Lucid in company.

[Prague09]

Two social workers came to see Dad today, before they arrived Dad was very confused said he didnt like the carers as they put him in a forest and if he wanted to watch TV they put him in a shed and how much longer would this go on for as he wanted to sleep in his own bed again.
Knock knock at the door in walks two very pleasant ladies and suddenly he is normal, confusion disappeared.
On the way out they said are you sure he has dementia I felt awful. Luckily the carers have written in their care plans how confused he is.
Does anyone else have this experience. Thank You Prague 09

 

[Legion]

YES!!!

My sister arranged a visit from the social workers to assess Mum's needs. She has been particulalry bad recently but on the day of the visit was well dressed, had make up on and was very normal. When asked about her memory she said that it was 'ok, its not like she forgets what day it is' and laughed. She had been phoning up about every three hours asking what day it was the previous week.

Fortunately the social workers listened to my sisters discription (even though this annoyed mum) and have agreed some support package.

My thoughts - can we get the social workers to visit everyday if they have this magical effect?

Take care

Legion

 

[Prague09]

I wish

I really wish they would. This is making me ill I am trying so hard to help him and as we all know its not easy to get the help in the first place.
Thank You so much at least I know I'm not alone.

 

[Lanie]

I know at times when my Mum is presented with a professional, she can be quite lucid, its as if she knows its really important or something. I have no idea why this is. I think the social workers were wrong to ask you if you were sure about dementia when they should have been asking you. What has been happening? In order to get a clear picture. I know that when my Mum was hospital one of nurses said this sometimes happens.

Lanie

 

[Margarita]

On the way out they said are you sure he has dementia I felt awful.

Don’t feel awful, but I know what you mean , because yes it happen with my mother , Social worker told me

“ That no one should be speculating on what diagnose your mother has “ . Its very negative of a social worker to say that of your father , just go to show your social workers can't be trained in dementia.



.
Some people are just ignorant in how they generalise people with dementia, ignorance come out of lack of not living or working with people who has dementia , even people that work with the elderly, think all elderly people became incontinent , they only perceive people with a dementia really have a dementia only when they are bed ridden .
Some carers that come around to wash mum expect mum to wash herself, while they just stand there. I have to show them the notes in mum care plan that says mum has a dementia, care manger of social services day center told me your mother so much better lately she remembered what I said to her late week , all I can say well I was told mum could have VD even thought brain scan said AZ .

I have to hole back from saying “that no one should be speculating on what diagnose my mother has, mum is on medication for AZ that does mask the harsh symptoms ( they get on my nerves really ) So I just said "yes it must be because I am feeling better in myself for working, its having a knock on effect on mum" ( because I don’t live in a fools paradise any more ) Just glad mum can still put on a good show for people, does her self esteem a world of good.

 

[julieann15]

Lucid with the professionals- how do they do it??

This too has happened to me and Ian. Mum had been having a particularly bad few weeks- her assessment with CPN/SW was due so I brought it forward so they could see the problems we were having first hand.Both came together. Got round,mum was dressed, breakfasted, make-up on THE LOT!! In come the professionals mum is the lovely if somewhat a little confused old lady. Tells them stories of how she is coping etc etc- I sometimes feel after such visits that I am "crying Wolf" believe you me I am not within a few days we were back to the chaos that is Mum!!

At present I am getting her off mailing lists as post/ surveys and questionnaires are a great waste of her energy. Just what does an 81 year old who has no experience of Leicestershire hospitals want to be filling in a survey on what they can do better??? . She is on Mailing Preference and so when I phone up to get her removed from their list and for confusing mum--- I am told that she contacted them first.

Julie xx

 

[Prague09]

thank you.

Thank you for the replys. I also feel that they may feel thatI am crying wolf.
Yes I agree about the the mailing lists, some arrive stating that they just need a signiture which is what my dad would do. If he is having a good day he will simply but them in the bin but then there is the added risk of identify theft as their names and address are printed on the letter. Prague 09

 

[Margarita]

I also feel that they may feel thatI am crying wolf.

It must be you that feeling in a low mood, to make statements like that, because someone told me also that no one can make you feel like anything unless you feel it yourself. May be like me when I felt like you did when first getting support for my mother I felt guilty.


It’s amazing really what a last passing sentence from someone, can leave a lasting impression on the person that they say it to.

A social worker should be empowering you, not disempowering you in making a statement like they did, so you have perceiving it as a negative statement leaving you feeling negative.

In the past a social worker make me feel very negative in asking for something , that when I told my daughter who is studying to became a social worker , she was on the phone asking to speak to the manger of social services to make a complaint about what the social worker said to me .
You have made a very positive move forward in your father care plan, even if you don’t feel like it now. My brother CPN told me that " at the end of the day CPN , social worker go home , where you the carer are living in it 24/7 . So if you do not ask for the services you’re not going to get it. Then CPN said to me don't tell anyone I told you that "

 

[JeanD]

Someone told me that this happens because when there are visitors, or you go to the hospital, the person with Alzheimer's blood pressure goes up a bit, and it increases oxygen flow to the brain. This eases the problems with brain function slightly.

It seems quite common, and the Social Workers should know about it. We had the same problem with dad for ages. People who did not spend a lot of time with him would wonder what the rest of us were talking about. He could hold a normal conversation with them for hours, especially on the phone. Sometimes a lot of what he was saying was imaginary, but it was usually quite ordinary things so they had no way of knowing. It was a bonus on social events though because dad often had a much nicer time than we expected, and was much less confused.

It helps to make a list of things which have happened recently. I encouraged dad to write a list of what was bothering him too, to hand to the consultant with our list. I did not want him to feel we were talking about him without involving him. His list of worries was very revealing.

