Sundowning can I ask gp to prescribe something?

[Mxflamingnoravera]

My mother has dementia and is in a residential home. She's been happy there for nearly two years. In the past few weeks she's taken to calling me 20-30 times an evening demanding that she go home. She has no other home now, she is a widow and we sold the home she lived in prior to going into care.

I allow myself to only answer one or sometimes two of her calls each day to save my sanity, but last night she left a message to say she is being kept prisoner and was very agitated. Im terrified that the home may say they cannot handle her any longer and wondered if the gp could prescribe diaezepam or similar to calm her down. She is 84 and in mid stage dementia, I can't see that worrying about addiction at this stage is worth it, she may have to stay on them for ever but if it makes her less anxious each night and allows her to settle and not upset her friends and the staff I'd be less anxious.
It starts each night after supper, around 7pm and I think it's "sundowning".

Anyone know how else to help her?

Visiting is limited and I have to have a test each time and frankly we never got on so I'm struggling. I've no siblings to share the load with either.

I'd have a chat with the care home. They must have extensive experience of this and could maybe suggest something helpful or maybe tell you how they approach it with residents.

I have talked to the home, they just say she's fine and not to worry, but I'm not fine, she's making my life hell and she's clearly very agitated.

I've had this very battle when they tried to take the person I am involved with off amitriptyline. Speak to the doctor, the side effects are outweighed in most cases with taking the stress away from the patient. Its horrible being afraid, diazapan will probably take the edge off. Agree with speaking to the care home staff

Make some notes this week and maybe a recording. It's easier to make a doctor listen when they have evidence.

Is she under the care of a mental health professional or psychiatric professional. My dad got haliperidol from a psychiatrist when he was distressed and attacking staff.

Does your mum have a mobile? Is that how she is calling? Is there any way this could be removed or disabled without distressing her more? My lovely dad died of dementia, so I know how tremendously difficult and heartbreaking it is. I have so much sympathy for you.

Mum has a mobile yes and staff are asked to remove from her after supper but she won't hand it over. I'm going to try the doc tomorrow, I have her voicemails that say she's a prisoner and I'll ask the care home for a meeting.

She was moved here just before lockdown so she hasn't got a psychiatrist here. I asked the doc fir help last week and he said he'd ask the dementia team to visit but I've heard nothing yet and in the day she is sweetness and light and could pass for being ok on a good day. But she's no short term memory and cannot look after herself. The doc not knowing her doesn't help I think.

Sorry, not just before lockdown, a year before- I'm losing track of time now!

Is it a residential or nursing home with registered nurses on duty. Either way she needs to be reviewed by her g.p or the dementia nurse, I doubt they will prescribe diazepam as it makes people drowsy and prone to falls, Risperidone did wonders for someone I knew. If her needs have changed the staff can arrange a review of her careplan.

It's residential, not a nursing home. The staff are generally not nursing staff. It is attached to a nursing home which will be the next destination as mum's dementia gets worse.

That's good that she wont have to move far if they feel she needs a higher level of care. The carers need to call her g.p or ask one of the nursing sisters to review her.

It's good you have the recorded calls as this will help your GP understand how agitated she is. It's not very good that the home seem to be either unaware of her distress or not taking it very seriously and trying to help reduce it. It would certainly be better for her to have some medication than to be so upset every evening but the GP or dementia nurse will know what is the best medication for her needs.

In fairness to the home, I don't think they know how often she is calling me or what she is saying. She presents to them as "well behaved" I think. She lies to me about where she is (eg she will say she's outside in the street when she is actually in her room). So they say "she's fine. She is her room etc, when she has called saying she is outside and they've told her she has to leave/can't leave etc. I tend to call when the night team are on duty because that's when mum calls, but they are less knowledgable about how she is because most of the time she is asleep.

Dr said a dementia specialist will see her next week (I thought they'd seen her last week) dr won't prescribe until advised by dementia person. That's fair enough.

