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What do I do now?

Chrissie48

Registered User
Nov 22, 2021
14
0
Myself and my husband both work full time but have been caring for my mother since March 2021 when she started wandering and now has a diagnosis of Alzheimer's dementia. I submitted a carers assessment back in October 2021 and a meeting with the social worker and my mother took place 6 weeks ago where it was recommended that a care package be put in place for a morning visit and an evening visit. That report has still not be written up and no further action has taken place despite me chasing on a number of occasions.

My mother can care for herself on a basic level and I am happy to assist with her shopping and sorting stuff/cleaning and manging her bills and appointments but due to her getting lost pretty much any time she goes out and heading off in the complete wrong direction onto possible dangerous roads we are living on a knife edge and can no longer cope with the responsibility. I have worked hard all my life and my job is very important to me and I cannot just give up work to look after my mother full time. There are no family members/friends/neighbours able or willing to support in looking after mum. Befrienders seem non existent and she doesn't want to go to a day centre. She doesn't have funds or the room to have carers live with her. We have trackers, motion sensors, webcam so we can keep any eye on her and find her when she goes out but you can't just drop everything when you are working.

So what do I do? I can't just abandon her as she is my mum but we can't carry on as we are. We have not had any break from our caring responsibilities since she started wandering and it is affecting our health and wellbeing.
 

T1000

Registered User
Feb 3, 2022
110
0
Sounds like you could use a weeks' respite and that might give some space to breathe and think. Does your mum have funds for this at least? If not, can you get a grant perhaps? I got a small grant when I registered as a carer and had an assessment after covid.
Sounds like her needs are changing and you may well need to move her to a home. Is she in rented or owned property? If owned , likely the property market would go down next year, can you last another 2 years doing it yourself if you need to wait for the market to recover?
If there is no property to sell, she will get funded and once you can speak to the social workers again I would get that process started soon as takes a while I think.
 

Sarasa

Volunteer Host
Apr 13, 2018
4,859
0
Nottinghamshire
Hi @Chrissie48, I think the time has come to consider a care home. I know it is not something that anyone wants to do, but the fact your mother is going out wandering and putting herself at risk is a red flag that she needs to be somewhere more secure. I know a move into care can seem like failure and it is something that few people want, but the right care home, and they are not all alike, will enable your mother to have a much better quality of life and you can be her daughter not a worried and frazzled carer.
The one problem will be if your mother needs social services to fund a place. SS will certainly want to try carers at home first, but the problem is if your mum decides to go wandering it isn't necessarily going to be when there is someone around. My mother was at a similar stage to yours when I moved her into care. She could do her personal care and manage to make a simple meal, though that was getting more difficult for her. What made me decide on the move was that she was going out drinking with random men and putting herself at risk.
I'd get back to social services and talk through your concerns. If your mother does have savings of over £23,500 you could start looking at care homes and maybe suggest that she goes to one for respite, maybe calling it a 'holiday' .
 

Chrissie48

Registered User
Nov 22, 2021
14
0
I have asked the SW about respite care. I am already on the waiting list for a weekly 3.5hrs respite care but no idea when we will get to the top of the list. Despite chasing the SW no response has been received about the care plan or respite care....or about anything really.

My mother lives in rented council accommodation. She only has a few thousand in savings.
 

Chrissie48

Registered User
Nov 22, 2021
14
0
Any time I mention a 'holiday' or that I am not coping my mother either gets very upset or angry with me (sometimes both) . She has her dog who she would be completely lost without. I really wish someone else would take over to take matters out of my hands. I am willing to fight her corner and be her daughter but I am not sure I can be the one who puts her in a care home, particularly as there won't be much choice with her savings being low and her having to be funded.
 

canary

Registered User
Feb 25, 2014
18,501
0
South coast
Wandering and getting lost is a huge red flag.
You cant prevent it from happening and the only way to manage this is a secure care home. It sounds to me as though the SW is doing the "tick-box exercise" of trying carers first, but when you are dealing with wandering, having carers in is useless.

Keep a diary of the times when she goes walkabout, so you can show that carers are not sufficient and if you cant immediately locate her, Id call the police and tell them that a vulnerable person has gone missing. The police have to forward a report to SS every time they are called out about someone who is vulnerable. A few of those reports might make SS think again.
 

Chrissie48

Registered User
Nov 22, 2021
14
0
Thank you for your comments, I do appreciate them. I have been keeping a diary of 'events' since 1 January 2022- there have been 58 days where she has wandered or tried to go out/got lost so far. I agree that trying the carers first really isn't going to help with the wandering but a little bit of me hoped it might help a little and I also feel SS will want to try that before any other action is taken.

At the outset the police were called a few times to locate my mother and return her home but due to covid and me not wanting her to be left in a hospital or care home without being able to visit we have been locating her ourselves. Thankfully the night time wandering she started with has stopped for now since we gave her more routine to her day.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,213
0
High Peak
I'm not surprised you're living on a knife edge - this must be incredibly stressful.

