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

[TinaT]

Oh Sylvia, I feel so much for you. The ups and downs, the blustering and the remorse, all the opposites of emotions from one hour to the next - so emotionally draining. Our world is topsy turvey, our heads are spinning, and our hearts are broken so many times in 24 hours.

Margarita, please do think carefully about giving up your job. I'm not sure why your son needed you so badly to be there on that particular day. It seems such a shame if you can't work something out which fits in with caring for your mum. If the worst comes to the worst and you do have to leave, then the suggestion to try to get yourself onto the sick for a few weeks seems to be a very good idea. At the very least your insurance stamps will be paid for a few more weeks.

Take care both of you. I'm thinking of you and hoping that tomorrow will bring a better day.

xxTinaT

 

[jenniferpa]

Sylvia - I just don't know what to say - I think this is so sad this awareness that Dhiren has.

Maggie - I'm not an expert on this but I would think if the contract specifies that you have to give 4 weeks notice after 4 weeks it should specify what sort of notice needs to be given before that, and if it doesn't, then no notice is required. I do think if at all possible you should leave, if leave you must, on not bad terms even if it can't be good terms. Eventually you'll want to be employed and you don't want this episode sticking to you.

 

[lesmisralbles]

Dear Silvia

And how do you feel?

We worried about you when Dhiren was challenging. Now he's quiet, it should be easier, but in a way it's even more worrying, because he is aware of his problems, and must be so sad.

Silvia
I agree with Hazel. Ron is also sad, he know's something is wrong with him. I have never had the challenging problem's, lucky me

I now have the silent, the forget what to say, start a sentence, cannot finish it, blank look, staring into space, or onto the floor. Not hearing what I say. Asking me after a simple thing, what do I do next ?
I feel for you, and all of us X

Barb X

 

[ROSEANN]

Dear Sylvia
So sorry things have been so bad for you.

You are always in my thoughts as so many of the things you are going through ehco our life.

Sending you lots of hugs.
Roseann

 

[Sandy]

Dear Sylvia,

What happened this morning must have been quite shocking. I know when my MIL exhibits some new behaviour it always gives me a lurching kind of feeling, like the floor's given way beneath my feet.

Even though it's a shock at the time, I can often look backwards and see how the little bits of individual behaviour were starting to form a pattern. Still, when they cross a certain line, which might have seemed a bit abstract in the past, it can be very startling.

I'm sure it was also painful for Dhiren, but at some level it was good to know that he recognised your very understandable distress, even if he couldn't be held responsible for the behaviour that triggered it. It shows that he still has (at times) insight into his condition and has real empathy towards you.

He wants to see a doctor.

I told him what has happened in the past; he has bad days and wants to see a doctor, but by the time it can be arranged he feels better and refuses help.
He said it won`t happen this time, he knows he needs help.

But I`m not banking on it.

How do you think Dhiren would respond to the idea of him writing down some of his feelings, concerns (or actions that gave him concern) prior to meeting with the doctor? Ideally, what you want is for him to be able to give the doctor a realistic picutre, but for Dhiren to still feel that he is in control of the process. A tall order I know.

Would Dhiren be able/willing to keep a simple daily diary?

I enjoyed reading about your Diwali celebrations. I only encountered this when my daughter learned about it in primary school. Is there any local temple or community association that might have more to offer?

Take care,

Sandy

 

[Helen33]

Dear Sylvia

Just wanted to say "Goodnight" before I try to sleep. I was thinking today that it's a good job you started up the knitting again because it is a way of being able to be still and being occupied.

I hope tonight is uneventful.

Love

 

[Grannie G]

Thank you so much........................

.........for so many thoughtful and caring posts.

Yesterday was a sad day.

Last night, following a mostly silent and subdued day, Dhiren had difficulty getting into bed. He faced the bed, knelt with one knee, and practically threw himself down on the bed, bumping his shoulder as he did so on the bedside cupboard.
I`m afraid to talk about it as I`m not sure if he recognizes his increased difficulty, is in denial of it or doesn`t realize.

Hazel, I feel sad for him but all right in myself. I`m on the verge of tears most of the time but i expect you know that feeling too.

Sandy, I have a piece of notepaper in Dhiren`s writing, saying he wants to go to the day hospital because he is lonely and would like some company. But it was impossible to hold him to it.
I have asked if he`d like to write down his feelings on bad days, so we can show the doctor but he is not too keen on that idea.
Instead he asked me to get him a notebook as he wants to learn French. He was asking the French for the numbers 1--10, when we were watching the French tennis finals.

