Had enough today.

[jorgieporgie]

Well I thought I'd had a bad week with 79 yr old husband who is crazy most days now ,
Convinced that other people live in the house,keep taking his wine,glasses keys etc .
I feel I'm living in a parallel universe!
Woke at 2.0 am to find him emptying his wardrobe on to the bed ready for going home again!!
Finally at 7.0 am got him in car drove round village ,back home 5 mins later ,right as rain .how bizarre is this hideous disease ,how destructive to happy marriages.apparently I'm not his wife of 36 years ,just someone who's come to live with him .
Sadly I'm starting to feel my life is not worth living anymore,I'm only 62 but hate the violent arguments ,aggression,I'm tired and depressed,he's quite happy and thinks I'm the one with the problem,.
Sorry for the rant I'm pretty desperate .

I know exactly what you mean. I have been up since 4.00 Mum arguing in the mirror saying they are picking on her and ganging up. She as been beside her self sobbing
she is obviously distress. I nearly rang 111 but what would happen you get a doctor who doesn't know her and probably have her admited which would make it worst. I gave her two paracetomol and put her back to bed with heated blanket on, she seems to have settled and been asleep a couple of hours now. Let's see when she awakes. Life is hell some days I know but we must keep on going there will be peace one day.
If your Husband is aggressive I would ring your GP. there is only so much you can take.
keep posting and take care. xx

 

[MollyD]

Ah, jorgie, that's rough. The broken or no sleep is a killer. Don't know what to say, except that I hope you have an easier day than night. Your mum is blessed to have you. Must be terrifying if she feels her 'friends' in the looking glass are turning on her.

Have you had respite over the years? You so so need it. Knowing I've a lifeline to get away is literally keeping me on the right side of sane (just, only just ). It can be so isolating.

It's so insidious is how, without breaks, I slowly start to enter mum's demented reality. No matter how much I love the person she is/was, it's too easy to get stuck in the mire of dementia's quicksand. It is *not* a good thing. Clear boundaries are crucial. Great on paper. The only way I can really achieve this is by being away from mum and that simply isn't possible unless a break is in place where I'm able to physically remove myself for a decent period. It's mental, emotional and physical. Honestly, while I'm ok this morning (ha, watch this space...), I feel I could do with a month away before beginning to get some solid sense of self back. I can only imagine what you must need. Your situation with your mum is very, very challenging. Reading posts by other people too, I'm amazed at people's stamina. Makes me feel pretty inadequate. I know that's self-defeating to compare but it's hard not to sometimes. Anyhoo, keep hanging in in any way you can.

Hope today brings some peaceful times. And fun times. Keep us posted, jorgie.

 

[MollyD]

Hi wink,

God, my heart goes out to you. It's very rough. I agree that your GP needs to know about your husband's aggression. You're under an untenable amount of stress and pressure. Really hope you find support here, and very quickly from people who *should* be supporting you in your life, services, family etc.

 

[jorgieporgie]

Ah, jorgie, that's rough. The broken or no sleep is a killer. Don't know what to say, except that I hope you have an easier day than night. Your mum is blessed to have you. Must be terrifying if she feels her 'friends' in the looking glass are turning on her.

Have you had respite over the years? You so so need it. Knowing I've a lifeline to get away is literally keeping me on the right side of sane (just, only just ). It can be so isolating.

It's so insidious is how, without breaks, I slowly start to enter mum's demented reality. No matter how much I love the person she is/was, it's too easy to get stuck in the mire of dementia's quicksand. It is *not* a good thing. Clear boundaries are crucial. Great on paper. The only way I can really achieve this is by being away from mum and that simply isn't possible unless a break is in place where I'm able to physically remove myself for a decent period. It's mental, emotional and physical. Honestly, while I'm ok this morning (ha, watch this space...), I feel I could do with a month away before beginning to get some solid sense of self back. I can only imagine what you must need. Your situation with your mum is very, very challenging. Reading posts by other people too, I'm amazed at people's stamina. Makes me feel pretty inadequate. I know that's self-defeating to compare but it's hard not to sometimes. Anyhoo, keep hanging in in any way you can.

Hope today brings some peaceful times. And fun times. Keep us posted, jorgie.

