Like a Hyperactive toddler...

Kjn

Registered User
Jul 27, 2013
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Hi RA
I'm still following you;) and want to firstly send you a big ((((hug)))) for what you are dealing with yourself and also to pray that Rob settles in his new place and the carers soon understand how to help him and yourself with his care. Xxxx k
 

nae sporran

Registered User
Oct 29, 2014
9,213
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Bristol
Sorry to hear about your double difficulties Anne. Hope you have some support from family. Best wishes and strength to you.
 

Sam Luvit

Registered User
Oct 19, 2016
6,083
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East Sussex
Hi RA

Please lean on your lovely sister in law & smile about the cat. ;)

Know you are not alone & there is an army out here cheering you on & holding you close :eek:
 

Rageddy Anne

Registered User
Feb 21, 2013
5,984
0
Cotswolds
THANKYOU, all of you.....
My beautiful sister in law has promised to come with me to my next hospital appointment. She has to drive a long way to do that, but she wants to do it. There are some angels out there...

I think Rob hasn't even realised he's in a different place. This state of Alzheimers is a sort of blessing in a way, after all his anxiety. I don't know if it's been achieved with careful tweaking of drugs, or is simply a feature of advanced dementia.

We know we're losing him, but I don't think he realises any more that he's losing us....
 

Ann Mac

Registered User
Oct 17, 2013
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Like Amy, I'm just back from holiday, so am only just catching up with your news Anne - I am so, so sorry that you are having such an horrendous time at the moment, sweetheart :( And so glad that your lovely sister in law is being there for you. Please, please follow the medical advice, continue to let your sister in law help, and know that all of us are thinking of you and sending much love, healing thoughts and many positive vibes in your direction xxxxxx
 

margherita

Registered User
May 30, 2017
3,280
0
Italy, Milan and Acqui Terme
THANKYOU, all of you.....
My beautiful sister in law has promised to come with me to my next hospital appointment. She has to drive a long way to do that, but she wants to do it. There are some angels out there...

I think Rob hasn't even realised he's in a different place. This state of Alzheimers is a sort of blessing in a way, after all his anxiety. I don't know if it's been achieved with careful tweaking of drugs, or is simply a feature of advanced dementia.

We know we're losing him, but I don't think he realises any more that he's losing us....

Anne, glad you are not alone!
Sorry if I asked an inopportune question. I'm new to the forum and I did not remember you have a beautiful sister-in-law.
A big hug !!
 

Rageddy Anne

Registered User
Feb 21, 2013
5,984
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Cotswolds
She is quite wonderful. And yesterday I saw my GP, whom I haven't seen much before, but she wants to stay abreast ( pardon the pun!) of what's happening to me, and was very encouraging...

I hope the macabre sense of humour that's a feature of this family stays with me throughout! It helps...:D
 

ChristinaG

Registered User
Feb 21, 2017
92
0
Lack of sleep avd hyperactive

I'm sorry to hear about the lack of sleep. I looked after my mum for over 3 years in her own home and her inability to sleep broke me as I really need sleep myself. She could do nothing for herself but that wasn't the problem. I asked the Dr for sleeping pills for her but that didnt go down well. I feel I had no choice but to put her in a residential Home. She has been there for nearly two years and is very unhappy. Staff have to cope with her wandering around at night and often wimpering and whining for attention like a child. Recently she had unexplained bruising on her face. One or two of the other residents have a go at her (verbally only I hope) as they want to watch TV and she is making a noise. More often than not she becomes up set with me or is distressed. She was prescribed anti depressants by the community mental health team and these were increased but they don't make any difference. They have finally agreed to come and review as the Home chased this up.

I wonder why some people with dementia can't sleep. I know she doesn't differentiate between night avd day and does cat nap. I reluctantly came to the conclusion that I couldn't be deprived of sleep continually while she roamed the house yelling help and tried to open the front door. It's not a good situation now as I dread going to the Home - i always find a problem and surprisingly there are times when there is no staff supervision which is apparently acceptable. It's not like being in her own home where I could be in control of her care. Because of the sleep problems she would need waking care 24x7 at a cost of around £2000 a week plus the running costs of the house and that is not sustainable. The cost now is just over £1000 per week.

I am sorry I can't offer any solution. I think it's great that the alzheimers society are seeking funding for research but I do think there needs to be more help to improve the quality of life for those suffering with dementia in the here and now.
 

