Off Topic Alzheimers

[red&white wanderer]

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.

We have the doors all locked smoke and CO alarms linked to Telecare plus a keysafe. She wears a falls sensor connected to Telecare but apparently her Social Worker says we needed a Deprivation of Liberty Order (DOL) via the courts a 18months ago and it is still being processed - a bit murky this imo. She's safe and obviously didn't want to go out late at night in her nighty being vunerable.
System is mad at times - in fact most of the time - ground control madness - lol

 

[mackemwelder]

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.

True mate, although obviously I never did this, but he was aware of pain and discomfort.

 

[mackemwelder]

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.

So very true mate, I've spoken with other families who have gone through this before and i'm well chuffed that I was given sound advice by the authorities. My aunt who also suffered with Dementia was in what I thought was a really nice care home, all fairly new with matching curtains and carpets etc, but I was informed that this is one of the worst in the area. I cannot fault the staff at Springfield House in Shiney Row, their dedication and level of care was exemplary, in fact my Dad had a better social life than I did, they took him everywhere. The gardener come odd job man even took him under his wing and let him help out around the place, until he became too bad and became more of a liability. But you know what? the same man and other staff, all attended my dad's funeral.

 

[mackemwelder]

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.

So very true mate, I've spoken with other families who have gone through this before and i'm well chuffed that I was given sound advice by the authorities. My aunt who also suffered with Dementia was in what I thought was a really nice care home, all fairly new with matching curtains and carpets etc, but I was informed that this is one of the worst in the area. I cannot fault the staff at Springfield House in Shiney Row, their dedication and level of care was exemplary, in fact my Dad had a better social life than I did, they took him everywhere. The gardener come odd job man even took him under his wing and let him help out around the place, until he became too bad and became more of a liability. But you know what? the same man and other staff, all attended my dad's funeral.

 

[mackemwelder]

We have the doors all locked smoke and CO alarms linked to Telecare plus a keysafe. She wears a falls sensor connected to Telecare but apparently her Social Worker says we needed a Deprivation of Liberty Order (DOL) via the courts a 18months ago and it is still being processed - a bit murky this imo. She's safe and obviously didn't want to go out late at night in her nighty being vunerable.
System is mad at times - in fact most of the time - ground control madness - lol

We couldn't lock the doors mate, my dad lived alone at that point and was constantly triggering the smoke alarms which then alerts the fire brigade.

 

[Brian Storm]

True mate, although obviously I never did this, but he was aware of pain and discomfort.

Sorry if I've come across impersonal in this but my only experience has been professionally. I was key worker to a gentleman with Frontotemporal Dementia(very rare, hits people in their late 30s early 40s). Completely in the wrong unit. I don't have much of an emotional attachment to dementia, just a professional one. From my point of view dignity and risk assessment is without the most important things with this, just from a professional perspective.

What happened to that man was just awful. Trying to maintain his dignity required 2-1 care while awake and 1-1 while sleeping. He died after I left the company but he never saw 50.

 

[mackemwelder]

Sorry if I've come across impersonal in this but my only experience has been professionally. I was key worker to a gentleman with Frontotemporal Dementia(very rare, hits people in their late 30s early 40s). Completely in the wrong unit. I don't have much of an emotional attachment to dementia, just a professional one. From my point of view dignity and risk assessment is without the most important things with this, just from a professional perspective.

What happened to that man was just awful. Trying to maintain his dignity required 2-1 care while awake and 1-1 while sleeping. He died after I left the company but he never saw 50.

That's crap that mate and don't worry, I never took it the wrong way, but imagine getting an illness like that at his age? absolutely horrendous. My heart goes out to people like that and total admiration for the people who care for them.

 

[Brian Storm]

So very true mate, I've spoken with other families who have gone through this before and i'm well chuffed that I was given sound advice by the authorities. My aunt who also suffered with Dementia was in what I thought was a really nice care home, all fairly new with matching curtains and carpets etc, but I was informed that this is one of the worst in the area. I cannot fault the staff at Springfield House in Shiney Row, their dedication and level of care was exemplary, in fact my Dad had a better social life than I did, they took him everywhere. The gardener come odd job man even took him under his wing and let him help out around the place, until he became too bad and became more of a liability. But you know what? the same man and other staff, all attended my dad's funeral.

Care homes are funny and tough to research. Private doesn't mean better, most private care home are just capitalist companies who jumped on privatization by the Tories in the late 80s, lots of these 'private' care homes have 100% occupancy of state funded patients(At much more cost per patient/resident than a council funded home too) Also like you say, the aesthetics can fool a person too, the visual effects of the environment is what lures the customer. But the nity-grity is in the care plan and how the home spends it's resources. How many staff per patient, the % of staff who've undergone adequate training. You've got to drag this information out of them(it's like blood out a stone) and you've got to keep on their backs to supply evidence of adequate care long after admittance.

Unfortunately the care sector is riddled with under funded social homes followed by an alarmingly unhealthy amount of capitalist there for profit private home charging the tax payer an absolute fortune and spending as little as possible on the actual care. It's an area which needs radical reform. Don't get me wrong POVA(Protection of Vulnerable Adults), the industry watchdog are really good, they're just fighting a losing battle and need a bit of political support in what's become a very difficult area to govern.

