Mum with Alzheimer's and no support

[RedorBlack]

My mum has moderate Alzheimer’s and is living with my 85 year old father who can’t cope anymore. They have reasonable savings so don’t qualify for government help but she needs to go into a care home which we can just about pay for privately if I pool my savings and salary as well. The problem is I can’t find one that will take her because she tends to wander off! I can’t find anyone to help of give advice so hoping someone here has had similar experiences or can offer any words of wisdom.

I’m a single mum with two small kids and am doing all I can to support but I’m at breaking point.

Presume they are resident in England?
Age Concern? Adult Social Services?
Are they claiming all they are entitled to? (eg attendance /carers allowance which aren't means tested).
Are they getting any carers attending which will help delay any care home admission (if that's what they want)
There will likely be specialist Alzheimers homes near by. Council quite often have a list.
You will not be expected to contribute to any care home fee. If your parents own their home and have savings its likely that what will happen is that savings are depleted until state help kicks in. Joint savings will be split 50:50 and any that your mum in her name only will be classed as hers. If the home is joint owned then the value of the house will basically split, but your dad won't have to move/pay. The Council will step in and pay until house is ultimately sold (after both of your parents die) You will/may get less say in which home she is placed in.

You’re still entitled to help and advice from adult social services even if your mum is over the financial threshold.
And you absolutely should not have to use your own money for her care! Please do not do that, that’s not how the system works.

Please phone your local council and ask to speak to adult social services.

They should also be able to help find a care home that can cope with people who may wander and try to leave, it’s not an uncommon issue for people with dementia and is one of the most common reasons why people reach the point of requiring 24 hour care so there absolutely will be somewhere that can manage that.

I work for Adult Social Care. She's still entitled to an assessment of her needs and they can support you to find the right placement. Contact your local team.

Caveat: We're understaffed and there is huge demand at present. So don't expect anything overnight. Sorry.

Thank you all. I have tried adult social services and they told me because they have been means tested they can't help and I just need to ring care homes. They wouldn't provide any support beyond that.

Alzheimer's society and Age Uk were very sympathetic and helped sort out attendance allowance etc, but couldn't help us to find somewhere.

I have spoken to over 30 care homes so far. All but one either do not have the space or are unwilling to take her as she wanders.

I had a carer booked to come in the afternoons but every time mum got confused (usually about where she lives) they ended up calling me or on my doorstep to fix it. As I say, I'm a single mum with a very demanding job, I can't always drop everything to fix it as much as I wish I could.

I'm just coming to terms with my mum's dementia. Fortunately it became apparent while she was in hospital and she went straight from there to a home.

Surely she won't be able to wander off from a home? When I visit my mum I can be waiting 15 minutes for someone to open the door and let me out? Or is it because she needs a room on the ground floor? That was an issue for my friend who wanted her mum in a particular home that only had an available room upstairs. The home my mum is in has several mobile patients and lifts between floors.

Staff and spaces are really hard to come by. How easy is it for you to travel to visit? The home my mum is in which a two hour two bus ride but only half an hour by car. I agreed to her going there because there are lots that I have not heard good things about.

Sorry I started typing before there were any other replies and there is no edit feature to delete my post!

Wandering is pretty common. My mum went through a stage of just roaming round the care home. They should be equipped for that. All the outside doors are locked and secure of course. Is it EMI residential you’re looking at?

Hi. Sorry you're going through this - it's so hard.

It doesn't sound right that you'd need to use your savings and salary to support your mum. If your parents are deemed to have sufficient savings, the money should come from there - is there a reason it can't?

Re finding a home: the council sent us a list of all the homes with current vacancies (our council updates this every 2 weeks). It's a case of ringing round to see which homes think they can accept your mum, visiting the ones that sound promising then asking the ones you like to send someone out to assess your mum. (If you have a shortlist, don't let on that you're considering other homes or they may not come out to you.)

Lots of homes on our list said they could take people with dementia but what they can really offer varies massively. For example, some can only take dementia patients if they're immobile.

Another thing to think about is residential vs nursing - does your mum have any nursing needs? If she's likely to develop nursing needs, you may want to find a home that does both so you don't have to move her again in the future.

In my DM's case, the home we preferred (mainly because of the lovely staff) was actually the only one that would take her out of 4 that assessed her (she's feisty and mobile!). She's settled really well and it's a massive relief but it was a really tough trying to find somewhere.

Best of luck!!

OK I'm going to pull no punches here Redor - it's bloody tough sorting out a care placement.

My sister and I had to arrange a care home for my Mum back in February; basically I looked after Mum and DSis was on the phone pretty much constantly. If we'd both been at work normally rather than both on furlough I have no idea how we would have managed and there were 2 of us. There are organisations which will find homes for you for a fee - might be worth investing in this. Type help with finding a care home into google and several come up

Do NOT, what ever you do put your savings forward to help pay for your Mum's care. I know this sounds harsh but your have one income coming into your house and 2 children to care for. You need an emergency pot to tide you over if the car needs major work, you loose your job etc etc.

Don't be so available when the carers' phone. They'll sort it out. Request carers who are experienced at working with people with dementia and ask them for recommendations for homes. In fact ask all your friends, FB Gossip Girl groups for recommendations. Nothing like a personal recommendation to get you in the door.

Good luck

Ring social services back & demand they carry out a CHC assessment and provide a designated social worker for your mum.

When you talk to care homes are you emphasising she is an escape risk then they back off?
Fifty percent of those in DM’s care home would roam free if they were allowed but the doors and entrances are all secured so they can’t.
Go back to the beginning. Choose your favourite three and start over. If they have a vacancy ask them would they come and assess your mum in her home.
As others have said you shouldn’t be paying for their care. Call your local council again and ask to speak to the finance team who cover elderly services. Normally the finance people know all the rules about deferred payment if there is a house to sell ( assume DF is living there). They might hold your hand and help you navigate. It’s v difficult. You seem a great and helpful daughter. You are so nearly at the next stage. Hang on in there. It will get sorted.

