Desperately seeking support

big l

Registered User
Aug 15, 2015
176
0
Unbelievable! We are told the importance of early diagnosis and this response is outrageous. Although tablets can be useful for some people, my understanding is that the most important thing is to keep your mind and body active. Even the most awkward people, when confronted with the reality of a diagnosis may try to fight it. For carers it is vital to know what you are up against and for most people a diagnosis of dementia is better than no diagnosis. If there are money issues, it also opens up the possibility of Attendance Allowance and Council Tax exemption. I’m getting angry again!
feeling ratty as hell this morning. oh started getting agitated early on as we had to drop the car off at the garage for it's mot prep. when reminded that he hadn't washed, had breakfast etc. got even more agitated, angry, unkind - the full programme - whilst I was trying to get ready. even the simplest things are monumental - and you can't bundle a fully grown man into a car the way you can a stroppy child. - unfortunately! there. blood pressure back off the ceiling; feelings of murder subsiding. all because I can let it out and I know there are people out there that will smile wryly
and understand. thank you for being there.
 

big l

Registered User
Aug 15, 2015
176
0
I think I posted(?) the last message in the wrong place. it was meant for everyone not just to scream in angryperson's ear! anyway this is my second attempt. good morning peachez, canary, angryperson and sammie234 your support is life saving.
 

Sammie234

Registered User
Oct 7, 2016
219
0
Shropshire
I think I posted(?) the last message in the wrong place. it was meant for everyone not just to scream in angryperson's ear! anyway this is my second attempt. good morning peachez, canary, angryperson and sammie234 your support is life saving.

That’s ok I’m currently coping with a rather miserable 2 yr old this morning his younger sister is asleep as is my hubby and am trying to cook a bit of dinner as well, this babysitting is getting hard work :eek::eek: Hope everyone keeps sane:p
 

Peachez

Registered User
Jun 19, 2016
124
0
South East England
feeling ratty as hell this morning. oh started getting agitated early on as we had to drop the car off at the garage for it's mot prep. when reminded that he hadn't washed, had breakfast etc. got even more agitated, angry, unkind - the full programme - whilst I was trying to get ready. even the simplest things are monumental - and you can't bundle a fully grown man into a car the way you can a stroppy child. - unfortunately! there. blood pressure back off the ceiling; feelings of murder subsiding. all because I can let it out and I know there are people out there that will smile wryly
and understand. thank you for being there.

smiling wryly here... o_O

Mine's been being very obtuse, very up and down, & DD2 and I are walking on eggshells... can't wait for our visitors to come and go again this weekend, so we can all settle down again :oops:
 

big l

Registered User
Aug 15, 2015
176
0
I just want to hug you. So many people find themselves in this ghastly position and think they are supposed to get on with it as effortlessly as when they were young and coping with running a household, maybe children etc. It is far better, though, to vent your anger on paper here than at him. Says me, who loses it all the time, who resents it every time she has to clear up a mess, who nags because she expects jobs to be done as they were before and stomps around irritably searching for the things that have gone missing - again! You aren’t alone. Do you have any respite in the form of him going out with friends or relatives? Can you leave him alone safely?
oh gone to the pub to meet a friend. he's happy and i'v got some time to myself. it seems to work fine if he goes out - and he is quite safe, but if I go out he won't have had lunch, just sat and watched television - he was, until quite recently, organised and active, but now a couple of times he's fallen, so I don't leave him for too long - lunch, maybe - but not all day. what I find most difficult of all is the fact that oh can appear so normal to friends, I don't get this same man for myself and i find it so sad. then, when oh has a 'slide' in behaviour it's hard because I don't know where we're going and then when we reach the new plateau I grieve all over again and try to re-adjust to the new oh. then there's the frustration at not knowing what to do for the best for us both. push for further tests - (oh knows who the prime minister is!) or - what? I first noticed a change in oh's behaviour in 2007 so that's 10 years ago, but the diagnosis of mci only came in 2013 when he had 2 minor strokes and we found it in the consultant notes. in march 2017 oh had a defbrilator fitted and the opp seemed to have brought on a further decline in his mci. my lovely man is fading and it's breaking my heart. family? still largely in denial - he's their dad - I shall have to try harder!
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Oh @big l , its heartbreaking, isnt it?
My OH is the same - knows who the prime minister is etc etc.
what I find most difficult of all is the fact that oh can appear so normal to friends, I don't get this same man for myself and i find it so sad
This phenomenon is well known on here - it is known as "host/hostess mode".When they are with other people - usually family or medical staff - they can concentrate a harder (probably subconsciously) and sort of pull themselves together so that they appear quite normal. Unfortunately they can only do it for short periods of time and it really wears them out. So what usually happens is that family come to visit - see the "host mode" and go away quite sure that things arnt as bad as you are saying; and then you have to pick up the pieces where he is tired, confused and ratty :rolleyes::mad:
 

