The beginning of another stage?!

[helen.tomlinson]

It's really hard to put into words what I'm experiencing with Alan. As you know he went for that passport interview and afterwards was really tired for a couple of days. Then he seemed to get back to normal. However, I am not sure now whether he ever did get back to normal because even I am finding it more difficult to understand what he's saying.

Also we went to a pub for lunch last week which we often use for lunch and Alan didn't want to go in there. He was trying to tell me something about it and I just thought that he fancied a change so we went somewhere else and he was fine. Then we went to the original pub for a coffee after shopping and Alan again didn't want to go in and was trying to tell me something. This time I made him come in with me because I wanted to understand what was the problem. He was trying to tell me something about a person. It's all very mixed up and I don't even know how to put it into words but in a nutshell I am wondering whether Alan is becoming paranoid Am I not understanding something that is really happening to him (perhaps something someone has said) or is Alan imagining things?? I can't imagine anyone saying anything or doing anything to him without me knowing because I can't think of an instance when Alan hasn't been with me and we only order food, eat it and leave. We don't socialise.

I have definitely noticed that Alan more and more gets the wrong end of the stick about things.

I have gone beyond thinking now that it's one of those good day/bad day things. I think something of what made the good days 'good' has now gone so our life is a little more diluted!
I know there are still lots of things that make up the 'good' but it is so scary experiencing the dilution of a person and a dilution of the good things that make up our life together.

I feel very anxious this afternoon.

Love to you all

Helen

 

[BeckyJan]

think something of what made the good days 'good' has now gone so our life is a little more diluted!

Hello Helen:
I think many of us will understand this statement and unfortunately it could possibly 'dilute' even more. I am afraid one begins to accept these slow but sure changes. (Not sure now whether accept is the right word).

It is sad and I am so sorry you have to experience this at all. However, enjoy those pub outings whilst you can. We had some lovely experiences with or without friends, exploring the Derbyshire pubs and restaurants. At one time that was David's only interest. Unfortunately I think those days are past for us.

I think at your stage it is very important to keep in touch with other friends too. The true friends will be very special in the future.

Take care Jan

 

[Grannie G]

Hello Helen

When you used to go out for meals, did Alan order? I wonder if he is aware of his word finding difficulty and doesn`t want to be put under pressure with people who know him.

I understand you didn`t socialize when you went there, but if you were regulars you possibly passed the time of day, even if you didn`t stop and chat.

I might be completely wrong, it was just a thought.

Love xx

 

[christine_batch]

Dear Helen,
When we went out for family meals and to Peter's favourite place, he started to just stand and stare and not able to even tell us what he wanted to eat.
Peter had forgotten where the toilet was for one thing and he did not want to be embarressed by asking .All he wanted to do was go home.
He also could not cope with people around him, and if he was asked what he wanted to drink the words were all jumbled up.
When we have one thing sorted out, along comes something else and it is difficult to deal with.
Hoping tomorrow will be a better day for you.
If my memory serves me right, isn't it your birthday.
So Happy Birthday Helen and if I have the date wrong put it down to my age.
Love & best wishes
Christine

 

[helen.tomlinson]

Hi Sylvia, No Alan is way past being able to order anything himself so there is no pressure there. Also we are anonymous to anyone in the pub and wouldn't know anyone even to pass the time of day with. We literally order, eat and leave. It is just a convenience thing when I have a busy day. I love cooking and I love my own food but sometimes the convenience of having something ready cooked and passable to eat is necessary in what has become a more and more busy life.

I really don't know what is happening. Sometimes I have found myself wondering if he's frightened. Sometimes I wonder whether someone's said something that I don't know about. Maybe someone said something and Alan got the wrong end of the stick. Sometimes I have found myself wondering whether he's becoming paranoid. I think it's the fact that I find myself wondering these things that show me something has changed because I've only just started to think these things.

I don't expect anyone can answer these things for me, it's just that I now don't think it's one of those 'bad times'. I am thinking it has some permanency

Dear Christine,

Fancy you remembering my birthday is around now. Well it's tomorrow and I've told Alan it's tomorrow about a hundred times over the past fortnight Anyway this morning he got up before me and looked a bit agitated and said he needed to get dressed because he had to go to the shops to get me a card. This was in a language that I did understand but I don't think anyone else would. I was thrilled he'd thought it himself and I said that when my clients were gone this morning, perhaps we could go together and he was pleased about that because he knows and I know that he would not know now where to begin buying that card. Anyway, with me there and showing him where to look, he managed to choose a lovely one.

Love Helen

 

[lesmisralbles]

Happy Birthday to You

The best birthday for you tomorrow,
Lot's of love Barb & Ron XX

 

[BeckyJan]

HAPPY BIRTHDAY for tomorrow!!

 

[gigi]

It is sad and I am so sorry you have to experience this at all. However, enjoy those pub outings whilst you can. We had some lovely experiences with or without friends, exploring the Derbyshire pubs and restaurants. At one time that was David's only interest. Unfortunately I think those days are past for us.

