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Dementia, one positive.


pigeon controller
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Not to high jack Ditchmans post , it rim indeed me of my experience . My father who was a Police Officer was a private person even to his family. Don't get me wrong he was a great dad and taught me well in the ways of the countryside and shooting. In his early seventies he had an accident in his Land Rover which we think started his dementia. During my schooldays a a local secondary modern I had the stigma of being a coppers son, which you learn to live with when you get the associated ribbing. The dementia opened up a number of chapters to me as I would visit my dad each night after work to check he was OK . He forgot who I was and thought I was his brother and would talk about things they got up to as kids which I could not imagine him doing. He also remembered wartime , when he was with the Americans going into one of the death camps . This explained a peculiar habit he had. Don't get me wrong he had a very strong constitution attending post mortems and horrific road accidents, but he could not pick up a cold dishcloth as it reminded him of the touch of the residents of the camps, he would flick it into the hot water first. 

I had many interesting conversations with him and learnt a lot of family history. 

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There are so i have learnt about 14 different types of Dementia...or one dementia affecting folk 14 different ways..........in my case i cannot believe any story that is told to me from the "old" days as they are all fantysis..........and very believerble too...........

it is annoying how the media constantly shows the "nice" side of dementia ....type cast as a kindly forgetful nice and clean and tidy old lady who has memory problems.........which couldnt be further from the truth

 

in most / alot of cases they can be 

  1. aggresive
  2. dirty
  3. constantly untruthful
  4. dangerous to themselves
  5. uncaring
  6. nasty
  7. foul mouthed
  8. smelly

and the list goes on.......

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Its a very difficult illness to watch someone suffer from. Sometimes what was a kind gentle person can turn into an evil hateful being, far worse that you could ever imagine. What goes on in their world i have no idea, and often wonder if they actually realize how much they hurt their closest loved ones. 

 

Ditchman sums it up in his post spot on. 

 

 

But as Pigeon controller has pointed out they dont all seem to have the same issues, thankfully.  

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I watched my nan fade away with dementia, and always said in one respect is could be a kindness. When you forget a partner, loved ones etc, surely it is a relief for them? To sit in a home thinking of how the family have left them in the care of others must be really heartbreaking! Watching your husband or wife leaving you each day and maybe not returning for days. No tenderness or holding you through the night! No intimate moments etc. It would break my heart. But when nan was slipping, she forgot about pretty much everything after the war! She would hear an aircraft buzzing overhead and chirp happily “that’s our boys coming home safely” nan lived in bucks until retirement, worked at Bletchley during the war and was a civil servant until she retired! very good with her money and keeping paperwork. When she retired she had a bungalow built to her own design in Huttoft lincs. We used to visit her as children and she was a doting loving grandma. When she ended up in a home, dad would drive down once a fortnight from Newcastle to visit and see his sister who lived in saltfleet too. When nans dementia really took hold she didn’t recognise her husband, “my dads step father” nor my dad or us kids. It was heartbreaking trying to break through to her. The day she passed away she was lay in bed and had a brief moment of clarity. She smiled at dad and gave his hand a squeeze. Then slipped back to sleep. Dad read to her as she lay there for hours. Then dad went out for a cuppa and not long after my grandpa “dads step dad” came to him and said “she has gone!” I had never seen my dad cry before that. That in itself was bad enough. But in the years she was there I think it was a blessing she had lost the memories to associate dad, us, grandpa as being her family. I think that in itself possibly made it easier for her to carry on her life in there. 
 

recently dads sister passed away and I think the realisation that dad is the last of them hit home! He choked back the tears trying to be strong, but when the coffin cane into the church he snapped like a twig in a storm!  Then in August when mum passed he had a few moments but more controlled than before. I gave him a huge hug and told him how much us kids loved him. He spent Christmas on his own as it’s the first without mum. But now we’re noticing dad may be showing signs of early dementia. Forgetful, can be nasty to others, confused etc so we need to keep an eye on him. 

 

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From two personal experiences of dealing with the problem I can tell you that dementia is rarely a problem for the patient until the end.    They live in a world that is, to them, perfectly normal.   It might get turbulent occasionally but, as they see it, it is perfectly normal.   To the relative or loved one it is pure bloody unadulterated hell.

Nothing is ever 'normal' to them.   Ditchman hit it all straight on the head in his post.   I could add a lot more to his list.