Rageddy Anne

Registered User
Feb 21, 2013
5,984
0
Cotswolds
Hi RA
I'm still following you;) and want to firstly send you a big ((((hug)))) for what you are dealing with yourself and also to pray that Rob settles in his new place and the carers soon understand how to help him and yourself with his care. Xxxx k

Thank you Kjn. Rob has had a couple of falls in his new care home; no harm done and I think he's simply at that stage where falls will happen. They are now sitting him in a wheelchair to move from place to place, and he doesn't complain.

Yesterday his friend, the young man whose help enabled me to keep Rob at home for longer, was visiting him at the care home. We had a cup of coffee together, and for the first time in ages I felt Rob was at peace with the world. He smiled and ate his watermelon, the carers were lovely, some jolly songs were playing quietly, and two kittens played happily. Fingers crossed, he is now in the best place, not perfect, no care home can be, but pretty good...
 
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Rageddy Anne

Registered User
Feb 21, 2013
5,984
0
Cotswolds
I'm sorry to hear about the lack of sleep. I looked after my mum for over 3 years in her own home and her inability to sleep broke me as I really need sleep myself. She could do nothing for herself but that wasn't the problem. I asked the Dr for sleeping pills for her but that didnt go down well. I feel I had no choice but to put her in a residential Home. She has been there for nearly two years and is very unhappy. Staff have to cope with her wandering around at night and often wimpering and whining for attention like a child. Recently she had unexplained bruising on her face. One or two of the other residents have a go at her (verbally only I hope) as they want to watch TV and she is making a noise. More often than not she becomes up set with me or is distressed. She was prescribed anti depressants by the community mental health team and these were increased but they don't make any difference. They have finally agreed to come and review as the Home chased this up.

I wonder why some people with dementia can't sleep. I know she doesn't differentiate between night avd day and does cat nap. I reluctantly came to the conclusion that I couldn't be deprived of sleep continually while she roamed the house yelling help and tried to open the front door. It's not a good situation now as I dread going to the Home - i always find a problem and surprisingly there are times when there is no staff supervision which is apparently acceptable. It's not like being in her own home where I could be in control of her care. Because of the sleep problems she would need waking care 24x7 at a cost of around £2000 a week plus the running costs of the house and that is not sustainable. The cost now is just over £1000 per week.

I am sorry I can't offer any solution. I think it's great that the alzheimers society are seeking funding for research but I do think there needs to be more help to improve the quality of life for those suffering with dementia in the here and now.


It seems that currently they have to experiment with the various drugs they DO have to find a balance for the advancing disease...So it must require a constant series of adjustments, with GPs, nurses, and the carers all involved. And everyone's dementia is different, as everybody's character is different.....what a nightmare.

Prevention must be the answer, and perhaps that requires evolution! We are living longer, and dementia is sometimes the price we pay....
 

Hari AM

Registered User
Nov 25, 2016
20
0
Malaysia
My heart goes out to you. I thoroughly appreciate what you are going through. My dad, who lives with Alzheimers and Vascular Dementia was like that up until 6 months ago. Our neuropsychiatrist prescribed Quentiapine after trying other meds - and it has been effective. He goes to sleep now at 9:30 pm and wakes up at about 6pm. I used to be awakened every half an hour before Quentiapine. During the day, he is still rather hyperactive, but we have been able to distract him with colouring and drumming activities, plus spending time with him watching Nat Geo Wild and American Ninja Warriors. The actions in these shows tend to sustain his attention.

Hope that you will find that sleep you so deserve.
 

Rageddy Anne

Registered User
Feb 21, 2013
5,984
0
Cotswolds
Rob has been more peaceful lately, thank goodness. Probably a mixture of meds and the advance of his dementia....

He's in a reliable care home now, unlike the previous one that looked likely to close at short notice.
Which gives me some peace of mind to deal with the upcoming operation I'm supposed to be having....
 

Amethyst59

Registered User
Jul 3, 2017
5,776
0
Kent
Oh, Anne, I've just realised that this thread is yours....doh. I just assumed that you were in the same sort of situation as me...but you and Rob, are much further down the road...and now you are waiting for surgery. You poor love, life is not at all fair is it? Thank goodness for your sister in law, and the care home that you managed to find for Rob. Do you have a date for surgery yet?
 

Saffie

Registered User
Mar 26, 2011
22,513
0
Near Southampton
Like Amethyst, I have only just become aware that this thread is your's. I have seen it in scanning the site but it didn't register and I am always hesitant to intrude on an established thread in case it isn't always welcomed.
It was lovely to meet you in Bath and, although one can't say it was exactly restful - these city meetups never are! - it was certainly a pleasant change from day to day life, at least for me.
I hope you get a date for your operation soon and at least get it over with. It is never easy to have these things hanging over you, especially when life is challenging in other ways as well. x