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What can I do

Mammajan

Registered User
Sep 11, 2018
46
can anyone give me advice on what to do with my oh. He doesn’t read any more, it was his great passion, doesn’t like his iPad patience,puzzle books or colouring books, he doesn’t talk to anyone that visits unless it’s family and then it’s just “how are the little ones” over and over again. The little ones are all in their teens and older!
He only seems interested in sleeping or looking out of the window. Moaning about this or that. He doesn’t talk much, no conversation any more. He doesn’t understand what’s on tv, I, if I ask him if it was any good he doesn’t know what he has watched.
He doesn’t walk very well and neither do I, so we don’t go out. It seems we just sit here and slowly die.
 

Wifenotcarer

Registered User
Mar 11, 2018
275
Central Scotland
Has he had an Assessment by Social Work? Are you in touch with any Carers support? Someone with more practical advice will be along soon but from my viewpoint I would suggest that you look for some support for yourself and perhaps some daycare for OH which would allow you to get out and about, meet friends, etc. Otherwise you will just go down with him.
 

maryjoan

Registered User
Mar 25, 2017
1,399
South of the Border
can anyone give me advice on what to do with my oh. He doesn’t read any more, it was his great passion, doesn’t like his iPad patience,puzzle books or colouring books, he doesn’t talk to anyone that visits unless it’s family and then it’s just “how are the little ones” over and over again. The little ones are all in their teens and older!
He only seems interested in sleeping or looking out of the window. Moaning about this or that. He doesn’t talk much, no conversation any more. He doesn’t understand what’s on tv, I, if I ask him if it was any good he doesn’t know what he has watched.
He doesn’t walk very well and neither do I, so we don’t go out. It seems we just sit here and slowly die.
I know exactly how you feel - and so do many of us. It's the lack of conversation that 'gets' me. Do as Wifenotcarer says and contact Social Services for assessments. There is something called Direct Payments which we now get - it is a sum of money that is paid to an account you can access and you can pay for certain things with it - like someone to sit with him while you get out. Or like we do, pay a Personal Assistant to take you out for the day in their car - you don't have to walk, you could just got for a ride where there is some nice scenery, have a meal etc. It takes a bit of imagination sometimes - it's taken me almost 18 months to realise that I have to get out and about with him or without him - but you have to do it for your own sake.

Get the assessments, make sure you are also getting Attendance Allowance etc, every little helps to make life easier.
 

karaokePete

Registered User
Jul 23, 2017
5,248
N Ireland
Don't underestimate the impact that depression can have in people with dementia. It may be worth having a chat with the GP. To give you some info on this issue it would be worth a read of the Factsheet that can be found with this link https://www.alzheimers.org.uk/media/931

It may be worth checking for support services in your area and you can do a post code check for what's available by following this link https://www.alzheimers.org.uk/find-support-near-you
 

Mammajan

Registered User
Sep 11, 2018
46
I know exactly how you feel - and so do many of us. It's the lack of conversation that 'gets' me. Do as Wifenotcarer says and contact Social Services for assessments. There is something called Direct Payments which we now get - it is a sum of money that is paid to an account you can access and you can pay for certain things with it - like someone to sit with him while you get out. Or like we do, pay a Personal Assistant to take you out for the day in their car - you don't have to walk, you could just got for a ride where there is some nice scenery, have a meal etc. It takes a bit of imagination sometimes - it's taken me almost 18 months to realise that I have to get out and about with him or without him - but you have to do it for your own sake.

Get the assessments, make sure you are also getting Attendance Allowance etc, every little helps to make life easier.
Waiting for an assessment, they say 10-12 weeks. It’s sich a job getting him a car
I know exactly how you feel - and so do many of us. It's the lack of conversation that 'gets' me. Do as Wifenotcarer says and contact Social Services for assessments. There is something called Direct Payments which we now get - it is a sum of money that is paid to an account you can access and you can pay for certain things with it - like someone to sit with him while you get out. Or like we do, pay a Personal Assistant to take you out for the day in their car - you don't have to walk, you could just got for a ride where there is some nice scenery, have a meal etc. It takes a bit of imagination sometimes - it's taken me almost 18 months to realise that I have to get out and about with him or without him - but you have to do it for your own sake.

