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

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Grannie G

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Apr 3, 2006
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lol , Sorry just wondering why it would have to be set up to beep . I just thought you look up where they are on the computer, when your worry about where they have got it .

Shows how much I know about tracking devices and the like. :rolleyes: It was Helen mentioning a `beep` that led me to believe that.
 

lesmisralbles

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Nov 23, 2007
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I would not let Ron out of the door

Sorry, Silvia, how do you put up with the wandering's?
I lock the door's. I hide the key's. I have enough to cope with. I, or you do not need that extra worry. No, Ron is not a prisoner, but I know he is safe.
Silvia, I take my hat off to you.
Love Barb X
 

Grannie G

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There is no way I can keep Dhiren in Barb. He has his key and has always gone out, he used to be a walker.
I couldn`t lock him in, he would be like a trapped tiger. I have to give him some freedom, he thinks I`ve taken everything else away from him.
 

lesmisralbles

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The biggest thing I have taken from Ron, it is his car.
It is my fault, I told the DVLC - about his eyesight, his Parkinson's. I told Ron, I had to. His insurance would be invalid. I did not tell them, I just filled out the form's they sent us. I told the truth.
I had to protect him from any injury, or, him injuring others.
I feel like a right Sh-t, but, even more of one, if anything had happened that Ron caused.
So, now what I have taken away, I try to give back - in other way's. If he is happy, I am.
Barb & Ron X
 

Grannie G

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We have had two very difficult days. Days full of resentment, anxiety and restlessness. Days full of sadness and confusion.

Today, at 11 o`clock, I knew it was going to be better. Dhiren`s face relaxed, his eyes focused and he was `with` me again.

I said, ` You feel better now don`t you?` And he said `How did you know?`
 

lesmisralbles

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Again, I ask the question

Hi all
Today, Ron has slept all day. He think's he had metal pin's in his hand's. Delusion's. It is his fingernail's, he clenches his fist's, they dig into his palm's, hence the illusion's.
The question, well, WHY. Yesterday, not bad, today, not good.
However ---
Tonight,
Ron, do you fancy an Indian takeaway ?
Yes
YUM, Yum, Yum. Did he enjoy it.
YES,YES,YES.:)
However, Ron said, that was spicy, no Ron it was mild.
Did you enjoy it?
Yes, very much. Is there any left over, ?
But do not give it me again.
Why, you enjoyed it.
Yes, but it was so nice, I might want some more.

Go, figure !!!

If I knew then, what I know now.
I think, - well I know, I would not alter a thing.
Love Barb & Ron X:)
 

helen.tomlinson

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Mar 27, 2008
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Hello Sylvia

I really enjoy reading your thread (if that's what they're called). It's like visiting friends and asking "how are you, what's been happening?". You are so open about what's happening and how you are. I suppose you might take these things for granted but to me, new to all this, it is very encouraging. You give me the courage to just be.

About Dhiren going out. Although I'm new and obviously don't know the whole story, there's nothing I can recall that says he is a danger to himself or anyone else. The danger seems to be that he could be taken advantage of because he doesn't realise how vulnerable he is. How do you cope with him going about with a bank card? Do you have a special account set up that has a small amount of money in it (thus enabling him to have a card and pin number) but saving him from being taken advantage of should the occasion ever arise? I bet you've thought of all these things!!

I had a CPN come to visit for the first time today and I was telling her about TP. In fact it has been that helpful to me that she said I was doing all the things that she could have suggested anyway. Anyway I did a little forward thinking and asked whether I could have an occupational therapist visit Alan to see if there were ways of enabling him to keep whatever he has for as long as possible. She was really keen after having been with us for about 2 hours. Alan was able to get across how disappointed and let down he felt about his treatment so far. I said he now keeps saying this to anyone "official" who comes and unless someone official is prepared to explain to him the results of his tests and scans, I don't think he'll be able to move on. I said also that by getting the results explained adequately to him it will show whether this is a part of the illness bcause if he then keeps saying no one's explained anything to him I will know that it's not true. I don't know it's not true presently because he is absolutely right!!

Now that Dhiren is back, so to speak, does this mean that he stays back for a while, enabling you to recover a bit, or do you never really know?

I do send my very best to you both

Love Helen
 

Grannie G

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Hello Helen.

I suppose Dhiren is becoming more vulnerable, but he is only a danger to himself or anyone else in that he could be involved in a road traffic accident. He is very nervous of traffic though and always uses a crossing if available, and never takes chances, as he`s too unsteady to hurry.

