Off Topic Alzheimers

Good the see the not606 happy family getting along as usual..

Tough topic this one.

 

Never intended this thread to be a contentious one.

 

The only one I'm talking about is ME. If you read what I said it's what I want to happen to ME.

And my aim is, if this awful illness strikes, to try to be as little trouble to my family, and the world in general as I can possibly be.

 

Euthanasia.. Different ball game. Equally as likely to cause a stir.

 

Why share it then?

 

hmm . Not buying it fella. It's only a small period of the illness your awareness to things like basic comfort and a need for stimulation goes, even in the most confused state a suffer is still aware and has a need them. For the love of god don't do this to anybody else until you've done it to yourself and made yourself suffer.

 

He's like Relic merged with Cest. Cest only ever made his statements as a thread starter though with his important hat. Pretty sure all names mentioned including Poly overlap

 

There is no emotional or moral feeling in all this or what you or your loved ones are going through. Go on a Dementia Awareness course and you'd see it differently. A cold heartless person may follow that doctors advice but no one chooses what life throws their way. How we react is the making of us all. Still it does'nt get away from the awful impact ot this disease though. Euthanasia could be the way ahead for end of life illnesses. But not yet.

 

I can relate to all of that mate. My mother and father left a will which basically left everything to my kids, the house and a very small amount of cash. Unfortunately my mother went first and my old man was in the very early stages of Dementia, we didn't know at the time and just thought it was an old age thing with him. As the disease progressed he got much worse very quickly and after a series of events which culminated in the Police Rescue teams searching for him after he'd gone missing one night. He had bypassed all the security systems we had installed at his home, went for a walk to the shops, lost his way and was found by pure luck the following morning. It must have cost a small fortune in resources as the helicopters were out, search dogs and even police divers down in the docks FFS!!! Anyway, the end result was that we were told by the authorities that we put him in a home of our choosing, or they would have put him in Cherry Knowle for Psychiatric Evaluation and then they would decide what to do with I'm afterwards.

We chose to put him in a home which turned put to be great for him, and us to be honest. I work overseas so at least I didn't have the worry of wondering what he would get up to next. He'd already dismantled most of his furniture, binned a **** load of paperwork and old photographs, set fire to the house a couple of times and generally just caused havoc .All of that stopped once we got him settled in the care home over in Shiney Row. They were brilliant, but expensive at over £500 a week, he self funded part of it with his pensions and the council part funded the rest. But, this was only because they knew he had his own home and now they are demanding over £60,000 to be reimbursed from the sale of his home. ****ing bastards, ****ing robbing ****s.

Moral of the story, let the authorities commit the sufferer to a care home of their choosing, this way they have to bear the costs totally.

My kids are now £60k less on their inheritance and my mother will be turning in her grave if she knew this, i'm totally gutted by it all and it breaks my ****ing heart to think that I am going to have to hand over that cash to them ****s at the council.

Also I can't get the vison out of my head of watching a once very proud and thoroughly decent man and father, lying there in a hospital bed dying and having to wear a nappy cos he had lost all control of his bodily functions.

I truly hope that none of you ever have to experience this horrible disease, it's horrendous and so, so cruel. I've told my kids that if I ever get, just take me out, get me pissed and stoned then just chuck me over a bridge somewhere. Obviously the won't, but it would be a much more humane way to bow out if they did.

 

I'm certainly not defending anyone here, but how can it be dignified to have a complete stranger wash you, feed you, clean up your mess, wipe your arse after you've shat yourself? that isn't dignified at all mate.

 

Stephen Hawking can't wipe his own arse, do you assert that he has no dignity? There's a lot more to being dignified that just being able to wipe your own arse. It's about respect and honour. Perhaps somebody wouldn't choose to have another person clean up their mess, but having somebody do so, doesn't make the rest of who they are null and void.

Besides, it's not about the last stages where the patient can't clean themselves, many sufferers go into homes long before they lose the ability to do such tasks. My gran was put in a home because she was found wandering the streets at 4am in her dressing gown, she was having lapses of clarity, it wasn't 24/7. We deemed her to be safer in care, good care that cost a fortune, but that never mattered none of us wanted her money.