Flossie56

Registered User
Aug 30, 2017
5
0
My first post...I had no idea this 'Host' mode was so common. My dad does this and when my brother visits he thinks dad is fine and that I'm being too pessimistic. It's so frustrating. You need to be with someone all day to see the real situation.
This declining and then a plateau before further decline. It's somehow reassuring to read that
I am not alone.
 

Angryperson

Registered User
Oct 27, 2017
34
0
oh gone to the pub to meet a friend. he's happy and i'v got some time to myself. it seems to work fine if he goes out - and he is quite safe, but if I go out he won't have had lunch, just sat and watched television - he was, until quite recently, organised and active, but now a couple of times he's fallen, so I don't leave him for too long - lunch, maybe - but not all day. what I find most difficult of all is the fact that oh can appear so normal to friends, I don't get this same man for myself and i find it so sad. then, when oh has a 'slide' in behaviour it's hard because I don't know where we're going and then when we reach the new plateau I grieve all over again and try to re-adjust to the new oh. then there's the frustration at not knowing what to do for the best for us both. push for further tests - (oh knows who the prime minister is!) or - what? I first noticed a change in oh's behaviour in 2007 so that's 10 years ago, but the diagnosis of mci only came in 2013 when he had 2 minor strokes and we found it in the consultant notes. in march 2017 oh had a defbrilator fitted and the opp seemed to have brought on a further decline in his mci. my lovely man is fading and it's breaking my heart. family? still largely in denial - he's their dad - I shall have to try harder!
My husband had an ICD fitted some years ago now. Unfortunately he had a series of inappropriate shocks and after a second opinion, had it removed. He now has AF. I feel very bitter against the arrogant doctors who have treated him with wrong medication and the ICD all of which may, or may not, have contributed to his current predicament. No-one will take responsibility for the mistakes. No-one, apart from his GP who appears powerless, will acknowledge his decline.
 

big l

Registered User
Aug 15, 2015
176
0
Oh @big l , its heartbreaking, isnt it?
My OH is the same - knows who the prime minister is etc etc.

This phenomenon is well known on here - it is known as "host/hostess mode".When they are with other people - usually family or medical staff - they can concentrate a harder (probably subconsciously) and sort of pull themselves together so that they appear quite normal. Unfortunately they can only do it for short periods of time and it really wears them out. So what usually happens is that family come to visit - see the "host mode" and go away quite sure that things arnt as bad as you are saying; and then you have to pick up the pieces where he is tired, confused and ratty :rolleyes::mad:
now I better understand the reason for oh's rattiness after a visit from friends/family or a trip to the doctor/hospital. of course the level of concentration needed to keep up with what's happening is tiring. one thing that i find particularly upsetting is the derision and ridicule - for example, oh gets extremely agitated when he doesn't 'get' something that i'm trying to explain to him, but (fortunately!) it's because my communication skills are so poor - he can't imagine how I ever managed to last in my job (infant teacher). oh well. onwards if not necessarily upwards.
 

big l

Registered User
Aug 15, 2015
176
0
My OH had the same problems. Firstly he was diagnosed with depression, then when the things he was doing became too obvious to ignore (even to an outsider) he was diagnosed with MCI and then finally with Frontotemporal dementia.

I think that the rarer forms of dementia like FTD or Lewy Bodies are not well known so that if your symptoms do not "fit" the usual pattern everything is dismissed by the medical profession. It took 4 years to get the diagnosis and the time during that period was very hard. We were both being told (quite firmly) that there was no dementia. OH believed them and thought the marital problems were my fault so took it all out on me. I believed them and thought he could change if he really wanted to. It was very difficult for both of us, especially as OH had only limited awareness of his behaviour. Couples counseling was a disaster as he was telling the therapist things that were untrue (although he thought they were true), was not able to do things that the therapist wanted him to and constantly complained about the same points even though we had already gone through them. I on the otherhand was constantly annoyed because he seemed to be willfully ignoring my problems, seemed so manipulative and without a diagnosis I thought he was doing it on purpose. We came very close to divorce.

