Dealing with Dementia

[Richard (OldStager)]

Yesterday, I spent most of the day attempting to talk with an elderly relative with the condition, and I was stunned that in just two weeks how much this has advanced. I had to ring him many times as he kept pressing buttons and hanging up on me.

 

He was once a surveyor at BR back in the day, and went on to have his own estate agency, talking yesterday with him was like talking to a 5 year old.

 

A dreadful, cruel and awful thing for someone to endure.

 

During what was a 34 min phone call , I got about 40 secs of what I considered intelligent conversation, the rest of the time being asked who has 'moved' all the buttons on his phone ( they hadn't moved he had forgotten what the icons mean on each key).

 

A further call to his daughters revealed that this is standard behaviour these days.

 

I watched a fair few YT vids last night, one was quite helpful on how to talk to someone with the condition , so I will try some of those suggestions.

 

Don't know why I posted this really , other than to say I feel for both the sufferer and the families dealing with it.

[Dave Eastwood (Gadgetman) - Club Chairman]

Yup, there are many different types of dementia, and their progression can vary quite a lot.

 

My Mum suffered from vascular dementia, which very much works on plateaus; so there will be a certain level of deterioration, and then it will plateau at that for an indefinite period of time. In the early stages, it can be weeks, or months, years potentially. It can also be so mild it’s easily mistaken for other issues that affect brain chemistry, like UTI’s etc.

 

Then, out of the blue, the “victim” will drop to another plateau, with more a little more obvious/severe symptoms, and again it’s an unknown how long that stage will last. In the early days at least, the time periods don’t really seem related, towards the end, they do seem to shorten though.

 

A common one before things got really bad for us, was forgetting a cardigan or something, leaving it in the bedroom, and then needing to send you upstairs for it, as she was cold. (Mobility was a secondary problem). 
 

Only thing was, she lived in a bungalow, and had done for thirty years. But would get really distressed and angry if you didn’t go upstairs.

 

Its an evil, horrible b******d of a disease. You watch loved ones die repeatedly in front of your eyes, as the deterioration progresses. For the family it’s like a death by a thousand cuts. Every little change feels like it rips a piece of your soul out. The early days for the patient have some terribly bleak moments, too, I’m afraid, as you see the fear and confusion in the eyes, when the different realities clash in their minds, yet, they are still able to recognise, in the more lucid moments, that some recent memory or thought cannot be right.

[Richard (OldStager)]

Yes, my uncle's is vascular as well, he lost his wife 3 years ago and that also has had a huge effect as well, he was diagnosed 12 months ago , prior to that diagnosis I had so many weird and bizarre conversations mostly revolving around things he see's that aren't there, police were called one day when he called them to say vandals were trashing his garden, cops arrived and it was a tree blowing in the wind.

 

For me personally, he was the member of the family that always had the right answer and the person you went to first.

 

One vid I watched last night, the families were saying it's like seeing a person die, yet they haven't yet.

 

As soon as I have had my 2nd jab a trip to the Wirral is planned, before its too late, and whilst he still remembers me.

 

 

[Dave Eastwood (Gadgetman) - Club Chairman]

2 minutes ago, OldStager said:

One vid I watched last night, the families were saying it's like seeing a person die, yet they haven't yet.

Yes, many times, as they slip further away.

 

Its almost spiteful how it can work sometimes before the progression has got towards the end. It can put a moment of relative lucidity, right after a sufferer has had a really distressing episode, so they, without properly understanding, know something bad is up. It’s terrifying for them, I do wonder sometimes, if it even encourages them to sort of let go and surrender to its advance.

 

But seeing the fear and terror in the eyes of someone who’s known you all your life, when they can’t recognise you any more, as you look after them lives with you for ever after.

 

There is a modern approach of going with, and almost kind of participating in the delusional stages, as constant correcting can be distressing and harmful to the sufferer. You do have to be very, very careful of this. In some cases this reinforcement can make things catastrophically worse. (Happened in our case, several times during extended hospital stays.)

[Stuart]

Coincidentally we watched 'The Father' last night.  Moving and thought provoking.  If you haven't seen it then might be worth a watch.  It's a diabolical disease which affects so many

[Richard (OldStager)]

4 minutes ago, Stuart said:

Coincidentally we watched 'The Father' last night.  Moving and thought provoking.  If you haven't seen it then might be worth a watch.  It's a diabolical disease wich affects so many

Thank you, I hadn't heard of that one before, just 'Wiki'd it and I see it has Hopkins in it, must be good then, fine actor. Will watch out for it.

[jeff oakley]

If there is any saving grace with dementia it is that the person usually does not know once it has hold of them.

 

My dad had Parkinson disease and the first signs that he was suffering with dementia brought on by it was when he leant over and asked me how many kids we had, we our only daughter was sat next to me.

