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

[Helen33]

Dear Sylvia

I'm sorry you had a bad day Saturday but glad that you were able to get out and experience Folk Week. I can imagine how you feel when you see the signs of the sundowning coming on. I was wondering whether it meant you weren't able to get to London?
I hope things go smoothly for you both today.

Love

 

[Grannie G]

We did get to London although it was touch and go.
My friend who now lives in France was visiting her daughter in Leicester. We arranged to meet half way, in London.

He was tired when he woke and would have liked to stay in bed longer.
The taxi was booked for 10.10am.

While we were waiting the questions and anxiety began
"Do we have to go?
What time will we get there?
How long will we stay there?
Why couldn`t they come here to Manchester?
Why couldn`t we meet them in Manchester?
How long will the journey be?
How much will it cost?
It`s too much money.
It`s cheap.
Who are we meeting?
Who are they anyway?
We have to go, we can`t let them down."

The taxi came on time, the train was on time, we sat and relaxed.

"What time will we arrive?
Where are we going?
What time did we leave?
How much longer?
How will we find them?"

So we arrived. They were there to meet us. We went for lunch.

It was a leisurely lunch. It was busy so the service was slow but it suited us, we were in no hurry.
But
"They have forgotten about us.
If they don`t serve us soon we`ll find somewhere else."
We got chatting to a couple of Australians at the next table.
My friends took pains to include Dhiren in the conversation, reminiscing about old times.

After lunch we had a wander. We wandered round to Buckingham Palace, the nearest sightseeing landmark to Victoria Station.
Dhiren began to tire so we made our way back.
Our friends led the way, not being used to our slow pace but trying very hard to adapt.
We followed behind, but Dhiren kept pulling me back.
S " What are you pulling me away for?"
D " We are the hangers on."
S "No we are not. They are our friends, we are with them."
D " Did they come from Australia?"

We returned to Victoria and said our good-byes.
D " Thank goodness for that."
S "Are you tired?"
D "I am extremely tired."

The train that was timetabled for Sunday on the website was not running. We had to wait 45 minutes for the next train.

We found seats.
Dhiren wanted the toilet. He had problems with the turnstile. The attendant helped him.
I told him to sit with my bag and mind the seat while I went.
When I returned he was in a different seat. Someone else was in our seats.
D pointing " Isn`t that our seat?"
S "It`s anyone`s seat. As long as we have somewhere to sit we are all right."
D turning to the man besides him "I`m sorry."
Man "That`s all right."
I smiled my thanks to the man.

He had a short nap on the train.

As we neared home he had no idea where we were or where we were going. He thought we were going to Jamui, to Manchester. He was unable to visualize our home. He said he`d know it when we arrived.

Paul texted to say he would meet us at the station.
D " He hasn`t got a car. He hasn`t got enough money for a car." [Was Dhiren thinking of him as a student?]

He did recognize home when we arrived but thought it was the home of his childhood.

It took him until 9 or 10 oclock to find his bearings and he sat quietly reading his magazine.

This morning..........
D "Where are we going today?"
S "Nowhere."
D "I thought we had somewhere to go."
S "We went to London yesterday."
D " Not today?"
S "No. Today we are having an easy day."
D "Are we staying at home?"
S "Yes. You can go back to bed and get up whenever you want."
D " Thank goodness for that."
And he is back in bed.

 

[Helen33]

Oh Sylvia

How wonderful that you were able to share it all with us - thanks so much. It is really good that you are able to do this whilst you can even though it is extremely tiring in many ways. I can't remember the last time I went to London apart from in transit. I think I was at school - a million years ago

I hope you do have a relaxing day today - "steady" as Alan would have said at one time!

Dhiren asking questions constantly reminds me of my step grandson some years back - everything was "why" - I'm sure you have experienced it yourself with your grandchildren. Once you've answered something for them, they come up with the next question.

Hope it's sunny down your way.

Love

 

[gigi]

Morning Sylvia,

Your day out makes fascinating reading..thankyou...

It gives a great insight into how Dhiren is trying to work out the world and his perception of it...

So pleased you met your friends and had a good day...

But it must hve been exhausting for you both....

Hope you're going to take it easy today....

Love gigi xx

 

[DeborahBlythe]

Sylvia, thanks for posting about your day out yesterday. So nice to read about it all. I was thinking about you and wondering how it went. It sounds as if it was pretty good, all things considered. Well done !

 

[Grannie G]

The transport called today at 9.30am. to take Dhiren to the day centre.

He was still asleep and I wasn`t dressed.

I thought it had been cancelled.

About half an hour later C phoned to ask if Dhiren had gone to the day centre. I thought she had cancelled it, as Crossroads had been in touch, but it seems I should have phoned to tell them.

