Mentally and physically exhausted ...

Jo Sutton

Registered User
Jul 8, 2016
215
0
Surrey
I've just had the day from hell and I have to get it off my chest to someone who understands. I don't know anyone else who is coping with a PWD and you lovely people are the only ones I can turn to. Sorry if this is a rant ...

My husband was 'on duty' with Mum overnight and dealt with her every time she got up, bless him. I still woke ... I am attuned to the slightest noise from her ... but I didn't have to get up, although my sleep was very interrupted.

Hubby comes to bed somewhere between 4 and 6am, which is when Mum is usually quiet. This morning, she was up again at 6.30am and I was woken by the TV blaring away downstairs (she is pretty deaf and has it on full volume).

At 7am she started calling for me, and it was the usual sort of stuff ... she wanted to go home ... where was the little girl who lives with us? (no little girl) ... the men in the garden who were building a game for us were doing it wrong and please would I sort it out (another fantasy). It was more manic than usual and she called me every 10 to 15 minutes until 1.30pm when my husband got up.

I was exhausted by this time - you all know what it's like. The mental gymnastics of trying to work out what her fantasy is and then find something to say that will reassure her and calm her down, which she will then twist into another fantasy, etc. etc.

Anyway, hubby was up by now, so I went to bed and managed to get a couple of hours sleep. Then he came and got me because she was very agitated and he couldn't calm her down. This was when it got really bad.

Mum told me that my father (who died nearly 15 years ago) was mentally ill and trying to kill people, and she was terrified that,, if she told anyone, he would target them as well. He was also threatening 'the little girl who lives with us'. She was terrified, crying, paranoid that the slightest noise was him coming back to kill us all, and I couldn't calm her down. In the end, I had to say that I would call the police and have him taken to a secure mental hospital so that he couldn't hurt anyone.

More crying and paroxysms of guilt because she still loves him and he will hate her for doing this to him. I went away for 5 minutes to 'call the police', and then spent over an hour reassuring her that she had done the right thing, and that it was the best thing for him too. All in all, the whole incident took around three hours of intense emotional support and mental gymnastics on my part, not to mention that it tears me apart to see her so frightened and unhappy.

I just managed to get her to bed and I think she has gone to sleep. I'm am worn out, distressed, and I hate this bloody disease that does this to people. The only thing to be thankful for is that, at the moment, these paranoid incidents are fairly rare. So I should be able to recharge before the next one.

But there's no one to talk to, other than my husband who also has to deal with it, and I just need to know that someone understands.

Thanks for your time in reading this.

Hugs

Jo xx
 
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Izzy

Volunteer Moderator
Aug 31, 2003
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Dundee
Oh goodness. What an awful time you're all having. Is there any chance she could have a urine infection? I know my mum was always much worse when she had one. Sorry , not much help. I hope tonight is less frantic.


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Jo Sutton

Registered User
Jul 8, 2016
215
0
Surrey
Thanks Izzy.

It's not a UTI - Mum has had a whole load of them, so she is now on permanent antibiotics and oestrogen cream to stave them off. She has these episodes from time to time ... thankfully not that often at the moment, although I dread that they will get more frequent :(

Thanks for reading and responding. It really helps to know someone is listening ...

Hugs

Jo xx
 

Izzy

Volunteer Moderator
Aug 31, 2003
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Dundee
I had a feeling you would have ruled that out!


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MollyD

Registered User
Mar 27, 2016
1,696
0
Ireland
Jo, couldn't read and not reply.

What you are dealing with is so hard and so relentless.

I hope you get breathing space/recouping time in some relative shape or form very soon (and it is relative, I know).

Loads here will hear you and understand.

Sending virtual support. X




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Rosnpton

Registered User
Mar 19, 2017
394
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Northants
Hi jo
Sounds like you are having a really tough time at the moment
Hope she has settled for the night and you have a bit of a rest while you can
Ros
 

Jo Sutton

Registered User
Jul 8, 2016
215
0
Surrey
Thank you so much Molly and Rosnpton.

Mum is up and about again, complaining of people coming into her room or standing in the garden looking through the window at her. But that's the usual stuff and I can deal with that.

You are all lovely people, thank you all so much for reading and caring.

Hugs

Jo xx
 

CollegeGirl

Registered User
Jan 19, 2011
9,525
0
North East England
Some more hugs winging their way to you, what you're going through, the three of you, sounds absolutely awful. I hope you get some sleep and that tomorrow is better.

Can I just say, though, that my own mam is on permanent antibiotics to prevent UTIs, and yet she has just been diagnosed with one and been given stronger/more specific tablets. You know your mum best, of course, but thought I'd mention it just in case.

xx
 

rosy18

Registered User
Jul 23, 2016
1,281
0
Blackpool
Jo I hope tonight is calmer for you all. I can sympathise as my Mum for a period of time didn't want to be in our house at all as all the "bad people"that also lived there (there's only Mum and I)were going to murder us. It's such a horrendous time both for us and our loved ones and seeing them so distressed is really hard to deal with so I just wanted to send you a virtual ((hug)) I'm praying tonight you all get some rest xx
 

Jo Sutton

Registered User
Jul 8, 2016
215
0
Surrey
Thanks so much Rosy. You've no idea how much it helps to know that I'm not the only one going through this, although I wouldn't wish it on anybody.

Hugs

Jo xx
 

Jo Sutton

Registered User
Jul 8, 2016
215
0
Surrey
Thank you so much for caring, Smashy and Slugsta.

Yes, she has a couple of paracetomol and a codeine at bedtime, which seem to help her sleep. Although she has been chatting away (very loudly) in her sleep to someone for the last couple of hours. But that is fairly normal, and at least she is sleeping ...

