Communicating and dementia

[longshot]

Has anyone been in contact with the Alzheimer's Society?
There's reluctance to do so in the situation of the person I help care for(it's complicated)and I wondered what they can offer.

Thanks.

[Ruskie]

I was caring for a gentleman the other day who was in a hospital but was adamant he was in his own home and wanted to talk to his neighbour before leaving. The best way I felt of dealing with it was to go with it and act as if his neighbour was there. The gentleman was relaxed and and was happy he had let his neighbour know he was leaving.

[WinstonWolf]

longshot said:

Has anyone been in contact with the Alzheimer's Society?
There's reluctance to do so in the situation of the person I help care for(it's complicated)and I wondered what they can offer.

Thanks.

Not personally, but any help should be considered IMO. It's not really a journey you can complete alone.

[longshot]

WinstonWolf said:

Not personally, but any help should be considered IMO. It's not really a journey you can complete alone.

I agree but heels are being dug in for one reason or another.

[mph1977]

WinstonWolf said:

Don't feel bad for saying it, the ultimate prize in final stage dementia is the sweet release of the long sleep. It's a strange disease, my dad as I knew him died years ago yet his body and organs live on in a stranger.

When he finally gives up I think I think there will be a sense of relief as well as sadness.

which can be both good and bad by turns

often families have done a lot of their grieving earlier in the journey ( when the person with the dementia, moves into 24 hour care, loses the ability to reliably recognise people, loses the ability to have intelligible ( even if utterly off the wall ) conversations , loses their indepdent mobility around the home environment ( whether that's home or a 24 hour care setting) - there's no 'order' of the progression of dementia, again it's the analogy of the disease running round the brains wiring snipping wires or pulling them out at random ...

[FurtiveFreddy]

WinstonWolf said:

longshot said:

Has anyone been in contact with the Alzheimer's Society?
There's reluctance to do so in the situation of the person I help care for(it's complicated)and I wondered what they can offer.

Thanks.

Not personally, but any help should be considered IMO. It's not really a journey you can complete alone.

There is a very good forum called Talking Point they run. I have found it very useful for advice and preparation for what's to come.

[V8covin]

It's good that people are talking about dementia.
The family didn't realise mum had dementia until it had really taken hold,we just thought it was general old age.Mum has never been aware that she has the illness.

[Kiltie]

I'm guessing nothing can be done to reverse or arrest dementia but are there any guidelines for slowing down how it develops?

[FurtiveFreddy]

Kiltie said:

I'm guessing nothing can be done to reverse or arrest dementia but are there any guidelines for slowing down how it develops?

Well, medication is available to help with the symptoms but they do not necessarily slow the progression of the actual illness.

Once diagnosed, it's a one-way trip currently. Perhaps in the future there will be away to halt or even reverse it.

You might find this website interesting for more information of this sort (International Alzheimer's Association Research Center):

http://www.alz.org/research/science/alzheimers_dis...

[V8covin]

Kiltie said:

I'm guessing nothing can be done to reverse or arrest dementia but are there any guidelines for slowing down how it develops?

My mother improved once she came off the medication. The pills were turning her into a vegetable

[longshot]

FurtiveFreddy said:

There is a very good forum called Talking Point they run. I have found it very useful for advice and preparation for what's to come.

Thank you very much for that. I'll pass it on. (You never know).

[FurtiveFreddy]

One of the best pieces of advice you should take if you fear one of your loved ones is heading in this direction is to get a Lasting Power of Attorney in place for them before it becomes too difficult to do.

[WinstonWolf]

FurtiveFreddy said:

One of the best pieces of advice you should take if you fear one of your loved ones is heading in this direction is to get a Lasting Power of Attorney in place for them before it becomes too difficult to do.

You have to do it while they still have all of their marbles.

[longshot]

FurtiveFreddy said:

One of the best pieces of advice you should take if you fear one of your loved ones is heading in this direction is to get a Lasting Power of Attorney in place for them before it becomes too difficult to do.

Done, thankfully.

[mph1977]

V8covin said:

Kiltie said:

I'm guessing nothing can be done to reverse or arrest dementia but are there any guidelines for slowing down how it develops?

My mother improved once she came off the medication. The pills were turning her into a vegetable

which medication ?

there is mis-use and over sue of various psychiatric medications in some places for peoplewith dementia ...

[V8covin]

mph1977 said:

which medication ?

there is mis-use and over sue of various psychiatric medications in some places for peoplewith dementia ...

I couldn't tell you.All I know is she was on the highest strength for blood pressure and took 1 tablet per day for the dementia.
She was gradually turning into a vegetable,you could see he get worse week by week over a period of about a year.
She started to become difficult when it was time to take the pills until eventually she refused point blank.
We saw an improvement in her almost immediately....oh and her blood pressure is fine too.
That's not to suggest the dementia isn't a problem now,it is,but at the moment it's stable.

