Does he know he has dementia?

[Bookworm]

I didn't want to start a new thread - but I want to ask your opinion. So here I am anyway with a new thread.

My husband denies anything is wrong - but there is lots wrong. Almost NO-ONE outside the house sees anything is wrong.

Today (he rose from bed at 11 or 11.30 &) by 10.30pm he has had only 2 rolls to eat having been busy in our own home with accountant from 1.45 - 4 & out of house from 5 - 10.30pm). I gave him a nice meal on return about 11pm. I told him I've written to GP to ask for high protein, high energy drinks as he is losing weight - forgetting to eat. & he just said fine, good idea. So what is it - as I suspect - he does know really but hates to admit it?

Twice in a week roll over easy peasy - cash only, no Switch, no Visa & now, also, you need food supplements......we can (and do) row about if I said this or he said that - but maybe behind all the angst he respects I'm trying to keep him comfy??

 

[Grannie G]

Does your husband need to talk about it Sue? Can you just put a meal in front of him and say `Here`s your dinner.` Will he eat it?

 

[Bookworm]

Does your husband need to talk about it Sue? Can you just put a meal in front of him and say `Here`s your dinner.` Will he eat it?

He eats everything I give him - but as I work full time & more, I have to risk take by setting up systems that mean he is likely to eat food I have left most days - but he won't snack if he finds himself peckish and anyway his day is too short & too busy to find time for "three meals per day".

It is not about food, this thread - it is about if this absolute denial anything is wrong can be seen as a smoke screen if you look carefully.........

 

[Grannie G]

Whatever it is Sue perhaps it`s the only way he can manage it.

 

[jenniferpa]

Like Sylvia, I wonder if you really need to discuss this with him. Unless someone is actually bed bound, and thus can't get to food, my feeling is that you should just leave him to eat as and when he feels like it.

I think people go through stages. For most of the time I have known him, my husband didn't eat breakfast or lunch. Now, he has soup and crackers for lunch every day (how boring). I know why there was this change (when he was hospitalized and also having chemo, lunch was standard) and of course it's not unreasonable for him to do this but...

 

[Bookworm]

Thread???

Sorry - it is not about food.........

 

[cragmaid]

Sue, what you might have to consider is that he's a man and we all know how good they can be about talking about stuff. (Not). He will appreciate your efforts but he doesn't think to thank you. I know it's not about food, that's only one part of it. Your life is full of busy try to keep some time for thinking about you too. Night.x.

 

[jenniferpa]

No, it might not be about food (although you have raised this issue), but I do think that it is highly unlikely he will starve himself unto death at this point. All that is happening here is that you are worrying yourself silly, for no good reason. He'll eat, or he won't eat, and in truth, it won't kill him to eat only one meal a day. When you get to the point that he is eating nothing I would worry but not until then.

 

[Necion]

Hi Sue, I get where you're coming from, and can identify a bit with this.
I've been wondering similar myself recently, regarding Johns eating. He has a pretty good appetite, and we always have a good evening meal, as has been the norm for years. He's never been big on breakfasts, although for a while (pre illness) he was anxious to get a bit of weight off, so I kinda 'nagged' him, if he won't start the day with a breakfast, how does he expect me to work miracles with the evening meal.
That worked for a while, and I used to make 'fresh' museli, and suggested he added fresh fruit when he helped himself in the morning.

Lunchtime used to be whatever he fancied for a quick snack-meal, nothing too heavy as he was back to a physical job in the afternoon. John nearly always prepared this for both of us, eg cheese-beano (Toast, b/beans, cheese on top & toasted), couple of poached eggs on toast, or already made home-made soup...you get the idea.

The lunch-time routine remained the same until 2-3 weeks ago, (we'd developed the habit, quite by chance, of having porrige (oatmeal) for brunch, healthy, cheap, and John became an expert....never a lump to be found.

I've noticed that he'd have a couple of biscuits with his morning cuppa..that's o.k because meds on an empty stomach ain't good...but lunchtime could quite happily disappear for John a lot of the time...unless I suggest I'll make it.
Evening meals...if I was busy, John would have previously offered to peel spuds, or suggested he make a 'spanish' omlette...(always plenty odds & ends to make it interesting).
Over the past few months, if I was out, maybe visiting one of the girls or whatever, no matter what time I got home, John hadn't eaten anything that could be called a meal, no spuds peeled etc.

I've realised, just over the past couple of weeks, that whatever excuses he gives eg not hungry, waiting for me etc, is always a perfectly good excuse....but when I make the meal, he's definately ready for it!