The only thing that saved our marriage was that deep down inside I knew this was not right, this was not the man I married and that there was something very wrong. I found myself constantly flipping between "this cant be right, Im sure he has some kind of dementia" and "hes turned into a horrible person and I am leaving". It also didnt help that mum had Alzheimers during this period and my stress levels were sky high.

My OHs diagnosis has come as a huge relief. I was finally believed (having been previously accused of making things up) and there was an explanation. Yes, once there was a diagnosis then understanding and forgiveness could come. I wont lie - I still get irritated at times (I am not a saint!), but things have become more settled and I now know much better how to deal with it all.

@tangled89 - please remember that @Angryperson @Peachez and @big l do not yet have a diagnosis for their partners (which is why the thread is on this section of the forum). I am sorry that the things said have upset you, but the people on here are confused themselves and need an acknowledgement of their feelings too. They are in this period before diagnosis and are therefore unable to be certain that it is due to dementia. Please be able to forgive them too.
 

big l

Registered User
Aug 15, 2015
176
0
one thing comes across load and clear in everybody's messages - medical gurus don't give sufficient weight to what we are telling them that we are living with. I sometimes wonder if they think we're the afflicted ones?
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
one thing comes across load and clear in everybody's messages - medical gurus don't give sufficient weight to what we are telling them that we are living with. I sometimes wonder if they think we're the afflicted ones?

I really did have doctors think I was making it all up :eek:
Because FTD is an unusual dementia many people (even doctors) dont recognise the symptoms and because he denied everything I told the doctor and he passed the Mini Mental State Examination showing no signs of memory loss, he was believed and I wasnt.

I now now that the MMSE (designed for testing for Alzheimers) is not a good tool in picking up FTD and also that his denial of problems was actually anosognosia - as symptom of dementia where they are literally unable to understand that they have anything wrong with themselves. They often have a feeling that Something Is Not Right, but are unable to understand that this Something is actually them - so they blame everything and everyone else.

Fortunately, OH was eventually referred to a neurologist who specialised in FTD and at that point I was believed.
 

Peachez

Registered User
Jun 19, 2016
124
0
South East England
Hello @Flossie56 and @big l , good to see you here. @canary , what you said above sounds so familiar - the fight I had for Drs to see that something was wrong! They need to get away from the 'one size fits all' attitude. Though there's a bit of me that thinks they don't want to know if it's early stages, as there's so little they can offer us to help... :(
 

DaisyCat

Registered User
Dec 2, 2017
79
0
@Angryperson Snap !!! always having to dance round my OH in the kitchen when he just stops and stares at what I'm doing, and prompting "would you like to get the plates out... " etc. I used to have to ask him to slow down when we were out on walks, and now I have to keep stopping to let him catch up. When I'm busy doing chores he keeps , most infuriatingly :mad: , telling me in a slow voice to " ...slow down... " when I'm just trying to get things done! He'll copy me, or do one thing at a time when asked, but doesn't seem to 'join the dots' anymore if you know what I mean.

We've just got back from the hospital, (annual check up for me,long story) and within moments of coming in he's asking if his trousers are too long... if I'm going to phone the vet ... if I'm going to my friend's funeral on Thursday... please... just let me get my shoes off and get some coffee...

Good that yours still enjoys company. Mine does too, but likes me to be there for backup. Once on the way home, he actually said " I don't think I repeated myself, did I?" so he def knows and makes an effort in public. It's just that effort that gets them past assessments etc, as I guess they were brought up to "Pass" anything that looks remotely like a test. Mine is very talented at it. However the recent incident of him Burbling gibberish at a waiter, is going to be reported to the GP like it or not! I'm getting to the point of wanting him reassessed.

Keep up the voluntary work! I do whatever I can to get out of the house and stay in touch with 'normality' as much as I can. Knowing I can hold a normal conversation is very reassuring when at home one is constantly wondering ' .. is it me??'

