her investments have grown enough to cover costs and the capital remains untouched (it does fluctuate a bit).

Family mean well and we have a fairly large extended family who are supportive and understanding of my struggles but ultimately they have their own lives, challenges and issues to deal with too so they can offer advice, but the onus is on me to move forward with the situation somehow. To be fair a lot of people including family just won't get it unless they have been through similar.

Curious if you don't me asking..what investments does your mum have? 
I personally invest in Equities but can't see it being suitable for shorter term to fund care costs given the potential downside risk hence wondering what else be used for Investments?
My mother also receives a civil service pension along with state pension.
Housing situation a bit complicated at the moment.

tooldle

Hello again, mum has a range of investments. It's a managed service so all the decisions, trades etc are looked after. Rathbones is the company providing the service. I've been pleasantly surprised as to how much income has been generated. When I took over her finances there was roughly 200k spread around various saving vehicles and a bungalow. The bungalow raised just over 300K. All in all she now has around 560K despite drawings of 1600 per month. Depending on your figures, it might be worth having a chat with a good IFA to explore options. 

noclaf

tooldle said:

Hello again, mum has a range of investments. It's a managed service so all the decisions, trades etc are looked after. Rathbones is the company providing the service. I've been pleasantly surprised as to how much income has been generated. When I took over her finances there was roughly 200k spread around various saving vehicles and a bungalow. The bungalow raised just over 300K. All in all she now has around 560K despite drawings of 1600 per month. Depending on your figures, it might be worth having a chat with a good IFA to explore options. 

Thanks. Certainly will not discount using an IFA though I think it might be a bit late now to begin investments given the timeframe needed to grow them and the risk etc If my mother goes into care next year for example we would need to start burning cash straight away to fund the care. I will look into it though, maybe there is something I am not aware of.

Pennylane

We looked into having live in care for my late Mum and it worked out much more expensive than a good care home. You have all your household bills, food etc then the careworkers wages on top. Also bear in mind that they will Spend all their time together so it is vital they “gel”.   There are some excellent care homes out there and residents have lots of company and 24/7 care which puts your mind at rest.  Mum’s care home was brilliant and nothing was too much trouble.  They sent flowers and cards when she passed away and still email to check how I am doing.  

tooldle

noclaf said:

tooldle said:

Hello again, mum has a range of investments. It's a managed service so all the decisions, trades etc are looked after. Rathbones is the company providing the service. I've been pleasantly surprised as to how much income has been generated. When I took over her finances there was roughly 200k spread around various saving vehicles and a bungalow. The bungalow raised just over 300K. All in all she now has around 560K despite drawings of 1600 per month. Depending on your figures, it might be worth having a chat with a good IFA to explore options. 

Thanks. Certainly will not discount using an IFA though I think it might be a bit late now to begin investments given the timeframe needed to grow them and the risk etc If my mother goes into care next year for example we would need to start burning cash straight away to fund the care. I will look into it though, maybe there is something I am not aware of.

Just to say my mum's investments were made after she went into care. It is worth checking that she is getting everything she is entitled to, in terms of income.