 

Sadly my mum handled it badly as "mental issues" in her day were treated by pulling yourself together or off to the looney bin. So she ignored it for too long.

 

Once he got the correct meds it stabilised but steadily got worse. As it did so he was in a different world and one where outwardly he was happy. What it was was cruel for us to see him childlike and helpless.

 

That happiness continued until as Dave said they change dramatically.

 

I was lucky as my Dad right up to the end recognised my voice and then he was with it for a moment or two and for me it was just sitting and listening to him chat about things that had happened or hadn't often not but letting him speak for as long as he wanted.

 

The hardest part was leaving him, as we lived 200 miles apart and he was in a home, it was like waving a child goodbye who was suddenly lost and afraid, but as I said fortunately a few moments later he was fine in his own world.

 

The loss of dignity, the loss of his facilities was cruel but against say cancer, it was easier for him much harder for us. No one is safe from this and it does not matter how intelligent your are it is indiscriminate.

[Richard (OldStager)]

Thanks for that Jeff, my uncle at first denied there was anything wrong, yesterday for the first time he said he knew he was ill, but doesn't know why.  Regarding the 'mental issues', yes I have had the same said to me as well by, coincidentally my uncle's wife ( my aunt) , was just that generation I guess. I have a film to watch in a bit on the subject, so hoping to see what it's like being the person who has it - just to understand what goes on.

[Richard (OldStager)]

@Stuart

Thank you, I managed to just watch it and wow.

Kind of speechless really.

 

 

[clansman]

9 hours ago, Dave Eastwood (Gadgetman) - Club Secretary said:

Yup, there are many different types of dementia, and their progression can vary quite a lot.

 

My Mum suffered from vascular dementia, which very much works on plateaus; so there will be a certain level of deterioration, and then it will plateau at that for an indefinite period of time. In the early stages, it can be weeks, or months, years potentially. It can also be so mild it’s easily mistaken for other issues that affect brain chemistry, like UTI’s etc.

 

Then, out of the blue, the “victim” will drop to another plateau, with more a little more obvious/severe symptoms, and again it’s an unknown how long that stage will last. In the early days at least, the time periods don’t really seem related, towards the end, they do seem to shorten though.

 

A common one before things got really bad for us, was forgetting a cardigan or something, leaving it in the bedroom, and then needing to send you upstairs for it, as she was cold. (Mobility was a secondary problem). 
 

Only thing was, she lived in a bungalow, and had done for thirty years. But would get really distressed and angry if you didn’t go upstairs.

 

Its an evil, horrible b******d of a disease. You watch loved ones die repeatedly in front of your eyes, as the deterioration progresses. For the family it’s like a death by a thousand cuts. Every little change feels like it rips a piece of your soul out. The early days for the patient have some terribly bleak moments, too, I’m afraid, as you see the fear and confusion in the eyes, when the different realities clash in their minds, yet, they are still able to recognise, in the more lucid moments, that some recent memory or thought cannot be right.

Second that Dave , my mum is also suffering the same vascular dementia.  It is a horrible disease and I hope they are not suffering as the family who deal or try to deal with it are suffering. 

[Stuart]

24 minutes ago, OldStager said:

@Stuart

Thank you, I managed to just watch it and wow.

Kind of speechless really.

 

 

@OldStagerit's certainly powerful food for thought 

[Richard (OldStager)]

Small update to this, yesterday I spent most of the day on the phone, the family arranged for my Uncle to try a care home, he was sold the concept by calling it a hotel. The first day the staff could not cope with him too well and said if he doesn't settle down he would need to return home as he was upsetting the other residents. He has since settled it seems so we all hope this continues.

 

He has said he now hates all his family ( myself included) for doing this to him, but I know it's not really him speaking as he couldn't be a more loving and caring person to all his family. There is no way he can return home to live alone again, even with care staff visiting daily, he forgets that there is food prepared in his fridge, leaves doors open all night and doesn't wash or dress himself anymore.

[Dave Eastwood (Gadgetman) - Club Chairman]

Hmm, depending on the progression, you may find they end up needing somewhere that really specialises in looking after dementia patients.

 

Some of the dark places patients get trapped into, in their minds, can be a long way from what non-specialist homes are able to cope with.

[Richard (OldStager)]

Yeah thanks Dave, it is supposed to be a care home that caters for this , I think his first day was such a shock he just freaked out, nothing physical just words. I did actually ring him last Sunday ( whilst he was still at home) we can normally chat for an hour or so, but Sunday the call lasted 2 minutes, he couldn't really string a sentence together that made any sense and when questioned about things took a good 15 seconds to reply ( a long time when you are on the phone), I suspect that perhaps as this progresses he will need more focused care , but we will see.

[Trevor Little (Trevturtle) - Treasurer]

An old Panorama episode  Living with Dementia Chris's Story, here.

Very good as it provides a view from both Chris and his wifes experience