 

[Brian Storm]

That's crap that mate and don't worry, I never took it the wrong way, but imagine getting an illness like that at his age? absolutely horrendous. My heart goes out to people like that and total admiration for the people who care for them.

When he arrived, I read his file like I did with all new service users and the early stages of his illness was really bizarre. He went from having a girlfriend and working for a very famous hi spec British car manufacture to hanging around the local shops pulling down the shutters and barking at people over the opening year of his condition. By the time he came to us he'd lost the ability to speak, control or his bowel and bladder and had developed out of control ocd behaviors(the reason give for him being with us but he did not have a learning disability and should never have been there) and was completely detached from reality. Except when his Family came. He'd always fly out of his chair to his mum for a hug. The only time he'd ever show acknowledgement or understanding of the world around him. Heartbreaking story.

 

[polyphemus]

No mate, I fully agree,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 we did the same with my dad **** the cost.

.

The money though is important to me.

I've been fairly lucky, considering I live in this area as since starting my first job on leaving school, I've never been out of work.
And I've always been a saver. Being brought up in a one parent family in Hendon, living off National Assistance, (£3-11s-6d a week) tends to make you careful.

The cash I have saved and the house are things I have plans for.
Of course it's impossible to plan completely, not knowing just when your time will come, but I appear to have reasonably clever Grandchildren.

This cash and assets were never for us. I have all I want from life, but they will need some help.
I'd like to be able to give it.
And while, if it's the wife that get ill she will get the best, if I'm the last one I'd simply like it done as cheaply as possible.
Whether that happens, (IF I get it) I won't know, but it's what I'd like.

I'm not clear why this is considered to be a selfish approach, but my signature just about covers that!

 

[red&white wanderer]

We couldn't lock the doors mate, my dad lived alone at that point and was constantly triggering the smoke alarms which then alerts the fire brigade.

Pity but we all cope as best we can. My mother in law is living alone but we have carers going in 3 times a day and at bed time.
But that DOL order is ongoing.

 

[mackemwelder]

When he arrived, I read his file like I did with all new service users and the early stages of his illness was really bizarre. He went from having a girlfriend and working for a very famous hi spec British car manufacture to hanging around the local shops pulling down the shutters and barking at people over the opening year of his condition. By the time he came to us he'd lost the ability to speak, control or his bowel and bladder and had developed out of control ocd behaviors(the reason give for him being with us but he did not have a learning disability and should never have been there) and was completely detached from reality. Except when his Family came. He'd always fly out of his chair to his mum for a hug. The only time he'd ever show acknowledgement or understanding of the world around him. Heartbreaking story.

My dad was like that mate. If I went in to see him, he knew who I was and in his own little way and used to sort of acknowledge me, but when my daughter was with me he would suddenly perk up and smile. Strange like cos there was obviously some form of recognition left in his head but for most of the time he was in a vegetative state and never communicated with anyone. Well, not in a way that anyone could understand.

I took solace in the fact that he was at least safe and being cared for by some fantastic people and was getting fed better than most other pensioners on the outside.

 

[Brian Storm]

My dad was like that mate. If I went in to see him, he knew who I was and in his own little way and used to sort of acknowledge me, but when my daughter was with me he would suddenly perk up and smile. Strange like cos there was obviously some form of recognition left in his head but for most of the time he was in a vegetative state and never communicated with anyone. Well, not in a way that anyone could understand.

I took solace in the fact that he was at least safe and being cared for by some fantastic people and was getting fed better than most other pensioners on the outside.

It's all you can ask for mate. A good standard of care.

 

[mackemwelder]

It's all you can ask for mate. A good standard of care.

But as you well know Bri, most don't get it. We were lucky to be well advised otherwise we would have chosen a home closer to where he lived, Washington. But as soon as we mentioned this to the wife who was advising us, I knew by the look on her face that we had to look outside the area for better. And for anyone out there facing a similar dilemma, I can thoroughly recommend Springfield Care Home in Shiney Row. It's hard to spot as it's tucked away, but it's directly opposite where the Shiney College entrance used to be and you'll get very good quality care in there.

 

[Brian Storm]

But as you well know Bri, most don't get it. We were lucky to be well advised otherwise we would have chosen a home closer to where he lived, Washington. But as soon as we mentioned this to the wife who was advising us, I knew by the look on her face that we had to look outside the area for better. And for anyone out there facing a similar dilemma, I can thoroughly recommend Springfield Care Home in Shiney Row. It's hard to spot as it's tucked away, but it's directly opposite where the Shiney College entrance used to be and you'll get very good quality care in there.

Well I'm out of touch with the industry now so don't even know if there's any good in the area. Be a massive shame if there isn't like.

 

[mackemwelder]

Well I'm out of touch with the industry now so don't even know if there's any good in the area. Be a massive shame if there isn't like.

From what I was told, there are more bad than good mate. Sad state of affairs if that's true like.

 

[Brian Storm]

From what I was told, there are more bad than good mate. Sad state of affairs if that's true like.

It will continue to be a problem while the Tories are in power unfortunately.