Dear Helen, Jan..anyone else out there...

That is classic Eric and myself...

Forgive me for not picking up on specifics..too much going on here..

Eric no longer can order his own food..or decide what to have.

If it's carvery I have to fetch it....

Many happy memories of days out in Derbyshire together..exploring and enjoying life....

Love gigi xx

 

[christine_batch]

Dear Helen,
Keep that as a very special memory of Alan buying you a card. It shows that things important to our loved ones is still there amongst the fog.
When it was my birthday and the family came cards, presents,cake, Peter popped to the shop and bought me a Wedding Anniversary Card plus a box of Black Magic (which I have always disliked).
On the funny side, before AD Peter always got our Anniversary mixed up with my birthday.
Have a lovely day tomorrow.
Love from
Christine

 

[bclark]

know there are still lots of things that make up the 'good' but it is so scary exper

i can so relate to your post my alan is very similar his speech is very bad now it is very sad watching his personality change and the part i personally find it difficult to deal with is the lack of interest in things that in the past he always enjoyed.alan seems to like just small regular trips out, nice meals, same routines familiar surroundings and familiar faces i think this is because its less preasure on him.as i dont know what tommorow will bring i try to make the most of today, happy birthday all the best

 

[BeckyJan]

seems to like just small regular trips out, nice meals, same routines familiar surroundings and familiar faces

Thats just how we were until David hit the latest phase.

I have a feeling that this may be the only consistent part of the disease.

Love Jan

 

[jc141265]

The Best Not Trying to Fight against it stage.

For us it became impossible to truly know why Dad did things, and there was a stage for about 2-3yrs, yes I think it is a stage, where life was a constant guessing game.
Dad insisted he wanted to go home, but when he got there he still wanted to go home, so we tried past homes of his, still no satisfaction. Dad seemed to see 'people' or 'things' that we couldn't see and he would either be happy to see them or very very angry. He would say something about 'Sam' to me and look over my shoulder as if 'Sam' was right there. I wasn't sure if he was talking about his long dead brother or my friend Samantha, or just some other random Sam or maybe he was talking about the bookcase and the name Sam just came out...and then he would come out with 'are you okay?' and look straight at me again I would wonder if 'Sam' was telling him something about me that I wasn't privy to?? Dad would take me to the gate at the respite home when i visited him there and say 'You go' and then smile. I never knew if he was telling me he was okay and I could go, whether he got sick of my visits, or if just didn't know why I was there and was just telling some stranger to leave.
Some things I learnt along the way to help deal with these situations were:
1. If Dad did seem scared of something, I would tell him that I couldn't quite work out what he was telling me, but I suspected that if he was scared of something it was that disease in his head messing with him, because I couldn't see any danger so maybe it was alright afterall...and he seemed to calm down whenever I told him this.
2. Dad's vision changed so he was shy of dark areas...going through doors that cast a shadow into the room to go into was a very difficult thing, but it helped to be able to start to recognise this and know why he wasn't wanting to go in. And it could help if I went in first holding his hand and talking him through it.
3. Needing to go home, seemed to be just a need to go go go anywhere.
Dad also began the habit of walking up to doors and raising his hands and yelling when he reached it, then turning around. I just got into the habit of doing that with him.
I guess I learnt that understanding exactly why he was doing things was no longer always useful as his world became very different to my world. The trick was to try and keep him from being distressed by his world and I found that just by talking to him honestly about it, without telling him he was being foolish or silly worked best.
I think a mistake a lot of us strike when coming into this stage is to try to fight to keep them in our world as we see them slip from our grasp and our instinct is to hold on tight and try to pull them back. This however can cause an awful lot of anger in the dementia sufferer as they no doubt feel justified for their behaviours, they know why they are doing it. Although its very very hard not to want to hold onto them, very hard to accept that the person we once knew is now living in a different world, from my experience anyways it is a lot easier in the end to see your loved one as them over there in that other world, because when Dad was allowed to live in his world he was much more like the Dad we always knew than when we tried to force him to stay in our world, which just caused anger and frustration. The old saying that you can't fit a square peg in a round hole comes to mind. You can however visit them in their world to a certain extent, and its important to realise that you aren't giving up on them, you are just tricking the disease into thinking its won, meanwhile sneaking in the back door by keeping a new kind of communication with your loved one going.
I think the trick in this stage is to let go and try to move with your loved one, than try to fight it. It ends up being a lot calmer all round. Whilst you're in their world you have time to talk to them and remind them of the old world, keep their minds active and show them that they are loved. Fighting it makes them angry, and you hurt and no real good can come of it.
Easier said than done however.

 

[Margaret W]

Dear Christine

Send me the Black Magic. Everyone has forgotten that I love them.

