What the hell just happened?

[Lladro]

We have had some really dark days over the last couple of years, but the last few days my wife has been really easy going, very confused most of the time, but quite ready to accept help and decisions . Until about 5pm this afternoon when someone flicked the Evil Woman from Hell button. Apparently I am not fit to be called a human being, I steal her food, I am a child born out of wedlock, I need to get out of "her" house, I keep her locked up and generally I am the most despicable person in the world. This means that I am fair game to be shouted at, physically hit and confronted with a kitchen knife.

Not knowing what the hell to do, I managed to escape for 20 minutes and ended up calling the Dementia Help-line, speaking to an Admiral Nurse who advised that I should either call the police or call 111 to have a doctor attend and sedate my wife for the good of the both of us.

I chose the latter option and good as gold the doctor arrived. My wife presented as a slightly confused, but throughly lovely level-headed individual, telling the doctor how I was such a horrible person who wanted her committed to some institution. The doctor checked her over and then asked me to have a urine sample from my wife dropped down to the surgery in the morning, where he would leave a prescription for some sedating drug, so that I could use it if this happened again.

After the doctor had gone, my wife had no recollection of what had happened during the previous six hours and was distraught, apologising to me for anything she had done. At this stage I was (and still am) so shellshocked , that I couldn't bring myself to comfort her. She has now gone to bed and is sleeping - The daily endurance course without training that has become my life, continues tomorrow when she wakes...

End of rant...until the next time...

 

[Cat27]

How upsetting for you @Lladro.
UTIs can cause havoc with a PWD.
Please don’t be afraid to dial 999 if need to help to stay safe.

 

[Grannie G]

Hello @Lladro

I was threatened with a knife when my husband mistook me for an intruder. Apparently this increase in confusion was caused by poorly managed diabetes.

At the time of the incident I was forced out of our home and locked out. It was a traumatic experience and thank goodness never repeated.

It is my biggest regret that my husband was admitted to an assessment unit which was the worst experience of his life. I agreed because I was so frightened of him , his physical strength during this psychotic episode was way above anything against which I would have been able to defend myself

I hope the cause of your wife's outburst can be identified so at least you may know what triggered it.

 

[DesperateofDevon]

My Mum has been doing the Jekyll & Hyde routine for years with me. It’s scary & leaves you emotionally scarred. Only in recent years have others ( family, neighbours & close friends ) experienced it

In hospital they put it down to delusions & UTI’s - but as the GP won’t put Mum on a prophylactic course we can’t get a true reading of her mental state

Don’t have any answers - small consultation that you aren’t alone in this experience.

 

[Bunpoots]

What a frightening experience for you @Lladro . I hope it was just a one-off. But maybe it's time to hide the sharp knives.

 

[Grannie G]

What a frightening experience for you @Lladro . But maybe it's time to hide the sharp knives.

This is what amazed me.

When this incident happened my husband had to open every drawer and cupboard in the kitchen just to find a cup.
In this psychotic mode he went straight to the cutlery drawer to get a knife.

What caused the change? Who knows!

 

[LynneMcV]

My heart goes out to you @Lladro, these sudden changes can come so unexpectedly.

My husband also went through these bouts. Fortunately the episodes were not the overriding factor throughout his six year battle though - and most of the time it was some underlying infection to blame (though at certain points it was down to the progression of the dementia itself).

For the most part we were able to manage with a daily antibiotic and occasional assessments to change or tweak other medications he was on.

It was a frightening experience when these bouts of rage and paranoia erupted though - and so hard for me to witness in a man who really was the gentlest and most loving of people.

I also had to hide the knives away - and I still feel the gut wrenching feeling I had when I found myself fitting bolts to my son and daughter's bedroom doors so that we would have safe places to go should one of these episodes arise out of nowhere. Never had I envisaged even having to contemplate such a thing until dementia entered the picture.

As I say, it was not the overriding story of how the disease affected us - we had many, many happy days, but it is still a horrible experience if it happens, no matter how infrequently

I hope that in your wife's case the right medication will be found to help her situation going forward so that you can both find quality and happiness.

 

[Lladro]

Thank you to all of you kind folks who replied to my post. That episode was Thursday evening. Friday afternoon, took her to the Zoo because she loves the monkeys, had fish and chips and ice cream - good day and evening - although a little confused, but manageable .
Saturday evening we went out, all ok, came back about 9pm - All of a sudden "Evil Woman from Hell" switch flicked, calling me names and coming at me with carving fork (hidden all of the knives). Called 111, kept telling me to call the Police, I did not want to go that route. Eventually kindness itself arrives in the form of a Nurse on call. This lady stays with us for three hours, manages to persuade my wife to take a sedative and even puts her to bed. Its now 4am ish and I have cried (been wanting to do that for ages). Tomorrow (actually today) dawns - I won't sleep now. Not sure what's going to happen now. No idea what's going to happen at all. Have to keep going - I will not let this bloody hateful thing destroy my life.