 

That's not strictly true Bri. There are several stages to the disease, each one progressively worse than the previous, although each individual are effected differently. The early stages are short term memory loss and from the outside appear similar to just old age forgetfulness. As time goes by this transforms into longer term memory loss and eventually total memory loss. But some sufferers can go straight into the latter stages, it just depends on the severity of their condition.
That said, even in the later stages my Dad always recognised and smiled when my daughter visited him, so he obviously knew who she was, he couldn't say her name or even mine for that matter, but he knew who she was without doubt and was always happy to see her. He used to talk just total jibberish to us, but he knew we were there and who we were.

 

Totally empathise with this experience as my 86 yr old mother in law with vascular dementia used to go walking late at night - police helicopters etc out - so distressing but we now have a secure Telecare security system in her house and on her front door as we are fortunate to have the time available to care for her at home where everything is still familiar to her. Its an horrific emotional time for relatives and friends with no easy end route - no winners at all.
Stay strong and positive is all we can do.-

 

No mate, I fully agree, we did the same with my dad as it was the best option for all concerned and my only regret is that I didn't seek professional help sooner. Money doesn't come into it when it's your family mate, you just do what is right for them and **** the cost.

I might have worded it badly but It's not just about having some one wipe your arse so don't get hung up on that, I was trying to make the point that it is undignified, I think it is anyway.

 

We had this as well mate, but it doesn't prevent them from leaving their home, it just lets the authorities know that they have left. The system we had in place would trigger a signal if the door had been opened, telecare would then call the house phone and speak with my dad, or in most cases he'd already left the house so they then notified the police. Plus my dad somehow managed to find a way round this and thought he was being clever cos he would deliberately leave home just cos he could. Like a sort of '**** you' type thing.

 

Those parts are obviously, but it doesn't strip a person of their dignity altogether. Perhaps I'm splitting hairs.

I just don't think Poly had any tact with his stupid comment there.

 

Maybe not mate, but I know, from personal experience, like you also, what this disease does to a person. There isn't a good outcome, it's a one way ticket and there's no way back from it. And it's not a very pleasant journey for either sufferer or their families.

Thinking back to when all this started for us, I remember being shocked at what we were told by the authorities. We had this fantastic Social Care Worker who came to my house to give us advise as we had been told that either we put him in a care home at they would, we chose the former and i'll never forget what she told us. She said if it were her or any of her family, there are only 2 care homes in Sunderland and surrounding area's that she had total trust in. That's a ****ing shocking state of affairs mate and obviously we chose one of the 2 that she recommended, but aren't those shocking statistics FFS?

 

Exactly so it makes the comment all the more stupid as far as I'm concerned. The aim simply has to be to make the patient's last years of their life as happy as possible and as comfortable as possible. The fact is, he posted that drivel as a plausible solution driven by nothing but preserving assets.

If that guy turned up at my gran's home before we put her into care and muttered that crap, he'd have been force fed his own arsehole, the man's an utter creep.

 

Think you read my post wrong or misunderstood

It is, I'm talking about the 7th and final stage, given most people die in stage 6 I think it's fair to say only a small part of the illness hits the area where you lose control of the subconscious, . Stage 7 is virtually vegative in the sense you lose the subconscious function, namely the the sensory part of the brain. You can't feel pain or discomfort if you aren't aware of it. But most people die in stage 6 where the suffer will still feel physical pain, will still feel various stages of discomfort. You dad won't have died in stage 7 mate. He'll have been stage 6, he'd feel pain if you stuck something sharp in him ect, and as you say there will be still moments of recognition. Poly would have himself checked into a **** hole at this point, which is why I was concerned. stage 7 he thinks he's going to get will never come for over 90% of Suffers. Most pass on well before.

 

It's a not dignified illness, all the more reason to seek out the best standard of care available, because good carers and good well funded care homes put dignity right up there in their duty of care.