A life in the day of.........................

[Cliff]

Hello Sylvia,

Haven't been able to get to any of these meetings and now think I won't make the effort as I get very angry with patronising medical people.............

Think you're brilliant going

Love

 

[Grannie G]

Dear Cliff,

The patronising medic is only a small part of the meeting.

What was good, was meeting people in he same situation, getting out, and most of all knowing Dhiren was within a group and taking part for the first time ever.

He saw other people just like him. They weren`t `gaga`, they weren`t deranged. All the misconceptions he had about his condition were dispelled and have given him some peace of mind.

I`m also hoping this will eventually lead to him having the courage to try a day centre, but for now, we will continue going to these support groups together for as long as they are available to us.

Love xx

 

[DeborahBlythe]

Haven't been able to get to any of these meetings and now think I won't make the effort as I get very angry with patronising medical people.............

Think you're brilliant going

Love

Hear hear, Cliff, re Sylvia's brilliance! Can't be said often enough IMHO!

However, re your decision not to attend, why not try to keep an open mind and decide when you see the agenda? Not all meetings have speakers. Not all speakers will be patronising. Even the patronising ones can be taught a thing or two. You might be missing out on some vital help and contact by not going. You might be surprised how much anger you have in common with other carers and think of some inspired ways, jointly, of putting it to good use.
Just a thought.
Kind regards, Deborah x

 

[Sandy]

Dear Sylvia,

He saw other people just like him. They weren`t `gaga`, they weren`t deranged. All the misconceptions he had about his condition were dispelled and have given him some peace of mind.

That has to be a major step.

From time to time there is mention on the main Society site about a group of people with dementia who are working together to create a web site that reflects their experiences and makes interesting reading:

http://www.alzheimersforum.org/

Take care,

Sandy

 

[Grannie G]

Dear Sandy, thank you for the link.

It was such a major step that he now thinks he is cured, doesn`t want to talk about Alzheimers any more as he is `fine and dandy`.

So I shall have to tread carefully.

Love xx

 

[elaineo2]

well done for today.you are a star and make me laugh.no matter what you can see the funny side.hats off to you!love elainex

 

[Cliff]

I love these posts from Sylvia, so full of what caring is all about.

I'd like to attend get-togethers with other carers, but just can't. Am told they are very good.

Amazing how we go from ordinary people to carers in so short a time !

Love to you, Sylvia

 

[Grannie G]

Since the consultant adjusted the dose of Trazodone last Friday, to a small dose in the morning and a bigger dose in the evening, we have had 3 days of blissful calm.

I`m almost frightened to tempt fate by posting, but we have had walks along the sea front, shared laughter, no talk of going home, only talk of what a good life we have here, and a level of companionship we haven`t enjoyed for a long time.

I just hope it lasts.

 

[jenniferpa]

Oh wow Sylvia, so do I. Fingers and toes (and any other bits that come to mind) crossed for you both.

Love

 

[blue sea]

Great news, Sylvia! At the very least you've got some lovely memories to draw on, at best this adjustment of medication will make a longer term difference. Re your meetings, I think 'treading carefully' sums it up very well. We all know there are no easy or straightforward 'solutions' to helping someone with AZ or other dementia illnesses (once they have reached a certain stage of their illness) to understand that their perception of what is happening to them and their carers is different from the reality. Unfortunately, as the illness progresses, the person's cognitive and social understanding declines to the point where it becomes increasingly difficult to reason with them. They just do not appreciate the effect their behaviour is having on their carer. They would be totally shocked and horrified if they had their normal understanding.

I really think you have had a positive breakthrough with Dhiren attending that meeting. Why he attended, or what he saw as its purpose, matters less than the fact that he accepted that his needs and yours took you into different meetings. You shared some humour, which you can build on for the next meeting, perhaps joking in advance about what the lady will take for her 'picnic' next time! He may, of course, refuse to go next time, but as he has been once, he is more likely to go again. He now sees it as a non threatening experience - no-one is labelling him by going. As for your meeting - I can only say that yes the 'experts' have much to learn, but how are they going to learn unless they have direct contact of this sort with people like you who really know what the reality of living with someone with dementia means? Ironically, therefore, the meeting which is intended to support the carers may in fact be a way of educating the 'experts'!

