And so it goes on...

Duggies-girl

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Sep 6, 2017
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Well done finding the pants and socks. I don’t think my husband would ever change them if I didn’t do it every few days. He used to be so meticulous too. That lingering cough is dreadful and I always resort to endless ways to control it especially at night. It lasts three weeks apparently.

Mine started on the 29th October on the first day of my 6 days of respite. I was at the top of Catbells in the lakes and suddenly got a sore throat. By the time I got to the bottom I was coughing and shaking. It completely wiped out my break and has lingered ever since. I also had my first ever bout of stress incontinence in my life to my great embarrassment caused by coughing although I have seem to have overcome that now (thank goodness) The chesty cough remains though.

We have to take more care of ourselves
 

Grahamstown

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Jan 12, 2018
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Mine started on the 29th October on the first day of my 6 days of respite. I was at the top of Catbells in the lakes and suddenly got a sore throat. By the time I got to the bottom I was coughing and shaking. It completely wiped out my break and has lingered ever since. I also had my first ever bout of stress incontinence in my life to my great embarrassment caused by coughing although I have seem to have overcome that now (thank goodness) The chesty cough remains though.

We have to take more care of ourselves
Goodness, that’s a long time, do you need to have your lungs checked? Do take care of yourself. Afraid I get stress incontinence too at times, usually what they call ‘key in the door’ urgency and when it’s cold. No trouble during long hot summers.
 

Duggies-girl

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Sep 6, 2017
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Goodness, that’s a long time, do you need to have your lungs checked? Do take care of yourself. Afraid I get stress incontinence too at times, usually what they call ‘key in the door’ urgency and when it’s cold. No trouble during long hot summers.

I know it is a long time. My lungs were perfectly fine before as I have always walked a lot and big hills were no problem but it just hit me this time. My husband has it too but he got it after me (probably from me) I will wait until the new year now and if I still have then perhaps a trip to the GP and maybe some antibiotics or something.

Dad had the flu jab so he is fine.
 

Grahamstown

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Jan 12, 2018
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Thank goodness for TP because I have just hit the brick wall of ‘I can look after myself we don’t need any help’ and so on. I was cross at first and then remembered to say that it is me who needs the help because I worry too much when I am out and it’s for my peace of mind. All true actually except for him being able to look after himself, but that has pacified him for the moment. Sad to have to say it, but he won’t remember all this.
 

Mudgee Joy

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Dec 26, 2017
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New South Wales Australia
Well done finding the pants and socks. I don’t think my husband would ever change them if I didn’t do it every few days. He used to be so meticulous too. That lingering cough is dreadful and I always resort to endless ways to control it especially at night. It lasts three weeks apparently.
I always stress to my husband that our house help is to help me !! I think it works
 

AliceA

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May 27, 2016
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I feel this is a good approach. A holiday brouchure came today, the idea came up that we could travel by train and catch a taxi at the other end.
The need of a Rollator was quite forgotten.
I blamed my age as making it too difficult.
 

Grahamstown

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Jan 12, 2018
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We are very quiet these days, and he is doing very little except around our immediate area and that seems to suit him and spends a lot of time in bed so no ructions. He loves seeing the family which is the main focus of his thoughts, but he has no idea of who some of the extended family are in the Christmas cards. Sundowning is bad but I have to let him get on with it. He loves his iPad and looking at family photographs which I have transferred on. I downloaded a couple of easy apps to give him something else to play with but sadly he just can’t master them very well. I did wonder and so it was. I am taking him to the cinema tomorrow morning for New Years Eve because it’s a pity not to mark it in some way. There is a lovely article in the paper today about an extended family who look after the grandfather with Alzheimer’s and Parkinson’s at home where he lives with his wife. They have set up a lot of IT aids to help him which gave me the idea for his iPad but I don’t think it will work. I shall see because he seems so far down the road now that these ideas seem redundant.
 

Grahamstown

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Jan 12, 2018
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Feeling conflicted in this post holiday period, I would love to take a holiday in the next three months but I don’t want to take my husband, I want to go alone. At the same time I don’t want to go without him. The thought of trying to gird up my loins and organise, pack and execute even a short break is too daunting. I have gone down since managing holidays last year. Is it me or is it him? So I am just having vicarious holidays and do all the necessary planning and then think I cannot possibly do this with him. If I asked him he would be most enthusiastic but incapable of action. A little post on here relieves my feelings.
 

Duggies-girl

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Sep 6, 2017
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Feeling conflicted in this post holiday period, I would love to take a holiday in the next three months but I don’t want to take my husband, I want to go alone. At the same time I don’t want to go without him. The thought of trying to gird up my loins and organise, pack and execute even a short break is too daunting. I have gone down since managing holidays last year. Is it me or is it him? So I am just having vicarious holidays and do all the necessary planning and then think I cannot possibly do this with him. If I asked him he would be most enthusiastic but incapable of action. A little post on here relieves my feelings.

I get that @Grahamstown I really want to get away on my own. Just me with no having to make conversation with others. I want my own room, just me.

I am expecting dad to die some time in the next six months, I don't really know how he has hung on this long as I expected him to go months ago, he may surprise me and go on forever. I am amazed at the determination his poor old body has to survive. He must be very strong to fight his cancer like he has particularly as his dementia prevents him from knowing he is ill.

There is no other place that I can say these things other than here on this forum so I am very grateful that it is here.
 