He carries some cash, would never remember a pin number, and the bank know him and humour him. If he asks for his balance, they give him a balamce slip showing he has £30 and he`s happy.

I find it very difficult to get specific information from doctors. Because everyone is so different and other factors affect the development of dementia, and because there are so many dementias, the medics just seem to say it is because it is. And I can accept this.

We had a major cause for concern when Dhiren began to have, what I can only call a lapse, nearly every evening after dinner. AS soon as he finishes his meal, or sometimes just before he finishes, his head goes funny/dizzy/fuzzy. He has to be helped from the table and he sleeps for about an hour. Then he comes round slowly and is fine.

It turns out this might not have anything to do with Alzheimers, but might be a symptom of his diabetes and to do with the stress of digesting a large meal.

So now, he doesn`t get frightened when it happens, just goes with it and knows he`ll come out of it.

So if Alan gets answers, I`d be surprised, because there are so few answers and even the medics are still learning. I understand Alan wanting answers. I imagine it is to enable him to feel in control.

And in answer to your query when Dhiren will have his next `episode`. Who knows.

Thank you for your concern and your interest.:)

Love xx
 
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Grannie G

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He woke with a blank face, washed and dressed, had breakfast and slept intermittently till 12 noon.

During the waking periods he was asking where he was, how long he`d been here, offering me £30 for food, asking how much I needed for his rent.

When he woke he began to talk and ask about his state. What had happened, how had he been, can we see a doctor, how could his head be so fuzzy and then suddenly clear.

And we talked about Alzheimers and the effects it has, a rational and reasonable discussion. And Dhiren said he`ll just have to `grin and bear it` and make the most of the good times.

It has been a beautiful day. I suggested we go out. He agreed, but backed down after lunch, he wasn`t up to it.

So we watched an old James Stewart film this afternoon and he loved it. It was a shared pleasure.

When the film ended, I went into the kitchen to make a drink. When I returned to the living room he was smiling.

S `I really enjoyed that film.`
D `I`m going tomorrow. I`m going back to Manchester`
S `OK.`
D `I can`t sit here like a zombie all the time. I`ve got to do something.`
S `What will you do in Manchester that you can`t do here?`
D `I`ll get a job, earn some money, see people, do something.`
S `Why don`t you try to do all that here?`
D `I want to go.`
S `Well just go, but I`m not prepared to talk about it.`
D `I`m not leaving you. You take it personally. I`ll come back in a few months.`
S `You can go when you want and come back when you want but I`m not talking about it. It happens every night and it`s part of your condition You can`t help it, it`s called sundowning and it will pass soon.`
D `I`ll show you it`s not sundowning, I won`t get my clothes out tonight, I`ll get them out tomorrow.`
S `Fine. Now if you don`t stop talking about it, I`m leaving the room.`
D `You don`t have to leave the room. I`ll leave the room.`
And he did.
 

sue38

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Mar 6, 2007
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Sylvia, I'm so sorry that this 'phase' seems never-ending.

Reading between your lines I presume that Dhiren has worked all his adult life and now feels guilty that he is 'sitting idle' and can't understand the concept of a pension.

My Dad too, at 83, can't understand why he is retired, or even what the word 'retired' means.

I suppose that people with dementia feel useless and want to justify their existence with doing something useful. Dhiren probably associates living in Manchester with being useful.

I know that after nearly 20 years of working I feel guilty at sitting watching a film in the afternoon even on a weekend, let alone after 40 or so years.

Just thinking aloud, but is there some sort of 'job' that could be found for Dhiren to give him back a sense of self worth or a sense of purpose without making him feel a failure? If you have a brain wave let me know, as I'm sure that's just what my Dad needs.
 

Grannie G

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Apr 3, 2006
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is there some sort of 'job' that could be found for Dhiren to give him back a sense of self worth or a sense of purpose without making him feel a failure? .

I wish there was Sue. He doesn`t even want to help me with anything now, either he resents doing it with me as I`m checking up on him, or he hasn`t the mobility, or the stamina, or is just not interested. Everything will be done `tomorrow`.

He was so looking forwards to retirement. He had worked hard all his life and saved for retirement, like so many others.

