And so it goes on...

Grahamstown

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Jan 12, 2018
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I tried to get him up to go to friends for coffee but in vain so I went alone. That is the second outing he has been unable to make due to tiredness and fatigue. He is contented at home and sleeps a lot so I let him be because I can go out for a short time and leave him at home in bed where he is safe so far.

It’s worth mentioning that he no longer seems able to remember to make coffee or eat any lunch I might leave for him. So that is now limiting my activities because I must be there to help him with that.
 

Grahamstown

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I have just heard a quote made by Stephen Hawking “it’s the past that tells us who we are, without it we lose our identity”. I think that’s the heartbreak of dementia.
 

AliceA

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May 27, 2016
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I tried to get him up to go to friends for coffee but in vain so I went alone. That is the second outing he has been unable to make due to tiredness and fatigue. He is contented at home and sleeps a lot so I let him be because I can go out for a short time and leave him at home in bed where he is safe so far.

It’s worth mentioning that he no longer seems able to remember to make coffee or eat any lunch I might leave for him. So that is now limiting my activities because I must be there to help him with that.

I noticed the fact of not eating or drinking a few years back, I have to be here in case of choking but I suppose you could try as long as possible to phone to jog his memory. At least you could get out a bit. It is a gift not really appreciated until it is not there. I was amused when one of the family found not having a car was a tie this week.
For your sake keep getting out while you can.
 

Grahamstown

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you could try as long as possible to phone to jog his memory
That’s what I did, I called the landline which he will still answer, found out that he was up, asked if he had had his breakfast but he hadn’t even though I had left it ready, so I reminded him. When I got home he had had breakfast but forgotten to get a cup of coffee. This is a new development.
 

kindred

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Apr 8, 2018
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I have just heard a quote made by Stephen Hawking “it’s the past that tells us who we are, without it we lose our identity”. I think that’s the heartbreak of dementia.
Oh now that is interesting. You could have an entire conference on that quote. On what is identity. There's another aspect I use with clients a lot, one that youngsters like, it's: we are what we repeatedly do. (One of the Ancient Greeks or other said that). Keith still smiles, laughs, sings, loves it when people talk to him ... So there is another aspect of identity still there.
I guess I would say it's how we navigated our past that tells us who we are ...Keith navigated his with laughter, smiles, loving ... What an interesting post, thank you! with love, Kindredxxxx
 

Grahamstown

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I guess I would say it's how we navigated our past that tells us who we are ...Keith navigated his with laughter, smiles, loving ...
I think that it also questions what is identity and how important is memory. After all, it’s the person within that counts and who am I to judge what is within another person. I always say that he is contented in his world and I mustn’t project how I might feel about being in the same world. I think that’s what all his friends do, think how terrible it would be for them, but I think it’s us who have to bear the knowledge, the person with dementia by definition doesn’t know.
 

AliceA

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May 27, 2016
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Do you think we our inner deeper identity is feeling connected and compassion is the key to this?
The warm feeling of being loved but also when one connects with a stranger through a joke, a shared moment when eyes meet and there is a smile exchanged with the check out girl, the waiter, the bus driver.
Our identity is perhaps a reflection in the inner eye of another person.
For some of us who meditate or pray perhaps it is a reflection of our inner being. A feeling of connection.
Can we do more to make someone feel connected, small touches, hand holding, hugs and smiles?

I admired Stephen Hawking but I wonder whether the quote may have been true to him but may not be true universally.

If you both have an answer please do not ring me at 3 am!
 

PalSal

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Dec 4, 2011
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Pratteln Switzerland
Hello @Grahamstown and @PalSal - the best tracker is probably a GPS watch - but my husband just wouldn’t wear it . And it’s hard to insist - so if your husband thinks to take his phone with him -that’s perfect.
I thought my husband was a deaths door Tuesday night - then he woke up Wednesday- near normal - but slow - I am like Pavlov’s dog - I don’t know what to expect!!
I was planning an OS trip to Singapore next month - I think I should buy the tickets the day we go !!
Perseverance and resilience !! That’s what we all need . It’s s form of palliative care and I try to be grateful that I’m here to do it ! :mad:
@Mudgee Joy My husband cannot use a phone or even contemplate one now (actually the last 5 years or so) So this very small unobtrusive devise which clips on his belt or inside his inside coat pocket works very well. He walks (only accompanied) and is physically fit. But it is a requirement of the daycare that he wears such a device. In Switzerland if for any reason he wishes to leave the facility it is the law that he be released and we could then track him. But so far , he has never wondered or willing to be alone.
 

Grahamstown

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I think he SH touched on an existential question. I don’t know the answer but I do know that his perception of the past is skewed and we have only present shared experience, not past. Actually I don’t mind too much because I have always lived in the present, remembered the past and prepared for the future as far as necessary. So now I live with him in the present, give him plenty of photographs of our past to look at, which fortunately he enjoys. The future is an unknown country although I daydream of imagined pleasures, one of which I have acted upon, a cruise! Our son has started family sharing photographs on our iPads which brings us into the daily lives of the grandchildren, my daughter has joined, so in a way, Dad’s dementia has become a focus for the family to share experiences. Of course we could have done it before but we see each other regularly so it never sprang to mind. His response to the photographs is odd, he sort of knows who they are but seems not to realise what they are, as if he is remote at an arms length. Hope you all enjoy the lovely weather today (((hugs)))
 

Grahamstown

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Jan 12, 2018
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My husband cannot use a phone or even contemplate one
The same with us but so far the iPhone has been successful. Looking back I can see that his problems using his mobile phone were a symptom of something not quite normal, and see it in other people who have some mild cognitive difficulties.
 

