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

[sue38]

Hi Sylvia,

D `It won`t happen again. We`ll just go shopping and then come home.`

When I first read this I thought it was a positive, that Dhiren realised that Manchester was no longer home, but as I read your later post I see his obsession with Manchester is as strong as ever.

For what it's worth, I think you are trying the right tactic, agreeing with him in principle, but adding the condition:- when it's warmer, when you're feeling better; when I'm feeling better etc.

I hope he settles down enough to watch the match. Did you get your Sky sorted?

 

[Grannie G]

Thanks Sue.

We got Sky sorted, the new TV has a faulty Digital memory so we can get Sky but not digital.

I need subtitles for most programmes and Sky subtitles take up most of the screen, they are so clumsy. Terrestrial/Digital TV has neater subtitles, so this is why it`s important to me.

You are right about Dhiren. He is as obssessed as ever about Manchester, but still believes it will link him with India and his `family`.

I was so tired from the events of yesterday, trying to manage the situation without conflict, we both slept till 10am.

 

[Sandy]

Indian Sweets

Hi Sylvia,

Just catching up on your thread at lunchtime and realised I had no idea at all about Indian sweets. Looks like there are a few places to order from online if you're interested (not as good as a trip out perhaps, but less taxing):

http://www.spicesofindia.co.uk/acatalog/Indian-Sweets.html

http://www.chetnassweets.co.uk/shop.asp

http://www.harguns.com/sweets.html

http://www.ambalafoods.com/index_UK.php

For someone who has a hardwired connection between the terms 'sweets' and 'chocolate' it was really refreshing to see the range of ingredients used in Indian sweets.

Take care,

Sandy

 

[Grannie G]

Thank you so much Sandy. It never occured to me to look. I will let you know.
Love xx

 

[DeborahBlythe]

And then there is talk of another carer`s assessment, possibly a care package, perhaps a care manager...........I have been encouraged so much this morning, eveyone is really trying to understand and I am grateful.

Oh this does sound promising Sylvia. And yes, don't understimate the effect on your back and possible need to have help at some stage helping to move or support Dhiren physically, though hopefully not for a long time yet.
Love Deborah

 

[Grannie G]

It has been another long hard day today.

Sandy, I looked at the links you so kindly found for me, showed them to Dhiren, asked what he`d like to order as I don`t know the difference, and guess what? He will wait till he goes to Manchester and buy them himself.

We have had financial episodes today, when he was going to deposit the contents of his wallet in his ISA account. He had left himself with £5. he was stroppy with me about managing money, he`s managed all his life and not made any mistakes, why shouldn`t he continue.
So I gave him carte blanche.

We then sat in depressing silence for a couple of hours, I could not reach him. And he asked how long we would stay here, and I told him it was our home. But all he recognized was a picture on the wall and a couple of ornaments, and I realized all the furnishings were new for this house.

We ate our dinner and he told me his plans for leaving tomorrow, so after dinner I walked away from him and went into another room.

At 9.30pm. he came to find me. He was trembling. He was frightened someone was going to kill him. He was worried he had no luggage. He did not know what was happening to his brain.

I managed to reassure him and we went into the kitchen for tea and toast. He was hungry and ate quickly. Then he seemed to calm down, and all the time I was talking quietly to him, telling him he was safe here, that he must stay with me so I could look after him and he apologized for causing me so much worry.

I told him it wasn`t his fault and I wasn`t cross. He said he was going to change. He was going to walk every day to get oxygen into his brain because a doctor in Manchester had told him how to make his brain better, and tomorrow he would buy a train ticket to Manchester so he could see that doctor again.

And once again I have left the room.

 

[helen.tomlinson]

Hello Sylvia

I've just read your "A day in the life of" in order to catch up and it seems that a lot is happening, as usual, but with a difference. It seems like Monday is to be a big day for you with a carer's assessment - wow.

You must be exhausted but you seem to know very well how to deal with Dhiren and a lot of the time it seems to work. I think the way I deal with Alan works most of the time but I imagine there will be a time coming when it won't work any more or that I just need a break from the hard work of it.

Good luck for Monday Sylvia and I look foward to hearing about what happens.

Also, I keep reading about "sundowning". What is this? When the posts mention it, it's in a way that takes for granted that we will all understand. I don't mean you, I mean in general. Is it to do with Alzheimers or all dementias?

Love to you

Helen

 

[Grannie G]

Hello Helen.

Sundowning is a period late afternoon/early evening when many with dementia become restless and want to `go home`. This can be to a previous home or the childhood home, and is very upsetting for the carer and the cared for.

Dhiren has combined his previous home in manchester with his childhood home in India, so thinks his grandparents will be waiting for him in Manchester, and they will have the ability to make him better.

 

[connie]

Helen, here is just one link to 'Sundowning':

http://www.tripdatabase.com/spider.html?itemid=276263

Of course there are others as well.

It can be observed in any of the dementia related illnesses, although not everyone will neccessarily go throught that period.

Sylvia must be so frustrating for you as well as Dhiren. This confusion in their minds. Hope tomorrow will be a more peaceful day for you both.

