Update on Lionel

[Grannie G]

How lovely they are still there for him Connie. How was it for Michael?

 

[connie]

Think Michael found it quite upsetting, as Lionel has gone down so much since he saw him last.

He was very good with Lionel though, and asked me all sorts of probing question on the journey home.

We could not see his other grandma though, it would have been too troubling for her to see Michael without another member of the family. Strangely enough I have known his grandma for 40 years. We were neighbours, and our children have been married for 20 years, but her world is very confusing for her.

 

[Grannie G]

So sorry Connie, it doesn`t get any better does it.

Lovexx

 

[Skye]

Connie, what a sweetheart Michael is. He's adorable. Can I have him?

So nice that Lionel was able to respond, even if only for a little while.

Love to you all,

 

[fearful fiona]

Those are lovely pictures Connie. The friends look really nice and what a great chap Michael looks. Thanks for sharing this with us all.

 

[Nell]

Thanks Connie. Your pics. made me cry. To see your little Michael with Lionel was especialy touching. You must be sooooo proud of him! Nice to see Lionel's friends visiting too.

 

[SusanR]

Couldn't remember where I was yesterday when I read Brucie's success of using a 'pet' name and Jan's smile or I would have posted there - when I saw Rich today instead of calling him Rich I used a 'pet' name from his childhood and he broke into this wonderful smile which I had not seen in weeks. He even spoke three words together that I understood.

He is still in there.

Susan

 

[Grannie G]

That`s lovely Susan, you must have felt so good. I bet it makes Bruce feel good too, for giving you the idea.

 

[connie]

Susan

He is still in there

So pleased for you Susan. I bet you were thrilled. Thanks for sharing a nice experience.

 

[candi]

I love looking at your pictures connie, both lionel and micheal look so happy to be together. you must be so proud of them both.
take care candi x

 

[connie]

Back from holiday

Just returned from a weeks holiday,

Went to visit Lionel - well my first thought were "who is this old man sitting in Lionel's chair" - whoops this is my lovely man himself.

Nine days away from him - am I seeing him in a new light - he seems so old (65)
He certainly has lost so much weight. Care staff could not be more concerned.
They now 'puree' down his plated meals when hw does not want to eat.

I would like to think he still knows me - just. But does that really matter.
As long as he is comfortable and cared forwell the reat can look after itself.

Will post a cou[ple of pics to illustrate my point.
Love to you all,

 

[fearful fiona]

Dear Connie

Good you had a nice holiday but sorry that visit to Lionel was worrying. Although my parents are not I think as far along the journey as Lionel, I quite often find it reassuring to think that they are comfortable, warm and well cared for. But I wish there could be so much more for them as I'm sure you do with Lionel but it just doesn't work like that does it?

 

[connie]

Lionel. four weeks ago with a dear friend.
Her husband has alzheimers ( he was at his day centre) and is only 56.
We help each other through this maze.

 

[connie]

27-6-07

Lionel today......I am going in tomorrow to help give him a bath. Hopefully I can be a calming influence.

 

[Grannie G]

Dear Connie,

I can see the weight loss in Lionel`s face. It was much fuller 4 weeks ago.

I hope he`s soothed by the bath.

Love xx

 

[Brucie]

Hi Connie

sorry that Lionel has lost weight.

This also happened to Jan.

The picture below at left shows her in April 2001 at home - a month before she left there for good.

The middle one is after the assessment centre had her for a few months.

The right one is after the care home had rescued her with a caring and knowledgeable regime. Her face remains fairly similar today.

Lionel may gain weight. The shock of moving to another place can be unsettling in all ways.

 

[Grannie G]

Goodness Bruce, Jan looks so much better in the third photo. What is it with assessment centres?

 

[Brucie]

What is it with assessment centres

I think they are the fast food restaurant of the health market.

The people who go for assessment seem to be treated like lab animals and the assessment centre has no remit for long term well-being, just to identify the medication regime that will serve best.

The staff have no time to build a relationship with the patient or even to understand their needs beyond medication. The centres are not geared up to the people they serve, though I found the staff at Jan's centre very good, just helpless in making her lot better.

Also the range of people going for assessment is large - age-wise, condition-wise. Not only dementia people there. So everything not well tuned, unfortunately.....

 

[Grannie G]

Bruce, it sounds awful. Does everyone have to go through this procedure, or is there an alternative? The difference in the May and November 2001, photos is disturbing.

 

[Brucie]

To be fair, I only know the one centre, and it is hugely in demand - hence at one time after her bad fall and pelvic injury at the centre, they told me Jan was bed-blocking. Hardly her fault and I had her consultant ditched in favour of a better one at that point!

The centres are there to work out how others - at home or in a care home - can have someone who is as stable as possible in being cared for. The process seems [don't forget I am not an expert] to be an initial detox - removal of medication - then a testing of what medication works to control the symptoms, either singly or in combination.

I guess they also assess what other needs need to be satisfied.

I'm sure someone else can explain more comprehensively and [probably] correctly.

The AS Fact sheet covers it briefly http://www.alzheimers.org.uk/How_is_dementia_diagnosed/Diagnosis_process/info_diagnosis.htm though this is in the context of diagnosis, not progression of the dementia.