Our brains - not theirs

[jc141265]

Philosophical Ramblings - Warning may be too deep and bizarre for some

This is just one perspective on what I think carer's anger may stem from, feel free to come up with your own....

So many of us caring for loved ones with dementia hate ourselves for getting angry with our loved ones when we know, we know oh we know, we know sooo well that its not them its the disease, so what do we do? We get angry at ourselves for being angry and then we are just angry grumpy bums all the time, and that just makes us angrier! One might start to laugh hysterically about it and then end up in similarly hysterical tears if one thinks about it all too much! Its ridiculous, so why do we do it?

This is my guess. Anger is our brain's way of coping with this. Our brain like our loved one's is taking control, despite what our heart tells us we should be doing. Unlike our loved one's brain's manner of taking control, our brain in our case is doing this to protect us. (Theirs is malfunctioning, ours is doing what it is programmed to do)

Can you think about what this disease truly means, can you truly imagine all the things that are going to come from this experience? My guess is you can't, not really and if you can then you are really struggling to cope because your brain is no longer protecting you with denial and anger. I know my Dad is going to go through unimaginable hell in the coming years and I know I am going to be in pain throughout too, but I really can't truly imagine it and if I try, my brain immediately tries to make me stop thinking about it, and quite rightly so, because what good is it that i not only go through the pain when it happens but think about it coming as well?

When we get angry about this I suspect its what our brain does as a last resort, we get angry at times when this disease is right in our face, we can't deny, our brain can't just try to make us think about other things, so it decides to release the angry chemicals, because it knows to do otherwise is inviting disaster. Our brain knows, in its subconscious that well turned phrase 'you can't handle the truth', (say it with an American accent, its more fun that way ) so anger is its last resort diversionary tactic.

So next time you get angry at your loved one, and get angry at yourself for being angry, realise that you too just like your loved one has an excuse in a way for this behaviour. Just like your loved one, your brain is making you do this! Conscious logic is no match for what the subconscious thinks is necessary. Take a deep breath and walk away from the situation (if thats possible) your brain will stop freaking out that you nearly threw yourself over the cliff of true realisation and will stop firing off the angry chemicals in its attempt to divert you from what it sees as emotional suicide.

Anyway thats what I suspect all this anger stems from, I could be completely wrong, but thought some might feel relieved to think that perhaps they're not the horrible monsters they believe themselves to be but are instead in possession of a brain that is doing the best it can to protect itself in this situation.

Also, recognise that sometimes our brain fails in this protection, I and a few others I know on here fell into the deep chasm of a 'depression' (I don't like that word) of sorts that comes immediately after you do fall over that reality cliff. So do try and protect yourself from this, because its a terribly long way to fall and very dark down there, but also know that although your brain failed you once, it will try to find a way out for you eventually. Talking Point may just be the rope it was looking for.

 

[Nell]

Hi Nat,

I think there is a lot in what you say. I'm often concerned when reading this board that people who are doing a superhuman job already are blaming themselves for not being perfect. That way lies nothing productive for anyone.

I know my Dad is going to go through unimaginable hell in the coming years

Do you know . . . . I really wonder about that! I have worked with people with intellectual disabilities for over 30 years and have consistently noticed that the things that cause us worry or pain are often less important to them. This is not true for everyone or for anyone all the time. But as an overall rule, I find it holds true.

I suspect that as our family / friends / loved ones become more deeply affected by the disease, they become less aware of such things as loss of personal identity, loss of personal freedom, etc. I would be interested to hear if others agree or disagree.

My Mum is recently diagnosed and my Dad is moving towards that. I think their present stages might be the worst for them in some ways, when they are acutely aware of their losses but do not have the mental ability and agility to grasp what or why this is happening.

Please could others offer their opinions? I hope I'm not just deluding myself.
Nell

 

[Brucie]

We're all in suppositionland here and as dearly as I'd love to believe that your thoughts are true, I have looked into Jan's eyes, and from what I see there, I don't think you are correct, for Jan's case.

Certainly a lot of the veneer stuff [personal freedom etc] is no longer important to her - or to me - but she knows the reality of her situation.

I've looked into Jan's eyes in many different ways and in many different places over the past 40 years, and I can read them.

 

[blue sea]

Hi Nat and Nell and Brucie

What a thought provoking discussion!

I agree with a lot of your points, Nat. I certainly feel that a lot of my emotions are displacements for other, even more powerful emotions that I fear will grip me if I don't fill my mind with 'easier' ones. e.g I find it easier to feel angry about the fact dad's friends rarely contact us than explore the terror I have about how this illness will progress for him, how I will cope with his dying. The whole situation seems like a nightmare, in fact I regularly have really bad dreams about it. It's like a horriible fairy tale where the monster/ dragon / wolf threatens to destroy your normality - with the knowledge that that is exaclty what will happen, there can be no happy ending (unless you call death just that, in some ways I suppose it is). I do feel I shut out a lot of my feelings as I'm scared to let go in case I can't regain myself and lose the ability to cope. I know that's supposed to be bad for you - to 'bottle things up' and I have found TP really helpful as a way round that. it's a bit like the therapy of writing a diary, with the huge bonus of a shared 'family' who will respond and support.

