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

[Grannie G]

Dear Jan.

The walking at a snail`s pace is strange, as when Dhiren is purposeful eg. off to the bank or railway station, he has been seen to be walking very briskly. He only walks at a snail`s pace with me.

And he`s only unsteady when he is having a lapse or `funny head`.

One reason for the snail`s pace is I am unable to keep up with him, the other reason is when we`re out together and `at odds`, he is not with me in body or spirit. Then again, he seems to hold back and let me take the lead when we`re out together, so he allows me to set the pace and choose the direction.

The Goyt Valley and Lyme Park were two of our regulars. But my stomach never failed to turn over on the approach to the Goyt Valley, it`s as steep as a Roller Coaster.

Enjoy your outing.

You`re welcome to Broadstairs any time.

Love xx

 

[zonkjonk]

Sylvia,
you are an absolute angel
I dont post often but I read everyday.
(my mum has dementia late-mod/borderline severe)
I know how difficult my situation has been but reading your posts moves me profoundly. I just wanted you to know that here I am in australia,melbourne, 43 years old, and I just want to fly over there and give you a huge hug and tell you everything will be OK....
not possible of course
your love, despair and fear is enlightening(wrong word) for me
your posts help me to understand what my mum must have gone through prior to her admittance to the NH
my torturing worry is/was...what is going on her head
you have clarified that better than any book I have read and I have read many
I hope you continue to have the strength and courage to cope as long as you are able.
warm regards,
jo

 

[Grannie G]

I hope you continue to have the strength ........... to cope as long as you are able.warm regards,
jo

Thank you Jo.

I have deleted `courage` from your quote, sorry, but that`s not how I see it. I can only see it as necessity.

It really is wonderful to have so much contact with people from so far afield.

Love xx

 

[Grannie G]

Swings and roundabouts..........

We have been watching the Tory Party Conference.
During the break for lunch, there is now a programme on the same channel called Washington Journal. Dhiren is thrilled, live American politics, he loves it and has brightened up no end.

Is this the same person who couldn`t set the table for dinner last night, he put 3 forks at one place and 2 knives and a fork at the other, stood in puzzlement for a while, then finally got it right.


PS
Our son has just phoned to ask us for dinner. After the problems of last time, when Dhiren was nervous, negative and would have paid £10 not to go, I declined, saying Dhiren wasn`t at his best.
No problem, no offence taken.
I went back to tell Dhiren, pleased I`d handled a tricky situation well, and, guess what, he was disappointed.
`What did you say that for?`he asked. `I`d love to go.`
So we`re going. I just hope he doesn`t change his mind mid afternoon.

 

[Brucie]

I have deleted `courage` from your quote, sorry, but that`s not how I see it. I can only see it as necessity

that may be your view Sylvia, but mine is that courage is what is involved when you do something because it had to be done when you would really have preferred not to have had to, when you might have walked away, ignored it, done something else.

 

[Grannie G]

courage is what is involved when you do something because it had to be done when you would really have preferred not to have had to, when you might have walked away, ignored it, done something else.

But what would have happened to him then?

 

[BeckyJan]

when you would really have preferred not to have had to, when you might have walked away, ignored it, done something else.

We could get very picky about words here. I am not doing what I am doing because I am courageous. The 'necessity' comes because I love him too much to do anything other than see this through. From the outset I said we would deal with this illness as any other, eg cancer, heart disease - whatever. So that is it, we plough on faithfully - it is just unfortunate that the support agencies are not quite so available for dementia as other life threatening illnesses.

Jan

 

[Brucie]

But what would have happened to him then

and that sums it up entirely.....

Sylvia, people are not entitled to believe themselves to be courageous. That is the prerogative of others to judge on their behalf.

Wikipedia says "Courage, also known as Bravery and Fortitude, is the ability to confront fear, pain, danger, uncertainty or intimidation" It is my belief that dealing with dementia at times means confronting all those things simultaneously.

Believe me, you can leave the word 'courage' in.

 

[zonkjonk]

sylvia, you are courageous.

forced to live day by day as you do, having an alternative "out" but not taking it
every day facing up to the horror that is dementia
knowing that everything will become worse and more terrifiying

losing dhirian, inch by inch,day by day
but yet, you are totally dedicated to his needs, you make us aware of his pain, and yours, it seems to me that your whole focus is "hanging on"
and that is, in my definition, courageous.
we can beg to differ, its just my opinion, you are an inspiration to me regardless

 

[Grannie G]

Memory Clinic

Another uneventful week, apart from the fact it was a waste of time and he won`t be going again.

However he did come away with lots of printouts about Activity; what type of activity, why there`s the need for activity and the impact of poor activity.

D `What`s the point of going? There are no doctors or nurses there, no professional people, just people who talk about nothing.`
S `The person who runs the Group is a professional.`
D `How can she be, she`s not a doctor or a nurse and just chats.`
S `She is a Senior Memory Therapist.`
D `Well I can`t see the point of all this talking.`
S `The talking is to stimulate your mind, to make you think and to encourage you to talk to other people.`
D `I can`t talk to the other people. I have nothing in common with any of them. They all fall asleep or talk rubbish.`
S `You probably learn more than you realize.`
D `If I want to learn, I`ll read the paper, watch the news. That`s how I learn.`
S `But it`s good to do a variety of things. It makes it more interesting.`
D `If you like it, you go. You like these things, I`ll wait outside.`
S `Well it`s better to go in, than sit outside by yourself or sit at home on your own.`
D `That`s true. Are we going again tomorrow?`
S `No, not till next Monday.`
D `Thak goodness for that.`

Then........
D `What did you talk about?`
S `We talked about making a Life History Book. We are going to make a book of the history of your life.`
D `That`s good. It might be a best seller. We could sell it at £7.50p a copy.`
S `It`s not for selling, it`s just for us.`
D `You do it. You are good on the computer.`
S `I can only do it if you help me. You will have to fill me in with the details.`
D `All right.`

 

[BeckyJan]

Sylvia:

That conversation is so similar to some of ours. The trouble is I have given up the idea of 'activities'. The only thing D does now is to 'read' - ok it may be the same books over and over again but at least he is not appearing to stare into space.