Take care now. Love n'hugs,

 

[helen.tomlinson]

Thanks Sylvia and Connie. I looked up that site Connie and I will study it more over the weekend because I am really interested to understand it more. However, at first glance, it looks very complicated!!

Love Helen

 

[Grannie G]

A much better day today, but now he has gone quiet and is sad and he wants to see his mother.

 

[sue38]

A much better day today, but now he has gone quiet and is sad and he wants to see his mother.

Sylvia,

Pleased you had a better day. Hope it continues. Does Dhiren realise his mother is dead? (Sorry, I'm presuming she is ) My Dad talks a lot about his parents, but so far, does not think they are still alive.

I am taking him to the rugby tonight. Not sure how he'll be as he seems to be going downhill at the moment and very confused.

 

[TinaT]

Dear Sylvia,

It's not the physical side of caring but the mental torture of having the same obsessions day after day, week after week which is so hard to take. It is so very tiring and depressing to have to go over the same ground endlessly. No matter how we understand that it is the disease we are battling, we would be saints if we didn't become exhausted. I admire your endless patience Sylvia, I really do.

xxTinaT

 

[Grannie G]

Hello Sue.

Dhiren accepts his mother may be dead, but there`s a lot of guilt in him because he didn`t see her for years. So he wants to see his mother`s family as second best.
I wondered about your father, as you haven`t posted much about him lately. I`m sorry he too seems to be going downhill.
How is your mother managing?

Love xx

 

[Grannie G]

Thanks Tina.

I often think about Ken and his shoes. It gives me comfort.

I presume you`re back from your holiday with your mother. How was it and how was Ken? Is he in his new home yet?
Please post an update.
Love xx

 

[sue38]

Sylvia, I think the reason I haven't posted much about him is that we haven't had any great crises (leaving home etc.) but just a general deterioration. Some days he can't remember how to shave and getting through to him is quite difficult. We went to a funeral on Wednesday and he was trying to tell me something but really couldn't get any words out. Even he knew he wasn't making any sense. Normally he chats along, missing out all the nouns and the verbs, and I go along with him saying 'oh yes' and 'I know what you mean' even if I haven't a clue.

How is my Mum managing. Well she's not really. I know you will tell me that I don't know what it's like being the main carer and how easy it is to criticise, but her way of managing is rubbish. If he does something 'wrong' she tells him off. For example this lunchtime she told me that he went to take his tablets before he had eaten his biscuit and she told him 'no, eat your biscuit first!' Then instead of biting his biscuit he broke pieces off and put them in his mouth. Again she told him off. Eventually he gets sick of it, loses his rag and we have a crisis.

I had to say to her 'Mother, in the great scheme of things, does it matter that he takes his tablets before he eats his biscuit? Just be thankful that he is taking his tablets. What does it matter if he breaks bits off his biscuit?' 'Well the crumbs go everywhere!' 'So?????' AAAAGGGGHHHH!!!!

Hopefully at the meeting with the SW next week she will drop the 'we are doing very nicely thank you' act and be honest.

 

[Grannie G]

. I know you will tell me that I don't know what it's like being the main carer .

Would I do that?

It is hard to stand back and let it happen. I do understand how your mother feels, but agree with you, it doesn`t matter whether your father takes his tablets before or after food, he is still taking them with food.

We have a tiled hall floor. Dhiren vacs most days and `shakes` the hearth rug out in the hall. It makes me cringe, all the dust flying all over the hall wallpapaer, but I count to ten and say nothing.
The other day he saw crumbs on the carpet so got a sweeping brush and swept them out into the hall.
So I do know how your mother feels, but we just need to count to ten.

I hope you enjoy the match, both of you.

Love xx

 

[Skye]

Oh dear, Sue. We all learn eventually that table manners and a clean, tidy house just don't go with dementia. Your mum just hasn't admitted defeat yet!

Maybe it's her own defence mechanism, trying to keep things 'normal' for as long as possible. She'll accept things eventually, and things will be a lot easier for you all.

In the meantime -- thank goodness you're there to pick up the pieces.

I hope she'll be honest with the SW -- but don't hold your breath!

Hope you both enjoy the match.

Love,

 

[Sandy]

Dear Sylvia,

Sorry to hear that the online sweets didn't catch Dhiren's interest. I think to someone with AD images on a computer screen could seem quite abstract, not engaging the sense of smell/taste.

One of the companies offered a sampler box (http://www.ambalafoods.com/products/product.php?id=amb_sw4100&type=gift)

I thought about ordering one myself - it looked so tempting!

Take care,

Sandy

 

[Grannie G]

I am going to order some sweets for Dhiren Sandy, as a surprise, and hope he appreciates them.

Some of them are even too sweet for me. I looked at the gift tin in your link and noticed some of them are syrupy. They are very sweet indeed.

http://www.spicesofindia.co.uk/acatalog/Indian-Food-Assorted-Sweet-Selection-Box.html

These are the ones I`ll be ordering. Thank you so much.

Love xx