Right, I'm off to phone the vet. Deep breaths and chin up Angryperson, you are not alone XXX


I really feel for you and can empathise with your situation. My OH is 66 and sounds very similar to your OH. He won't accept that he has a problem other than he forgets names!
It's so frustrating because when we're out with people - he gets muddled but doesn't notice that he's confusing them! No one has said anything to me yet and he's adamant that I'm not to tell people about the dementia. I try to pass off his forgetfulness in front of others but this won't be able to last forever.
 

Peachez

Registered User
Jun 19, 2016
124
0
South East England
I really feel for you and can empathise with your situation. My OH is 66 and sounds very similar to your OH. He won't accept that he has a problem other than he forgets names!
It's so frustrating because when we're out with people - he gets muddled but doesn't notice that he's confusing them! No one has said anything to me yet and he's adamant that I'm not to tell people about the dementia. I try to pass off his forgetfulness in front of others but this won't be able to last forever.

Hello @DaisyCat , thanks for your post, it's good to know we're not alone. I am finding more and more, that people we interact with end up talking to me even if he started things off, it just sort of happens. I've even had him pass over a phone conversation with a utility to me as he couldn't cope. I also have to fill in the blanks for him in front of others, and get so tired of his constant questions. Last night I gave up and just said "I don't know" over and over... ho hum... if he would just get off his computer and put up my new curtains, they've been waiting for him all week... sometimes my patience wears a little thin...
 

big l

Registered User
Aug 15, 2015
176
0
Oh dear peaches. it's exactly what I also find so difficult too - the wheedling and cajoling needed to get the simplest, simplest thing done. I try to get everything organised for jobs - putting the day we'll do whatever on the weekly calendar board - I've got new curtains too - unfortunately I need the curtain rail put up as well and I don't think he can do that now. I can see diy is going to be a problem because oh is adamant he is going to do it - (when?) - and won't entertain asking anyone else.
now. i'm really not sure how any of this might have made you feel better - but there's two pairs of curtains between us now. good luck with yours!
 

big l

Registered User
Aug 15, 2015
176
0
Oh dear peaches. it's exactly what I also find so difficult too - the wheedling and cajoling needed to get the simplest, simplest thing done. I try to get everything organised for jobs - putting the day we'll do whatever on the weekly calendar board - I've got new curtains too - unfortunately I need the curtain rail put up as well and I don't think he can do that now. I can see diy is going to be a problem because oh is adamant he is going to do it - (when?) - and won't entertain asking anyone else.
now. i'm really not sure how any of this might have made you feel better - but there's two pairs of curtains between us now. good luck with yours!
sorry peaches with a z x
 

Peachez

Registered User
Jun 19, 2016
124
0
South East England
Oh dear peaches. it's exactly what I also find so difficult too - the wheedling and cajoling needed to get the simplest, simplest thing done. I try to get everything organised for jobs - putting the day we'll do whatever on the weekly calendar board - I've got new curtains too - unfortunately I need the curtain rail put up as well and I don't think he can do that now. I can see diy is going to be a problem because oh is adamant he is going to do it - (when?) - and won't entertain asking anyone else.
now. i'm really not sure how any of this might have made you feel better - but there's two pairs of curtains between us now. good luck with yours!

Ah yes, DIY, mine put together some flatpack furniture , didn't know what a symbol was in the instructions & didn't notice the tube of white stuff... oopps... realised too late it was the glue :eek:, and he hadn't put it in. He's trapped a lose extension lead behind some tall narrow DVD storage units that're now screwed to the wall at the top... ho hum...:rolleyes: .My curtains are up, but only because I stood over him while he got started, then had to make him regather one of them as he'd done it from the wrong end ... hope you get yours done. There's an old joke that's something like the man sitting reading a paper, saying "alright woman, I'll do it, no need to remind me every six months..." ... just don't mention the Christmas card lables.. :eek:
 

Angryperson

Registered User
Oct 27, 2017
34
0
I long ago learnt to do it myself. I had a friend whose husband insisted on doing everything just so meaning that all the time their children were growing up they lived in one mess after another. My home may not have been perfect but it was ok and how I wanted it. I don’t know whether they still do but B&Q had d-i-y classes so you can learn and you can see how to do anything on you tube. Also, your Local Aothority should have a handyman service who can do the little jobs you can’t do any more. I know that doesn’t get over someone wanting to do it themselves but if you know what you are supervising it helps.