My road diary

jay6

Registered User
Jun 25, 2023
1,075
0
Reading through the forum, I see many have started a diary which seems a good idea so thought I'd also do one, to see if it helps me and hopefully may help others on their journey to know they aren't alone.
Background
Bad stroke 9 years ago.
about 4 years ago my husband started getting very aggressive and abusive towards me in any argument or if I said something he didn't like. I spoke to the G.P. who said it was probably frustration from the stroke and put him on anti-depressants, which never helped.
He fell on a couple of occasions (due to balance from stroke) approx. 3 years ago, which resulted in Ambulance being called. On both occasions, the paramedics mentioned dementia, it was also mentioned by a nurse in hospital as a possibility so I contacted the G.P. who still insisted it was the result of a stroke (bad bleed)
Anyway finally, I saw a locum doctor who gave him a short test, which he failed. A blood test was done to rule out health problems, then covid hit! so nothing was done.
Anyway after battling again. (3 years later) he was finally referred to the dementia doctor in April this year, who confirmed he had early stages of dementia.
The scan used was 2-3 years old so not even a resent scan. So I'm not sure just how far he is down the line.
He had violent outbursts for about 2 1/2 years which luckily have now stopped but the abusive behaviour is out of control.
To be honest we have always argued as he is a controlling person. But after the stroke he lost a lot of the control which hit him hard.
Over the last 3-4 years, his motivation declined. Just sitting on the sofa watching T.V. more and more, So I'd try hard to get him interested in doing something to keep his mobility going and his mental health on track but it would end in really bad arguments, where he became very abusive and nasty towards me, It's like trading on egg shells, If I say something he doesn't like then I am 'Picking on him' 'telling him off' or 'having a go at him' and doing a really good 'poor me' act. The only time we get along is if he is getting 24/7 attention. Doesn't matter how I feel.
When he had the diagnosis in April, he didn't really believe the doctor but after a long chat, agreed to try and take an interest in the home/life etc. and we joined a couple of memory clubs and he started to do word search puzzle books, I'd bought 8 years previous for his stroke and go out for lunch, drives etc.
3 months later, I can't keep battling to get him motivated, if I don't suggest going out etc. or start a conversation, there is nothing.
He sits in the sofa all day either doing a word search (seems to be same page each day), watching T.V. or asleep. When I ask if he is happy doing this he always says no but makes no effort to change anything.
There is no relationship what so ever between us. I am just someone he sees as a carer, there to meet his needs.
He is chatty when at the memory groups and comes across as a nice person but is totally different with me. He often tells me, people think I'm argumentative or don't like me. Even says people know what he has to 'put up with' but when I ask who these people are he can't name anyone.
I think he may be 3-y years down the line rather than very early stages. Dreading what comes next!
 

Izzy

Volunteer Moderator
Aug 31, 2003
75,327
0
73
Dundee
It’s good to see your new thread @jay6. I know I found it really helpful to keep a long running thread whilst caring for my husband.

Sometimes it’s good just to get everything down on ‘paper’ as it were.
 

jay6

Registered User
Jun 25, 2023
1,075
0
It’s good to see your new thread @jay6. I know I found it really helpful to keep a long running thread whilst caring for my husband.

Sometimes it’s good just to get everything down on ‘paper’ as it were.
Thanks Izzy
 

bakinghappy

Registered User
Jun 28, 2023
16
0
Reading through the forum, I see many have started a diary which seems a good idea so thought I'd also do one, to see if it helps me and hopefully may help others on their journey to know they aren't alone.
Background
Bad stroke 9 years ago.
about 4 years ago my husband started getting very aggressive and abusive towards me in any argument or if I said something he didn't like. I spoke to the G.P. who said it was probably frustration from the stroke and put him on anti-depressants, which never helped.
He fell on a couple of occasions (due to balance from stroke) approx. 3 years ago, which resulted in Ambulance being called. On both occasions, the paramedics mentioned dementia, it was also mentioned by a nurse in hospital as a possibility so I contacted the G.P. who still insisted it was the result of a stroke (bad bleed)
Anyway finally, I saw a locum doctor who gave him a short test, which he failed. A blood test was done to rule out health problems, then covid hit! so nothing was done.
Anyway after battling again. (3 years later) he was finally referred to the dementia doctor in April this year, who confirmed he had early stages of dementia.
The scan used was 2-3 years old so not even a resent scan. So I'm not sure just how far he is down the line.
He had violent outbursts for about 2 1/2 years which luckily have now stopped but the abusive behaviour is out of control.
To be honest we have always argued as he is a controlling person. But after the stroke he lost a lot of the control which hit him hard.
Over the last 3-4 years, his motivation declined. Just sitting on the sofa watching T.V. more and more, So I'd try hard to get him interested in doing something to keep his mobility going and his mental health on track but it would end in really bad arguments, where he became very abusive and nasty towards me, It's like trading on egg shells, If I say something he doesn't like then I am 'Picking on him' 'telling him off' or 'having a go at him' and doing a really good 'poor me' act. The only time we get along is if he is getting 24/7 attention. Doesn't matter how I feel.
When he had the diagnosis in April, he didn't really believe the doctor but after a long chat, agreed to try and take an interest in the home/life etc. and we joined a couple of memory clubs and he started to do word search puzzle books, I'd bought 8 years previous for his stroke and go out for lunch, drives etc.
3 months later, I can't keep battling to get him motivated, if I don't suggest going out etc. or start a conversation, there is nothing.
He sits in the sofa all day either doing a word search (seems to be same page each day), watching T.V. or asleep. When I ask if he is happy doing this he always says no but makes no effort to change anything.
There is no relationship what so ever between us. I am just someone he sees as a carer, there to meet his needs.
He is chatty when at the memory groups and comes across as a nice person but is totally different with me. He often tells me, people think I'm argumentative or don't like me. Even says people know what he has to 'put up with' but when I ask who these people are he can't name anyone.
I think he may be 3-y years down the line rather than very early stages. Dreading what comes next!
Hi
It was heartbreaking to read your thread. I have the same reactions from my husband too. I spend a lot of the day having anxiety. The thing is he was always a bit aggressive at time but now it's fairly constant and I too dread what's going to happen next.
 