It is a terrible disease that the government treats as a social problem - not a sickness. 

IF YOU HAVE NEVER BEEN AFFECTED BY IT THEN THANK YOUR LUCKY STARS AND PRAY TO YOUR GOD THAT YOU NEVER ARE.

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I've been helping look after my parents who both have dementia for the last 2 years or so.

Mum has non-fluent aphasia which first robs you of the ability to speak, then to communicate or understand at all.  The wider symptoms come more slowly but are now well developed.  She is now mute and so confusd/erratic that she had to go into a specialist hospital in October and is a shadow of her former self.

Dad has the more well known form and is extremely forgetful and often very confused about things, but is nonetheless able to have some quality of life.  We hadn't noticed there was a problem until quite a long way into mums condition as her symptoms drowned his out.

It has been an extremely hard time, not least because my job means I can be anywhere in the country on any given day so I've been having to deal with the medical side while travelling or in between meetings.  Watching them deteriorate and seeing dad's despair (as the one who can comprehend what is happenng) has been very sad.  It's an incredibly cruel disease.

Nonetheless we came together yesterday and made the most of each other's company, first at my house and then at the hospital with Mum. 

Make the most of time with your family as tomorrow is never promised.

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I lost my nan to dementia going on for 6 years ago now and can relate to alot of whats been said above.

There used to be one old boy in the home she was in who I quite liked, he'd often tell me how he'd cornered to Germans in the courtyard the night before.

Obviously her funeral was a sad time but to me the lady I knew as my nan had gone long ago, it for me made her passing easier to deal with.

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I wanted to attend a local group for families coping with dementia today but couldn't. Because I have spent 6 hours in A&E and the rest of the time driving, cooking and cleaning up my father. Today was one of his bad days. I wasn't prepared to become a carer just yet.

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On 26/12/2019 at 10:54, pigeon controller said:

 ...In his early seventies he had an accident in his Land Rover which we think started his dementia...

Strange you should mention that, my mother`s dementia, probably Lewy Bodies, didn`t start from a trauma, but she did descend further into it after an operation and later a fall or assault. The latter led to her going from hospital to a care home and saved her and the family possibly years of distress. Awful disease in any of its forms.

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22 hours ago, spandit said:

I wanted to attend a local group for families coping with dementia today but couldn't. Because I have spent 6 hours in A&E and the rest of the time driving, cooking and cleaning up my father. Today was one of his bad days. I wasn't prepared to become a carer just yet.

Spandit I feel very sympathetic to you.   I know exactly what you are experiencing and feeling at the moment.   None of us were prepared to become a carer.   You don't ask for the job.   You get no training for the job.   No matter how useless you are at the job - It's still yours.   Nobody will ever take it away from you and there is no hope of promotion.

I had such a burning ambition to be a nurse, cook and housemaid that I ran away from home and joined the army - at fifteen.   Now, in my retirement, I find that the government insists that I become a nurse, cook and housemaid - Unpaid and untrained.

Am I bitter?   You are damned right I am.   Been at the job for six years now.   Not the Memsahibs fault.   She didn't ask to get ill.

Then they keep telling us that we are the fifth richest country in the world.   Well if we are, where has all the money gone? 

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We're fortunate inasmuch that my father has savings and I have POA but he is still compos mentis enough to not think he needs much care. I asked him how much he reckoned residential care cost and he guessed at £10 a month. When I told him it was about £1,300 a week he was pretty shocked. I'm just not sure that he needs residential care right now, even though it might make my life a damn sight easier.

Firmly through the looking glass now. In the space of only a few days I've gone from helping him get into the car because he's a bit stiff, to wiping up the **** and blood when his catheter blocked and he had explosive diarrhoea without being quick enough to reach the toilet. I'm now almost enjoying getting to empty his catheter bag and monitoring how much blood is in it. Have already fallen out with my aunt and with my sister in Australia, I'm having to make some major decisions with very little backup. Ironically, being into shooting has meant that blood doesn't particularly faze me.

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Welcome to the club my friend.

You get used to it but it doesn't get better with time.

I am in a fairly good phase at the moment so I am enjoying every minute of it that I can before it goes pear shaped again.

And unfortunately it will go pear shaped again.   That's for sure. 