We had plans for all the holidays we couldn`t afford when we were younger. Even now he wants to discuss holidays, but like everything, he only wants to talk, he is unable to `do`.
 

helen.tomlinson

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Mar 27, 2008
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Hi Sylvia

Oh Sylvia I am so glad that you both had a lovely time today. One of those precious days (or part day). I am really glad for you. Alan is chipper today but I've ended up running about trying to get his passport sorted, countersigned, etc. You know what's involved. We were with some neighbours (not too near neighbours) earlier this evening and I watched their faces as they were trying to understand what Alan was saying. I could see them glaze over and I do find that so hard. I can imagine what it's like for them and I know that Alan doesn't even notice that they are finding the whole thing incredible difficult. It makes me want to stay away and protect everyone from experiencing this illness. However, I wont because it does Alan good to be with people - he doesn't get enough contact really.
All the family are delighted he's going abroad for the first time and I keep wondering whether they can really be that delighted or whether they are relieved that nothing will be required of them whilst I'm away. Bet you think I'm right uncharitable!!

Anyway good night Sylvia and Dhiren

Love Helen
 

margaret savage

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Mar 20, 2008
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Hello all,
Has anyone any advice on any ways to try and stimulate my mum to get interested in something - anything at all would be an enormous achievement. She no longer reads or does crosswords which she used to love, rarely takes note of tv programmes, and even has trouble recognising they are only make believe and can get quite upset, so I just turn the tv off when that happens.
I try to get her to read the newspaper but she only wants to read a headline and then puts the paper down again.
Maybe I am expecting too much from her and it is a normal symptom of this horible illness. I just feel so sorry that she always seems so bored and I can't help her. Sometimes I really struggle just to start a conversation with her as it may make her anxious. She frets continuously if I even mention I am taking her somewhere and physically shakes at times, so I feel it's better not to say too much. It would be so lovely to see a little spark of interest in her little face instead of the look of confusion that's there mostly.
Please let me know if any ideas you have had have worked for you.
Thank you,
Margaret.
 

Grannie G

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Apr 3, 2006
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Hello Margaret.

Your mother sounds very much like my husband. He has very little staying power and only has a couple of interests now.

He will listen to CDs and watch DVDs of his favourite performer Andrea Bocelli. He asks qustions whilst he`s watching/listening, which I find distracting, like
` When did he go blind?`
` Is he married?`
` Has he any children?`
` Is he blind in both eyes?`
I sometimes feel it helps him to know of someone worse off than himself, as hethinks it`s much better to have Alzheimers than to be blind.

And he too reads mainly the headlines in the papers, perhaps an occasional article. So I read the paper to him and he enjoys that.

When we watch TV, even soaps, my husband asks if it`s real or being acted, so it`s better if I watch with him and then I can tell if he`s getting confused.

He will listen to the radio, Classic FM or Radio 4, Any Questions, programmes like that, but I have to find them and suggest them, switch them on and listen with him.

It is very difficult trying to relieve the boredom.
 
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lesmisralbles

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Nov 23, 2007
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What did I do wrong last night?

Here we go again.
It is a record that has stuck, gives our age away.
Me :We have the speach therapist coming tomorrow
R: Why?
Me: Well, she will help you with the dribbling you do, and your swallowing liquid's, perhap's get you off using straw's.
R: I do not dribble
Me: OK
R: My nose run's
Me: OK
R: so what time is she coming
Me 10-30am
R: so I have to get up
Me: No, I will have to get you up
R: I alway's get up
Me: Yes you do, about 4am 5am bit early Ron
R: yes but I get up


Goodnight and godbless (The godbless bit is fron Ron)
Barb and Ron, New's at Ten, Cheshire.
PS
You all by now, well, you must know I love my Ron.
I am not religious.
But if anyone out there would like to say a little , whatever, for Ron
I sopose, it cannot do harm. This in no way, invites religious nut's. Because, at the moment, I will take any help I can get.
But no nut's
Thank you and goodnightX
 

Skye

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Aug 29, 2006
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Margaret, I'm not sure what stage your mother is at, but it could be that she is beyond being stimulated.

If the thought of going out upsets and frightens her, maybe you have to accept that.

People often comment on care homes where people with dementia are just sitting in their chairs staring into space, or sleeping. Well I've spent an awful lot of time in the last six months visiting John's care home, and that is just what a lot of the residents do -- because that is what they want to do.

I know for a fact that they are not drugged, the home does not believe in that, and there is an excellent activities co-ordinator who tries hard to stimulate them. Some days some people will respond, and that's all you can hope for.

Music is the best stimulus if your mum is at that stage. Lovely peaceful music on quiet days (Mozart works well for John), or occasionally something more lively , like songs from the shows, or Harry Secombe style songs, especially if you can sing along to them, and encourage her to join in.

The best thing is to take things at your mum's pace, and keep her cheerful and comfortable. To you it may be boring, but it's not necessarily so for your mum.

Good luck,
 
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