So she asked what I want to do. And I don`t know what I want to do.

I know and believe Dhiren is relatively happy at the centre. But the `befores and afters` are too stressful for me. They are not worth the free time I have whilst he is there.

Then C asked if she should visit this morning and I put her off because we are both tired after yesterday.
So she asked if I want a visit tomorrow afternoon. Well I have the Relative`s Support Group in the morning.
In the afternoon, an engineer is coming to make adjustments to our mobility bath.

I feel really ungrateful after so much has been put into this. But I have gone from nothing to more than I can handle just now and really don`t know what to do.

I just don`t seem able to make a decision. Isn`t that awful.

 

[connie]

Sylvia, I really do sympathise.

I just don`t seem able to make a decision. Isn`t that awful.

No not really, after all whatever decision you make you are not really in control..Every decision you make will have repercussions according to how well Dhiren is able to cope.

know and believe Dhiren is relatively happy at the centre. But the `befores and afters` are too stressful for me. They are not worth the free time I have whilst he is there.

So whatever you decide I know you will have thought long and hard as to how benifical things are for Dhiren.
You can reason, he cannot.

If you feel that 'long term' he is getting something out of the day services I am sure you will grit your teeth and put up with the fallout. That of course is the question though - how do we know if the road we try to pursue is right 'for them'.
We still have to come into the equasion, but we are not ill, they are.

Sorry not much help I guess. These are things you already know.
Just do not want you to feel you are alone.

 

[Grannie G]

Thank you Connie

C sounded so disappointed. I felt as if I`ve fallen at the first hurdle.

 

[Skye]

Sylvia, you haven't fallen at any hurdle!

Everything has changed for you over the last few months, and both you and Dhiren have to come to terms with the changes. It can't be done overnight, and I'm sure C realises that.

On'y you can decide whether day care benefits either or both of you. Sometimes I know it's more bother than it's worth.

I think you should give Crossroads a try. If they have someone that Dhiren gets on with, he'll be happier in his own surroundings, you won't have the pressure of getting him ready first thing, and you'll be able to relax for a few hours.

I'm not knocking daycare, it's great when it works. John was OK with it when he could still communicate a bit, but once that stopped, he didn't want to go.

Is it possible to keep the daycare place open until you've had a few weeks of Crossroads? Then you'd be in a better position to decide.

Glad you had a good day out, at least.

Love,

 

[Grannie G]

Thanks Hazel

You`ve made a good point about not having to get Dhiren ready in the morning if someone comes in, rather than he goes out. This is certainly one of the problems as he becomes more confused if rushed and is now used to a slow and relaxed start to the day.

I`ll mention this to C. I think she is concerned he`ll lose his place at the day centre if he misses going too many times. That`s fair enough if there is a waiting list.

I suppose it depends what Crossroads offers and when it can start.

But thanks.

love xx

 

[BeckyJan]

Dear Sylvia:

I have read your posts of the past few days. I am glad you managed meeting friends in London, however tiring for Dhiren.

I empathise with you over day centre

But the `befores and afters` are too stressful for me-

- I felt exactly the same and now David just does not go. I miss the days at home to myself, so if you can manage it then good for you.

I feel confident that you will get help from Crossroads - just hope I am right.

felt as if I`ve fallen at the first hurdle.

I do not think C will see it that way. Surely we could all feel we are falling at every hurdle - cos in the end we cannot win. We just have to keep trying and you certainly do that.

I am feeling exasperated but hope it doesn't show

Have you had a good restful day?

Love Jan

 

[Canadian Joanne]

Dear Sylvia,
You certainly have been having "interesting times". Dhiren seems to be in a process of change right now.

I just don`t seem able to make a decision. Isn`t that awful.

I know the feeling and it isn't pleasant. This is hard on both of you. No words of wisdom, just that I'm thinking of you both.

Love,

 

[Helen33]

Dear Sylvia

For what it's worth, I feel that day care was put in place after being in a crisis situation and we tend to be in a different frame of mind at those times.

The crisis is now over and it's more about managing the every day which you do very well.

Perhaps you just need to think about putting into place some small changes that will help should another crisis arise and perhaps think about talking to C about this because I am sure she will respect this and understand.
Love

 

[sue38]

Hi Sylvia,

It seems that Dhiren is not a 'morning person', and doesn't like getting up in the morning? Who does? Well except my Dad. Even pre-dementia he was the lark to my Mum's owl. That seems to be one of the problems with Dhiren going to Day Centre.

The new Day Centre my Dad went to for the first time last week offers morning, afternoon and all day sessions. Although they had a vacancy for all day one day a week, the bus picks up at 7.30 a.m. Fine for my Dad who will have been up for at least 4 hours, but no good for my mum. So we opted for the afternoon session to start with which picks up at the far more civilised hour of 12.30. Is this an option with Dhiren's Day Centre?

