Care home time

[Losingthewill2live]

My mum is not coping by herself, even in a sheltered flat within a complex. Her needs aren’t unusual physically (arthritis etc) but her biggest issue by far is her mental state. It’s not dementia, it’s hallucinations, both auditory and visual. They’re distressing her, stopping her from going to bed etc. She never had any before until a few months ago and now she’s had several, the last one last night. They can last for many hours and are always at night.

All she wants is to be looked after, 24/7 but unfortunately that’s impossible for family to undertake. I’m exhausted already and feeling depressed having to drop everything (lots of very complex issues needing my attention in other areas of life) to basically just keep her company. I already stay overnight when I can, at least once a week and she’s always fine while I’m here. Then the day after I go home she’s phoning me, distressed and wanting me to come back.

Any advice would be most welcome. She says she would like to get into a care home where there would be staff at night.

Has she taked to her GP about the hallucinations? She should see if there is anything that can be done to stop them.

Yes, the cause needs to be found it could be something easily treatable. Or a side effect of medication.

Do get her checked for UTI as well. It might be making underlying issues worse and it’s not uncommon to have them without realising and then having hallucinations etc

I know she’s mentioned this happening but she minimises it and describes it as ‘bad dreams’ so I don’t think the GP has the full picture. I’ve offered to speak to the GP.

I will get her to do another urine test. She’s not got any symptoms but you never know.

Bad dreams and hallucinations can both be signs of Lewy Body Dementia - please don’t don’t dismiss this as a possibility. I’m sorry, this is all so hard.

I will look into that, thank you

You can send a letter to the GP clearly stating that you are not asking for any medical information to be shared with you but you feel the GP should know the situation.
I've done this and the GP has been so good at asking the right searching questions.

Definitely make sure the GP has the full information, either by calling or writing.

Visual hallucinations can be a sign of an eye problem - the brain fills in the blank if it's not getting info from the eye - so an eye test might also be a good idea. Although as they are in combination with auditory ones I think it's more likely to be neurological - could be a stroke, some form of dementia, or various other things. Even if not treatable it's still useful to know the cause because it helps planning if you know the likelihood of it progressing or remaining stable.

Would she be self funding or LA? Either way it can take a while to get a place, so it's worth starting investigating options as soon as possible. A night sitter might also be short term option.

She needs to see her GP.

My Dad had similar (his grandmother calling him to get up for work in the middle of the night), and other things too, and he was assessed by the health care for the elderly team. His diagnosis is vascular dementia. But hes also had infections and other various illnesses.

Your Mum's situation will be different but it should be the first port of call.

But this does happen. My Dad's with us now and the amount of support he needs has only become obvious as we spend time together. So, it may well be the right time to start looking at places for her, whilst you have time on yoir side. If she ends up in hospital for some reason it will be more difficult to choose as she will need to be discharged there.

So do start looking.

I've started looking for dad should we not be able to cope and to make links. The first visit was awful - lovely staff, but premises just awful. I've not been to a second yet because of the effect on me. I must find the balls to.

Good luck. Its hard

You need to see the GP and get a referral to a memory team. There are medications that can be useful to make the hallucinations more manageable. I'd try that route alongside researching good care homes. Maybe worth balancing up the care home cost against having a night carer. I'm sorry this is very tough on everyone.

Good advice. Thank you.
Hope you find the right place for your dad soon xx

@NoBinturongsHereMate thank you so much. She wouldn’t be self funding and to be honest I’ve really not much of an idea how it all works. Will try to get advice from Age NI (we are in NI).

@DuckyShincracker & @OldJohn
very helpful. Thank you, I will get on to GP.

Certainly start with her GP. It helped make sense of what is going on with Dad. He's, strangely, actually on fewer medications now than he was but there have been lots of changes and tweaks. I think if someone has remained well and stable, they've probably not been fully medically assessed for years. That makes some sense, but I think the time comes when that's probably what's needed.

I hope we find somewhere to make links with but, in the meantime, he's fine with us and I guess we can look at getting carers in to help before the full care home.

I totally agree with letting her GP know what's going on. I've had to do this a few times as we have a few older relatives. I always email so there's proof that you're went it and proof they've received it.

I always make it super clear that I don't want any personal information from them, I am simply making them aware of the situation.

The last time I did this I also said that I was, like the DA and the GP was, wanting to avoid any unnecessary Hospital admissions. I don't know if the phrase did anything but they were in the phone to get the next day and she got assessed the following day after having been fobbed off for months.

That’s really helpful, thanks