 

[Prague09]

Many Thanks

Very good replys from you all many thanks.
True about me crying wolf, think that's because that is what I secretly want the situation to be, just fanatsy my imagination .... I dont want him to have this conditition... it also makes sense about the blood pressure rising too.
It certainly is true about s/w etc., they only see the story for 30 mins its us who have to deal with the same old questions over and over again 'where am I', 'who put me here', I want to go home'. He tells people that I am having an affair (I only go to sainsburys so not much hope there). Prague09

 

[Tender Face]

Prague - not just with professionals - it never ceased to amaze me how mum could 'raise her game' when anyone else other than me was with her .... fed up of me - no doubt - I was the fussing boring one who had to deal with all things practical and perhaps wasn't always as totally focussed on her and chatting with her 100% as a personal or professional visitor might ..... I wonder we become such a 'feature' it's oblivious ......? We become part of their 'furniture'? And then because we are close they don't need to try ... they know we understand and accept ..... Yup - been through the 'well, she was alright when she was with me' scenarios ....... to the extent I started to doubt myself ... keeping a diary didn't just help with reporting symptoms/incidents to professionals ... it helped me keep a grip on the reality that I really hadn't imagined some of the behaviour others never saw ........ or somehow - who knows how - she could 'hide' the issues for an hour or two here and there? Yup - sat there many times with visitors expected and watched her crumbling - only to raise her game as soon as there was a knock on the door as if she were accepting 'an audience' - only to see her crumble again minutes after they had gone?

Perhaps their fear and sense of self-pride is inherent, even if they can't communicate it as such? Don't know the answers, sorry, just some understanding ......

Love Karen, x

 

[Valeria]

I have gone through this with Peter also. Especially with his two brothers, I used to feel like a fraud when they had gone. I used tell them how he had been etc: But with them he used to be a different person. Lately he has changed yet again, he is terribly quiet when we have visitors now.

I tend to think they do try to hide a lot of what is going on inside their heads, I certainly feel that Peter is, except with me of course.

Take Care.....Anya.

 

[sue38]

Slightly off the point, but I was discussing with the consultant how my dad's language is better when he is in rage, or we are at a rugby match and he is following the game much better than when watching on TV.

The consultant thought that adrenalin improved cognitive process. I suppose when a stranger comes to the house our adrenalin levels are raised (if only slightly, perhaps more so for a dementia sufferer) and this may explain the 'improved performance'.

 

[Canadian Joanne]

It is such a common thing for our loved ones to present really well when others are around. Whatever the reason - increased blood flow, adrenalin etc - I found it to be very irritating when professionals were taken in by it. Not all were - I remember the manager of the day care centre, who told me how high-functioning Mum was for an AD patient.

 

[julieann15]

Prague09

Dear Prague09
So you are having an affair??- Sainsburys is certainly not the place to be having it- Perhaps you need to spread the wealth and shop at alternatives Tesco, Asda you never know???

Sorry to be flippant- thought it would make you smile- the comment that you are considered to be having an affair when really shopping made me laugh

Thanks

Julie x

PS When Ian, my husband rang up his mum to tell her he had got married in August(we eloped)- she then rang his sister and asked her who Ian had married and was I pregnant hence the speed of the wedding!!!

 

[connie]

Dear Prague. somehow I believe they manage to raise their levels in all sorts of ways.

Lionel has always had mobility problems. This was very noticeable on one visit to the consultant. He thought physiotheraphy might help so arranged for them to come home to Lionel.

Two nice young ladies arrived. Lionel laughed and joked with them, as he still could, and then..............danced around the bungalow as if he was auditioning for a part in a musical.

They left, saying what a pleasure it was to meet him, but there was nothing they could do to help. The following day he could not even walk ten steps without help.

(Can sympathise too with the affair - Lionel reckoned that I put him to bed early so that, his words not mine, "I could go out whoreing". Coupled with 'would I buy him a couple of properties when I went to the supermarket', I sometimes wonder how we ever retain our sense of humour) At least we are not alone.

 

[Canadian Joanne]

Gee, I didn't notice any properties in Waitrose when I was there. Must take a better look next time.

My mother told me that my stepfather was "going out drinking and running around" on her. That's when I realized she was confusing her second husband with her first. (Dad wasn't exactly the ideal husband ).

 

[Prague09]

made me laugh

Oh julie ann that made me laugh. Yes I will ask my hubby to take me to Tescos this week for a change. I went to sainsburys this afternoon I dont think I saw anyone that would fit the criteria for my needs 'a millonaire'.

I also laughed at Ian saying that he had married in a hurry due to the forthcoming birth(how lovely)

Thank you all so very, very much for the replies it is so good to hear that we are not the only ones who are going through this and I laughed so much.

But on the serious side its is an awful feeling when like the incident when your brother in laws arrive and normality invades and you are left with a feeling of egg on your face.

 

[Prague09]

connie and joanne

Connie my Dad has mobility problems he can only walk with a shuffel and drags his feet.
last week GP arrived on a home visit, my daughter had taken him out in his wheel chair for some fresh air in the morning, she had to call the next door neighbour to help her get him into his wheel chair due to his poor mobility, GP arrived in the afternoon and asked him to lay on his bed for examination, he almost ran from the lounge to the bedroom. Mind over matter?

Well Joanne I think you must change to Sainsburys because that is where you will apparently meet some one and conduct an affair in full view of the public.I shall be reading the SUN/ News of the world with interest in the future. HA HA

 

[connie]

Mind over matter?

Long may it last, even as frustrating as it is to witness.

(As Lionel has been bedbound now for 18 months I would give anything for a few irritating moments back).

Treasure the moment and the memories.