We/I are in the middle of doing a 'memory box' but he is just not interested. I like the idea of a life history book for him - not that he will want to do it but it will be good for me to have and also to pass on to the children.

Did you benefit from the morning??

Take care Jan

 

[Margarita]

Just like to add

ok it may be the same books over and over again but at least he is not appearing to stare into space

that is the hardest part of caring for me anyway , seeing mum what look like , she starring into space , I would wave my hand in front of her , she take a double look and smile at me , now she does not do that , she does what she call naps siting up . her eyes are closed where she is I do not know, but when she wakes her face just glows ........ she looks around for me and smiles .

 

[Grannie G]

, but when she wakes her face just glows ........ she looks around for me and smiles .

Maggie that`s lovely. Your mother is still happy and secure in the knowledge that you are still there for her.

Love xx

 

[Grannie G]

Did you benefit from the morning??

Yes Jan I did.
We had a good imformal chat about respite care and day care at home and away, and were given a few contacts. I don`t need the contacts yet but they are good to have.
The list of activities is two sides of A4, and I haven`t been through them yet, but I will do the History of life book, as that will be interesting.

Dhiren has suggested it leads up to the time he started with Alzheimers. I think he thinks our book is going to give him reasons and cures, but I`ll face that when I come to it.

Tonight there is a programme about the construction of the Great Wall of China. As walking along it is one of our ambitions, now long lost, it`s second best and hopefully we`ll watch it together.

I heard a tale, but don`t know how true it is, that the architect of the wall ordered an exact number of bricks. The brickmaker couldn`t believe such a huge number of bricks could be calculated so precisely so he added one extra, just in case. When the wall was finished, that one brick remained, so it was put on a ledge and is there to this day.
Hopefully I`ll find out tonight.

How`s that for excitement.

Love xx

 

[Tender Face]

Humbled .....

Sylvia, I hope you don't mind me posting this on this thread - it seems the right place ..

Today I was 'forced' to spend more than eight hours in my mother's company, pinned within her 'four walls' with no chance of respite to even walk round the block to surface for air ..... a stream of workmen expected ....

I was just about keeping my good humour when she had told me about sweeping up 'fluffy balls' for the zillionth time within an hour .... (moss from the gutter I gather), we had several 'guessing games' - 'that woman - who lived on - oh I can't rememebr the name of the road - you know who I mean' (I didn't) ...... 'Next time you go shopping I need more of 'that stuff' (no clues given on that one) '..... and some more of that yellow stuff' (guessed that one straight away - she meant advocaat!)

I have had hours of 'conversation' - without having a clue what she was really talking about ...... (lots of 'wotsits' and thingummies) ...... I have tried to help her understand that washing powder is best kept in a kitchen cupboard not actually in the bread bin ....... I have heard how disappointed she is she refused an invitation to a party just last month because the Beatles were playing ...... and when she asked me if I was 39 or still 34 (I wish! ) - I didn't know where to go to hide myself so she couldn't see me breaking my bloody heart.

I promise never again to moan about the stresses of 'juggling'. I realise I have had the luxury of being able to 'walk away' this evening.

I hate this b*****y disease and what it does to people. (Where's a sobbing smiley when you need one?) A lot of insight today - and huger respect than ever to those caring for 24/7 - I was deffo not cut out for it.


Sorry, Karen

 

[connie]

Sylvia, so glad you had a good meeting. and at least Dhiren went again today. Progress. Next week, who knows?

The 'History of Life' book sounds a very good idea. Let us know how you progress, please.

Karen, you tell it so well. 24/7 caring is hard at any time, but the constant wearing away of patience is hard to take. That is, of course, until communication ceases, then again we moan.

I join you in your words, quoted below:

I hate this b*****y disease and what it does to people. (Where's a sobbing smiley when you need one?) A lot of insight today - and huger respect than ever to those caring for 24/7 - I was deffo not cut out for it.

Take care all,

 

[Grannie G]

No need for apologies Karen, no need for excuses.

Being tied in with workmen in your own home is bad enough, but in someone else`s even if it is your mother, it`s totally different.

Plus the fact that such a long continuous time with her makes you more aware than ever, how she lives.

It`s very sad, but you are doing your level best to keep her in her own home as long as possible.

Take care

Love xx

 

[BeckyJan]

I didn't know where to go to hide myself so she couldn't see me breaking my bloody heart.

Been there, done it!!!!! Understand only too well, Karen.

Glad you posted this, however sad it all is, cos we can all share with you.

Take care Jan

 

[Cliff]

Hello Karen

After a while we don't seem to notice until someone else mentions it - or something new happens.

But the ache never goes

 

[Bristolbelle]

Karen

My Mum was keeping lots of gardening products in her breadbin, Tomato fertiliser, weedkiller, seeds, and dibber etc, heaven knows why the bread bin. Anyway luckily when we had the extension built there was no room for it! Oh and the bread - that was always in the veg rack - well where else would you put it!

Don't feel guilty because you don't care 24/7 you obviously care enough to be there when your needed.

Hugs
Firebelle