Denial - any suggestions?

Pudster

Registered User
Jul 29, 2013
24
0
Braintree
My husband was diagnosed mid May this year with 'early stage dementia - probable Az' He did not receive any correspondence from his consultant but managed to obtain a copy of the report from his GP during an appointment. I thought that written information would help, however, it has made no difference to his denial. He is pinning his future prospects on whether he will be able to continue driving. The consultant is taking an age to respond to DVLA, which my husband is using as 'proof' that there is no problem. He appears to have deteriorated in the last month- eg. walking to local shop and back for lottery and then within 1/2 hour saying 'we forgot the lottery tonight' then repeating the conversation 15 mins later. Today he insisted on painting the bathroom when I was out (having me time is rare - less than 1 once a month) when I came back the walls were painted but the ceiling clearly left untouched, albeit when he spoke to me on the phone, he insisted everything had one coat, I have also discovered that he is not administering his medication for BP and type 2 diabetes properly. There are many of the other more routine lapses, but these are three new ones this week.
He is not on any meds for it and, although I have suggested a GP appointment, he will not move forward and go. I have some understanding of how frightening it must all be...it is for me also, he has a personality type that naturally takes a parental approach, making the loss of control even more distressing. We seem to be going round and round in circles, with us both getting angry and resentful of each other - me of him because he wont look for support from GP/meds and I believe he feels like it because he sees me as confirming his memory lapses. Worse still is that he tells me that this whole situation is my fault (I went to the GP with my daughter to start the process, which came out in reports during our first meeting with the consultant) I believe I understand many of his thoughts and feelings but would welcome suggestions to break the evening daily cycle of anger, resentment and blame.
On another note I am curious about the stages but, having checked it out, cant decide where he fits - any any advice would be appreciated. I guess I am trying to make some kind of predictability...I have been a main carer since I was 24, now 50 and struggle with the not knowing.
I would also be interested to know what people's experiences are from diagnosis on as I think it sucks! I cant believe that a person with a diagnosis of dementia can walk in and out of a consultation with out anything to refer back to or an appointment with what comes next...he has an appointment with memory clinic during Oct - 5 months after diagnosis, which I arranged as there was nothing :confused:
 

Noorza

Registered User
Jun 8, 2012
6,541
0
I am so sorry, this is hard for you and it does suck. There is no predictability which is the hardest thing for carers. I'd give up trying to convince him of what he can't do or to accept his diagnosis as it will just cause conflict and it won't solve anything. Pick your battles.

Medications are important, can you get them put into blister packs at the chemist so you can see what medications at what times and which days have been taken? This is how we track mum's meds. Painting? Well I would be glad he's done that much well and help him finish the ceiling or do it myself.

There will be a lot of false memories or false beliefs, to keep things as calm as possible (impossible for most of us to do all of the time) the best advice I've seen is to acknowledge their false believe (don't correct them) and distract.

SO for the ceiling it might go "Bathroom looks great, perhaps the ceiling needs an extra coat" Not "You said you'd done the ceiling but you haven't touched it" because if he believes that ceiling was painted, if he's true to most people with dementia's behaviour, he will totally believe it's been done and you telling him he hasn't will be like banging your head against a brick wall. I'd put a search in on this site for "Compassionate Communication" it goes into it in a lot more detail.

Welcome to TP, you will find lots of support on here.
 

Pudster

Registered User
Jul 29, 2013
24
0
Braintree
Thanks for your reply. I do understand your comment re pick your battles, we have a 25 year old son with autism and learning disability! (I read that you also a have a son with a form of autism too) I am really interested in compassionate communication and will check it out.
My main frustration isn't that he wants to paint the bathroom, (though when I saw it, it could easily have been! It is difficult not to sound hard hearted in writing, however, if you knew me, you would understand my humour!) it is that it highlights to me how things have changed, but he will not yet act AND is depriving himself of getting help via meds that could stabilize his current level of deterioration. He will not hear of any form of dosett box or blister pack as he sees that as loosing independence. I think as he is more aware of his limitations, he appears to be getting more secretive in a bid not to disclose anything.
I would feel much more willing to support and console, but tbh feel angry that he is not prepared to seek better medical support. I am also scared, which I tend to show as anger and frustration, if this is early stage - what next, hence the comments about predictability. I recognise that both of us are experiencing a transition process and these feelings are part of the cycle...denial being of of the stages!!!
Any way thanks for your time, I am off to paint the ceiling and a wall!:D
 

Noorza

Registered User
Jun 8, 2012
6,541
0
Thanks for your reply. I do understand your comment re pick your battles, we have a 25 year old son with autism and learning disability! (I read that you also a have a son with a form of autism too) I am really interested in compassionate communication and will check it out.
My main frustration isn't that he wants to paint the bathroom, (though when I saw it, it could easily have been! It is difficult not to sound hard hearted in writing, however, if you knew me, you would understand my humour!) it is that it highlights to me how things have changed, but he will not yet act AND is depriving himself of getting help via meds that could stabilize his current level of deterioration. He will not hear of any form of dosett box or blister pack as he sees that as loosing independence. I think as he is more aware of his limitations, he appears to be getting more secretive in a bid not to disclose anything.
I would feel much more willing to support and console, but tbh feel angry that he is not prepared to seek better medical support. I am also scared, which I tend to show as anger and frustration, if this is early stage - what next, hence the comments about predictability. I recognise that both of us are experiencing a transition process and these feelings are part of the cycle...denial being of of the stages!!!
Any way thanks for your time, I am off to paint the ceiling and a wall!:D


We are in the same boat and it's tough, no doubt about it. Accepting they have this disease is terrifying for them, mum acknowledges what she can't do but it's all down to the bangs on her head. She can't be medicated due to health issues so it makes no difference really what we call it.

