I am struggling to cope.

cumbria35

Registered User
Apr 24, 2017
89
0
Likewise. I seem to be upset with OH more when I've been around normal people and then come home to him, expecting him to be normal too. I call it "Re-entry." Re-entry into my new, lonely world that no one understands unless they are living it. My OH seems to be deteriorating quickly right now too. I believe they have a scale for Alzheimer's, but I would like to see one for Dementia. I'd like to explain that he is stage 2 and what can I expect in stage 3. Where's a scientist when you need one? I guess they're all too different depending on what part of the brain is affected. My husband's is in the front and the doctor used the term executive function frequently. I do notice that I'm mostly having small talk with him. And that, is exhausting.
Hang in there. You are not only helping out your loved ones, you are helping me. Thank you all.
Very difficult not having any conversation
I am struggling to cope with my husbands’ problems, how does everyone else do it.?
feel just like you tonight, bad day too as husband fell and has stitches In His face. I feel very isolated, not knowing what to do as he seems to be losing the use of his legs now, is this part of the process? He is 84 and having a bad night, I am 82. Where do we go to get advice as not heard from GP for a long time despite OH having pacemaker fitted 3 weeks ago followed by a problem. Bring back the old GP system.
 

Grahamstown

Registered User
Jan 12, 2018
1,746
0
84
East of England
@oscar333 I try to do the first thing when, for example, I have to admire the church steeple weathercock for the umpteenth time, but the second is more difficult because basically I have to remember everything but I shall give it a try.
 

APPLEANNIE

Registered User
Mar 20, 2016
19
0
I feel that I am losing it I was always very much in contol now the stress of living 24/7 with someone with Alzheimers i taking it s toll on me. I can not think straight as my Husband keeps on at me all the time. It is impossible to have a conversation as everything he talks about he can not get the word out and calls it a thing Every conversation becomes a puzzle to solve to know what he is talking about We are together 24/7 so there is no break except we go to a lunch club once a week. When we are at the Lunch Club he just sits there and does not join in. I can not leave him as he opens the door to anybody. I feel better now after having a rant
 

Mudgee Joy

Registered User
Dec 26, 2017
675
0
New South Wales Australia
Lots of good advice up there !!
It’s probably a stage but my OH is good with written notes - so each morning now I write a day note at breakfast time - the day of the week first - eg “Thursday” followed by a sort of timetable - he takes it with him and refers to it. Now we no longer have those “but you didn’t tell me” conversations !
I think it helps us both a lot!
(I too read the Contented Dementia ‘book)
Try not to let sadness or anger hang over to the next day!
Best wishes
 

Hazeybaby

Registered User
Apr 4, 2018
13
0
Hi
I found out about this forum in the Prima mag. My husband was diagnosed with Alzheimer’s last October, and at first it was mainly memory, keys, appointments etc, but now it stretches to anxiety, and almost hyperventilating when he loses something or is out of his comfort zone. He lost his HGV license which her finds hard, although he is retired he has no hobbies apart from walking our two dogs. I found a book called “contented Dementia” which was helpful. The main tip being, do not ask questions of them, as they find it hard because they cannot remember and get distressed. I do not know what stage happens next, and take it literally a day at a time.
Thank you for your views - I am now feeling that I am not on my own.
 

Hazeybaby

Registered User
Apr 4, 2018
13
0
Lots of good advice up there !!
It’s probably a stage but my OH is good with written notes - so each morning now I write a day note at breakfast time - the day of the week first - eg “Thursday” followed by a sort of timetable - he takes it with him and refers to it. Now we no longer have those “but you didn’t tell me” conversations !
I think it helps us both a lot!
(I too read the Contented Dementia ‘book)
Try not to let sadness or anger hang over to the next day!
Best wishes
I gave my husband his own calendar that he keeps by his chair and which he constantly looks at - it does help.
 