[mph1977]

V8covin said:

I couldn't tell you.All I know is she was on the highest strength for blood pressure and took 1 tablet per day for the dementia.
She was gradually turning into a vegetable,you could see he get worse week by week over a period of about a year.
She started to become difficult when it was time to take the pills until eventually she refused point blank.
We saw an improvement in her almost immediately....oh and her blood pressure is fine too.
That's not to suggest the dementia isn't a problem now,it is,but at the moment it's stable.

so you r scare story aobut 'medication for dementia' is not necessarily about the drugs that mess with acetylcholinesterase and so on which are proven to slow progression and may in fact be about an antipsychotic or mischosen anti-depressant ( as concomitant depression can make dementia worse or even present as dementia like symptoms .)

[ali_kat]

WinstonWolf said:

longshot said:

WinstonWolf said:

Unfortunately my dad's at the toddler stage and going backwards, it's fking soul destroying

I'm really sorry to hear that.
It's the future we all dread.

Thanks, it's a disease that currently makes a very strong case for euthanasia.

I feel your pain. My Dad is being cared for very well, at home, by my Brother & his fiancé.

6 years ago he was on holiday with me & helped me bury my cat just before we left. 5 years ago we had a driving holiday round Scotland with PhN & a few PHrs, it was noticeable that he forgot stuff, where we were & why, what we were doing & why Mum wasn’t with us. But he knew places. And shocked us with clear memories and knowledge of Naval bases (he did his apprenticeship there)

18 months ago Mum died, he was asking about her when she was in the Hospital & Hospice and for a few days after she died he would ask us “did you want Margaret? She is just in the kitchen”. The night she died he made it clear in conversation that he knew she had died, she was in a better place and no longer in pain. We hadn’t realised he was so aware of what had been going on He didn’t talk much, but when he spoke he could put a sentence together, even if it was about something years ago or utter fantasy, and he really hadn’t said anything, or acted in any way that indicated he knew she was dying. He hasn’t mentioned her since the Funeral (he didn’t seem to know what was going on that day at all), but he went through a 3 month phase of refusing to get out of bed “I don’t feel well”; “I don’t know what’s wrong, my heart hurts, I just don’t feel well”. Mourning Mum I guess.

1 year on… He doesn't know us, he seems to realise he should though, iykwim? He's pleased to see us; but it's like talking to a child that can't speak properly yet most of the time.

He's stubborn (always has been), utterly incontinent yet sometimes remembers that he has to take his pants down (in this case the nappy) but not in time so there's mess everywhere and then he starts to walk and falls. He doesn’t usually like to walk, only it seems when his trousers are round his ankles/knees

There are moments of ‘clarity’, albeit few & far between. He refused to stand up to pull his trousers up the other day, refused tea (not like him) refused toast & marmalade (not like him), pushing them both away when they were trying to dress him & causing the tea & the toast to go on the floor, not with words just mumbles. My cousin who was visiting asked if he wanted a punch in the mouth (something he used to give as an option “tea/coffee/punch in the mouth?” and got a very clear “no thank you very much” and a grin. Then he was back to mumbles and pushing them away

WinstonWolf said:

Don't feel bad for saying it, the ultimate prize in final stage dementia is the sweet release of the long sleep. It's a strange disease, my dad as I knew him died years ago yet his body and organs live on in a stranger.

When he finally gives up I think I think there will be a sense of relief as well as sadness.

[WinstonWolf]

Sounds like we're in a similar place Although I did laugh when he took a well aimed piss in the washing machine...

My dad's been in a home since just before Christmas, we realised he had became too dangerous when he put an electric kettle on the stove and turned the gas on without lighting it!

Mum kept him at home for thirteen years after diagnosis, but we really don't want him blowing her up too. One minute I think he's got days left then the old bugger rallies.

Good luck Ali!

[ali_kat]

Well, you’d have to really what else?

Mum wanted him to go into a home, it was effectively her dying wish... But we knew that he knew where he was & who we were, and that wouldn't be fair - we couldn't have that on our consciences, not when we could look after him better.

Now… well, it’s still unfair on him. In fact we think moving him would kill him; he still knows his house, his chair and he loves looking out at his pond (that he dug/built/maintained) whilst listening to music and playing with his blanket of many bits.

We stopped him making tea/food/anything whilst he was still with it enough to know that he wasn’t to do it anymore, he’d make a joke of it – along with driving. He doesn’t try now, which as he was the main cook when he was home is quite amazing really!

I wish you & yours well too xx