jennifer1967

Registered User
Mar 15, 2020
24,964
0
Southampton
hello, it might be worth you not trying to get him motivated. he may just not be able to cope. mine goes out 2x 21/2 hrs a week to a mens shed and to be honest, its about as much as he can manage. he was diagnosed 3 years ago with vascular dementia and sees his home and me his safe place. he finds it hard to follow conversations especially if there are a lot of people. he mixes up which grandchild is which. doesnt affect them, they might just correct him. he gets very tired after hes been out and doing host mode. he did get aggressive but was put on memantine which has sorted this out. he has anti-depressant as well.
i wouldnt argue with him because for him its his reality. you can change that. there is a compassionate communication that someone will put a link up.
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
6,763
0
Hi
It was heartbreaking to read your thread. I have the same reactions from my husband too. I spend a lot of the day having anxiety. The thing is he was always a bit aggressive at time but now it's fairly constant and I too dread what's going to happen next.

@bakinghappy I am so sorry that you are feeling so anxious all of the time, no one should have to feel like that but unfortunately it happens too often with carers.
Please contact your husbands GP to request a meds review as sometimes a change in meds can help, it certainly did in the case of my husband. If you are feeling very anxious a course of meds might also help you.
If your husband is physically aggressive at times please ensure that you have a fully charged mobile with you at all times and have somewhere safe you can go to in a hurry. Then call the police and explain what has happened, they are trained to deal with these cases.
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
6,763
0
 

jay6

Registered User
Jun 25, 2023
1,075
0
Hi
It was heartbreaking to read your thread. I have the same reactions from my husband too. I spend a lot of the day having anxiety. The thing is he was always a bit aggressive at time but now it's fairly constant and I too dread what's going to happen next.
It's hard enough dealing with Dementia without the aggression. Suppose we'll just have to try and deal with it, but yes the anxiety is real and only a carer can understand that part. Take care of yourself
 

jay6

Registered User
Jun 25, 2023
1,075
0
hello, it might be worth you not trying to get him motivated. he may just not be able to cope. mine goes out 2x 21/2 hrs a week to a mens shed and to be honest, its about as much as he can manage. he was diagnosed 3 years ago with vascular dementia and sees his home and me his safe place. he finds it hard to follow conversations especially if there are a lot of people. he mixes up which grandchild is which. doesnt affect them, they might just correct him. he gets very tired after hes been out and doing host mode. he did get aggressive but was put on memantine which has sorted this out. he has anti-depressant as well.
i wouldnt argue with him because for him its his reality. you can change that. there is a compassionate communication that someone will put a link up.
I have now given up trying to motivate him. It's not that mine can't cope because he's always wanting to go to different memory cafe's which doesn't seem to tire him. He's always been someone who would only ever do what he wanted, very selfish unfortunately.
 

jay6

Registered User
Jun 25, 2023
1,075
0
Dear diary:
Well the last two days have been non existent communication. OH sat on sofa from getting up to going to bed either asleep, watching T.V. or doing the same word page - not? Only other time getting up from sofa was to get drink or go to the loo.
I asked if he was happy - He said 'no not really' but when I asked why he didn't try to do something to make himself happy. The reply was 'Well I'm not unhappy.'
Oh well that's life now!
 