 

[Cat27]

I’m so sorry it’s happened again @Lladro.
Please call 999 next so you get help quickly & you will both be safe.

 

[Izzy]

I'm sorry things are so bad @Lladro. I agree with Cat. Please keep yourself safe and contact the police.

It might help to discuss it all with someone from the helpline. They're open today from 10-4.

https://www.alzheimers.org.uk/get-support/national-dementia-helpline

 

[Grannie G]

Good morning @Lladro. I hope you managed some sleep last night.

Thank goodness the nurse witnessed your wife's episode. She may put in a report and get some help for you.

It might be appropriate for your wife to be admitted for assessment so her behaviour can be observed 24/7.

I will not let this bloody hateful thing destroy my life.

I understand this Lladro but it might destroy your wife. She has no control over this behaviour and it must be as upsetting to be this way as it is upsetting to see.

I know it was a bad time for my husband but at least the doctors knew how he was 24/7 and were able to medicate him so he could continue to stay at home with me.

I'm really sorry you are going through this. I can picture it in my mind and it really isn't a nice place to be.

 

[LynneMcV]

@Lladro I am so sorry to hear this has happened again.

In my previous post I mentioned that sometimes it was an infection and sometimes it was the progression of the disease which led to these bouts of aggression and paranoia in my husband. When it was the latter, the way forward was for him to go somewhere for a proper re-assessment of his medication.

Like you, I fought against phoning 999 - I had some misperception that it would involve blue lights, sirens, raised voices and be generally terrifying for my husband.

This couldn't have been further from the truth. On the first occasion my husband had attacked our son (he had attacked me a few times prior to this but it was the attack on another that made me see sense). I had already been consulting the doctors for a couple of weeks as this paranoia gradually increased, and no respite was coming through the treatment of possible infections - and the sedative he was given as a final resort actually had the opposite effect and tipped him over the edge.

When I phoned 999 I made it clear that my husband had dementia and that this was a crisis he was going through, putting both him and us in danger.

They sent both police and ambulance. The police arrived first (quietly, with no drama) and they couldn't have been more lovely and understanding of my husband's needs. They played a huge role in calming my husband with gentle persuasion and kindness. When the ambulance arrived my husband was calm enough to go willingly to hospital with them (and me).

The upshot was that he was admitted to an NHS secure unit for treatment. I won't lie, it was a miserable time, particularly as it was not dementia specific and there were people there with a wide range of mental health issues and volatile behaviours.

He was there for two months while they stripped back his medication and started again from scratch. I was also allowed to visit him for many hours every day - and this helped me build up his trust and acceptance again

The final upshot was that he eventually reached a point where he was able to return home and enjoy a lovely family life again

The other bonus was that we were put on the Memory Clinic's crisis intervention register and were regularly monitored through 6 monthly reviews - but we could contact them at any time inbetween if necessary. It became so much easier to get medical help as soon as I flagged up any concerns in my husband's behaviour. It wasn't always perfect, but so much better than the situation before we had been flagged up for the extra help.

So yes, it many ways the period in the secure unit was a horrible time - but it gave us back the man we knew and loved for a few more years.

My experience is not unique, I have read many accounts on these forums about how kind and considerate the police and ambulance service were when dealing with these crisis situations. They seem to be well trained for dealing with dementia these days.

The main thing is to make sure you are both safe and 999 was certainly the right choice in the end for us and many others.

 

[Bunpoots]

I’m sorry this seems to be an ongoing problem @Lladro.

It must be frightening for your wife too and now you’re facing the horrible situation of living in anxiety that it’ll happen again. If, as happened to my friends parents, your wife makes a successful attack on you and you are unable to get help what would happen then? Please get help while you still can and call 999 next time.

It might be best to sleep in a separate, locked, room until this crisis is over.

 

[Lladro]

Thank you all for your kind replies and advice. My wife is sedated again this evening and we have an appointment for review this coming week. Perhaps the one good thing that has come out of this situation is that I have cried and sobbed like a baby , which was something that I have been unable to do previously. It was a pressure relief and I am not ashamed to say so. All I hope for is that my wife can feel happy and safe, but selfishly I so desperately want my soul-mate back too.
Thank you again

 

[Roseleigh]

Hi, Though not as extreme as your wife my husband too has started to have periods of agitation when he is also rude paranoid verbally aggresive paces and shows physical frustration - hitting the air. Distraction doesnt work, sometimes reasoning quietly does, if I can make him listen which isnt easy. Its usually in the evening, just when one needs a break. Tonight I made a threat, which seems to have worked , he'd been pacing about saying 'What about M?' (Our DGD), over and over, I told him she was fine and in bed at home. Finally at the end of my tether I managed to get him to listen and said walking about and talking must stop or M wont be able to come to our house if he keeps this up. He seemed to understand and said hed stop. All quiet for now. A big part of the problem is he no longer reads and can follow few TV programs such as those he enjoyed until recently, murder detectives, some comedy and all sport. His big love football is the only sport he still enjoys. This leads to boredom I think. Its probably the start of the worst stage. I've escaped to the study for a break.

