Alzheimer's, panic attacks, next steps?

[bringincrazyback]

Just wondering if anyone has experience of this and can tell me what my next steps should be. I can barely think straight and am so worried after trying in vain to calm my mum at bedtime this evening when she had a horrendous panic attack.

She has Alzheimer's which I fear may be worsening quite rapidly, lives with me and DH and we have carers a few mornings a week. We're planning to increase that to more mornings and add in evening visits as well, but I'm not even sure if that's going to be enough given what's been happening lately.

My mum needs help getting up in the morning, but is mostly fine in the daytime albeit very set in her ways. She's developed what I think is OCD and gets agitated by change, and has now started having anxiety/panic attacks some evenings which are triggered by the thought of bedtime. I'd noticed she seemed disorientated on the way to bed, Friday night it came out that she somehow seems to lose her mental map of the house in the evening (I should say the ground floor as all her rooms are there), to the point where she sometimes 'can't remember what's outside' the living room in the evenings. (She's completely clear on the layout during the daytime so I'd never suspected anything like this.) I've started accompanying her to bed, but even this now seems to be triggering anxiety.

For the last couple of days she's seemed completely herself in the daytime, but the fear in the evenings seems to be increasing and nothing I say or do seems to help, in fact for some reason the fact that I am helping her go to bed seems to be making matters worse. This evening was the worst yet, she seemed terrified, hands shaking like a leaf, didn't know why she was scared, OCD in overdrive, needed help undressing which she doesn't normally, couldn't articulate what was scaring her. She's normally fine once she's reached her bedroom but tonight was different and it was terrible seeing her so upset and scared and being unable to help.

Things seems to have been going downhill so much over the past week that I can't help feeling that besides a care needs assessment she needs some kind of urgent medical assessment as well. In the past GPs have been a bit 'she's got dementia, what do you expect us to do about it?', though, plus my mum will seem fine in the daytime and they'll probably think I'm just fussing, when earlier this evening I was actually starting to wonder if she was going to end up needing hospitalising, the panic was that out of control.

What really isn't helping is that everyone medical who comes out to see my mum seems to be under the impression I've got it all under control and everything's tickety fucking boo, when the reality is I'm at breaking point, exhausted and unwell (I have chronic health issues - my mum is safe in my care, but I'm absorbing so much strain that I'm scared for my own health). She's terrified of going into a care home and I've promised her I'll do everything I can not to let that happen, but it's starting to feel like it will be inevitable at some stage. I work 4 days a week (wfh, but even so), have no training in dementia care and am completely out of my depth since the panic attacks started. I've been caring for my parents to some extent for the past eight years (my dad passed in 2019) and I haven't begrudged them the help for a moment, but I'm on my knees and just don't know how much longer I can do this.

Sorry this is so long but I guess I just felt I needed to get it out. Any advice re possible next steps would be much appreciated, I'm so worried I can't think straight any more. Thanks for reading.

It know as sundowning.

https://www.alzheimers.org.uk/about-dementia/stages-and-symptoms/dementia-symptoms/sundowning

i do sympathise I have worked with dementia patients and my brother in law has a Alzheimers / dementia and it’s so disturbing to see a loved one distressed.
You can also phone and talk to someone at the Alzheimers society on how best to deal/ distract a love one who is unable to rationalise what is happening .
its so confusing for all concerned and no one plan fits all.
is there any local dementia cafes near to you? These are usually voluntary run charities to help carers and to met others who are going through the same situation.
imim not of what I have mentioned makes sense ? Just to say it’s is the hardest of times for you and keep asking for help.
I wish you well and sending you a hug .

So sorry this is happening. The end of the day is difficult for my parent with dementia also, although not panic attacks. Is your Mum on any meds that could be reviewed? That might be a reason to make an appointment, anyway.
It sounds like you both need some care 💐

What @Messycoo said. I’d contact the GP and ask for a review because of a sudden onset of sun downing, and ask for a referral to the Older Adults Mental Health Team, who I hope will help you. And also see your GP for you and say that you are close to burnout.

Im not going to say you should start looking at homes because it’s a decision everyone has to come to in their own time. All I’d say is that making sure someone is well cared for doesn’t have to equal doing all of it yourself. It’s not nice that my mum is in a home, but I also know she is well looked after and I am at peace with it. I know too many full time carers who end up having strokes, heart attacks and dying much too young.

Thanks so much for the replies, this is helpful. Going to be monitoring her today and hopefully getting her seen by GP. I had been wondering about sundowning, but wasn't sure if it would produce such severe symptoms. Hopefully today will shed some light.

@bringincrazyback panic attacks are generally related to anxiety, is your Mum medicated, at all?

Certainly be assertive with her GP, I do sadly think that "some" have the attitude to elderly care which is somewhat dismissive

My Mum had similar and was prescribed anti depressants which helped.