Hi Molly,
No I have never had respite. After Mum got assessed she was not as bad and they decided not to give her any meds especially because she had just had a big heart blockage survived that and had a pace maker fitted. I was coping well then and decided not to have SS involved then. Since then everything as changed and Mum has got worse and SS have got involved now. They are trying to get her reassessed for meds as we speak. Our GP came out last week and rang SS and told them I needed respite. But because she is not stable on meds she can not go in respite or even day centre. So it continues until the appointment comes through. SS said to ring 999 if things get to bad and have her admitted to hospital, how on earth could I do that she wouldn't know what was happening and the hospitals can not cope with dementia patients.
I hope something is sorted out next week and her appointment comes in. Until then just carry on.
After this morning episode she slept for a couple of hours and ate a big breakfast. My daughter and grandsons have just come round and you would never believe that she is sat at the table with them all, my daughter brought her paints with her and she is painting pictures with them all. How lovely is that. We know it will only be short lived her been like this but at the moment she is happy. xx

 

[dottyd]

I take my hat off to all of you lovely carers who live with someone who has dementia.

I didn't and I still got very stressed. A two week holiday was a week to unwind, three days ok and then the rest building myself up for the homecoming and the stress piling on again.

There still isn't enough to help the carers and agree hospitals are the worst. Just so disorientating for them.

Thing is with dementia. You are continually fire fighting. You just get one problem sorted and they are off the next.

So sad for wink and husband. I was visiting mum the other day and there was a man chatting to his wife. She left and the sofa he was sat on was exactly opposite another one where there was a lady who looked a bit like his wife..ie had grey hair.
Each resident had a carer sat beside them. Suddenly the man started picking on the female resident.

Called her a gob****e. One of the carers said, this isn't Mary your wife, it's Elsie .

Elsie who seems to be such a sweet old soul, turned to the carer and said who told you you could say my name like that.

Had to laugh,...but sad very sad.

Wink you need to get some respite. It's just too much.

 

[dottyd]

Whoops...forgot which site I was on, some sites allow you to cuss and swear.

 

[jorgieporgie]

Had company all day which was nice and Mum was not to bad, been keeping her amused.
Everyone gone home now just Mum and I and I am dreading what the night brings. I am still tired from last night. I am debating if a UTI is prominent again. Always the case when it is a bank holiday. I will wait and see what tomorrow brings. xx

 

[MollyD]

Hope you get a good night's sleep. Or an adequate one anyway. We had family too which passed time nicely. Mum was in commode fixation today for much of the day in between tho', she has the steeliest bladder muscles with guests present. Funny that

Night x

 

[jorgieporgie]

You too Molly, I am going to bed soon just give Mum two paracetomol may settle her tonight. Saturday night and in bed for 8.30! Speak tomorrow Night Night xx

 

[Maisy76]

I wish I could draw I had a great image in my head of your cat looking very miffed.....

The cat crept out of the crypt, cra........ OK I'll stop. I just wanted to make you laugh - that's the best I can come up with.

Oh, I always thought it was the cat crept into the crypt.....

On a more serious note, bless you. Keep on posting, we're all here for you. With love xx

 

[jorgieporgie]

Morning all,
Finally had to ring emergency doctor this morning at 7am. Mum been up again from 3.30 really distress said someone was in her bed. Then tried to attack the hallway mirror, which I have taken down. Crying saying everyone in the mirror are after her, the air was blue what she was calling them and she has never sworn in her life. I have been suspecting UTI for the last two days. Decided with it been a bank hol couldn't let her be distress much longer. Emergency doctor has just been actually give her a good examination. No UTI visable but a bit of thrush in mouth. He said he believes it is her dementia getting worst, hopefully appointment for her review at the mental health clinic will finally put her on some meds for the hallucinations then I can get her in a day centre.
I don't think I can cope like this much longer without some respite. She actually calmed down when doctor came, always the case and as soon as he left started again. Now she has gone to sit at the table talking to whoever! See how day goes on really tired at the moment, hate bank holidays. x

 

[dottyd]

Omg....horrendous.

Yes when mum lived at home holidays and bank holidays were a nightmare.

Daycare ended about dec9. It made my blood boil. If someone needs daycare they need it on a regular basis and not stopping for a month. These facilities need to open 365 days of the year...like care homes and nursing homes.

Thank god care home staff don't down tools and walk out on December 9 !

We are so let down and loved ones at rock bottom have to pick up the slack.

I always feel if we don't fight now...there's going to be nothing left for us when it's our turn.