Love to all

Margaret

 

[christine_batch]

Dear Margaret,
Sending you the virtual Black Magic and enjoy. If it was Belgian Chocolates no-one would get a look in.
Love from
Christine

 

[Margarita]

I really don't know what is happening. Sometimes I have found myself wondering if he's frightened. Sometimes I wonder whether someone's said something that I don't know about. Maybe someone said something and Alan got the wrong end of the stick. Sometimes I have found myself wondering whether he's becoming paranoid

I wonder whether someone's said something that I don't know about. Maybe someone said something and Alan got the wrong end of the stick. Sometimes I have found myself wondering whether he's becoming paranoid

I use to think that also that my mother was paranoid , I say that because my mother & I use to go out a lot to eat My mother use to love going out for lunch , before AZ .she never went to day centre back then so it was the only outing mum could enjoy but could not do it on her own any more .

I found slowly over time she would confuse people expression on they face as meaning something else to her , someone would say something to her in fount of me , then she be saying a total different thing then what the person told her , it was really hard for me to understand where she was coming from Or what she was saying

I also thought of medication for paranoia, but I did not ask for it as it was not distressing mum , oh but the confused story she use to try tell me , where confusing for me to try to understand what she wanted me to do .

we can't go they today because of this or that , so I take her some where I thought she wanted to go to & I would alway get it wrong , but she seem happy and we stay in the same place to eat it just was so confusing for me .

It only all stop going out for lunch & mum telling me wried paranoia story when her mobility got worse, or she was taking me all over Gibraltar for lunch when we was they or in our home town where we now live in London .

Before medication for AZ she just could not communicate with me at all, it was horrible feeling of sadness sitting with her in silents she just sit they eat Not saying a word , so even thought she was paranoid it was better then not hearing her talk .

 

[helen.tomlinson]

Thank you all for your input. Any insight is appreciated and always serves to calm me down. Strange experience that!! I've not used a forum of any sort before this so the experiences I have are strange (but mostly good) to me. thank you.

I found slowly over time she would confuse people expression on they face as meaning something else to her , someone would say something to her in fount of me , then she be saying a total different thing then what the person told her , it was really hard for me to understand where she was coming from Or what she was saying

I think you've come up with something for me here Margarita. It could very well have something to do with people's facial expressions and I've noticed that Alan misunderstands what people are saying. Since the other day I have been observing Alan a little more closely and if he hears people slightly raising their voices (people who have nothing to do with us) he interprets it in his way - whatever that might be.
Anyway I'm calmer about it and more accepting of the fact that Alan is changing quite noticeably.

On the positive side, the Occupational Therapist came today and I noticed how much Alan wanted me to be there with them - which I refused to do. Eventually he settled down, accepted that I needed to get on preparing the lunch, and he played his guitar for them and they brought a board and dry pen for him to practice his writing on. He seemed to like the board and pen. Alan seemed to be saying that he didn't like the fact that they (the O.T. and her assistant) were so young.

I just think it is good for Alan to get used to others being there whilst we are not in an emergency situation. I think it will make it less difficult for him if he ever needed other carers in the future. Alan did a lot more talking than he would normally and I think that's because I was not in the same room and there was some other people for him to talk to.

Love and thanks to you all.

Helen

 

[BeckyJan]

think it is good for Alan to get used to others being there whilst we are not in an emergency situation

That seems very wise. The unknown is how much of his memory will retain the 'getting used to others'. I am very impressed that you have OTs interested in Alan at this stage.

Best wishes Jan

 

[helen.tomlinson]

Hello Jan

I am very impressed that you have OTs interested in Alan at this stage.

I have absolutely no idea how the system works. I'm just feeling my way around as I go along!!! I've been saying to everyone that I would like Alan to be able to maintain what he has for as long as possible and the O.T. thought that they could help with this. I, personally, am not at all sure that it will do much good (experience will tell) but I do feel that the outside contact has the possibility of proving invaluable in the future (again time will tell).

I have no experience of whether Alan getting an O.T. (plus assistant) is commonplace or not. If they weren't interested in Alan at this stage, what stage might they have been interested?

I do value your posts Jan and I think this is the first time I've said so

Love Helen

 

[Margarita]

, like yi

think it is good for Alan to get used to others being there whilst we are not in an emergency situation

Yes I agree with that also as I wish I had done that sooner , because I feel if I had let mum have people help her early on rather then me doing it all for her in the first 3 years of caring for her she would not of found it so hard in excepting someone to help me to help her .

I always thought mum would never get use to day centre , because she was so use to me doing it all for her . but she did, then she even got use to respite, even learn to trust me that I was picking her up when I said I would

I feel if you get someone on broad like your doing who really understand a dementia , they have the skills to detract them in a way that they don't get upset when your away in another room .

But I have never found a person who could do that at home with me , while I went out of the house or in another room, my daughters do help, but mum to much for them mental to handle. so that why I found the AZ day centers gave me the most positive peace of mind break