The GP offered me antipyschotics, but I'm reluctant to medicate her even more when she is on so much already for long-term arthritis, UTIs and a whole load of other things. Does anyone have any experience of these? If it will calm her down and help her, then I'll consider it, but only if it's in her best interests, rather than my own.

I'm going to bed myself now. My husband will be 'on duty' until the early hours and hopefully I can sleep, although I always tell him to come and get me if there's anything he can't deal with. There are some things she won't say to him, that she will say to me ... such as the paranoia with Dad earlier. Hopefully that's over now, and it's just the 'usual' stuff.

You are all wonderful people. Not only those of you who have replied, but everyone reading as well. You all help me stay strong and deal with this thing. Thank you all so much!

Hugs

Jo xx
 
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Jo Sutton

Registered User
Jul 8, 2016
215
0
Surrey
Ooops, spoke too soon. Talk about tempting providence! Mum just got up and started getting dressed, so I went downstairs and headed her off at the pass LOL.

She needed the loo, though, so I took the opportunity to get her to give me a urine sample and tested it. All totally normal, so it's not a UTI. Don't know whether I'm glad about that or not ... :(

Thanks again, everyone, for all your support.

Hugs

Jo xx
 

Jo Sutton

Registered User
Jul 8, 2016
215
0
Surrey
Wow, Smashy, that's a lot! Sounds like your mother has diabetes and cardio-vascular problems as well as the Alz. Poor you!

The anti-pyschotic there is QUETIAPINE - how apt! From what you said earlier, it does a lot of good? Does anyone else have a PWD on that, or any other anti-pyschotic for that matter? Are there any side-effects?

I really don't want to medicate Mum just to make my life easier. But if it means she isn't going to be so distressed, I wonder if it is worth discussing it with the GP. Any advice gladly received. I really don't want her to have to go through that again.

Although, having said that, she is now laughing, joking and has forgotten all about it, it seems ...

I also don't want to go down the CH route, yet. Apart from the odd blip, like today, we are coping ok. Tired, yes, but not to the point where we can't look after her and ourselves. She is still lucid about 30% of the time and I treasure that so much - having her here with us in her own home is so precious I don't want to let it go, although I know the time may come.

Wow. What a rollercoaster this disease is ...

Thanks, everyone, for all your support. It means a lot.

Hugs

Jo xx
 
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Jo Sutton

Registered User
Jul 8, 2016
215
0
Surrey
Thanks Smashy. Her dedicated GP - who is absolutely superb - is on holiday at the moment, but back next week, so I will call her to discuss.

I'd love to hear anyone else's experience of anti-psychotics. Which are the best ones? What are the side effects? Please share ...

2am, and, having finally gone to bed and relaxed, it all hit and I ended up sobbing to my husband. He is just great. I couldn't do this without him ... or all of you! Thank you all so much for your support.

Hugs

Jo xx
 

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
OH was on quetiapine after a bout of delusions/ hallucinations. I forget the dose, but it crept up to very high to be efficacious. Once he came back to roughly normal, he was weaned off and put on memantine. It was a really horrible time and is why I believe in using drugs as necessary. If a gp prescribes something I believe it ought to be taken unless some very good reasons can be found. Obviously a reaction to the drugs would be a bad reaction!
I couldn't have coped without something to bring him back to 'normal' and although it may be about the pwd, we are looking after them. What happens if the carer has problems? Don't tell me, I know, having had carers breakdown!
 

CollegeGirl

Registered User
Jan 19, 2011
9,525
0
North East England
My mam was on a small dose of risperidone, another antipsychotic that was administered via a liquid in a dropper. She was given this, eventually (my dad was extremely reluctant because of the increased risk of stroke), because she became extremely nasty, very agitated and then physically aggressive.

I don't live with her and can't remember whether she had any side effects, but she calmed right down, much less agitated and more compliant, which was good for us all.

At dad's instigation, the dose was gradually reduced until it was so minute (far less than the minimum recommended dose) that the doctor said it wouldn't be having any effect, and so she was taken off it altogether. I was a bit worried that she'd revert to being agitated and aggressive, but she didn't. Well, not in the same way as before. She still has times when she's agitated, and she sundowns, but it doesn't result in physical aggression any more.

Hope this helps.
 

Donsxx

Registered User
May 13, 2017
1
0
I cared for my nana then later my mother in law who had Alzheimer's. Luckily my mil got on the tablet that helps with its advance.
We had to lock the door so she couldn't get out which I were accused of being her captor. She wanted to go do tea for her brothers hadn't seen in years after fall out. Had to put stair gate at kitchen so she couldn't eat everything in sight. Was awful to do but necessary. Is yr mam on tablets for Alzheimer's?
We had regular respite where she'd go into nursing home for a week or two for us to recuperate she never wanted to go but were fine when did.
Eventually against our wishes social services put her into a home permanently as hard for her to manage stairs etc we said we would turn dining into bedroom but no :(
With my nana she would attack me again wanted to eat all time and accuse us of starving her not on meds both had regular utis'.
Can u not get respite set up? I hope you get more rest and some quality sleep. Xx


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Everton Annie

Registered User
Feb 25, 2015
111
0
Hatfield Hertfordshire
My husband had psychotic episodes in January and was prescribed .5mg risperidone and memantine alongside donepezil and 15mg mirtazipine. This combination plus outreach support saved him from being sectionec. Still on all meds and whilst delusional is not agitated or psychotic or distressed. Still a difficult journey as he is only 67 but so much better than he was. Good luck Jo I know that feeling of being emotionally and physically drained, had to have 2 weeks emergency respite in the end, couldn't have continued as we were. Have a peaceful day

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