I'm sorry I can't help but I know your pain. It's not even nice enough to go for a run out.

 

[jorgieporgie]

Thanks Dotty d,
Just put Mum to bed with two paracetomol. It seems to calm her a bit, she is so tired.
I thought I might get a couple of hours with her, I feel tired but can not sleep. Tonight when I really will be tired Mum won't sleep. Anyway having a bit of peace now.xx

 

[MollyD]

Geez, jorgie. That's unsustainable and unfair and distressing for both of you. Mum was like that and the rest immediately after her hip op. In hindsight, thankfully, it happened that way as it seems getting someone to act quickly for you when at home is painfully slow. Mum has been on a variety of meds since then. Her night distress is negligible to what it was and what your mum is experiencing now.

It's too too much for both of you. I'm glad you phoned someone. Until somebody does something to ease the extemeness of your situation, in some way, please ring someone again and again. You can't go this alone.

Mum is pretty calm in between her outbursts. And while her confusion and 'need' for something now is wearing, I don't fear for her safety or welfare at present.

I do hope the SS organize things in such a way that you are at ease taking respite. You need it, jorgie. No question.

Hugs. Hope you are at least resting now if now napping.

 

[jorgieporgie]

No not napping Molly, just do not seem to be able to turn off. Mum just got up had a few hours so probably a bad night again. She is still confused but really got all the signs of UTI wished it had been that at least you know and could get anti-biotics. First thing Tuesday morning will be ringing SS and GP no doubt about it. Just need something to help her, was told to stop giving her Simvastatin immediately apparently can cause them to hallucinate. Was told that before from the pharmacist, told the GP and never listened.
Sometimes you just don't know if meds are doing more harm than good do you.
Anyway ready for next episode. xx

 

[Aisling]

No not napping Molly, just do not seem to be able to turn off. Mum just got up had a few hours so probably a bad night again. She is still confused but really got all the signs of UTI wished it had been that at least you know and could get anti-biotics. First thing Tuesday morning will be ringing SS and GP no doubt about it. Just need something to help her, was told to stop giving her Simvastatin immediately apparently can cause them to hallucinate. Was told that before from the pharmacist, told the GP and never listened.
Sometimes you just don't know if meds are doing more harm than good do you.
Anyway ready for next episode. xx

Can you get some respite? You can't go on like this.

Aisling xx

 

[jorgieporgie]

Hi Aisling,
Apparently not until she has had her review appointment for meds with CPN. SS have asked GP to send fax last week to Mental health team to make appointment urgent. She has been asleep this afternoon, got up for an hour not hungry and went back to bed. Can not make it out as no UTI present.
Anyway Aisling how 's things with you hope your ok xx

 

[Aisling]

Hi Aisling,
Apparently not until she has had her review appointment for meds with CPN. SS have asked GP to send fax last week to Mental health team to make appointment urgent. She has been asleep this afternoon, got up for an hour not hungry and went back to bed. Can not make it out as no UTI present.
Anyway Aisling how 's things with you hope your ok xx

It is a nightmare. oH goes through periods of huge anxiety, agitation, hallucinations, seeing and talking to invisible people. These episodes are worse if UTI present but happens on a daily basis without UTI. I think it is part of AD for some people.

I hope you get the appointment soon and get some respite.

Aisling xx

 

[LadyA]

It is a nightmare. oH goes through periods of huge anxiety, agitation, hallucinations, seeing and talking to invisible people. These episodes are worse if UTI present but happens on a daily basis without UTI. I think it is part of AD for some people.

I hope you get the appointment soon and get some respite.

Aisling xx

Hallucinations like that and worse were a constant for William until he was put on anti-psychotics. The poor man was living in a constant nightmare - and so were we.

 

[jorgieporgie]

Morning all, After the two days and nights of hell, Mum stayed in bed yesterday after the emergency doctor came, got up a couple of times then straight back to bed. She has been talking most of the night to whoever but not been agitated or going to the mirrors.
In fact I went to bed at 7.30 and that is where we both have stayed until now. Mum still in bed so obviously not well. It is awful but life is so much easier when she is ill and in bed. How selfish is that .of me!. Only one more day of the holidays and GP's back open tomorrow hopefully may get something sorted for the hallucinations.

Thanks Lady A for your post, did your husbands hallucination go after medication. That is the worst part of VD it gives them no peace. So So Cruel disease.xx