Your mum needs to be in a care home but it's really not that simple if the council are funding. As you have seen, they are not exactly efficient in following through with agreed care plans. So much so that I think the two visits that were decided on would no longer be sufficient, even if they had got it organised. But SS will not move someone to a care home till they have reached the maximum of 4 carer visits per day and that has failed. So you're a long way from that unfortunately. Add in that your mum will object strongly (not least because of her dog) and then you'll have the SW saying she has capacity to decided where she lives.

So - how to force the situation? You mentioned that you wish it could be taken out of your hands so I suggest you work towards that. I'm afraid you are being far too efficient with the tracking and finding when your mum goes wandering! Whilst this is admirable, it's not helping your situation. You definitely need to call the police each time it happens. And report to SS adult safeguarding each time too. If necessary, tell them you are unable to help because you're away from home, have done your back in or whatever. The police have to report to SS anyway and will soon get fed up if your mum is a repeat offender... erm... I mean wanderer. They are likely to insist to SS that she moves into care or at least has more care.

Although the night wandering appears to have stopped for now, it will return. This behaviour often happens at the same time the person loses their sense of night and day. As SS will not put overnight carers in, if this continues to happen, they will move someone to a care home at this point as they have to accept the person is no longer safe.

So that is your route to a care home. Achieving it is - obviously - less simple...
 

jugglingmum

Registered User
Jan 5, 2014
6,310
0
Chester
Dementia only gives difficult choices, nothing is easy.

@Jaded'n'faded has written the gist of what I was going to write far more eloquently.

Unfortunately whilst you are tracking her and keeping her safe SS don't see an issue and will be slow to respond.

You need to call police each and every time she leaves the house and gets lost, and SS as well.

This is the only way to get SS to see that your point of view.
I can't just abandon her as she is my mum but we can't carry on as we are. We have not had any break from our caring responsibilities since she started wandering and it is affecting our health and wellbeing.
Getting your mum the help she needs isn't abandoning her but you do need to make sure those in authority see the issue. You have to work the system to get it to support your mum.

Continue tracking her but let the police try and find her first. They are used to this happening and will put pressure on SS.

You are no good to your mum if you break so you need to step back so that the risks are seen. Every time you rescue her SS consider there is no risk and you need to engineer it so they see the risk.
 

Chrissie48

Registered User
Nov 22, 2021
14
0
I'm not surprised you're living on a knife edge - this must be incredibly stressful.

Your mum needs to be in a care home but it's really not that simple if the council are funding. As you have seen, they are not exactly efficient in following through with agreed care plans. So much so that I think the two visits that were decided on would no longer be sufficient, even if they had got it organised. But SS will not move someone to a care home till they have reached the maximum of 4 carer visits per day and that has failed. So you're a long way from that unfortunately. Add in that your mum will object strongly (not least because of her dog) and then you'll have the SW saying she has capacity to decided where she lives.

So - how to force the situation? You mentioned that you wish it could be taken out of your hands so I suggest you work towards that. I'm afraid you are being far too efficient with the tracking and finding when your mum goes wandering! Whilst this is admirable, it's not helping your situation. You definitely need to call the police each time it happens. And report to SS adult safeguarding each time too. If necessary, tell them you are unable to help because you're away from home, have done your back in or whatever. The police have to report to SS anyway and will soon get fed up if your mum is a repeat offender... erm... I mean wanderer. They are likely to insist to SS that she moves into care or at least has more care.

Although the night wandering appears to have stopped for now, it will return. This behaviour often happens at the same time the person loses their sense of night and day. As SS will not put overnight carers in, if this continues to happen, they will move someone to a care home at this point as they have to accept the person is no longer safe.

So that is your route to a care home. Achieving it is - obviously - less simple...
Thank you so much for your message which is very helpful and is backing up what I thought we need to start to do i.e. leave it to the police to locate mum when she goes out. I know it is still going to be an uphill struggle getting any action with SS but if it is not just me saying there is a problem hopefully that will help move matters along eventually.
 

Mydarlingdaughter

Registered User
Oct 25, 2019
199
0
North East England UK
Speaking from experience the suggestions you have been given so far are good. SS have to be shown that you will not do it all. The more you do they more they expect you to do. Your Mum could outlive you and your husband at this rate.
When Mum goes wandering she is at risk so its appropriate to involve the police each time.
Your Mum getting angry and upset is normal because its her way of trying to retain control. Because she is your Mum its very hard to handle her opposition.
If you can, turn this into a job. Have a book where you keep notes. Have a list of helpful contacts. Have a time when you are not at that job. You decide. Say, 8 pm until 9AM? When not at that job, do not answer the phone to deal with Mum-related incidents. Being on call 24/7 is very stressful. I also suggest you speak to a person-centred counsellor to help you cope with what you are going through.
 

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