I appreciate that the timing is only one of a number of concerns you have about Day Care. I do understand about the fall-out, not so much before for us, but problems after.

 

[Grannie G]

Jan.....we`ve had a very restful day thank you. I feel I`m just surfacing.

Helen..... you are right. The day care was arranged following a crisis. I must remember what you advised,

Perhaps you just need to think about putting into place some small changes that will help should another crisis arise and perhaps think about talking to C about this because I am sure she will respect this and understand.

I think this may be a far better approach. Thank you.

Joanne and Connie ....Thank you. You are always there.

 

[BeadieJay]

I feel really ungrateful after so much has been put into this. But I have gone from nothing to more than I can handle just now and really don`t know what to do.

I just don`t seem able to make a decision. Isn`t that awful.

Sylvia, I'm concerned that you might be suffering from depression - as these are common effects of being depressed, unable to make decisions, feeling things are too much to cope with. I just hope that you will take some time out for yourself - maybe tell C how you are feeling, that you can't decide what to do for the best. I'm sure she has experience of it and will be able to support you through this as she has supported both you and Dhiren over the past few weeks.

By the way, I was staying at a hotel just around the corner from Victoria Station all of last week - I'm exhausted having done more walking last week than I probably do in a year LOL The worst was when we took a boat to Greenwich and one of the crew told us that it was a "gentle 20 minute stroll up the hill to the Royal Observatory". If I ever come across that man again, I'm going to sue him for trade descriptions - gentle stroll my foot It was the most painful "stroll" of my life - anyone who has walked up that hill will know what I mean.

I'm glad your day trip to London went well though - a brave thing for you to do with all the crowds.

 

[Grannie G]

Thanks BeadieJay

I don`t feel I`m suffering from depression. I just feel life gets too much at times with pressures and decisions I could well do without.
Nor do I want others to make decisions for me. I still need to be in control of our lives.
C does know how I feel, I think.
I will be at the Relative`s Support Group today so will see what they say.
Love xx

 

[BeckyJan]

Hello Sylvia:

I feel the same

Nor do I want others to make decisions for me. I still need to be in control of our lives.

Like you I am not depressed and I do and can make decisions. BUT it would be good to share thoughts and feelings with lifelong partner/husband/friend. There is also this inner fight to try not to let this wretched illness pull me/us down and down.

I hope your Support Group is worthwhile today.

Love Jan

 

[Helen33]

Dear Sylvia

I just feel life gets too much at times with pressures and decisions I could well do without.

I think some of the pressures are because we are sometimes having to make decisions without having enough experience of the situation which often help us to make decisions. I think you are at the beginning stages of learning what's what since the crisis episode and you are getting yourself into a position to be better able to make these decisions when they become absolutely necessary. You are not doing nothing, you are gaining experience and learning every day. I remember being asked some time ago what it was that I needed and I can remember saying "I have absolutely no idea" because I'd no experience to base it on. I am better equipped now.

Hope you enjoy the group today.

Love

 

[Grannie G]

Relative`s Support Group

Last night and this morning Dhiren was all set to come with me to the support group but changed his mind, again.

He didn`t want to go to a church hall but would go to a temple. And then he decided he would return to India as there was nothing here for him.
So I told him he could do as he wished as long as he didn`t expect me to do it all for him.

And after a while he said he had been talking rubbish as he didn`t want to go anywhere without me.
And I said I didn`t want to go to the support group without him but had no option as he refused every time.

And we had some breakfast and were friends again.

And in a way it was as well I went alone for what happened would not have happened if Dhiren had been there.

I had such good talks today with C and I from the MHT, the Admiral Nurse, the Clinical Psychologist from the day hospital and M the person who runs the day hospital/day centre, who I met for the first time.

Everyone now knows Dhiren well, which is such a big improvement since before the crisis in May.
And everyone is putting the emphasis on support for me, struggling to find a way to give me free time, and reducing me to tears with their caring.

He will stop the day centre for now but his place can always be restored in the future. I will continue to be supported with home visits from C and the CPN, and in addition `I` will visit too.

And it is hoped I will be able to get some time out when Crossroads is established.

But they listened to me. They understood I don`t want him to feel I am pushing him away. They understood his reactions before and after cancelled the benefits of the freedom of the day. They understood there was no benefit in day care if it only added to my stress .

The people from the MHT and the Day Hospital want to encourage Dhiren back to the Day Hospital as they feel the longer he clings to home, the harder it will be to get him away in order to give me respite. They see day care as an introduction to longer respite care, something I had not realized.
They don`t want me to feel I must go out just for the sake.

And I came away feeling everything possible was being done to help me and our position would be given serious thought.

Wonderful