Why would you pay, rather than them , from their savings?

Wandering is so common that it's not worth mentioning. It's such a basic thing with dementia, it's the reason that gardens are secure and there are entry codes on all doors to the outside. Your search term here is DOLS (deprivation of liberty safeguards), people can be deprived of their liberty if this is in their best interests.

As everyone has said, you don't pay for her care, she pays for her own care until such time as the local authority pick up the bill.

I am sorry that your local authority have not been more supportive, my mother pays her own fees in full and recently needed to move from residential to nursing care. The local social work team found a place, gave me the phone number, the name of the person I needed to speak to and even which digit to press on the phone menu system. I had to call and make the arrangements but someone else had done all the work.

Has she had a needs assessment? (not the means test or financial assessment that you mentionned) When you say she needs to go into a care home, is that a family decision or a social services assessment?

Have you looked specifically at dementia care homes, are there any in your area?
I work as an activity coordinator in these services, one is supported living where the resident's are unable to leave unless accompanied by family. Another is a day service and there are also dementia care homes.
In all of them we have resident's who 'wander' around, even trying to get out but obviously access and exit is secure.
No one would be refused a place for 'wandering' We are based in the North West.

Hi everyone, sorry for the delay been trying to work and ring round places.

I can't even find someone to give her an up to date assessment. We were urgently referred to the Dementia Intensive Support Team Monday and have told me twice that someone will call me back. They don't. So at the moment it's a family decision because my father can't cope and neither can I. You all make good points on the costs. Fees here are between 12-1400 a week (they live in an affluent area) so was going to top it up so when their funds run out we don't have to move her somewhere cheap and grotty.

Most of the care homes I have spoken to won't even do an assessment on her the second I say Alzheimer's. A friend in the industry told me places are so oversubscribed that homes are choosing to only take the easy residents. I can understand it but it doesn't help at all.

I'm on the Herts Beds border if anyone has any experience in the area.

Have you spoken to an Admiral Nurse? It's a free service and you can make an appointment to speak to someone as a one off or more often. I spoke to someone back in the summer and she was so, so helpful:

www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/

Have you got a list of the suitable care home from the council? Nearly all the ones I looked at for mum were EMI res at least. The vast majority of people requiring care will have dementia or other difficulties.

Thank you all. I have tried adult social services and they told me because they have been means tested they can't help and I just need to ring care homes. They wouldn't provide any support beyond that

That's not true. Your mum is entitled to a care assessment and support to find the right specialist placement, even if she is over the financial threshold. I would contact social services again and insist that it is urgent. If they refuse then raise a complaint. You can generally do that online through the council website.

You need an assessment from my social services. I know you’ve said up thread that your parents have been means tested - what do you mean by this? My parents underwent a full financial assessment but this was after mums needs had been discussed and identified- and care requirements agreed. The financial assessment was just to see how much my mums contribution was. They also can’t include the house in the finances as long as your dad still lives there (and perhaps savings and pensions are solely in his name too?). But first has to come the assessment of your mum’s needs.

I know it’s hard. You’re in the thick of it and can’t see the wood for the trees. But you personally should not pay for the care. This is taking money away from your children. Go back to the beginning and start again.

If she wandering you will probably need a dementia specialist home ( wit( locked doors) rather than a general residential home.

Often local council websites have a list of care homes with the type of care they provide and whilst you are entitled to a CHC assessment they are incredibly hard to meet the threshold for ( if she is mobile it's unlikely ) .

Definitely do not use your savings and I think only half of your parents should be used if it is in joint names

I can't even find someone to give her an up to date assessment. We were urgently referred to the Dementia Intensive Support Team Monday and have told me twice that someone will call me back. They don't

I think you need to be more patient. That’s only 3 days. As a PP mentioned, they are understaffed and underfunded.

Forget about all the fancy care homes with fancy brochures. You need a dementia unit.

Don’t despair. My dad was in a dementia unit, and though it wasn’t anything like the care homes in the ads (well-dressed, silver-haired ladies laughing on pale-coloured sofas), the quality of care was excellent.

The local authority are not acting lawfully if they are refusing to do a care act assessment on the basis they believe your mum will be a self funder.

It is perfectly lawful/truthful for them to suggest you may get quicker results by not going through them if she has the means to pay for her care herself however.

If she has been financially assessed as being full cost/self funding then that means they think she has enough in income/liquid assets to pay the fees herself. No reason why you should be contributing.

Don’t confuse expensive with good. Think about what facilities your mother would actually use. No point having wonderful gardens if there’s no staff to allow her to use them.

My dad was an emergency admission to a cheaper home. It’s small, so everyone knows him, good manager, so happy staff and very little turnover. We’ve realised he is happier there and absolutely no reason to move him to a smarter, more expensive home.

It’s been said once, but needs emphasising - the value of their home won’t be included in the financial assessment since your dad is living in it.

I’m wondering whether she actually needs to go into a home, or at least now. . What if you got a carer in for daylight hours, who could walk out with her/ shadow her. My dad had very restless dementia and wandered, boarded trains etc. He would not accept a home so the only solution was to get home carers. Eventually I got continuing health care for him because of his complex mix of mental and physical health needs. When the dementia was really advanced he went into a home for the last year of his life.
I also agree you should not be paying for her care yourself. There is no legal obligation on you to do this and once your mother’s savings have run down to the last 23 000 or so the local authority should start to pay for her care. The family home should be safe ( for now at least) as your dad is living there.