There's always plenty food in the house, fridge, cupboard, freezer, but it needs to be prepared. Even if something just needs heating-up as it were, he dosen't do it now.

I don't think it's denial of his illness, but because the most likely diagnosis will be FTD where reasoning & judgement are affected, I'm sure this is now affecting his 'working out what to do' ability as regards meals as well as the other things I'd noticed.

One of those very frustrating things we all have to cope with when there's no diagnosis....we don't know what to look out for, so takes a while to catch on it's happening!
I've decided that I'm taking over the 'making sure John eats', so to speak. We're always told about children who eat breakfast doing better at school, etc, so I think it's vital that nourishment is well regulated, just to make sure what is working....stays working as long as it can!

Don't know how relevent this is to your situation with hb, but certainlty something which is going on here.

Take care Sue, Love, Necion. x

 

[Bookworm]

? man thing

Hi - thanks for posting ladies - yes I can see Necion seems similar except mine has been not bothering to eat unless it is put before him for maybe 2 years......& he is beginning to look like someone very old - you know that flappy skin around the arms and legs - yet he is physically fit and active.

I threw the (stale) cornflakes away because he forgot he was supposed to have them in the morning and the morning is so curtailed by his rising at 11 ish that there really isn't time for him to fit in breakfast, lunch & a small snack before getting busy teaching music and then going on to music activities he participates in - so his opportunities to eat are around 12, around 4 & 10pm ish at least 5 days a week. You can see if he forgets lunch & has no breakfast he is running his day on hardly anything & a snatched biscuit - I'd say malnourishment would be more of an issue than straightforward weight loss.

I agree he is unlikely to die of starvation J!!

What I meant the thread to look at was why 3 major suggestions in less than 7 days have been accepted without question, calmly - cash only, accountant for tax return & now supplement drinks - so we have a very intelligent and scientific man who is allowing change to take place which proves that he is becoming less able to be independent or wise about various aspects of his life, accepting my suggestions but still denying there is anything wrong except poor memory. That was what I really wanted to discuss - do most know, few know, does it depend on type of dementia - or is this just a man thing as Necion said....

Sometimes he says - if I agree with you people will know & think less of me - I cannot reason with him so it is no use explaining some people know & still treat him the same & he sees admitting it as nursing home next stop - again reason about his capacity being so good will not wash!!

I think he does know and understand more than he admits.

I think a lot of the agression is him trying to cover it up from me.

 

[Skye]

Sometimes he says - if I agree with you people will know & think less of me - I cannot reason with him so it is no use explaining some people know & still treat him the same & he sees admitting it as nursing home next stop - again reason about his capacity being so good will not wash!!

I think he does know and understand more than he admits.

I think a lot of the agression is him trying to cover it up from me.

Sue, I agree with you.

I have a friend whose husband is a retired psychologist, and has dementia. He knows exactly what is in store for him, but does not want to go there. He buries his head in the sand, and pretends that he is just refusing to do as he's told. If he forgets something, it's because he 'didn't want to do it'.

If this is the case, your husband is a very frightened man. I know I dread seeing the same signs in myself, because I would recognise them.

Treat him gently, Sue. Try to let him do things his way as far as possible (not the money side, obviously, but you've got thaty sorted ). I think in time he will admit how much he needs you, and will talk about his fears, and allow you to reassure him.

Must be so difficult for you, I know.

Love,

 

[Christin]

I think he does know and understand more than he admits.

I think a lot of the agression is him trying to cover it up from me.

Hello, I think this would have applied to my FIL several years ago. When we first starting asking for help (he would forget I had left lunch in the fridge etc and say there was no food in house) he denied anything was wrong. GP, SS, he told everyone he was fine and they did seem to believe him. We asked for help as he was so depressed, but he simply said he would be ok later and again nothing was followed up.

Later on he would sit and just close his eyes when people called round, even friends. It was like he couldn't follow the conversations so he pretended to be asleep. From other threads I have followed I think this can be quite common. But frustrating for carers who see things deteriorating when no one else does.

 

[Necion]

Hi everyone. Sue, I'm really glad you started this thread.
Although we're still speaking about dementia....it's FTD...and the initial symptoms are so totally different from AZ -(I don't know anything about Vascular as yet) These differences make a vast difference to how we have to learn to live with it.

Sue, you say your hb has been with this 'not eating' for the past 2 years, so looking at my John being ony 58, I'm only seeing early symptoms as yet.
We had a TV documentary the last week, (I can't remember which channel, and I've now deleted it) which was looking at the different halves of the brain and their function. It was fascinating, and showed how 'learned memory' and 'new memory' are controlled by different parts of the brain. There's apparantly 52million - ish connectors between the 2 halves, and there was a woman on being interviewed who had had them separated....yes, the two halves of her brain separated!