Approach the next meeting in a relaxed, light hearted way and you've got a good chance Dhiren will go. If he won't, he might go the next time. It's often one step forward and one (or even two!) back, but it's worth persevering as it gives you some opportunities for Dhiren to gradually accept more support from others.

So far so good, would be my view on this!

Blue sea

 

[Grannie G]

Thank you Jennifer and blue sea.

Blue sea, I am not even going to mention the next meeting until we get up on Monday morning. Not only do I think we had a positive breakthrough with Dhiren attending the meeting, I think it as a giant step forwards.

Love xx

 

[jude1950]

Hi Sylvia,

so pleased to hear that you have had a good three days ..I an keeping ny fingers crossed that this mood continues for you both.
Jim is being taken into his new Care Home today lovely place lots of grounds for him to walk in. I have not seen him since he was taken into emergency respite two weeks ago....I hope that when I do see him we can have the pleasant moments that you and Dhiran have enjoyed.

take care.
Judith

 

[Grannie G]

All the best Judith, I can imagine your mixed emotions, and I really hope the move goes well.

Please post after you`ve seen Jim and let us know how he is. Will you go soon, or let him settle first?

Love xx

 

[mocha]

Best Wishes

Hope all went well with Jim's move Judith.
Do you know when you are going to see him? Perhaps you already have.

Good Luck.......Thinking about you.

Aileen

 

[sue38]

Sylvia,

Great news that you have had been enjoying some peace and happiness with Dhiren. Long may it continue.

My mum has admitted to us that she is ready to seek help and has agreed that my Dad be referred to the NHS consultant (the exisiting one is private as my Mum refused to see the consultant for our area) which means that the support system of CPN, SS, OT should also kick in.

Of course since then my Dad has been on the better side. My niece and I called last night to find them both in great spirits. Must be something in the water, or ths fact that the sun has finally decided to shine.

 

[Grannie G]

Thanks Sue.

We had a bit of a `blip` yesterday, as `going home` surfaced again.

The night before I had seen Dhiren throwing his medication in the garden.

So after refusing to speak to him for a while, about `going home` and he then asking what was wrong, I confronted him. He actually got the message, apologized, and admitted he was harming himself. So I hope he holds that thought.

I`m delighted to hear about your mother. I`m sure the `great spirits` you found last night were the effect of her feeling more relaxed about making a decision she`d been avoiding.
I just hope your father will accept the help too.

Keep us posted.

Love xx

 

[Westie]

Sylvia, I do hope that yesterday was only a tiny 'blip' and life continues in a calmer way for you and Dhiren.

I have been hoping that it is a good sign that you haven't been posting as much in this thread recently.

Are you going to your group again tomorrow? I really hope Dhiren will be happy to go to his too. Good 'picnic' weather too!!!

Mary-Ann

 

[Grannie G]

Hello Mary Ann,

No I haven`t been posting as often as things have been much calmer.

In this gorgeous weather, we have been going for a 60 minute walk along the cliff top, every day, so he hasn`t been as bored. With the return bus trip and a stop for coffee, it means we are out for two and a half hours.

And yes we are going to our groups tomorrow, and both seem to be looking forwards to them.

A little anecdote;
he found his old red driving licence he had kept as a souvenir.
` I`ve been looking all over for that,` he said, and it is now safely tucked into his wallet.
Thank goodness we have no car.

Love xx

 

[Cliff]

Hello Sylvia,

Am continually amazed how you find the right thing to say.

When I am confronted with difficult questions, am usually lost for the right words. Especialy when Dee's memory has played tricks and she's convinced something has taken place...........

Keep us in touch, it's so moving.

Love to you and Dhiren

 

[blue sea]

Good luck for tomorrow, Sylvia. Thinking of you.
blue sea