Last night we both slept well. No waking during the night, no disturbances.

Today he is a little better but not much. I went to the shops leaving him staring into space just like you see in what we consider the more inferior care homes.
He is just beginning to show some signs of animation now.

I can only wait and see.

 

[connie]

Dear Sylvia, although Lionel had spatial awareness problems from very early on in the illness, I always found they were far worse when he was 'in a confused state or very down'.

Indeed he would often try to get into bed with his feet on the pillow (completely the wrong way round). As for talking about the difficulty, that was the only area that Lionel could never see he had problems - memory yes, mobility/spatial no).

We do spend so much time and energy in trying to keep our loved ones mobile and orientated, and yet looking back I can see that it was Lionels mind that dictated how he was, not anything that I could do. (Hard lesson to learn)

I do hope that as Dhirens spirits lift a little he may regain some more of his awareness.

Hazel, I feel sad for him but all right in myself. I`m on the verge of tears most of the time but i expect you know that feeling too.

Sylvia dear, we all know your immense love and compassion for Dhiren
it is so understandable that you feel like crying sometimes.

 

[Grannie G]

Thank you Connie.......................

............your post really helped.

The spatial unawareness has been there from the start, but now Dhiren is like a brick wall. He has no idea when he is in my way and I want to pass; a natural reflex reaction pre AD . But the trouble he had getting into bed last night was new.

Once he had his knee on the bed, he didn`t throw himself face down, he seemed to twist his body so he would finish up on his back, and that`s how he banged his shoulder.

This morning he was less upset and confused so managed his movements. So it`ll be down to observation again.

The lady from Crossroads has just phoned. I have asked her to take Dhiren off her books. There`s no point in wasting her time. The time may come in the future and I will know what to do when it does.

 

[CYN]

Sylvia getting in to bed was one of my husbands problems towards the end, i would sit him on the edge and ask him to put his head on the pillow and he did but face down and i could not put his legs up in this position....this is when we got into problems of him slipping to the floor and calling the ambulance to lift him up and of course when he got up in the night to visit the loo we had the same fun and games....

love Cynthia x x

 

[Helen33]

Dear Sylvia

I just wanted to say I'm sorry that yesterday was such a sad day and that it can take quite a while for Dhiren to get back to feeling o.k. again but then he doesn't recognise there is anything wrong. It is hard for you either way. I realise there is nothing that I can say to ease the hardship of this but I can let you know how much I value who you are and how you deal with things.

Dhiren was showing signs of animation earlier on and I realise that this can mean anything with Alzheimers.
Love

 

[Grannie G]

Thank you Helen and Cynthia.....

Dear Cynthia
I shall just have to wait to see whether or not this difficulty goes away or develops. Whether as Connie found, it becomes worse with confusion or will be a gradual decline.

Dear Helen
Happily, this evening`s animation has been uneventful. A near back to normal Dhiren.

Love xx

 

[Lynne]

Dear Sylvia

Reading your account of the last few days with sadness, sympathy - and total admiration for your fortitude.

I hope you get some 'ups' and level ground to balance the down-days.

Love

 

[Grannie G]

Losing language? comprehension?

Dhiren gets a weekly magazine called India Today.

This week`s contained news of India`s Moon Mission. He was very excited by it.
He has been reading since it came on Friday. Yesterday he had problems following the sequence of paragraphs which were interrupted by photographs. He asked me which paragraph followed the previous one. He knew what he was reading didn`t make sense but was unable to identify how to make it right.


Last Night.
Neither of us were ready for bed so I looked to see if there was anything worth watching on television.

BBC4 .....Indian Railways.... a programme to interest us both.

I found it fascinating.
Dhiren began to watch it, watched for a few minutes, then picked up his Indian magazine and became `engrossed` once again, in reading about the Moon Mission.
I can`t believe he found the programme uninteresting so can only presume he was unable to follow the programme.

 

[TinaT]

Dear Sylvia,

Ken's spatial awareness problems came on very suddenly and were very severe immediately. They coincided with all of the other behaviour problems which came at the same time. All the posts about getting into bed rang true for me.