Mudgee Joy

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Dec 26, 2017
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New South Wales Australia
I’ve just been catch up reading and would love to have a good chat on the subject. I am a heritage adviser in my other life and I can agree with SH in a physical way - we forgot how much of the past is part of today - the skyline - the long lived trees - the older buildings all speaking of past times and now. We are always part of our past even if unheeded.
On Sunday I had a peaceful day - sewing some covers for a couch.My mother was a seamstress and I did think of her while I sewed - I leant ways with my hands when sewing from watching her - not intentional - but I sometimes I recognise such movements.
So even though our dear ones are lost in the present - and not moving between the past and the present- they are totally part of our past - and we are of theirs.
Love to you all x
 

Grahamstown

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Jan 12, 2018
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SH’s remark is very much of the ‘Discuss’ variety. I know what he means because for example adopted people search for their blood relatives, descendants of slaves search for their origins to make sense of who they are. People who forget are different I think, they have got a history they just can’t recall a lot of it but are aware of the present, however muddled, bizarre or fragmented it may be. I guess it’s fascination with the working of the brain which living with a PWD brings into sharp focus.

On the home front, he is a lot better this morning after a bad couple of days spent mostly asleep and restless when awake even though he was exhausted walking 1.5 miles, more than usual. I am hoping for a calmer me today.

@Mudgee Joy your husband sounds like such a sweetheart rather like mine who is such a sweet man but no short term memory to speak of now, and no strength.
 

kindred

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Apr 8, 2018
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I’ve just been catch up reading and would love to have a good chat on the subject. I am a heritage adviser in my other life and I can agree with SH in a physical way - we forgot how much of the past is part of today - the skyline - the long lived trees - the older buildings all speaking of past times and now. We are always part of our past even if unheeded.
On Sunday I had a peaceful day - sewing some covers for a couch.My mother was a seamstress and I did think of her while I sewed - I leant ways with my hands when sewing from watching her - not intentional - but I sometimes I recognise such movements.
So even though our dear ones are lost in the present - and not moving between the past and the present- they are totally part of our past - and we are of theirs.
Love to you all x
Do you know that lovely quote from Great Gatsby - last line
So we beat on, boats against the current, borne back ceaselessly into the past.
Gxx
 

Mudgee Joy

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Dec 26, 2017
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New South Wales Australia
Dear everyone - we are all so much of our past and present - thank you for your thoughts -
I was just watching a mindfulness programme. I did a course a few years ago - but with all the adjustments made with my Norm’s new problems I had forgotten to practice at all -I must dust off my memories and try some mindfulness again!
And I have a big weekend coming up - my husband has been invited for a weekend away - a special holiday of 2 nights that dementia carers run for men only :cool:
- a weekend break in the next town and my husband is booked in. Naturally I am very anxious - but a good friend said “remember these people are specialists - the staff ratio is excellent and the house is designed for purpose -‘ so I will hope to have a restful weekend - and hope he is having a good one too !! Will see - love mud-Joy xx :)
 

Helly68

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Mar 12, 2018
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Given the discussion above about toilets, it may help to get a RADAR key, giving easy access to many disabled toilets nationally. These are bigger (though still not very well equipped) and make it easier to change and dress if required and one person cold wait for the other in the toilet rather than having to wait outside. Our local council run swimming pool has accessible changing - a dedicated toilet, ceiling hoist etc and as I have a physical disability I find it great and when my Mum was less ill, she used it as well as she enjoyed swimming.
 

Grahamstown

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Jan 12, 2018
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- a weekend break in the next town and my husband is booked in. Naturally I am very anxious -
I am the same, I want a break but will anyone else be able to look after him with all his funny little ways like I do. I have to tell myself that I am not indispensable and of course other people can. At the same time I do wonder if it is my temperament that contributes to my own stress level because I get impatient with him. I went off for the morning and my cleaning lady looked after him and made sure he had his lunch etc. He was on his bed when I got back. I feel refreshed but preparing to leave him was stressful.

I have just got the MOOC Understanding Dementia course information, which I signed up for, and am starting to work my way through the first task. I shall report back from time to time but other TP members have recommended it.
 

AliceA

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May 27, 2016
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I think of row row row your boat gently down the stream,
going with the flow and remembering the reality of dreams.
Sometimes things really do happen when we drift on the tide. I chased for transport to get to a day centre for months, decided to stop and cope without.
Suddenly an offer with transport has turn up.
 

AliceA

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May 27, 2016
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I am the same, I want a break but will anyone else be able to look after him with all his funny little ways like I do. I have to tell myself that I am not indispensable and of course other people can. At the same time I do wonder if it is my temperament that contributes to my own stress level because I get impatient with him. I went off for the morning and my cleaning lady looked after him and made sure he had his lunch etc. He was on his bed when I got back. I feel refreshed but preparing to leave him was stressful.

I have just got the MOOC Understanding Dementia course information, which I signed up for, and am starting to work my way through the first task. I shall report back from time to time but other TP members have recommended it.

I have done introduction and earned 1 point! I could not get my photo loaded however.