Hazeybaby

Registered User
Apr 4, 2018
13
0
I’ve been in this world for about 5 years - but only 2 yrs since diagnosis for my Mum. I’ve only just posted on TP
but have been reading it for ages - and it’s FABULOUS. My experience is that this forum teaches you stacks, I also read contented dementia, and I learnt 2 other things. 1) treat every moment/comment/ question as though it’s the first time it’s hapoened - be genuinely surprised/interested when you are In those torturous repeated moments with your pwd - it drives you mad - but makes your pwd happy and that is good for everyone. 2) I also pretend I’m as bad or forgetful as them and take the blame for everything - which my mum finds hilarious - because as she says ‘you’re all acting very strange - I think you’ve all gone mad’!! Finally - none of us do it - but you MUST find your own time and not loose yourself in dementia. We’re all here xxx
Thank you so much - very wise words - I am just starting out and thought I couldn’t cope.
 

Hazeybaby

Registered User
Apr 4, 2018
13
0
I feel that I am losing it I was always very much in contol now the stress of living 24/7 with someone with Alzheimers i taking it s toll on me. I can not think straight as my Husband keeps on at me all the time. It is impossible to have a conversation as everything he talks about he can not get the word out and calls it a thing Every conversation becomes a puzzle to solve to know what he is talking about We are together 24/7 so there is no break except we go to a lunch club once a week. When we are at the Lunch Club he just sits there and does not join in. I can not leave him as he opens the door to anybody. I feel better now after having a rant
I feel that way too, I do not feel like a wife anymore, just a carer
 

lambchop

Registered User
Nov 18, 2011
112
0
I feel that I am losing it I was always very much in contol now the stress of living 24/7 with someone with Alzheimers i taking it s toll on me. I can not think straight as my Husband keeps on at me all the time. It is impossible to have a conversation as everything he talks about he can not get the word out and calls it a thing Every conversation becomes a puzzle to solve to know what he is talking about We are together 24/7 so there is no break except we go to a lunch club once a week. When we are at the Lunch Club he just sits there and does not join in. I can not leave him as he opens the door to anybody. I feel better now after having a rant

Hi Apple and anyone else struggling,

It's very very very tough. I would suggest the following ideas for you and your husband (apologies if you have thought of them already), which I hope will help you to cope more.

Daycentre for OH
dementia cafe for OH
Sitters for OH if daycentre is a non-starter.
Asking family and friends to sit with your husband
Have a different door lock or alarm which reminds him to stay indoors
If your husband cannot think of, or articulate the words or , can he recognise pictures or write the words down?
Support group for you
Call the Alzheimers helpline - they can support, listen, and give you helpful suggestions, and give you information on the above options
Talk to Social Services about both your needs - ask for a carer's assessment

I would highly recommend getting support systems in place, as early as possible, so that you aren't caught out in an emergency, to support you, and, very importantly, to get your husband used to others. I would also recommend learning as much as you can, if you don't already, about your husband's type of dementia. It could really help. As you can get frustrated, so can your husband and his condition is probably frightening for him as well.

So, support yourself as much as you can, so you can carry on supporting your husband for as long as you feel able to do so. But please ask for the help and good luck.
 

Violetrose

Registered User
Jul 18, 2017
69
0
Didsbury Manchester
@Violetrose the only way to get through this is to support and comfort each other. I handled the situation badly tonight because I had had a good evening with what seemed like normal conversation and now I realise how sick he really is and deteriorating fast. I treated him as if he was normal and he is not. He won’t remember and I realise now that I have to treat him as sick. I have become dictatorial because that seems to be the only way to function. He can do quite a lot still independently in the mornings especially if I direct him and so I shall carry on.
It is very hard accepting that your partner is just not able to process and understand things anymore. And it is frightening when you recognise that there is real and rapid deterioration. I love my husband and I am scared of his deteriorating condition, but shamefully, sometimes I long for rapid deterioration and an end to the awful process. I remember a few years ago someone telling me her neighbour's husband had Dementia and the neighbour had told her she wished her husband was dead. I dont think you should worry about being dictatorial. You need to be in charge and dictate what happens as your partner can't do it for himself. It probably does feel dictatorial, but you have no choice. If you don't direct and manage, I don't suppose anything would happen and chaos would reign. I hope you have had a better few days.
 

