Well he's been on Risperidone for almost 3 weeks now,finally this week he slept through for 4 nights,only 6 hours but still....😊Last night the nightmare was back,awake 3 times through the night,downstairs fullly dressed shouting upstairs where's the key,I'm going for a walk😩My 10 year old grandson was sleeping over,his mum was at work,he got woken up too😩His walking/pacing has been non stop all day long,finally went to bed at 9.30,all quiet till now,I'm off to bed cos full of a cold😩He's wide awake sat on the bed fully dressed saying he's not tired,omg here we go again😭On a lighter note,I've had the financial assessment I've been waiting 3 months for,we only have to pay £9 a day for his daycare,he only goes 1 day a week,this means I can afford more days,good for me and him,he loves going there😊Just hope I get a nights sleep now🙄
Finally help continued....
- Thread starter sunshine chrissy
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@sunshine chrissy Hopefully last night was a blip and you got better sleep tonight. Having to deal with dementia when you have a cold makes everything extra hard, as I have found this week.
Good news on the assessment for both of you but especially you.
Good news on the assessment for both of you but especially you.
@sunshine chrissy I really hope your night was better, it must be a nightmare for you. My husband started taking Risperidone 5 months ago, it took about 3 months for Risperidone to make a significant difference to him, he has gone from being very verbally and physically aggressive, to now being the most passive and calm he has ever been in his life!! Give it time - I really hope it works for you xx
Thank you,here's hoping,today has been the hardest in a long time,he was up at 4.30 am and a nightmare all day,pacing and walking back and to down the road,he's not sat still for more than 5 minutes,he went to bed at 9 but still shouting down,can't find my phone,not tired I'm going for a walk etc😩All day I've just wanted to lie down and rest for a while and now I'm sat crying thinking how much longer can I do this on my own😭x
And now I'm finally in bed after a long day,just heard him going downstairs so that'll be all the lights left on,back door wide open,dog running round in the garden,I can't just ignore it and go back to sleep😭
I may be speaking out of turn, @sunshine chrissy, but I do think that the time has come for your husband to go into residential care. I am deeply concerned about your health and wellbeing and feel that you can't live with your husband's extreme behaviour any longer. The medication isn't working well enough. The restlessness, agitation and poor sleeping are absolutely dreadful and almost constant.
Please go back and demand more help. Perhaps your husband needs to be sectioned in order to see whether some combination of medications can calm him down. Perhaps a therapeutic exercise regime (not facilitated by you) would help. Who knows.
I am appalled that you are expected to put up with this. No (paid) live-in carer would.
Please go back and demand more help. Perhaps your husband needs to be sectioned in order to see whether some combination of medications can calm him down. Perhaps a therapeutic exercise regime (not facilitated by you) would help. Who knows.
I am appalled that you are expected to put up with this. No (paid) live-in carer would.
Well the mental health nurse phoned today,she calls every 2 weeks,told her everything,she's going to ask the consultant to up his dose,even she can't believe he's still pacing all day and hardly sleeping.He's had blood and urine checks,no infection which can cause the agitation.It's a case of trial and error now with medication,this is the 6th different med he's been on in 6 months,nothings working,all I can hope for is getting daycare for 3 days a week,he goes for 1 day now,it's not enough,I'm going under day by day😩
Has respite or permanent care been mentioned? Or sectioning? Days go past and there's talk of this and that but does she realise that each day is an absolute trial for you?
Why is care outside the home not being considered now? Nothing is working to quell your husband's extreme behaviours.
I wonder whether you're too accommodating and reasonable, waiting patiently for things to be done. If you said that you're leaving home in a week's time because you can't cope any more I think that your husband would be taken into some sort of care or sectioned.
Why is care outside the home not being considered now? Nothing is working to quell your husband's extreme behaviours.
I wonder whether you're too accommodating and reasonable, waiting patiently for things to be done. If you said that you're leaving home in a week's time because you can't cope any more I think that your husband would be taken into some sort of care or sectioned.
I do agree with @Violet Jane, you can't go on like this @sunshine chrissy. You have no quality of life, you are sleep deprived, this will make you ill if you don't get the help you so desperately need. You need to shout to your doctor, SS and tell them that you can no longer cope - in my experience it is the only thing that works. Have you been offered respite? You sound like you are already at carer breakdown - gettin helo is not giving up, it is getting the help that is essential.
Somethings got to change and soon!! Even the carer that brought him back from daycare said to me"I don't know how you do this everyday,you need to get him in respite to give yourself a break" I can't believe how quickly it's come to this,I just keep hoping the constant change in meds will work this time but it never does😩I'm lucky that he's a quiet calm man,I could cope better if he'd just be still for a few hours,he was up twice in the night last night,up again at 6am,walking back and to all day long and he's still awake now,shouting down what time is it,can't find my phone etc.Time to admit it's too much isn't it?
Sadly, I think you may be right
I have been following your story and hoping that something would help him, but it doesnt seem to have done so
I've been thinking about this all day! The last 6 months have been"Ill give it 2 weeks on these new meds and see if things improve".Here we are and things are no different,he's on Risperidone now,the consultant upped the dose yesterday so "I'll give it another 2 weeks"🙄This time it's changed,I'm not coping well so no more waiting 2 weeks,I'm getting weaker in body but stronger in mind if you get me!! I never imagined I'd get to the point where he needs more help than I can give him,it breaks my heart and he doesn't even know or can even understand how I feel,this FTD he's got has broken me,it's just evil😭
Im sorry to say, that this is the most common outcome. The number of people with dementia who are able to be looked after at home right up to the end are few and far between. Usually, they get to a stage where they need a whole team of people looking after them.
When I wondered whether I would be able to look after my mum with her being in my home it was the way that she was up all night that broke me. The only reason that I am able to continue looking after OH at home is because he sleeps at night. I do feel for you, what you are going through is unsustainable. The first step is acknowledging this.
I am so sorry, this sounds horrendous and I'm not surprised you are broken. My OH sleeps at night, If he reaches the point of not sleeping I know I would not be able cope. I don't know how you have managed for so long but you will be ill if you carry on like this.
I’m glad u have some more mental energy @sunshine chrissy
Would your supportive CPN be open to you discussing some respite with her? That’s not a permanent not looking after your husband, it’s just having a few days off….
Would your supportive CPN be open to you discussing some respite with her? That’s not a permanent not looking after your husband, it’s just having a few days off….
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