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

[christine_batch]

Dear Sylvia and Hazel,
I think you are both really remarkable women in sharing your experiences with us. I know it is not an easy thing for any of use to do,
Peter did not know four and a half years ago that I was his wife. Just a really nice lady who looks after him. Just to have a cuddle, a kiss or even holding my hand would have been bliss.
This illness takes away so much from not only the patient but those who love.
When asked why do you do it ? I have always told people because of the love I have for the man inside.
Very best wishes
Christine

 

[Cliff]

Hello Mrs Mop, welcome, do hope you are using TP now, it is so helpful and friendly.

Hello Sylvia, yes I have a carer for 3 hours on Monday afternoons she is lovely and chatty - She is agency and started by AZ Soc but now funded by me and worth every penny,

Then I have a Crossroads lady for 2 hours on Wednesday mornings and Dee goes to Day Centre on Thursdays.

Am about to start morning help for 1/2 hour for 5 days each week increasing to 7 days per week to rouse Dee and do toileting and dressing - this will be from an agency and funded by me.

So am gradually feeling the wieght lifting from my shoulders.

Love to you all,

 

[Grannie G]

Well done Cliff.
I`m glad you`re getting as much help as possible.
Love xx

 

[Skye]

So am gradually feeling the wieght lifting from my shoulders.

Glad you're getting some help now, Cliff, it does make such a difference.

Someone posted recently that care is better in Scotland. I don't think it's any better, it's just that all the help you mention comes under the heading of 'personal care', so is free for us, no means test.

I wouldn't have minded paying for it, but what is very good is that the personal care allowance is offset against NH fees, so I pay that bit less. Very welcome, the fees make a huge hole!

Sylvia, John is much the same, that's why I haven't posted much about him recently. Still getting recurrent infections, almost continuously on antibiotics. But still eating well.

Me? As you'd expect. Tired, depressed, but plodding on. Business as usual!

Thanks for asking.

Love,

Love,

 

[Cliff]

Thank you ladies, isn’t it good to have friends here in TP !

So sorry to read your news Hazel, it must be so hard now, my heart-felt good-wishes go out to you and John.

Must add to my note about help that I get a Carers allowance which is not means tested but I believe I have to declare and pay tax on it. I also get a healthy chunk off Council tax which is real money. I also have at modest charge a Care Line telephone and it is brilliant. They have helped summons a doctor, nurse, or ambulance so efficiently and quickly and phoned back later to see if everything is OK – everyone caring should have a Care Line.

Love to all

 

[Grannie G]

– everyone caring should have a Care Line.

I always thought Care Lines were for people on their own. How silly of me. I can well see the benefit to carers. I`ll make enquiries. Thank you Cliff.

A short while ago..........
D `Will you draw me a map, to show me the way to Manchester. I`ll have a walk there one day.`
S `It`s 300 miles away.` [Thank goodness] `You can`t walk so far, we`ll have to go by train.`
D `Is it that far? It`s a long way. How do I get there?`
S `You have to travel to London first, then cross London on the Tube, then get another train to Manchester.`
D `Can`t I go on one train?`
S `No. Don`t worry, we`re going in the Summer.`
D `Are you coming with me?`
S `Of course I am. We`ll go together.`
D `Good. I`ll wait for you then.`

Later...........
D `What time are we going tomorrow?`
S `Where?`
D `To Manchester.`
S `I don`t want to go to Manchester tomorrow. It`s too cold. Let`s wait for the warmer weather.`
D `All right, I`ll wait for you.`

Sundowning has become Happy Hour.

 

[Cliff]

Hello Sylvia,

Am supposed to be typing my shopping list for tomorrow but here goes:

Dee fainted a fortnight ago and hit her head on a stool during her fall. I activated the Care Line by hitting the red button and was able to keep Dee still on the floor and shout at the CareLine instrument which is loud speaking. The quick response ambulance arrived in about 7 minutes.

Compare that to dealing with a casualty or feeling very ill yourself and sorting out your surgery's emergency number etc on Saturday evening. Last summer, when Dee was having a baby, the Doctor arrived after 1/2 hour on a Sunday evening. I think the Care Line people know how to access the right line for doctor, nurse or ambulance etc. Ours is brilliant and staffed by very caring people.


Love and enjoy the Happy Hour

 

[Grannie G]

Thanks Cliff.

You type your shopping list?

 

[Cliff]

Yes Sylvia.

Have a data base of all things I have bought, and go down it ticking the things I need to buy and print them.