I totally understand about managing the 'bigger' things fine. If we think about it..the things you mention ie cash vs card; use accountant for tax return; sup drinks/knowing the body needs food to function & survive.....are all rational things from 'learned memory'.
The 'I will eat because I need to, there's food there, I will have it at 12 o'clock'...is a concious decision which has to be made 'now', involving reasoning...so the previous learned fact that 'I'd better have (eg these cornflakes) before I get tied up with the accountant for the afternoon' is what we regard as a simple everyday process of thinking...but obviously one of the lost functions with FTD.

I'm sure you'll agree we could go on forever, but from what I've learned from the hundreds of FTD pages I've read, we pretty much have to work out the difference between the two, for ourselves, to deal with our own situation.

Will share an example which has just happened here in the last half hour...We have a water tap in our garage which also leads through to an 'outside' tap. After the frosts, water leak. John turned off the stop-cock just a couple of feet from the leak, so o.k. for then. Now weeks since thaw, I'd mentioned it a few times but John had never gone to check/fix problem. This would have required a concious decision to go & investigate, recognise, and repair. (new memory?)
I suggested last night that we get his brother, also a plumber, to come and fix the leak. John was astounded that I could suggest this, as he is quite capable.(!) Said he would look at it today. He remembered he had said this, and popped out to check....the water had frozen & ice had pushed the inside of the fitting out of place....came in for a spanner... back out to garage....a few turns of a nut & re-allign inside of fitting...tighten it up....job done! (learned memory?)
I asked him to check the other tap was flowing o.k, John became rather annoyed, said of course it was....if it wasn't there would be a leak there too!! (learned memory)

OOOOOps....he was right & I was wrong! Back to what I always say...he's ILL, NOT STUPID!
These are the kind of things I'm having to learn to recognise.

I've managed to apologise & explain that I hadn't recognised the difference on time, (John watched that TV prog too) so all's well now.

Bit of a ramble here, sorry, but a real-life happening nevertheless.

Will be keeping an eye on your thread Sue, busy later today but will catch up later.
Love, Necion. x

 

[maryw]

Hello Sue, I'm sure every case is different. All I know is I'm very sure my Mum knew there was something wrong with her thinking and her memory, and I'm sure she was frightened. Because she was frightened, I gave the answer that would give reassurance "even I have problems with my memory sometimes" or "you're wonderful for your age".

The questions my Mum asked were "Am I going ga-ga?" "Why am I having problems thinking things out?" and then there were comments like "I'm useless" "What good am I to anybody?"

Depression. Dementia. Hand in hand.

If your hubby has always been an academic, the realisation of the loss of his intellectual capabilities must be horrendous to him. I am sure underneath he really is so grateful for your support. xx

 

[Bookworm]

Wooaah!!

Yes, yes, yes, that's exactly how it is Necion. You could be living in my house. But why - tell me later - is the connection place in the frontal or temporal lobes??? Is it the connection place that has got damaged or the new memory place?

Just out of interest - does John find making a phone call the most stressful thing of all & puts it off & get very annoyed when you say it needs done, needs done now??? I have had some success with coaching him what he needs to say and in what order and that de-stresses it. I think phone calls are right out on the edge of new memory as the person on the other end can stray off the itinerary.........

Only thing I would add at this stage is that two things I've found that help the new memory "gaps" are 1. making something an invariable routine - e.g. - bath night, shower morning, clean day & night clothes daily (so, e.g. usually locks front door) & 2. making new requests for help part of "it would help me a lot please" - the new memory thing is not met with aggression because the old memory bit says - try to please & help people (taught that by Alz Soc Outreach Officer a couple of weeks ago).

 

[Bookworm]

Fear?

Those of you who have suggested that my husband must be fearful - thanks for posting - but I get the impression that most of the time he is in total denial - it is like his brain won't let him reason out what is happening. He is calm & content left alone slobbing around like a "hoody" - the rub comes when he is asked to help. Maybe there is a lack of connection between new & old memory as Necion says - so in the new memory place he could be concerned at odd moments - but most of the time he seems to think this is all normal for him, indeed his brain tells him immediately that there is a reason for what has happened - usually a reason that exonerates him from any part & probably implicates me as being the cause!!

