Dementia care (home Vs care home)

Lavender13

As mum has dementia, have you got the support of an Admiral Nurse?As they could help and support you with some of the questions you have raised. If not you can find out if your area has an Admiral Nurse on the Dementia UK website : 

https://www.dementiauk.org/get-support/find-an-admiral-nurse/

Information about Admiral Nurses can be found here :
https://www.dementiauk.org/get-support/admiral-nursing/
If there is not an Admiral Nurse in your area you could still get support by calling the Admiral Nurse Dementia Helpline on 0800 888 6678 from 9am to 9pm Monday to Friday, and from 9am to 5pm during the weekend.

Pennylane

Lavender13 said:

As mum has dementia, have you got the support of an Admiral Nurse?As they could help and support you with some of the questions you have raised. If not you can find out if your area has an Admiral Nurse on the Dementia UK website : 

https://www.dementiauk.org/get-support/find-an-admiral-nurse/

Information about Admiral Nurses can be found here :
https://www.dementiauk.org/get-support/admiral-nursing/
If there is not an Admiral Nurse in your area you could still get support by calling the Admiral Nurse Dementia Helpline on 0800 888 6678 from 9am to 9pm Monday to Friday, and from 9am to 5pm during the weekend.

This might work for some, but in our case the Admiral Nurse was hopeless.  She was a trained nurse and I knew her from our GP practice then she got the job as an Admiral Nurse.  Whether she received any further training on dementia I have no idea but I suspect not because she really didn’t know much about dementia and, in my opinion, did not know how to effectively communicate with people with dementia.  

noclaf

lisyloo said:

A couple of points (and apologies I haven’t read the entire thread).
is the extension exclusively for her? Sometimes people move/extend and then the person dies, for example some died earlier than expected in the pandemic.
Is she funding care or would the LA be expected to contribute? my experience which other have also reflected is that you won’t get LA help until her/you are on your knees. When my MIL was in hospital we took my FIL (late 80s and disabled) into the meeting with the discharge coordinator. He hobbled in on his zimmer and broke down emotionally saying he couldn’t cope. They accepted this but you won’t get tax payer help if there are other alternatives. The person has to be in danger (of falling or making unsafe decisions) without recourse to help to get LA funding. If there is anyone in the house who is not working/too elderly or disabled then they are expected to provide the care.

My mum currently receives two pensions and AA. The plan is for mum to fund her care to the extent we can but will also see what else (if anything) she is entitled to. I won't go into the details here as it will turn into an essay but regarding the funding I have a plan of how we will do it but going through a probate process for my father at the moment which has been dragging out and untill that's concluded there are certain areas that we can't move forward on. Hoping there will be a resolution soon but in the meanwhile I've asked for my mum's social services review to be brought forward and will also speak to her GP soon.

amanda_p

My cousin looked after both her parents at home with Alzheimer's. It was the worst decision she ever made. To begin with they were coping but as the disease progressed it was almost untenable. She got very little sleep for years and although they had carers 4 times a day which helped, the sheer mental strain almost pushed her to a breakdown. Her sister would pop in once a month with a bunch of flowers then disappear for another month, saying she couldn't cope and had to leave.

Hindsight is a wonderful thing but she now realises looking after them at home was not the right decision. It has had a huge impact on her children and her husband, towards the end there was no time for them at all. The whole family suffered and all she wanted to do was the right thing for her parents.
She says for the last 15 years she has barely survived, she wouldn't call it living, there was no break from it. 
I think a lot of people say it will be fine, you will get help,you can get respite care etc.etc. The reality is very,very different.
Think long and hard about your decision, my cousin now feels for 15 years her life was put on hold and she will never have that time back with her children especially. Her mental health has also suffered greatly. She is not the person she once was. A very sad situation for all concerned.

Pennylane

amanda_p said:

My cousin looked after both her parents at home with Alzheimer's. It was the worst decision she ever made. To begin with they were coping but as the disease progressed it was almost untenable. She got very little sleep for years and although they had carers 4 times a day which helped, the sheer mental strain almost pushed her to a breakdown. Her sister would pop in once a month with a bunch of flowers then disappear for another month, saying she couldn't cope and had to leave.

Hindsight is a wonderful thing but she now realises looking after them at home was not the right decision. It has had a huge impact on her children and her husband, towards the end there was no time for them at all. The whole family suffered and all she wanted to do was the right thing for her parents.
She says for the last 15 years she has barely survived, she wouldn't call it living, there was no break from it. 
I think a lot of people say it will be fine, you will get help,you can get respite care etc.etc. The reality is very,very different.
Think long and hard about your decision, my cousin now feels for 15 years her life was put on hold and she will never have that time back with her children especially. Her mental health has also suffered greatly. She is not the person she once was. A very sad situation for all concerned.

Good post.  I know several people who experienced the same. the thing is with dementia it can progress slowly or very rapidly and is not the same in any two people.  It comes with lots of health issues too and you might be caring for someone in the early stages which just presents as forgetfulness but  can quickly escalate to a violent, aggressive person or someone who is doubly incontinent and is totally immobile. 

It really bugs me when ignorant people say things like “you should look after your old people at home”.  How do you do this if you don’t have a spare room, if you still work full time, if you already care for grandchildren, if you are disabled yourself or you are not capable of lifting or hoisting people?  When my poor Mum was going through this I used to say that if I won the lottery I would buy a massive bungalow so Mum could live with us and have loads of space around her and I would employ 24/7 carers for her, hairdressers, girls to read to her, do her nails and generally pamper her in her final years.  I didn’t win though! 

Keep_pedalling

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. 

You may have got away with it, but long term investments are not appropriate at that stage of life. Time it wrong and 20-40% of it could be wiped out in a day.

tooldle

@Keep_pedalling I am not ‘getting away’ with anything. As i said mum has a managed investment, i said nothing about this being long term. ‘Managed’ means the account is regularly reviewed and a written reasoning is provides for any trades / transactions or changes. Exactly the same as any other person with capital. Believe it or not, an IFA will take account of an individuals circumstances, prior to making their recommendation on how best to meet the customers brief. Mum receives income from the investment which combined with her pensions, covers her fees and provides spends. The overall valuation goes up and down all the time. She has been in care for 8 years and the pot even if it were reduced by more than half, would more than outlast her lifespan.