Mind you, I still forget things and buy too much. Still takes ages when you pop into TP every 5 minutes

Hope the happy hour continues

 

[Grannie G]

Thank you TP

Late afternoon.............
D `I want to go to Manchester tomorrow. I feel guilty, I haven`t seen my mother for years.`
S `Ok. But I wouldn`t go tomorrow, It`s Sunday and the trains are really slow. They do all the engineering work on Sundays.`
D `All right I`ll go the next day then. Is that Monday?`
S `Yes.`

A bit later......
D `I`m not going home tomorrow. What`s the point? They might not be there.`
S `Good. You`re much better staying here with me.`
D `I think so.`

A bit later...........
D `I want to go to Manchester. I won`t be happy until I go.`
S `If you wait for the warmer weather, we`ll go together.`
D `All the time, there`s something in me that makes me want to go to Manchester. I don`t know why.`
S `It`s called sundowning. All the people on the Alzheimers website want to go home in the early evening, even if they`ve lived in the same house for years. They want to go back to the homes of their childhood.`
D `I didn`t know that. I`m glad you go on the Alzheimers web site. You can learn all about it.`
S `That right. I used to get upset when you said you wanted to go home, when your home is here with me. I don`t get upset now, because I know it`s part of the condition.`
D `I`ve got it now. [I understand it now.] What`s it called?`
S `Sundowning.`
D `Sundowning. I know now. I`m all right now.`
S `Good.`

Later..........
D `I`ve got real Alzheimers, haven`t I?`
S `I`m afraid so.`
D `I`ve just got to grin and bear it then,`

 

[gigi]

Oh Sylvia...

....What else can I say..

I have similar question and answer sessions with Eric..he's childlike in his acceptance of my answers..I'm grateful for that..he could be agitated or aggressive..he's not

But it's heartbreaking at the same time!

Lots of love ..Gigi xx

 

[Cliff]

Oh Sylvia and Gigi,

I wonder if our loved ones realise what they are saying when they admit or allude to Alzheimer's.


At first I shielded Dee from "ALZHEIMER'S" because I thought the Consultant and the RMN's were doing that.

Now I expose her to it but it seems to means nothing to her - she would have fully understood this in her previous life.

Dee is slipping into another phase where the 'other people' are dominating her life, They are very real to her and no explanation from me is acceptable.

But she still smiles at bedtime which makes up for everything.

Goodnight, bless you both and love to you and Dhiren and Eric

 

[BeckyJan]

I have just posted one but the computer went down at the wrong time!
After a difficult few weeks today has been ok. We went to Goyt Valley for a ride out and D seemed to enjoy it. His main focus was firstly on how many sheep we have and secondly the state of the stone walls! Glad he is able to focus on something.
I thought you would like the attached, Sylvia. Maybe you should not show them to Dhiren

Hope the computer lasts to get these through.

Love Jan

 

[Grannie G]

Oh thank you Jan. What a lovely memory. I don`t know how many times we`ve driven down that road. No I won`t show Dhiren, but thank you for posting it.
Love xx

 

[Margarita]

what a beautiful photo , A song come to my mind see that photo , "The long and winding road"

 

[BeckyJan]

As we went along it did become a long and winding road. We took a single path journey home cos D wanted to see some countryside!!
It could be ok but there were a lot of cars coming the opposite way - so all stop and start.

It was worth it cos he did enjoy the relatively short outing.

I had another photo but having trouble downsizing and getting it through. Will save for another day.
Love Jan

 

[Grannie G]

Here we go again

It hasn`t been a good day.

He is convinced he can get help if he goes home. I can`t do anything to help him, he needs to go home, see doctors there, or perhaps herbalists, or homeopaths, as no doctors here can help him. There are better doctors at home.

When he goes I will be free to get on with my life. Free of the burden that is him.

So he has shut me out all day, wrapped in his own world. No eye contact, monosyllabic replies to my questions, sitting in gloom.

I went for a walk by the seaside to get some air, and when I returned he was as I had left him.

Then he went for a walk, but didn`t put a coat on, as it was warm in the house and sunny outside. But got half way down the drive and realized, so he came home. He put his coat on and went out again. He was home after 20 minutes, it was too cold.

We ate our dinner in silence, and then he began to pack. There are clothes on the spare bed, ready for tomorrow.

D `I`m going home tomorrow.`
S `I`m going to the Support Group, I hoped you`d come with me`
D `I`m not going there. I have to go home. I`ll wait till you get back, before I go. We can`t leave the house empty.`

 

[BeckyJan]

Sylvia:

I cannot say much except I hope tomorrow is a better day for you both. It is just soul destroying but I know you will pull through - you always do!

As Norman says 'Day by day'.

Thinking about you. Love Jan

 

[gill@anchorage5]

Dear Sylvia

Hope tomorrow is better for you.

Take care

Love

Gill x

 

[Westie]

Sylvia,

Sorry you're having a hard time at the moment.

I hope today is a better day and Dhiren 'returns' to you.

Mary-Ann
x