Hello there, so my Mum seems to now be “sundowning” and it is so upsetting. I just don’t know how to deal with this. Mum has had periods of paranoia and angry outbursts but I could always seem to snap her out of it apart from the one time she had a major break last year. Recently she has said she will call the police if I leave her alone in the evening (note, I have to work full time and also look after my partner with MH issues but am always home by 7.30pm at the very latest), refused food as she thinks I am poisoning her (although she let me make her some hot milk), and thinks I am stealing from her (I have no POA and no access or interest in her accounts unless expressly given to get her a top up for her cash box). I have changed her private care from once a week to help with shopping to twice a week in the evening to help with dinner and food prep for the next day but this does not start for another week or so even then, I do not think it is enough. I don’t have anyone to ask, the doctor is useless as is her social worker. She is not on any medication other than sleeping tablets and heart pills although I have begged the doctor to review as she is clearly in distress. I am trying to let it all go over my head as I know that conscious is clear but even so it is very, very stressful. My social worker (a different person to Mum’s) has put me on safeguarding alert as he has had to speak to Mum already. Do I make my social worker aware? Not even sure how safeguarding works? Can anyone help please?
My Mum was definitely affected by sundowning and used to get very agitated and anxious at this time of the day. I read up all I could about it and explained it to any of her carers who didn’t know about it and they were really kind. They used to find time to go and chat to her or put her music on for her as she wasn’t very keen on TV.
I’m late to this thread, but hope you see my reply.
The Alzheimer’s Society(AS) have a Factsheet on various behaviours, including sundowning, so that may be worth a read. I’ll put a link to it below and hope that clicking that will take you there.
On the safeguarding side, this can be useful as it should prompt help from Social Services. I had a safeguarding issue with my wife getting in to a car with a stranger and the safeguard got us needs assessments for us both and my wife was provided with a few hours in a Day Centre(DC) each week. The DC is useful as my wife gets some stimulation and her lunch, while I get a little break. Push your Social Worker about that.
If this was a sudden change that is often due to an infection like a UTI. Please contact the GP and have your mum checked as if the infection is cleared your mum may return to her previous state. Other things like dehydration, constipation or low sodium levels etc., can also have this effect so, again, the GP is a good call. Without treatment these things can just drag on and on.
Beyond that, depression and anxiety can be common bedfellows of dementia so that should also be discussed with the GP. My wife is medicated separately for these conditions, as well as her dementia.
There could be a lot going on and I wish you the strength you need as it’s tough going(I’ve got the T-shirt!)
That link didn’t work so I’ve tried one that might take you to the full list of useful AS publications
Hi @Flutterbee
Sundowning is a very difficult thing to cope with and my heart goes out to you. It’s more distressing for the family looking after the person with dementia, as they will quickly forget what it was they were paranoid and angry about, but you won’t of course.
Please take a look at this link, there is also a helpline:
www.alzheimers.org.uk are a good source of information and have a dementia care support line: 0333 150 3456
I’m not sure whether you refer to safeguarding in respect to your Mum or yourself, but yes, do make your own social worker aware of the situation.
You mention private care, have you had your Mum’s (and yours) needs assessed by your local authority? That might be worth looking into for extra help and support.
Take care, E.
Hi there, thank you for your reply. Since I last posted things have become quite bad. The police have been out twice (called by me) as Mum kept banging on my door with what I later found out were scissors and she also tried to break the upstairs window with scissors. Infections have been ruled out and CMHT have now said she has completely lost capacity and the social worker is sorting a solicitor re a deputyship but am worried about how Mum will deal with this plus this is all moving at a snails pace. I did something today I knew would be a bad idea. Mum wanted some expensive items from the pharmacy and told me to take her card so I did. How stupid was I??? Up until now, I have been paying for everything myself, all food, domestic, toiletries, pet expenses, so I thought “that would be a help”. Now I am a thief and she wants to change banks. Tried to discuss options like a carers card but Mum just does not understand. I wish Mum could have some other stimulation other than getting lost in her paranoia but she is completly housebound and refuses and offer of day centres, respite etc… Mum tried a new medication for depression but it left her so more confused that I found her calling the police at 2am. This is hopeless. I just want to run away and leave this all behind. Sorry for the ramble. I don’t even know if you or anyone will read this but am in such despair right now…
Ring Social Services tomorrow, explain what is happening, and insist that they find some emergency respite.
With regard to mum’s money, you need to apply to be her DWP Appointee. It’s quick and easy unless you have been in trouble with the law! You open a new bank account, in YOUR name, and all mum’s benefits are then paid into that.
Is she getting Attendance Allowance?
Claiming exemption from Council Tax due to “Severe Mental Impairment”? This can be backdated, someone has had over £8,000 refunded!
Hey there, you are a beacon in this dark, lonely place! Thank you! Will call them but they are beyond uselss. My social worker seems ok but Mum’s is a total nightmare. Mum is getting attendance allowance paid straight to her account. I didn’t know about being a DWP Appointee. Doesn’t she need to sign off on it though as have not even had a meeting with the solicitor about deputyship. She already thinks I’m stealing although she says she trusts me… think I’m more confused that she is! It’s tough as I live with her too so really don’t need the tension. We have the Council Tax exemption but thank you for mentioning it. I had to find that out on Google as Mum’s social worker never mentioned it. Thank you again
You should not have to buy anything at all for mum with your own money!
Maybe point that out to mum, but it probably won’t sink in, because by definition, dementia means the brain isn’t working properly.
If it wasn’t for you, mum would probably already be in residential care, costing at least £500 a week, so you are saving mum heaps of money!
Does mum own or rent her home?
Google DWP Appointee and I’m sure you’ll find what you need.
There’s a form to complete, say that mum is very confused, and give examples.
You don’t have to have Power of Attorney for this.
The Appointee is then responsible for all the benefits, you need a new, separate account in your name for all the benefits to be paid into, and are responsible for ensuring that they are all spent on mum and her care.
I am Appointee for my son who was brain damaged at birth, and was also for mum in law when she had dementia.
I honestly don’t mind buying things for Mum with my own money, it was just one time as she wanted expensive things. I have looked the the DWP info. Seems straight forward, thank you. Have another issue now, I came home at 7pm today as had stuff to sort and Mum is having an episode saying she wants to sell the house and throw me out. She owns her own home, has been deemed as having lost capacity but not even had a meeting with the solicitor that social services are sorting yet for deputyship. Can she do this? Do I just ignore this? Dealing with my partner threatened with homelessness right now so this is the last thing I need. I really need help, please…
If she has been deemed not to have capacity, then no, she should not be able to do this.
Can you explain why Social Services are sorting out a solicitor and deputyship?
You don’t need SSD involved at all, don’t let them have deputyship and control over mum’s affairs.
You can be deputy.
They are involved as they were there with the CMHT nurse and doctor when they have their assessment. They are sorting as Mum has extreme paranoia that everyone is after her money so think a third party would be the best option. I feel really scared living with Mum now. She has thrown my food away an tried to break my door down this evening. All because I came home at 7pm and not straight from work. Scared to even go to the bathroom.
Absolutely not acceptable. Did you manage to record any of it on your phone?
If you are so frightened of her, as I would be, it’s time to call the Police again I’m afraid.
No I didn’t get a chance to record this time as it was short bursts so not quick enough to record. If she starts again then I will, but as of right now she has gone to bed. I have dared to put the washing on (no choice - literally running out of things) and am hoping she doesn’t hear it. Reason being she said “it’s my fridge so throwing all your things out” and she did. They are all in the bin. So worried that “it’s her washing machine”. This is my only place of solace although I have made my neighbours aware of the situation