Get the assessments, make sure you are also getting Attendance Allowance etc, every little helps to make life easier.
Waiting for an assessment, they say10-12 weeks. It’s such a job getting him into a car, he moans so much too.
I get some attendance money but they reckon I don’t need it at night. They are not there are they to see me changing the bed or cleaning the mess up in the bathroom at 3am.
 

KV63

Registered User
Aug 28, 2018
11
can anyone give me advice on what to do with my oh. He doesn’t read any more, it was his great passion, doesn’t like his iPad patience,puzzle books or colouring books, he doesn’t talk to anyone that visits unless it’s family and then it’s just “how are the little ones” over and over again. The little ones are all in their teens and older!
He only seems interested in sleeping or looking out of the window. Moaning about this or that. He doesn’t talk much, no conversation any more. He doesn’t understand what’s on tv, I, if I ask him if it was any good he doesn’t know what he has watched.
He doesn’t walk very well and neither do I, so we don’t go out. It seems we just sit here and slowly die.
 

KV63

Registered User
Aug 28, 2018
11
I am sorry to hear how low you feel. We have TV on 24/7 and my oh sleeps through most programmes but wont allow it to be turned off. Like you my oh always had his head in a book & I've tried some "talking books"(ie cd's) which held his interest for a while - might be worth a try.
It is hard but you are not alone xxx
 

canary

Registered User
Feb 25, 2014
11,594
South coast
I get some attendance money but they reckon I don’t need it at night. They are not there are they to see me changing the bed or cleaning the mess up in the bathroom at 3am.
He should definitely get the higher rate AA. Re-apply and perhaps get Age UK or Citizens Advice to give you a hand in filling it in.

OH tends to sit all day in the conservatory. I have put a bird feeder outside where he can see it and he enjoys watching the birds coming down to feed. He used to know what all the birds were, but now he cant remember, but he still likes watching them.
 

Mammajan

Registered User
Sep 11, 2018
46
He should definitely get the higher rate AA. Re-apply and perhaps get Age UK or Citizens Advice to give you a hand in filling it in.

OH tends to sit all day in the conservatory. I have put a bird feeder outside where he can see it and he enjoys watching the birds coming down to feed. He used to know what all the birds were, but now he cant remember, but he still likes watching them.
Thanks, I’ll try the bird watching. Perhaps if I leave a bird book there he might look at it.
 

lilperson

Registered User
Jan 11, 2015
10
Taunton
Oh Mammajan I so empathise with how you feel especially the "sitting there slowly waiting to die" bit. I've realised that I no longer have any interests outside the home and not a great deal inside if Im honest, am finding that one of the many problems with this illness ...and whatever the NHS may think it is an illness...is that it drags the carer (s) down also.
 

Mammajan

Registered User
Sep 11, 2018
46
Oh Mammajan I so empathise with how you feel especially the "sitting there slowly waiting to die" bit. I've realised that I no longer have any interests outside the home and not a great deal inside if Im honest, am finding that one of the many problems with this illness ...and whatever the NHS may think it is an illness...is that it drags the carer (s) down also.

I so agree. So many people on here seem to be so positive, it makes me feel so inadequate. I just stumble along with the days problems. Saying that, today hasn’t been too bad. No chat, or interest in anything. ,but no mess to clean up and no “episodes”. The real problem is that none of us are trained for this are we.
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
@Mammajan, I don't think I said hello and welcome to Talking Point. I am sorry you have needed to find us but hope you find it helpful.

No matter how positive you think others may sound, we have all had our moments, I assure you. There is nothing easy about dementia and caring for someone with dementia and we all know that too well. Please don't feel it's a comparison or that anyone is judging you. TP is the best place I know to safely say, whatever you need to. I know that I generally feel that all I can manage to do, is to stumble along with the day and its problems, as you say. I am not a hands on carer, nor do I care for a spouse, and do not know how anyone who does either or both manages, as I would be worse than rubbish at it, I assure you! (I can barely deal with OH when he has a cold or the flu. True story!)

You are so right that none of us are trained at, or expect, this. It is such a problem, or at least it was, for me.

I don't know if it would be helpful for you, but I have attended some support groups, lectures, workshops, and so on through my local Alzheimer's Association and found them all helpful, more than I expected, to be honest. I believe there are also some online courses and the like, about dementia and for carers. Sometimes it's helpful to be in a room with other people who understand. Sometimes I can't sleep and need to vent at 3 am, which is when I really value TP!

I hope you will feel welcome here, and best wishes to you and your OH.