Dementia care (home Vs care home)

gettingtheresometime

My mum hasn't got Dementia but we've been looking after her at home for the last fortnight due to her needing care following a period of illness.
It has given me a clear insight to how hard work it can be, not to mention the stresses of trying to work & cover all the normal day to day bases.

noclaf

tooldle said:

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. 

Thanks I will look into this, for example my proposed plan is to buy out my mum's share of our house and use the proceeds to fund her care along with her existing pensions/benefits. She receives AA (lower) though I'm pushing to get higher with a upcoming review. She is not eligible for pension credits (I checked). Not aware what else she could receive. She has limited vision in one eye but as far as I am aware there are no additional benefits for this just the higher rate AA I believe. DLA is also covered/succeeded by AA now..I think.

TBagpuss

Relatives of mine decided to look after their mum  (well, my relative's mother in law!) at home. When they first started she was moving from warden-supported flat as she needed more help then they could provide, and at the time, having her at home was less expensive than a care home, at that time they had a carer in for (I think) 2 x 2 hrs a day. 
Her health declined - she had dementia and went through period where she would wander and where her sleep patterns went haywire so she would get up and try to go out at 3 a.m. and things like that. She was still mobile but increasingly frail and unsteady on her feet so needed someone checking on her very frequently to avoid falls.
They wound up needing almost round the clock carers and it became much more expensive than a care home would have been.
They also said that despite having the resources to pay for carers, it was still a huge strain on them - they found the loss of privacy from having  other people in the house such a lot of the time difficult,  and they found it very hard to get away for breaks as even if they got sleep-in carers , they still needed to be available to deal with any issues which might come up. 

In their case, she also lived for a lot longer than anyone had anticipated, given her health at the time she moved in with them (she died earlier this year, at the age of 99) and had used up al of her own funds by that point.

Fortunately my relation and his partner were in a position to, and willing to, cover the costs themselves and decided not to move her to a home (partly as I think the funds running out coincided with the start of the pandemic ) but from various conversations I've had with them at different times, I think that their position was that, with hindsight and knowing how hard it was, they would have made a different decision, possibly at the time she originally moved in with them, and certainly at the point when her dementia worsened and her care needs increased.

As far as I know, they used her money solely for the carers - they chose to sell their properties and buy a single larger house, to provide space for her, and while they did make some changes to the house such as installing a ground floor wetroom, I don't think that they used her money to do so  - I think if you were looking at significant changes to the house you would have the additional issue of potentially having to sell your home in order to free up your mum's interest in it, if you needed to move her into residential care at a later stage

In the last year it was particularly hard as they are both elderly themselves with pre-existing conditions, so having carers coming to the house every day was a big added stress, but even without that,  I think that had they known at the outset what would be needed and for how long, they would have made different choices. 
. 

noclaf

Really appreciate the input so far so thanks everyone.
Just for additional context and what has/is shaping my perspective on this..both my parents were impacted my different forms of mental illnesses to the extent they had to both take early retirement from work..one of them was v severe and it effectively ended their career and then the rest of their life was spent in hospitals or care homes. That later on would ultimately have a knock on impact to my other parent.
So if I want the start a family then rather selfishly want to ensure my own mental health is not negatively impacted by the stress of work+a child+carer duties....especially to consider the needs of children if I have any.
Bit of a long post there but based on my own life experiences with two unwell parents it makes you v aware of these considerations.

Bossyboots

It would be a good idea to hop over to the Alzheimer's Society website and join Talking Point.  There are members who have gone through every imaginable scenario in caring for relatives, including the impact on young children being raised with a dementia sufferer living in the same household.

noclaf

Bossyboots said:

It would be a good idea to hop over to the Alzheimer's Society website and join Talking Point.  There are members who have gone through every imaginable scenario in caring for relatives, including the impact on young children being raised with a dementia sufferer living in the same household.

Thanks, will check it out.

bouicca21

We used a mixture of pop in carers, meal on wheels and day centres for my mum and paid a couple of  people just to go in and talk to her.  It worked well for a year or so but eventually the care needs were too much and we found a very nice care home.    And yes we had to sell her house to fund it, but it was a huge weight off our minds to know that she was getting reliable round the clock care.  We are maybe wired to want to look after our elderly relatives ourselves but dementia only gets worse and proper professional care is so much better.

AnotherJoe

noclaf said:

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.

It wont be if you have an extension built. Both while its being built, and after (unless you go and live in it )

How would/ do you cope with nights? Are there carers in?

My dad had dementia. After a while looking after him at home was literally impossible as he was very active and would try and go out all the time, eg if my mum went into the kitchen, he would notice she wasnt there and would go out to look for her. At least think thats what he was doing. Care home much better set up for that.

Someone less mobile wont have that problem but them needs more people on hand 24 x 7

I woudlnt build an extension. It woudl be less disruptive to move, and decorate her new room same as her old. Relatives of mine did this when they moved their mum into a care home, moved decorations / pictures from home and some furniture. Cant do that everywhere of course.

sparkiemalarkie

My mum had dementia and I looked after her in her own home with the help of carers.
I cared for mum for 15 years and she died just 2yrs ago.

Looking back I really regret doing it.

There has been a huge cost to me personally, to my children, to my marriage and to my relationship with my siblings.

At first caring for her was manageable but after several years, as she deteriorated, I could give less time to my children and husband.
My children missed out big time and this is my biggest regret.

My siblings cheered me on from the sidelines but did very little to help.....

I regret that I spent my time with mum as her carer and not as her daughter ~ My role became one of doing, organising, getting and arranging instead of enjoying our time together and just 'being'

Maybe you have a very supportive family and maybe there are plenty of you to share the difficult stuff.
I wish you well

noclaf

AnotherJoe said:

noclaf said:

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.

It wont be if you have an extension built. Both while its being built, and after (unless you go and live in it )

How would/ do you cope with nights? Are there carers in?

My dad had dementia. After a while looking after him at home was literally impossible as he was very active and would try and go out all the time, eg if my mum went into the kitchen, he would notice she wasnt there and would go out to look for her. At least think thats what he was doing. Care home much better set up for that.

Someone less mobile wont have that problem but them needs more people on hand 24 x 7

I woudlnt build an extension. It woudl be less disruptive to move, and decorate her new room same as her old. Relatives of mine did this when they moved their mum into a care home, moved decorations / pictures from home and some furniture. Cant do that everywhere of course.

Good point, I think the extension idea is on hold for now..maybe further down the line to enhance the house we may extend but not specifically for my mothers care needs etc.
The nursing home seems the best option after much thought, but il need to speak to the GP re another assessment and consult with wider our family too.
My mothers diagnosis was more than 10, years back so has been slow progression..I'd say that's due to keeping her at home in a familiar environment.
Carers currently attend 3 times per day but not nights.  If she has a restless night then it does impact my wife and I....so it's been a struggle and v stressfull at times hence we at a point now when the next stage has to be considered as it's just unworkable long term to continue care at home.