WA123

Registered User
Jan 20, 2018
85
0
Hi
I found out about this forum in the Prima mag. My husband was diagnosed with Alzheimer’s last October, and at first it was mainly memory, keys, appointments etc, but now it stretches to anxiety, and almost hyperventilating when he loses something or is out of his comfort zone. He lost his HGV license which her finds hard, although he is retired he has no hobbies apart from walking our two dogs. I found a book called “contented Dementia” which was helpful. The main tip being, do not ask questions of them, as they find it hard because they cannot remember and get distressed. I do not know what stage happens next, and take it literally a day at a time.

I too have read Contented Dementia and have also been on one of their courses to find out more. Have put some of the strategies in place and found life improved almost overnight. You're right about not asking questions and also realising that they cannot remember anything new. Once I got those two things in my head lots of other things clicked into place. The best thing I was told though (by my son) was not to beat myself up if I sometimes got it wrong. The days when I do get it right my husband is calm and relaxed which makes everything else easier. The other thing I did was buy a clock which shows the day, date and time so that he can now see what day it is without asking me. This has given him some of his independence back and made him feel less useless.
 

oscar333

Registered User
Mar 9, 2017
37
0
Hi Apple and anyone else struggling,

It's very very very tough. I would suggest the following ideas for you and your husband (apologies if you have thought of them already), which I hope will help you to cope more.

Daycentre for OH
dementia cafe for OH
Sitters for OH if daycentre is a non-starter.
Asking family and friends to sit with your husband
Have a different door lock or alarm which reminds him to stay indoors
If your husband cannot think of, or articulate the words or , can he recognise pictures or write the words down?
Support group for you
Call the Alzheimers helpline - they can support, listen, and give you helpful suggestions, and give you information on the above options
Talk to Social Services about both your needs - ask for a carer's assessment

I would highly recommend getting support systems in place, as early as possible, so that you aren't caught out in an emergency, to support you, and, very importantly, to get your husband used to others. I would also recommend learning as much as you can, if you don't already, about your husband's type of dementia. It could really help. As you can get frustrated, so can your husband and his condition is probably frightening for him as well.

So, support yourself as much as you can, so you can carry on supporting your husband for as long as you feel able to do so. But please ask for the help and good luck.

I agree with everything lamb chop says - all if it. I’ve been putting pressure on social service a lot lately but getting no-where. But today I made progress - because I broke and told them that it was now about me. I asked for a Carers assesment/booked a Doctors appt and said I was getting Ill. Tturns out the Carers assesment is the same as the pwd assesment - which is great because you just get to say exactly what YOU need - and that’s easier to describe than what you pwd needs. So you need time off, you need support, you need reassurance that your OH is safe while you get your time off and so on and so on. It worked for me today - don’t think I’ll get everything I asked for but it was certainly more constructive conversation and I had more clarity about my needs. Your needs being looked after really does help your pwd. Good luck xx
 

lambchop

Registered User
Nov 18, 2011
112
0
I agree with everything lamb chop says - all if it. I’ve been putting pressure on social service a lot lately but getting no-where. But today I made progress - because I broke and told them that it was now about me. I asked for a Carers assesment/booked a Doctors appt and said I was getting Ill. Tturns out the Carers assesment is the same as the pwd assesment - which is great because you just get to say exactly what YOU need - and that’s easier to describe than what you pwd needs. So you need time off, you need support, you need reassurance that your OH is safe while you get your time off and so on and so on. It worked for me today - don’t think I’ll get everything I asked for but it was certainly more constructive conversation and I had more clarity about my needs. Your needs being looked after really does help your pwd. Good luck xx
Massive well done to you Oscar - well done for your determination!