jennifer1967

Registered User
Mar 15, 2020
24,964
0
Southampton
maybe he doesnt understand what he is feeling. if my husband is restless, i sometimes say whats the matter and he will just say im restless. if i ask why, he doesnt know. he just has the feeling of being restless. if i ask if he wants to do something, he says no. i think with my husband, he cant concentrate on things sometimes if they are too complicated so thinking is too much effort.
 

jay6

Registered User
Jun 25, 2023
1,075
0
maybe he doesnt understand what he is feeling. if my husband is restless, i sometimes say whats the matter and he will just say im restless. if i ask why, he doesnt know. he just has the feeling of being restless. if i ask if he wants to do something, he says no. i think with my husband, he cant concentrate on things sometimes if they are too complicated so thinking is too much effort.
I'm sure mine understands. If its a memory cafe or something he wants to do, he can't get his shoes on quick enough.
The other day I said 'I wish you were as interested in doing things here as much as you are in getting out and about' wasn't said nastily, I even laughed as I said it.
His immediate reaction was 'I'm not going now' expecting me to say 'don't be silly.' But instead I said 'Well I'm willing to take you, but it's your choice' We didn't go, Later kept accusing me of refusing to take him.
 

jennifer1967

Registered User
Mar 15, 2020
24,964
0
Southampton
I'm sure mine understands. If its a memory cafe or something he wants to do, he can't get his shoes on quick enough.
The other day I said 'I wish you were as interested in doing things here as much as you are in getting out and about' wasn't said nastily, I even laughed as I said it.
His immediate reaction was 'I'm not going now' expecting me to say 'don't be silly.' But instead I said 'Well I'm willing to take you, but it's your choice' We didn't go, Later kept accusing me of refusing to take him.
when its mens shed day, hes up before me and happy ready for the taxi to come and get him. on other days, im prising him out of bed repeatedly calling him. hes asleep half the day and no motivation to do anything. he does say sometimes that its boredom.
 

jay6

Registered User
Jun 25, 2023
1,075
0
when its mens shed day, hes up before me and happy ready for the taxi to come and get him. on other days, im prising him out of bed repeatedly calling him. hes asleep half the day and no motivation to do anything. he does say sometimes that its boredom.
If I was to say 'shall we go out' he will move and have his shoes on before I'm ready, but if I say something like 'Shall we sort the shed out or do something in the garden' He goes completely deaf and pretends he doesn't hear me.
If I pop out, I know he's been up and about because things move or the back door porch is open (hard to close properly)
 

jennifer1967

Registered User
Mar 15, 2020
24,964
0
Southampton
If I was to say 'shall we go out' he will move and have his shoes on before I'm ready, but if I say something like 'Shall we sort the shed out or do something in the garden' He goes completely deaf and pretends he doesn't hear me.
If I pop out, I know he's been up and about because things move or the back door porch is open (hard to close properly)
mine has selective deafness and i need to repeat things. mine has COPD so is limited as to what he can do.
 

jay6

Registered User
Jun 25, 2023
1,075
0
mine has selective deafness and i need to repeat things. mine has COPD so is limited as to what he can do.
Mine has selective deafness too so repeat things several times. He was issued with a hearing aid 4 years ago but insists he doesn't need one.
 

jay6

Registered User
Jun 25, 2023
1,075
0
Not much change this week, OH still sits on sofa with word search or looking at T.V. but I've just left him to it. At least we aren't arguing.
He was supposed to go to a group Monday but when I asked if he was going he said 'No' then said 'There is a reason' but as he was waiting for me to ask for the attention. I just left it go and said 'Oh well its your choice'
Yesterday he went for a short walk, just round the outside of house with one left shoe and one left slipper (on wrong foot) I just left it so he didn't get abusive.
Later he said 'As you say I never talk, do you want me to just talk about mundane things?' I replied 'Well yes that would be nice rather than no conversation at all'. and I got
' When I got up, I washed my face, then I washed my neck, then I washed ........' I feel like I'm going round in circles. He could have chosen the news, garden, weather etc. but no!
Oh well
 

jay6

Registered User
Jun 25, 2023
1,075
0
Think we are going to have 'one of those days' again today.
I made the mistake of commenting on his mobility. He came down a step. totally relying on his stick. Something he's just started doing and he went off on one. Telling me I'm nasty, picking on him etc. I tried to explain but got nowhere so just left it.
5 minutes later, asked me if I wanted a coffee and saying said I was nasty. Then tried to twist things to me wanting to cause an argument.
Now he's just back on the sofa in his own world with his word search page (although not really sure how much he is actually doing).
I don't understand why it's just me he is nasty with, when I'm the only person who tries to look after him.
Lovely sunny day but he's quite happy doing nothing.
Finding it hard with no conversation. Feel like I'm treading on egg shells if I say something which sets him off, because it will all be my fault, I'll be this or that....