Paranoia seems here to stay

[Helen33]

We had a lovely day yesterday with 2 grandchildren staying and we all went out for a lovely Sunday roast at a village pub. As soon as we got in Alan started being very agitated but somehow we all got through it in tact. The grandchildren are very good and deal with the situation very well and are very loving towards Alan. It didn't spoil our time together and Alan only had to endure his discomfort for a little while. Once out of there he was o.k. and we carried on with the day and had a nice time. Here is a photo of him yesterday and there are a couple more on Sticky Pics.

View attachment 3443

 

[Lynne]

Helen

What a lovely summer picture. Alan's not at all self-conscious in front of the camera is he! Looks very contented with life, one would not have connected the photo with the text.

Best Wishes

 

[DeborahBlythe]

Hello Helen, my mum began to hate going out to crowded places. We used to take her to a pub for her birthday lunch but she didn't like the noise and general hubbub. She still gets 'umpty' even eating in what is known as the 'quiet 'dining room at the NH. ( The trolleys are bit noisy and the carers raise their voices to speak to the hard-of-hearing residents and my mum wonders what all the shouting is about.)
Your Alan looks very peaceful and dignified in the dappled light. I hope today is as successful as yesterday. Thanks for posting your pic.

 

[Helen33]

Hi Lynne

No he's not self-conscious at all. There are never any pictures of me cos I'm not at all photogenic. I wholeheartedly agree that it is hard to associate how Alan's looks to how things are at times. I might take a photo of him when he's being paranoid or agitated just to see the difference myself.

I've been having internet connection problems all night and first thing this morning so haven't had time to catch up but hope all is well with you and your mum.

Love

 

[Helen33]

Hi Deborah

The trolleys are bit noisy and the carers raise their voices to speak to the hard-of-hearing residents and my mum wonders what all the shouting is about.)

You might have hit the nail on the head because you made me remember that Alan kept saying "shush" all the time and I kept saying "it's alright Alan, people are just talking". I didn't realise that this might be an issue for him and that the noise was really bothering him. Now I think about it, he kept saying "shush" when we went out for a Chinese meal with my brother a few weeks back.

This is really helpful Deborah and I'll keep it in mind.

Love

 

[Lynne]

Only an opinion, but

I might take a photo of him when he's being paranoid or agitated just to see the difference myself.

No pet, I wouldn't do that; just keep those of the good times. The Pic on the "Mum won't Eat" thread is the last one I shall have of Mum.
She's got the twinkle back in her eye for a precious moment and looks like her old self. I shall have enough unhappy memories out of all this.

Best wishes

 

[Margarita]

No pet, I wouldn't do that; the Pic on the "Mum won't Eat" thread is the last one I shall have of Mum.

I must of miss that photo in your thread Lynn . So went over into your thread to find it . Sure is a lovely photo of your mother, your mother has Lovely bright eyes smile . Now I am wondering do you have your mother eyes ?


Yes Helen your husband is photogenic., I've gone past that stage caring if I am photogenic or not , I just post photos of me also Only because I love the Memory of the moment in time of the photo, so like sharing it with you all .

Hello Helen, my mum began to hate going out to crowded places.

My mother at that stage now , even thought Mum still go to day center and it does take a lot of energy out of mum all that traveling, mixing with people , that the side effect of it is:-

take her a while to settle back down in a better mood when she gets home, in not having the hump with everyone one around her, but then mum still wants to go to day center so who am I to stop her .

Even thought past 2 days with mum at home with me all the time has been really easy for me to mange mum . As she been on a level with her mood . I never thought I would hear myself saying that .

 

[Helen33]

Hi Margarita

I love capturing the moment in photos too but with me being the one with the camera most of the time, it's a good excuse not to be photographed

past 2 days with mum at home with me all the time has been really easy for me to mange mum . As she been on a level with her mood . I never thought I would hear myself saying that

That is so good to hear.

Love

 

[Grannie G]

Dear Helen

What a lovely photo of Alan. His appearance really does belie his condition.

We have just had coffee on the balcony overlooking the sea, of a local hotel. It was very busy with lots of hustle and bustle and a gentle buzz of conversation. Dhiren loved it.

But he wouldn`t have liked it indoors as it was noisier and quite warm too.

Maggie,
It was so good to read how easy your mother has been over the weekend. Long may it continue.

Love xx

 

[Helen33]

Hi Sylvia

We have just had coffee on the balcony overlooking the sea, of a local hotel. It was very busy with lots of hustle and bustle and a gentle buzz of conversation. Dhiren loved it.

I would have loved it too It sounds really lovely and I hope you enjoyed it too.

There was a point a week or two back when Alan looked 20 years older but then so did I. It was when we both had that virus. He does look good considering the condition and that he 78 years old! People easily come up to him to talk to him and it's only then that they realise there is something very wrong

Anyway we are now of out for tea - hoping you both enjoy the afternoon.

