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

[BeckyJan]

Hello Sylvia:

Your conversation sounded so similar to those we have. David regularly states he does not want to be a burden and spoil my life. He also is concerned that we have enough money.

He is in a NHS Rehab. centre and he thinks we are paying for it. I can explain that we are not but he forgets within 5 minutes.

Today I am going to take in photos to help him remember some of his success in life. I want to bolster his ego a little.

I hope the rest of your day is ok.

Love Jan

 

[Grannie G]

Thank you Jan. I hope the photos help.

I saw our GP this morning with regard to emergency contact should I be ill and Dhiren unable to get help. He suggested I contact Age Concern, which I have just done.

They are sending me information. It seems I should have something to press for emergency assistance.

And with all the help and advice I`ve read on TP, I have just realized I forgot to ask what would happen to Dhiren if I was taken ill.
It`s so easy to forget when you are not used to asking for help.

 

[connie]

Dear Sylvia, all is not lost.

Let's look at the positives. Your doctor listened, and suggested something that is going to help you both in an emergency situation. Good, hope you put that in operation soon.

So you forgot the main thing you went to see him about. (Who's a silly girl then, forgetting to write it all down). Stop being hard on yourself. You are under stress and pressure like the rest of the carers on this site.

Yes, we know what we should do, but have trouble remembering to do it. So easy.

I hope you have now written to your doctor explaining your memory lapse, so it will be there with your notes when you try again, maybe next week.

Take care now Sylvia.

 

[Grannie G]

Thank you Connie.
I have written to the doctor.

It is so easy to know what to do, but putting it into practice goes by the board with the smallest distraction.

We are having money worries again this evening. Dhiren now has his bank books, is really cross with me for being so controling. After all, he has managed his money all his life, has never made any mistakes, why should he start now.

 

[Grannie G]

I`ve just woken up after a bad night.

Dhiren was playing silly beggars about money again last night and it drives me up the wall. Sometimes I am too tired or don`t have the patience to play the game.

He woke me just now to tell me it was 9.30. He asked if I was all right. I felt like screaming `No I am not all right but nothing can be done about it`.

But instead I said `I`m fine`, and he made me a cup of tea.

 

[Kate P]

Sylvia I don't know how you keep your temper I really don't - I can't imagine how exhausting and frustrating it must be for you having the same conversation over and over again.

I've wracked my brains trying to think of something that might help - might distract or help Dhrian to remember but there seems to be nothing to do but keep having the conversations.

It's not like ignoring it would work because he doesn't remember having the conversation already.

I'm sending you big hugs, prayers and a wish that the concept of money will somehow disappear from Dhiran's mind!

Love

 

[Grannie G]

I don`t always keep my temper Kate, but try to control it as much as I can because losing it achieves nothing.

But when it`s bad, I offload on TP and there is always someone there who understands.

Today it was you. Thank you.

 

[christine_batch]

One year to-day

Where has the year gone since Peter went into E.M.I. Unit?
The emptyness is so hugh. What life was like before AD? Those memories are so hard to find in my jumbled brain.
The photo albumns, yes I see the pictures but that is about all.
My only link is this house.
On Wednesday, Peter had to see the Surgeon regarding his hernia operation. The Nursing Home made sure that the nurse who spends over 40 hours per week with him came as well.
I wanted Angela in the room with me as she is brillaint in calming Peter down.
Two stupid nurses asked me if I would be able to keep him calm?
Getting Peter out of the wheelchair and I was asked to get hold of the other side (whilst nurse was standing - watching) I explained I had rheumatoid arthritas and could not do it. So in steps the other nurse.
Peter on the couch was like a very frightened man. Insisting that his Nurse from C.H. be admitted to the room.
One Doctor examined Peter and bless him, Peter did try. Then he called the Surgeon in - hence another examination. By this time Peter was really distressed.
When I sat down with Surgeon I was in tears.
Yes he would do the operation but someone would have tobe with him 24/7 as they would not be able to cope with someone with AD.
Surgeon then said when it became emergency they will do it and send him back to N.H. same day.
Peter was not a one off for this operation, two other AD patients at the N.H. had it done and Hospital requested help from N.H. for feeding, medication which they are not insured to do.
Where in the NHS is the training for our loved ones who have to go to Hospital????
This system not only let us down but also our loved ones.
As Carers' we are not trained when we become Carers' but learn the hard way.
If the medical Profession do not get some form of training with AD/Dementia were does that leave us, our loved ones and those who have yet to enter into this herrendous illness.
Roll on July 6th for Dementia Awareness Week.
Thank you friends on T.P. for being here I would be really lost without you all.
Christine

 

[Kate P]

Dear Christine,

How terrible for you and poor Peter - how could he not be distressed - I think I'd be irritable after that much messing about.