Nell - my experience is like yours. The worst time for dad was definitely (in my view) when he had some awareness things were wrong. Now it is as though parts of his mind just no longer function in terms of emotions. He never notices if I cry in front of him (I try not to of course!). The signal of tears doesn't link anymore to an emotional response. He has lost the capacity to worry as he can no longer anticipate or think ahead. He does still get angry ( eg about having to be washed, changed), but seems to have no embarrassment about his incontinence. the anger is more because he doesn't see why he has to take his clothes off etc. Perhaps the emotions are still there but are not experienced in the same way, certainly they can no longer be expressed in the same way. I still get glimpses of them, though. I can't read him like Brucie can Jan, or Nat her father but still feel a bond. However I find that as dad has got worse I have started distancing myself from him emotionally. I feel guilty about this. I sometimes look at him and feel as though it is someone else - not my dad. The more I search for what he was, the more painful is the gap between what he was and what he is now. My love for him is as deep but I can't bear to face the full horror of how I feel about what has happened to him. So I try to avoid those thoughts. Is this my way if preparing myself for the final goodbye? I know this illness is sometimes described as the long goodbye. When I'm in his room i look at the photographs on the wall of all the celebrations we shared as a family. They should bring back happy memories but at the moment they just sharpen the sense of loss.

Sorry - this post is getting more and more miserable! Will stop before I send anyone else into gloom.

Blue sea

PS have just read this through and think it's unbelievably muddled so hope it make sense to you at some level.

 

[Charly]

My view

These are my thoughts on it all...

If you care for a toddler who has tantrums, knocks things over, pee's all over your furniture, says things which don't make a word of sense and does what you have just asked them not to do - you are forgiven for being sharp, harsh and angry.

Why? Because your brain accepts that a toddler does not understand that these things drive you crazy and it accepts that they "know no better" so to speak, but that they will learn in time.

To tolerate, accept and understand a child's "terrible two's" is relatively easy - (although still difficult) because it is a "normal" stage in life, which will be outgrown within a short space of time.

You have children and fully expect this stage to come and go….and this is the problem...

Your Mum or Dad, Husband or Wife, you met or always knew with all faculties intact. Most will have been extremely proud, intelligent, witty, and thoughtful and caring all rolled into one, and that is how your brain knows this person.

Suddenly - they are sadly no longer the person you - or your brain knew.

This becomes a hell of a challenge when you have to come to terms with the fact that this is not something, which is short term - it is there for good and will only get worse.

Your brain takes over and makes you angry because it cannot accept this person's illness. It knows nothing about it. It cannot grasp what the hell is going on, so cannot take over for you and offer the comfort of it being a "phase" which they are going through.

It cannot shelter you from the fact that you have been cheated out of spending your life with that person - as you knew them.

God only knows that you have the right to be angry.

You are not a monster because you are angry. You are not heartless because you lost your temper and shouted. You are totally human - whose brain is not equipped to dealing with this, but whose heart is taking a crash course in it.

God only knows that you are doing a hell of a good job.....

With love,

Charly. x

 

[jc141265]

I believe he's still there

Brucie,

Just wanted to say I know what you mean, regarding that look in their eyes (though maybe not everyone suffers, maybe our loved ones are the unlucky ones). I think Dad has resigned himself somewhat to his fate, but I still think if he continues with his current awareness, the next few years will be hell for him.

So many times he gives me a look, pauses, closes his eyes, like a person ready to cry and trying to hold themself back and then he eventually opens his eyes again, and a tear runs down his cheek. I keep telling myself its his gammy eye, but the look, the mannerisms suggest otherwise, even without the tear, the look is enough. Its a 'oh god help me' look. Perhaps if he would stop making it so obvious that he clearly understands what I say every now and then (and thus perhaps all of the time and he just can't show me he understands at other times??), I could believe he was 'gone', but just when you think he has 'left the building'. He'll do something like try to get up immediately after I say to him, 'Do you want to go for a walk?', or I'll say Mum's coming down tomorrow and he will say 'When?' clear as a bell, when I haven't heard a real word for weeks. He still appears to hate having dirty pants, he doesn't react like I would to such a thing , but again I think it is resignation rather than lack of feeling. He immediately gives Mum a kiss whenever she comes (I can't account for his taste but I have resigned myself to their love hate relationship a long time ago) and does so for nobody else, and appears to listen extra hard whenever I talk about her next visit. He responded with new words, 'Oh boy, oh boy, oh boy' when I told him the day before my brother visited for the first time in months, that he had to think real hard and try to say something to my brother so he would know his dad was still there and you should have seen the excitement in his face when Mum told him about new brain stem cell research advances (before he got bad he made his case directly to the Prime Minister about the need for laws to allow this research, by speaking to him about it when he was in our city). Despite the constant barrage of evidence that he is still there I question myself every day, could I be imagining it, am I seeing what I want to see? But I'm not the only one who sees it, and I think the chances of him so apparently meaningfully responding so many times are too numerous for these to be just random reflexes and reactions.

Last but not least as we often say each dementia case is different, and I notice with Dad, unlike many of the older dementia patients at his home that any twists to the real world come to him while he is in the 'real world' whereas other dementia sufferers appear to live in another world and occasionally come out. Dad never got confused with his present and past when he could talk, I can explain to Dad that his hallucinations are hallucinations that reflections are just reflections and he is able to control their affect on him from that moment. He appears to be constantly in the 'real world' trying to make sense of what is appearing to him, but his logic appears to still be intact somewhat. Others appear to be in their 'unreal worlds' and make the 'real world' fit into that. Am I making any sense? He still appears to know that he is suffering from delusions whereas other seem blissfully unaware.

I think this is why this experience rips my heart out, because he appears to be trying so hard to hold on, he appears to be struggling every day to find news ways to keep his brain working as best as he can. He being an ex programmer used to be a bit obsessed by how the mind works and used to have a theory about how the human brain stores information. We used to say to him in the early days when he couldn't think of 'the word' he wanted to say, look for another path for it Dad, its in there somewhere, and he managed quite well for a long time, burning/ hardwiring new paths to get to the same information he used to get by a different means. Sometimes I wish he hadn't been so smart to begin with, even the doctors have said they are amazed by the amount of functions he still has when they have seen what is left of his brain in recent scans, they say it shouldn't be possible.....