Grahamstown

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Jan 12, 2018
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It does go on doesn’t it? Two new things, one, yesterday with friends at pub I helped him put his card in for the tab because he likes to do the host bit. Up till now he could remember his pin and it did give him some independence. He simply couldn’t remember the pin this time. Two, his obsessive door checking and rattling has increased and the screws are starting to get loose. Ironical really that the very fear of an intruder is creating the very conditions for a person to break the door with a hefty shove.
 

jenniferjean

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Apr 2, 2016
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Basingstoke, Hampshire
his obsessive door checking and rattling has increased and the screws are starting to get loose. Ironical really that the very fear of an intruder is creating the very conditions for a person to break the door with a hefty shove.

In our previous house that we sold my husband had broken all the window handles in two of the bedrooms while checking them. Here I have managed to keep him away from the windows but he does keep checking the handle on the front door quite vigorously.
 

Grahamstown

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Jan 12, 2018
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@jenniferjean we seem to have a lot in common so feel a sense of fellow feeling with you. I took him at his word today and went off into town on the bus at 10 o’clock leaving his lunch ready with instructions to have it when he wanted. I had a blissful 3 hours, a manicure, a bowl of soup and a mooch around the shops. I got home, no lunch eaten, he thought it was mine and the TV on. I have had to give blow by blow instructions how to get the plate of food and eat it. So two conclusions, he cannot remember the information I give him and he can turn on the TV but only onto the channel it is set on. Tomorrow I have an assessment for some help, which he is adamant that he doesn’t need because he can look after himself perfectly well. I shall push on.
 

jugglingmum

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Jan 5, 2014
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Chester
Something I think that is hard to do, but discussing things with them as to what they need doesn't work because they sadly no longer have the ability to understand what they need or why things need to be done. EG when the social worker asked my mum how often she washed, she told her she didn't because she just couldn't understand what the point was in washing - both myself and the social worker struggled not to giggle with the way she said it so earnestly.

I know it is hard but somehow you need to introduce things in a way he can accept them without discussing it.

Something I've seen Canary post many times is she agrees with her husband and then says what needs to be done, so the first word they hear is yes eg yes dear, I know you can manage but we just need XYZ to pop in for now and we'll see how it goes. Perhaps not explain that she will sort out his lunch(if that's what's needed) but then when here, they can put his lunch in front of him and he will probably just accept it.

any reason you can think of for someone coming, eg you have a sore left hand and can't do whatever, and they will pop in whilst you are out, they don't need to do whatever, but if they just breezily walk in the house, saying they are here to do it, and then say whilst I am here do you want some lunch it might be accepted?

In the meantime would a note left saying this is your lunch work?

And can you think of a way you can get a holiday by getting a friend/daughter etc to stay for a few days, or even just one night. I've read on TP of people just going to the hotel down the road just for an evening away from the PWD to do their own thing.
 

Grahamstown

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Jan 12, 2018
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All very helpful tips which reinforce my thinking. It was so obvious that he was just waiting for me to get back. Logic doesn’t come into it, but I try to keep him informed just before the events. Actually it is correct that I need the help to help him but it is only useful to say that I need the help and then he says oh yes. It’s a long and lonely road and there isn’t that much help out there now with the contraction of labour that is happening before our very eyes. I shall be lucky to have anyone to help me but I must remember my brother who offered to help and he could just about cope with one night.
 

jenniferjean

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Apr 2, 2016
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Basingstoke, Hampshire
he cannot remember the information I give him

That is how it is here. My husband tries so hard to help me. Sometimes I give him a job to do, such as asking him to fetch something from upstairs. But by the time he has climbed the stairs he's forgotten what he went for.

Sometime ago, before we moved here, I went to do something in the garden. I told my husband what I was doing and that I wouldn't be long. When I went back indoors he was missing. I found him at the front of the house looking for me. I was worried as to what he would have done if I'd left him longer and decided then not to leave him on his own.

When we moved here and I had a carers assessment I was given two hours take-a-break a week. He was adamant he didn't need anyone here. I told him it was for my benefit not his. He now finds chatting to someone else each week makes a nice change.
 
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Grahamstown

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Jan 12, 2018
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I have just realised that I am still in denial myself about his illness. I simply can’t believe that he is not able to have a rational conversation. I can accept that he can’t remember much from moment to moment but this completely irrational thinking is beyond my understanding. The only way I can relate to it is to think that if it was a physical illness like diabetes or cancer then we could discuss it rationally but this illusion of a real person with a thinking brain is impossible to understand. Just another rumination on this crazy illness.
 

margherita

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May 30, 2017
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Italy, Milan and Acqui Terme
I simply can’t believe that he is not able to have a rational conversation.
Not only can't I believe OH is not able to have a rational conversation, but I get furious because I think he could if he tried. I forget all I have read on this forum , with the only result that he gets more confused and I get more furious.
Which is mine, denial or stupidity?
 

jenniferjean

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Apr 2, 2016
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Basingstoke, Hampshire
Not only can't I believe OH is not able to have a rational conversation, but I get furious because I think he could if he tried. I forget all I have read on this forum , with the only result that he gets more confused and I get more furious.
Which is mine, denial or stupidity?
I sometimes feel like I have two consciences standing behind me. When my husband does something or says something that upsets me, one conscience talks in one ear telling me that he is doing it on purpose to wind me up. Then the other one says no he's not, it's the disease and he can't help it. But at times I don't know which one to believe.