I think there is a huge gap in the care our loved ones need - I don't know whats to be done about it.

Take care of yourself.

Love

 

[Grannie G]

2.30pm..........

D `Do we have to sleep here?`
S `This is our home. Where else can we sleep?`
D....pointing....`At our home down there.`
S `Where?`
D `Come on I`ll show you.`

and we put our coats on and went out.....

S `You lead the way.`
D `You think I don`t know where I`m going, don`t you. I know this place like the back of my hand.`

and we started walking up the Avenue.

D `I might be mistaken.`
S `It doesn`t matter, at least I will know where tyou are thinking of.`
D `It`s down here.`
S `Lead on, lead on.......`
D `I think I`ve got it wrong. We are going to Paul`s house. It isn`t our house it`s Paul`s.`
S `You are quite right. We used to stay at Paul`s house when we came to visit, but we don`t need to stay there now, we have our own house.`
D `I know now. What is our phone number?`
S `You have it on a disc on your key ring.`
D.....taking out his key ring and reading the phone number, `Thanks.`

and so we arrived home.

D `When I do go, I won`t go to Paul`s, I`ll go to Manchester.`

 

[Cliff]

Dear Sylvia,

Thank you for your lovely message to my note.

Am so sorry to just read your last page and read how things are. You are marvellous coping with everything.

Just a thought: we have a superb dedicated team on our care-line system. I was faced this morning with Dee lying flat on a soaking wet pad in bed and unable/unwilling to move. At 5.30am it was impossible to ring a neighbour for help so I rang care-line and although it was inadvisable to call an ambulance or doctor, we just talked and my tension and frustration evaporated. I covered Dee and waited for the carer to arrive at 8am.


Sylvia, I can feel for you coping with the endless repetition and hope there are brighter moments.

With love to you both,

 

[Grannie G]

Thank you Cliff.

I have received the leaflet about Aid-Call from Age Concern. I will need to get more information about it and other systems before I decide what to do. I do know I definitely need something.

Lovely to have yopu back on TP Cliff.

Love xx

 

[helen.tomlinson]

Evening Sylvia

I was wondering Sylvia how long Dhiren has been repetitive. Is it something that crept up on him? Of course, I completely understand if you don't want to answer this but in some ways it reminds me of Alan. There are certain things that I'm beginning to see about Alan but I must admit I've just thought he's like a stuck record. I've not really recognised that it might be part of the illness.

I am very patient and kind with it most of the time but there are times that it drives me up the wall and I feel I can't cope.

I hope you get a bit more sleep tonight. By the way that's a brilliant idea about the phone number on the key ring. Alan has no idea now what our number is so I'll definitely copy that idea tomorrow.

Love and best wishes

Helen

 

[Grannie G]

Hello Helen

The key ring idea was from a TP member.
It is a pet tag engraved with our home phone number on one side and Dhiren`s name on the other side, together with the fact he is diabetic and has Alzheimers. I put it on his key ring without telling him and he never commented. It cost just over £5 to buy it and have it engraved.

I think Dhiren has been repeating himself for ever. Well it seems like for ever.

The biggest problem has been his inability to settle in our new home. We moved here five years ago from Bury, near Manchester, and ever since he has been trying to return. We have visited Manchester twice. The first time he recognized it but felt like a visitor, and the second time he went walkabout and the police found him four hours later.

But he thinks Manchester will lead him to his family in India. If he can just get to Manchester he will be able to get a train `home`.

 

[Grannie G]

Our grandchildren were in a dancing and drama display today. I went to watch. I was away for five hours.

Dhiren went to Paul`s house. There was a football match to watch for a couple of hours and then, as Dhiren became restless, Paul brought him home. Dhiren didn`t seem to want Paul to stay with him, so he left, but popped back a couple of times to check on him.

There was no sundowning, no challenging behaviour, no wandering.

Coincidence or not? Who knows.

 

[gigi]

Dear Sylvia,

Am so glad that you had a break! Do hope you benefited from it..

It's interesting there was no sundowning.

Maybe Dhiren has insight still..and..like Eric..can come up with the necessary when needed. You weren't there for him..so he had to survive and be independent ..

Just a thought..

Love gigi xx

 

[Grannie G]

I agree Gigi.
It`s the only logical explanation. Which means there is still a certain amount of control.
So now I know.

 

[christine_batch]

Dear Sylvia,
It is nice to read that you had a break and to watch the Grandchildren must have been one lovely memory.
Love to you both
Christine

 

[Grannie G]

Thank you Christine.

 

[connie]

Dear Sylvia:

Coincidence or not? Who knows.

I would think not. Just another "day in the life of".

Glad you were able to enjoy your few hours with the grandchildren.