The home suggest we remove the mobile phone and my aunt and I take it in turns to call mum each day (alternative days each) as the phone seems to contribute to the problem. Aunt says yes, I agree too, so I'll get the home to "send the phone for repair". Mum can still call but on a landline in the corridor rather than from her own mobile.

The home agree that mum's behaviour has changed recently. They also said mum would need to be a "lot worse" to consider asking me to move her. That was a relief.

My late Fil had a similar problem, he was fine in the morning but in the evening he would shout at people to get out of his house. Luckily this was solved by a change of medication and he never had to move from his residential home even when he became quite physically ill with leg problems, as a nurse would visit and they installed a hospital bed for him to prevent pressure sores when he had to stay in bed a lot. Hopefully this problem will now be sorted out soon once your mum sees the specialist.

The home are going to remove her phone today it is "broken" and I will call her every other day and my aunt on the other days on the landline for the home. The phone seems to be a big factor in her axiety. We are also filing for a DOLs order so that they can stop her from "walking with purpose" (used to be called wandering).

I was going to suggest removing the phone so that is a good decision. She will soon forget about it and you can enjoy peaceful evenings again! I do sympathise, when my DM was suffering from delirium and early Alzheimer's, I would sometimes get up to 40 calls per evening and overnight. I ended up blocking her number and switching off my answerphone each evening in the end as it was just so stressful.

Why are they applying for a DOLS for wandering? Is she safe to do so? as in on her feet mobility wise?

This is the issue when the have a mobile or access to a phone in their rooms.
Is she wandering within the home or actually walking out freely?

She can wander freely at the moment and threatens to leave and get a hotel if I wont have her here but she would be lost as soon as she walked out of the complex if she were to go out alone.

NB she entered the home of her own will when she had capacity, now as she is losing it she wants to go home because she is "exhausted from all the travelling they make me do" she told me last night that she is on a boat in Northern France on holiday.

Finally, mum has been prescribed memantine. If it doesn't work I may be forced to find a more specialist dementia care home. I hope it works.

Another update, the mental health team have now added lorezepam to mum's medication and the home are happy to administer this "when absoultely necessary" and have had to do this twice in the last fortnight.

She still packs her bags every day to go home and the poor staff have to put it all away again. I bought her a Joy for All robotic cat and gave it to her on Sunday, she was thrilled with it and she cuddled it all the time I was there.

I have got some counselling and my counsellor has told me I should reduce the number of times I visit as it is causing me to slip into depression. I feel guilty but am able to rationalise it and keep it at bay. I just wish she could have her wish which is to slip away peacefully in her sleep, it would be a blessed releif for her and my aunt and me.

How awful for you to be dealing with all this. Dementia really is a bastard. Both my grandmas had it. Really hope the medication helps your poor mum to settle in the evenings. As hard as it is, please don’t do more than you’re comfortable with and don’t feel any guilt for protecting yourself from the devastating effects of her illness. As distressing as it sounds for her in the moment, you’re the only one who will remember her distress.

I just wish she could have her wish which is to slip away peacefully in her sleep, it would be a blessed releif for her and my aunt and me.

@Mxflamingnoravera I'm in a similar position and totally understand you on this point. It's brutal and cruel and nobody should have end their life this way. It's just not fair.

I get a bit cross when cancer is talked about as the most dreaded illness. Many cancers can be treated, dementia cannot, it is just years of decline and terrifying loss of self for the sufferer. My mum knows something is not right but also thinks she is healthy and able to do anything she wants. She said she wants to go skiing and ride horses, she can barely walk and broke both her wrists last year, but she is unaware of how little she can manage now.

It is her birthday next week, I have bought her two large peice jigsaws with just 100 pieces, it is all I can think of to keep her occupied which seems to be the biggest problem for her, she was always so busy, now she sits most of the day, alone often, because she forgets her friend is just two doors down the corridor. The staff do what they can, but it is a battle that cannot be won.

When she dies there will be no "she lost the battle she so bravely fought against dementia" type epithets. It will be "at last she has peace".