And you are RE painting the ceiling, he's already done it remember. :D:D

I was wondering how does your son cope with his Dad. My son has zero empathy as is typical with autism but he loves his Nan and they're really close. For us he just gets annoyed when I have to do so much for her. How does your son cope if you don't mind me asking.
 

Pudster

Registered User
Jul 29, 2013
24
0
Braintree
Hmmm Just lost a lengthy reply to you Noorza, so here is the short version!!! Our son has adapted surprisingly well. I knew he would need his own space sooner rather than later and we were fortunate that there was an affordable housing scheme building nearby. We were lucky enough for him to get a tenancy and 24 hour support. I think he notices the little changes with hubby ie needing more control of the remote, less flexible in outlook and he is probably aware of something different with regard to hubbys raised anxiety and frequent questioning, he started to distance himself more, which was not helpful for him. However the next blow was 3 days after hubby's diagnosis, my mum was diagnosed with vascular dementia, which was very rapid. I think he struggled more with that as she started to talk non stop but not stringing words together that made the sentences connect. He took a very direct very 'shut up nanny' ( which stunned her as much as us!!!) but then started saying 'nanny is confusing!!!' She is now in a CH but he wont visit (he went once, which will brilliant) - too many unpredictable people in an unfamiliar place! I often wonder how things will be in the future with hubby as our son will become aware of more significant changes.
 

HanSpan

Registered User
Aug 9, 2013
2
0
Oh I really feel for you. I feel the same with my Dad - the frustration and irritation that he didn't do things earlier and still won't do some things now. Even though he's basically totally incapacitated with a fracture.

I really get the humour method of dealing with things - Dad and I, and my OH, surprise and sometimes alarm people with the things we say - but its just the way we handle things. Dad told me - in a lucid moment - that the docs at the hospital accused him of being obsessed with death and were worried he was suicidal because of the thigns he was saying. Fortunately the chap that came last night to sort his anticoagulants did crack a smile when I told him we'd all three (me dad & OH) agreed that bleeding to death was better than a clot potentially causing a stroke so it was fine if his INR went a bit higher. Although at first he too looked alarmed and told me Dad wouldnt bleed to death as he was being monitored - duh - it was a joke! I think Dad chuckling made him realise. I mean what the heck else can you do? If I didn't find something to joke about I'd just sit and sob!

I've found in the past few weeks that gently asking Dad to let me do a particular something, not too hard and backing off the minute he gets irritated but bringing it up over and over whenever I see him, I seem to have persuaded him into a few things. I am not blessed with patience - at all - in fact I have absolutely none! So this is not an easy thing but I guess we all just have to work through trying different things until we find something that works. I do have the advantage that Dad was the first to recognise his memory was failing so he sent himself to the memory clinic - but that doesn't mean he isn't in denial about how bad its getting and what might need to be done to protect him from himself.

I so hope you find dealing with it gets easier.
 

optocarol

Registered User
Nov 23, 2011
315
0
Auckland, New Zealand
Pudster, I agree with others who have said not to waste energy trying to get him to face reality. My OH has read (more than once) the report from the specialist. It makes no difference. He just blames the tablets the GP put him on (Donepezil/Aricept), which he says he took for 3 months, which he didn't. It was 3 weeks, then he refused to take them any more.

I understand how you wish he'd accept it, I so wished so too, but more than a year later, I think I'm starting to get it i.e. he's convinced there's nothing wrong with him, so nothing I say is going to convince him otherwise.

As someone said, there will be false beliefs and memories. I was very upset the first time I was accused of putting water in the fuel to stop him driving, not to mention I am trying to my hands on his money. (2nd marriage) I'm getting better at ignoring such things and now tend just to say something non-committal. Tbh though, I feel I have to be distant and ignore much of what he says so as to cope emotionally.

TP has been a great help for me and I'm sure you will find it so too.
 

susy

Registered User
Jul 29, 2013
801
0
North East
My dad doesn't have Alzheimer's apparently, no it was some ridiculous man with a stupid goaty beard that caused all this trouble. Erm ok dad!!! Now how many times have I heard that story and others (all on repeat)

The latest funny (sorry if that offends but we are all trying to keep our sanity with this) was that he wet himself as he often does when he went to the loo. My mum tried to get him to get changed out of the wet clothes, he got rather angry and accused "someone" of coming up and chucking water over him. I mean, where did he think that one up from. Anyway he refuses to change still and ends up sitting in wet clothes most of the time. He isn't incontinent but has urgency so ask he reaches the loo he spreads it generously around. Incontinence pads wouldn't help here, anyone got any good ideas??