 

[Lladro]

Hi, Though not as extreme as your wife my husband too has started to have periods of agitation when he is also rude paranoid verbally aggresive paces and shows physical frustration - hitting the air. Distraction doesnt work, sometimes reasoning quietly does, if I can make him listen which isnt easy. Its usually in the evening, just when one needs a break. Tonight I made a threat, which seems to have worked , he'd been pacing about saying 'What about M?' (Our DGD), over and over, I told him she was fine and in bed at home. Finally at the end of my tether I managed to get him to listen and said walking about and talking must stop or M wont be able to come to our house if he keeps this up. He seemed to understand and said hed stop. All quiet for now. A big part of the problem is he no longer reads and can follow few TV programs such as those he enjoyed until recently, murder detectives, some comedy and all sport. His big love football is the only sport he still enjoys. This leads to boredom I think. Its probably the start of the worst stage. I've escaped to the study for a break.

Hi, yes distraction is tricky at times and for me it only seems to work for a short period, but it does work when my wife is agitated on a lesser level, although when she is "having a go" at me, it never does. Sometimes in a vain attempt I will try to call her bluff and say "I'm going right now, you can get some other mug to do everything for you", putting my shoes and coat on. She sometimes starts to get really upset that she doesn't want to be left alone, but then after a few minutes she will go back to being hostile.

Evening times seem to be the most common time, when the "sundowning factor" kicks in - This is a massively common phenomenon , a fact that I only discovered after visiting this Carers forum. Unfortunately, as you say, this is the time when you have had a belly full of it and you just want to be able to sit down and chill - but you are not allowed to and have to up your game even !

Boredom is a big problem for people with Alzheimers I think and it is exhausting for the Carer having to arrange activities all of the time, but that's the way it seems to be. My wife cannot hold her attention span onto any of the activities that she used to enjoy. To not even have the simple pleasure of being able to read a book or follow a TV drama, must be devastating for them. it is so sad that they miss out on all of the simple things that we enjoy (if we have the time now!).

Little escapes to the study, or the laptop are heaven are they not?

Typing to strangers who you recognise as having similar difficulties to yourself, seems to help in a weird way - Good to talk, albeit with a keyboard - Thank you and all of my best wishes to you.

 

[Roseleigh]

"Evening times seem to be the most common time, when the "sundowning factor" kicks in - This is a massively common phenomenon"
Indeed. DH had been quite agitated earlier evening, not angry but simply pacing and repeating himself, son had come up for lunch and brought GF who we'd not met before - way too much excitement, but fortunately the promise of Match of the day later, along with a herbal tea and biscuit brought calm by 9pm, so I was able to enjoy Below the Surface - double epi - on the other telly!

 

[Rosserk]

Hi, yes distraction is tricky at times and for me it only seems to work for a short period, but it does work when my wife is agitated on a lesser level, although when she is "having a go" at me, it never does. Sometimes in a vain attempt I will try to call her bluff and say "I'm going right now, you can get some other mug to do everything for you", putting my shoes and coat on. She sometimes starts to get really upset that she doesn't want to be left alone, but then after a few minutes she will go back to being hostile.

Evening times seem to be the most common time, when the "sundowning factor" kicks in - This is a massively common phenomenon , a fact that I only discovered after visiting this Carers forum. Unfortunately, as you say, this is the time when you have had a belly full of it and you just want to be able to sit down and chill - but you are not allowed to and have to up your game even !

Boredom is a big problem for people with Alzheimers I think and it is exhausting for the Carer having to arrange activities all of the time, but that's the way it seems to be. My wife cannot hold her attention span onto any of the activities that she used to enjoy. To not even have the simple pleasure of being able to read a book or follow a TV drama, must be devastating for them. it is so sad that they miss out on all of the simple things that we enjoy (if we have the time now!).

Little escapes to the study, or the laptop are heaven are they not?

Typing to strangers who you recognise as having similar difficulties to yourself, seems to help in a weird way - Good to talk, albeit with a keyboard - Thank you and all of my best wishes to you.

Hi my mother who lives with us is exactly the same as you describe. Evenings are usually the worst! I literally can’t stand the way she behaves I find it extremely difficult to cope with and will do anything to avoid being anywhere near her. I’m lucky enough to live in a large house and she spends most of her time in her room constantly taking things out of her wardrobes and drawers and hiding them! She then claims either I have taken them or tells me there were strangers in her room who stole them. I feel physically and mentally drained and just wish it would end. I know that sounds selfish but neither of us has any quality of life. Not everyone is cut out to be a carer. I feel so guilty saying that but it’s the truth.

My heart goes out to you and I know exactly how hard it is for you. X