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I can sympathise with all the previous posts, I cared for my father until he passed away, and he turned from a very mild mannered man to a cantankerous so and so.

Also he would think the world of anyone who came to see him once in a blue moon, but his attitude towards me turned quite vicious, and I was the daily carer.

I tried to understand his illness, but when you can do no right, it gets very frustrating.

Other family members including my brother and the grandchildren thought he was, 'doing very well'.........but they only visited occasionally.

I kept all my opinions to myself and the wife,...basically to keep the family peace.

Luckily I can remember the good times with Dad, he was a grafter and a good family man, and that's how I want to remember him.

All the best.

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Had a carer round today for a look see. He is very doddery today and it took 3 of us to get him downstairs. Glad she saw him at his worst.

I suspect that his sister, who is at loggerheads with me, hasn't seen him at his absolute worst. I think he's been presented dressed, clean and comfortable "Sorry, I'm a bit stiff this morning, excuse me if I don't get up". If he falls then I doubt I'd be able to pick him up again...

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My sympathies to everyone affected by this.

A relative (in his 80s) has just had a stroke and due to the increased family involvement it transpires that his wife is (or probably is) suffering from the early stages of dementia. So typical that you get a situation where the able-minded one gets physically ill, and someone with dementia remains (for a while anyway) physically fit. 

Also, the able-minded partner (whether consciously or not, or a bit of both) compensates for the other, so the seriousness of the condition can remain hidden for quite a while. 

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37 minutes ago, Thunderbird said:

My sympathies to everyone affected by this.

A relative (in his 80s) has just had a stroke and due to the increased family involvement it transpires that his wife is (or probably is) suffering from the early stages of dementia. So typical that you get a situation where the able-minded one gets physically ill, and someone with dementia remains (for a while anyway) physically fit. 

Also, the able-minded partner (whether consciously or not, or a bit of both) compensates for the other, so the seriousness of the condition can remain hidden for quite a while. 

Very very true...

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Friend of mines husband got so bad that she couldn't cope any more at home.   She now pays for his care in a home.   It is a good place as far as they go.

Because they have built a whole lot of new rooms they are doing a lot of advertising on their website.   This includes pictures of their patients (inmates).   Now her relatives, who never visited while she was struggling to cope with his mood swings and violence, etc, keep phoning her up to say how well and happy he looks.   He is often violent, he pees wherever he happens to be, he refuses to wash or shower and he hasn't been able to speak for over two years.  

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My mum is in a home, has been for a few years and she has dementia. She has falls and breaks bones and each time she has anaesthetic the dementia worsens and we lose more of her. I miss conversations with her,  especially since dad passed, we used to have chats about our life in the tiny village in Somerset where we grew up (mum as well as me and my sister) the relatives and people we knew, the houses, fields, orchards, the little chapel and grave yard where our relatives rest....yeah I miss those chats. She has times when she sees and talks to,  imaginary people; she talks about herself in the third tense, it's hard. She has moments when I think she knows me and my sister, then she's gone again.  The home is lovely,  it's clean and bright, she has all she needs and in her condition and at the age of 94, this is the best we can ask. We try and focus on the good times, passed and present,  its a  terrible state for a human being and some are no where near as well cared for as mum. Many many people are missing friends and relatives and yet they are sitting or lying right in front of them.  A sad sad illness.

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Don't forget to claim Attendance Allowance! Its not means tested and could add either £56 or £88 per week to their income. Also don't forget you could be eligible for AA as well. Check locally as there are usually places like age uk that can help with the form. If you get pension credit and get awarded AA it can also boost your pension credit. We missed out on 12 months AA because no one told us we could and it was only a passing comment that made us aware.

 

Get power of attorney in place before it goes tits up as getting court of protection set up is a royal pain in the **** and expensive if you use a solicitor. We did it ourselves and never again!


 

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hello, the worse thing about looking after my mother were other family members (sisters) they argued so much about finding the right care home she never came out of hospital, mother and i found one right by the sea, B and B next door for me, had it all planned until the above happened they did not like it, i told them its what she wanted, yes it still gets my ******* going, never spoken to any of them since the funeral and never will

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22 hours ago, Thunderbird said:

Also, the able-minded partner (whether consciously or not, or a bit of both) compensates for the other, so the seriousness of the condition can remain hidden for quite a while. 

This is absolutely the case with my Dad.

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