What absolutely amazes me is how when we are getting into the car he can, at times open the door and climb in without problems, but many times it is quite a job to get him seated. Also very occasionally after I have given him the buckle to his seat belt, clip it into place. Sadly and much more often, he can't even hold the buckle for a minute whilst I get round to my side of the car and am able to clip it in.

I think it is wonderful that Dhiran can read and get pleasure from reading. Marvellous!! Even if it is only for a short time. How strange and puzzling the brain is Sylvia. And how it plays havock with our emotions when one minute you feel he is showing skills which make you feel secure, and then - bang - the problems hit you smack in the face with such a blow! No wonder you cry. It is like having the rug pulled from under your feet a million times a day.

xxTinaT

 

[connie]

Sylvia your post set me thinking back...........

Lionel always read the papers, he worked in Fleet Street, and had a great interest in current affairs.

As reading newspapers became problematic he took to TV news bulletins. One day, immediately after watching the news he was trying to access teletext "to get the news headlines".

He was able to explain that 'people speak too fast, and the subjects change too quickly', so for a while teletext became his favoured choice - as the news items weremore concise and segmented - he was in control of going on to the next subject - all in his own time.

In the same way, ultimately he was unable to wach anything that was new on TV, despite being interested or favourite actor etc, just because his thought process could not keep up with it.

Hope this helps in some way to understand where Dhiren may be 'in his head'.

 

[Grannie G]

He was able to explain that 'people speak too fast, and the subjects change too quickly',

Hope this helps in some way to understand where Dhiren may be 'in his head'.

Thank you Connie, it certainly does help. I have problems understanding our eldest granddaughter, she speaks so quickly.

TinaT
What absolutely amazes me is how when we are getting into the car he can, at times open the door and climb in without problems, but many times it is quite a job to get him seated. Also very occasionally after I have given him the buckle to his seat belt, clip it into place. Sadly and much more often, he can't even hold the buckle for a minute whilst I get round to my side of the car and am able to clip it in.

Dhiren is like this when he walks. Generally he shuffles, but when he has an intent in mind , he strides ahead purposefully.

 

[Brucie]

These are interesting comments about speech comprehension. We have other threads on TP discussing the need sometimes to say something - but not to expect a reply quickly. Then some time later, the reply comes.

I think dementia can cause the body to work a bit like live radio can - sometimes the live broadcast is delayed a few seconds so that the station can immediately catch anything that is said that may not be appropriate, so it does not go out on air.

Dementia seems to impose a delay, or lag, in processing what the ears have heard. This may also apply to sight - to interpreting what the eye can see. With TV, there may be delays of both vision and hearing, and the ability to synchronise the two may totally be lost.

Just my thoughts and observations.

In general TV has also become difficult for others who don't have dementia to understand these days, with the need to have poor diction everywhere, it seems.

Accents are brilliant, they are what make for an interesting population, but poor enunciation and grammar simply make communication impossible at times. That is normal in most contexts, but on TV it is particularly troublesome.

more thoughts.....

 

[Canadian Joanne]

My mother carried on "reading" quite a while after she lost interest in television and movies. She and my stepfather were avid movie fans (well, he was) and they would go to the cinema at least twice a month. Eventually they stopped going because my mother found the movies "stupid". She lasted a little longer with TV but they were watching favourite programs which had repeating characters and settings she had become familiar with.

She carried a book around that she was "reading" for at least 2 years after she no longer comprehended what she was reading. i actually think it was several more years than that, as in 2000 she would "read" for about 5 minutes & then start something else. But reading was something she had always done a great deal of so I think the carrying of a book was comforting to her. I kept up the charade of getting her new books to read from the home's library etc. It seemed to make her feel normal.

She had a newspaper delivered to her room in the retirement home for the first year or so. I simply kept up the habit she had had, until I was sure she was no longer interested.

We have other threads on TP discussing the need sometimes to say something - but not to expect a reply quickly. Then some time later, the reply comes.

Mum certainly would have a delayed response to any questions/requests. I can remember not so patiently repeating myself about 5 times and about a minute after the last request, the lightbulb came on and she said "Oh, you want me to ...." whatever it was. I could SEE by her expression exactly when she understood what I had been asking & almost expected her to ask "Why didn't you say so in the first place?", such was the expression on her face.

 

[Grannie G]

Tonight;
D` How long are we staying here?`
S `We live here, it`s home.`
D pointing to the television [Sky News] `How much longer will they stay. I don`t want to live with all those people.`