I have no advice but wanted to send you a big hug. 8 years is a heavy load to bear, it's all very well oldies saying they don't want to go into care but sometimes it is the safest thing for everyone concerned. My dad started having falls regularly it was very distressing for everyone.

You have my sympathy OP, My mums sun downing causes extreme anxiety and usually starts around 3.30 pm , it is incredibly difficult to deal with and has been on overdrive recently. Some things we have done that may be helpful to you-

We put pictures/names of what the room was on the outside of the door - mum stopped being able to remember where the toilet was in the evening, if the door as shut it was like the logic to open it and look vanished.

We have a tick list we go through at night time - its a wipeable one that keeps her to a routine.

We don't dull the lights or put on lamps or anything else that casts shadows as the daytime light changes as this made it worse.

Mum is now in a nursing home as she was simply unsafe at home - we also have the added problem of end stage emphysema to add in and her oxygen levels make her anxiety worse, which in turn makes her brain go worse with lack of oxygen so are stuck on this hellish roundabout.
It was a heart breaking choice to make, but as long as she is safe we need to do what is best for everyone, and i know mum wouldn't want me to sacrifice my own health and my family's life to keep her at home longer than what is safe.

I would also say to contact the Admiral Nurses, they are wonderful and have pulled me back from the brink a few times, and seem very good at realizing it is not all just about the person with dementia, this is a illness that will creep and take over your whole family x

MIL went into care and we got our lives back. Your mum wouldn’t want you ‘on your knees’ with all this indefinitely surely?! It’s not what I’d expect of my DC.
The wants of someone at the end of life don’t trump those of others in the prime of theirs.

I had some success for a while with reducing anxiety with social stories - so kind of a very simple cartoon strip describing all the steps that were going to happen before a transition, like going to bed for example. I had a few of these laminated for mealtimes, doctor visits, bedtime, and got the relevant one out and gave it to my uncle about an hour before the transition started. His carers and the family just kept then referring back to it, pointing to each step we were in the transition process. It seemed to help for a little while, until there was further deterioriation and he no longer understood the pictures

Thanks all, am reading/appreciating the replies. Bit frazzled today but will reply when (if?) I can find a moment of sanity... 😄

It totally makes sense, and thank you. I do think it might help to reach out to Alzheimer's UK. I've been on a bit of a hamster wheel for a while now, of scrambling all the time to get everything done, but once the current crisis is a bit more under control I do need to do some reflecting and try and get some information about this.

My mum's doing OK so far today and actually seemed pretty well earlier, just need to see how she gets on tonight... #nervous

I think we do. wry smile She is on memantine but possibly needs a higher dose or a different med, I'm not sure. She definitely needs a review either way.

Yep. I'm definitely going to need more support in some form or other. Unfortunately we're having a lot of problems atm with the care company chopping and changing carers/sending carers that aren't suited to working with dementia patients which is really adding to the stress, I think I'm going to have to look elsewhere. Thanks for the tip re the Older Adults Mental Health Team, I'll give it a try.

Sadly I think it was always the blueprint. There was always a narrative from both my parents that my mum was 'delicate', my dad worshipped her and literally waited on her hand and foot, and when his health started to fail I was expected to take up the reins. When they moved in with me and DH I was made a firm promise that the intention wasn't for all the care to fall on my shoulders further down the line, but in hindsight I know I was naive taking that promise at face value.

If I sound resentful I don't mean to, and my mum always says she doesn't want to be a burden, but sadly she's spent her entire life willingly depending on others for absolutely everything, so that even before the Alzheimer's she wasn't really capable of fending for herself - a sort of institutionalised helplessness, it's hard to explain. Although I know she loves me, she loves herself more - I know that sounds horrible, but it's true.

OP my MIL was exactly as you described, when her husband died we discovered how much she relied upon him for her every need. She moved in with my then husband and I and we cared for her as much as we could, until we couldn't any longer. Frist we increased the carers coming in, then eventually she had to go into a home. Each stage was met with what you're experiencing - the carers were generally crap but we did have a solid one towards the end who was absolutely amazing. It's just the luck of the draw.

I didn't look after myself (or my marriage) during this time. If I could go back, I would carve out a little me time. It isn't selfish to do this either. You need this regularly to recharge. Something that is just for you. Promise me you'll do that.

Sorry to hear you've been through this too! It really is hard when a person as abdicated responsibility for looking after themselves. Thanks for posting, and I promise. 🙂I have managed (just about) to keep up a hobby which is great for de-stressing and allows me to see my friends, so that helps a lot and we've a holiday booked soon so I'm hoping we will get to do that. Will have to play it by ear, of course (both in terms of my mum's health and whether the care company gets its act together), but it's very much needed!