 

[Bookworm]

Cornflakes

By the way - breakfast on cornflakes is new memory activity - this is a man who never bothered with breakfast for probably around 45 - 50 years of his life, just had a coffee - as he does now - so I wasn't very surprised when he stopped - but was mildly surprised that he could look at me eating muesli and not say - hey I'm hungry what shall I have? - frankly I don't think he feels hunger as he should. What has surprised me is he has dropped off his banana intake - a man who has eaten 2 or more bananas every day of his life for > 68 years - & sometimes he now goes several days without remembering to eat them.

This latter fact is what is beginning to worry me a little - that old memory is suffering. So - once he has has his rolls - why not have the banana just as he always would have done!

 

[Logan]

"I was only trying to be helpful"!!!

Absolutely Bookworm, hubby here "just wants to be helpful". He also wants me to "start treating me like a normal human being" (until I do he is refusing to "tick the box" with some important business matters, which need his agreement. Very worrying.
Telephone calls here are made, but not until after a long time - some need to be done sooner rather than later and so I have learned to shut my mind to that now. They will get made, but leaving them can hinder future onward needs - like following up another company afterfirst call by which time, because of delay in phoning first the second company has closed. Hubby works well with inanimate objects (I sometimes feel that I am regarded as one of those now). So when I told him that I needed to fill the windscreen water bottle before we went out and he could not understand why because he had filled it ten days previously (he had not driven car) he then became verbally aggressive to me and telling me I was ridiculous (it was the new learning that I was going to fill bottle that he could not grasp?). After lunch I was speaking with him and he said he did not understand. I said ok I'll say it again, and in shorter sentences. Very nicely said. He then went abusive calling me patronising. I left the room saying I was going out of room and he said "there you go running away". Being here has given me strength to self protect - I know I keep saying it, but it is true and I never thought I would be able to care about me. May I please use this thread to say to Necion "no way possible in what you suggested I should do this afternoon". Lx

 

[Logan]

Following on from Bookworms posting "Fear". I have today asked hubby if he is frghtened or worried about what might be happening etc etc. No he is not. To me he has no real perception of what might be in store. He too, in my opinion, is in denial. He is ok if he has no interaction. Is still very kindly in many way, but only if he is within his brain. So, very sadly, it seems that I am not allowed to enter his brain. Me of All People. Yet I am the one on the outside who can see, feel and sense what is happening. He would be ok if there was some "proper" diagnosis but until then he keeps saying "there is nothing wrong with me - I am just getting old" - he is 68 this year and this has been going on for 13 years or so. I am younger than he is!!! Not much though. So if one cannot feel Fear because that part of the brain has been disrupted. Can Danger, which is "new"?, also not be observed? If so then that is worrying. Lx

 

[Necion]

(Logan, tee hee hee....it was only a suggestion!)

O.k, just realised our bank ..which used to like to say 'yes', now dosen't even understand the question!...opens late today, so I'm back here for a mo.

Yes Yes Yes....that's exatly it! Whatever the medics say re diagosis, I'm sure we're onto something here which we can use to all help each other with this particular area.
Not concentrating enough to go into much just now, but it's such a relief to know I'm not barking up the wrong tree! Woof Woof.

As we know, when we've seen one person with dementia...we've seen one person with dementia....nevertheless..(notice the use of communication as another thread) we also know research has a long way to go, so we can't dismiss our findings (from experience) just because the professors haven't told us yet!

I'll leave us with this thought meantime...assuming that these 2 memory functions are separate as we've been told, it's up to us as 'carers' to learn how to figure out the difference in the two, to make our own lives livable, if nothing else!
Amateur psycology, probably, but that's life - whether with an ill person, a child, work....any situation in life, so if it's doing no harm I'm certainly willing to put the effort in.

Sue, I don't know the answer to your question about 'parts of memory', I so wish I hadn't deleted that programme recording.
Check your TV guide for something like 'an insight into the human brain' I'm sure the name was something like that. We only use Freeview, so those with Sky may come upon it, or in a different part of the country. It was on for a few weeks, but I missed most of it!

Logan, may I make an observation, please don't take offence, I certainly don't mean to be patronising...but would you say your problems with getting hb to 'understand, accept' could be likened to trying to get a visually impaired person to 'see' a picture you held in front of them??
That's how I'd describe my initial 'problems' with Johns abilities, thought he was being stubborn, awkward, selfish, even cruel...until I understood he couldn't help it! It was almost like I'd been punishing him for not understanding that he couldn't understand certain things, and it turns out that the illness IS that he can't understand certain things!
Obvious or what!

Off out for a wee while now, take care all,
Love, Necion. xxx