Love

 

[Grannie G]

Hello Helen

Alan is still very straight. It does make a difference.

Dhiren stoops now and shuffles too. Today for the first time, a little old lady offered him her seat on a crowded bus.........and he took it.

Love xx

 

[Margarita]

Long may it continue.

Thank-you both .

We have just had coffee on the balcony overlooking the sea, of a local hotel. It was very busy with lots of hustle and bustle and a gentle buzz of conversation. Dhiren loved it

Thats really good news to read, sounds like a really lovely time .

I'm not being negative,just finally being realistic with this disease & thats only come about from living with it for a long time , as its all progressing , Going out with mum is getting harder, harder , Harder on me then on mum I think in me coping.

but seeing , that its not progressed to the point mum does not enjoy going out . best to make the most out of those good moments in time, gosh I am becoming mellow

 

[Skye]

He does look good considering the condition and that he 78 years old! People easily come up to him to talk to him and it's only then that they realise there is something very wrong

Helen, John was exactly the same, before his virus. People just couldn't believe that there was anything wrong with him -- until they tried to talk to him.

How I envy you all, going out with your partners! However hard it is, make the most of every moment -- and take lots of pics.

gosh I am becoming mellow

Oh Maggie, surely not!

Love,

 

[BeckyJan]

Hello Helen:

Just popped into tp and saw this lovely photo of Alan. David is a year older and even at his best he could add another 10/15 yrs. At 70 he looked like a young 60 yr. old!

It is lovely to see him so straight and content looking. Keep for your memory box!

Love Jan

 

[gigi]

Hello Helen,

That's a wonderful photo of Alan..he looks so well...

I'm a bit puzzled about what you call "paranoia".....

Eric too hates large groups of people and doesn't function well with them...

But I wouldn't call it paranoia...

I just see it as Eric is unable to interact with large groups of people any more..his language and social skills are going...

And, like you, large family groups are a bit of a nightmare because you feel you have to be constantly "on the ball"..although the more my family have to do with us..the less I feel I need to be there for Eric..they are learning what to look for and when to be with him..

I'm very lucky..but I have been very open with them all...and will not tolerate anything other than my own standards from them..so they know....

Love gigi xx

 

[connie]

Hello Helen, may I echo Gigi's words:

That's a wonderful photo of Alan..he looks so well

Lionel loved the thought of my family all coming to lunch, and we would discuss the menu etc. (this was going back a few years).....but reality was very different.

We are 11 in all, and whever Lionel went in the bungalow...too much noise. Even sat at table over a meal, the general level of conversation would be too much and you could almost see him 'shutting down'.

It is such a shame when this happens, as I am sure inside they still want to participate as usual. Our gatherings had to get smaller and smaller. Just one to one in the end.

 

[gigi]

Thanks Connie....

And sorry Helen..

I hope I didn't come over to you as being critical...

There is an element of paranoia in Eric..or was..I think it's gone now...

He used to be hassled about who was on the phone..were they talking about him..etc...

But I have witnessed extreme paranoia first hand with my son..and still am having to deal with it to an extent...

So maybe my interpretation of paranoia may be somewhat different..

Love gigi xx

 

[Helen33]

Hi Gigi

Nothing to be sorry about Gigi, you didn't come across as critical just questioning which is fine The paranoia is about Alan believing people (including the t.v.) are talking to him or about him. It's not there all the time but I do think Deborah had a good point about the noise - I now think that noise sets it off. When I put that paranoia is here to stay I meant that it started in about March/April this year but was just like a flash and then gone. I didn't experience it again until we went on holiday and it only came on when we were in the town (which was very noisy) and occasionally by the pool but that was when it was noisy. It's been a revelation today. The permanency is that it is not like a flash anymore, it is around a lot more and in noisy circumstances. At the hospital on Friday Alan was really quite bad at thinking a couple of hospital personnel were talking about him and (I think) planning to attack him. Now I realise it is because this couple of personnel were being noisy. One of them was actually singing to the other and I did think he was rather eccentric myself.

Now I need to apologise for rattling on

Hello Hazel,

How I envy you all, going out with your partners! However hard it is, make the most of every moment -- and take lots of pics.

When I read this it really touched my heart and I felt for you. It takes a special person to be able to know the hurt and wish others well. Thank you I am aware that one day I will be in a completely different position and looking back on these times. As you know from recent posts, it felt absolutely desperate but everyone's comments make me even more aware that things can get so much worse.

Hi Sylvia,

I've never thought of Alan being straight and at first I wondered what you meant Then I giggled to myself and realised that some things I just take for granted!.

I am worried now about turning this reply into a small book so to everyone else I thank you and want to say I really do appreciate your comments.

Love

 

[connie]

Dear Hazel, thank you for posting:

How I envy you all, going out with your partners! However hard it is, make the most of every moment -- and take lots of pics.

as so many of us are in the same position.

Thank you Helen for being understanding of Hazel's thoughts.

We are all on the same journey, travelling at different speeds, same destination.