Terry Pratchett and a question about memory loss.

[Lisa O`Brien]

I see from the news today that the author Terry Pratchett has died. Not familiar with his work at all,but I know he was suffering from Alzheimer`s Disease. Forgive my ignorance,but if Alzheimer`s Disease is progressive memory loss ,how can you die of memory loss? I don`t understand. Thanks.

Edited March 12, 2015 by thequays

[Jan McNulty]

Alzheimer's is much more than just memory loss:

 

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=100

 

There's lots more on the internet

[Lisa O`Brien]

Thanks Janet. From the article you uploaded it says, " Proteins build up in the brain to form structures called "Plaques" and "Tangles". This leads to the loss of  connections between nerve cells ,and eventually to the death of nerve cells and loss of brain tissue."

[aileen]

Alzheimer's is a terminal disease. The brain, which governs every function in the body, is eventually destroyed by the disease. I would say that TP was very young to be diagnosed with Alzheimer's at 59 and that symptoms more typically present in a person's mid-seventies. We don't know whether TP died of Alzheimer's. It's possible that he died of something else.

[Melody]

Alzheimer's is often the underlying cause rather than being the direct cause of death. People forget to take their medications or accidentally overdose, or they set fire to the house by dropping a cigarette or forgetting to turn off the gas, or they're in a car and forget where they are and run a red light, or they just stop looking after themselves and become too weak to fight off diseases. My mother ended up dying of pneumonia, but the underlying cause was dementia and the resulting general debility.

 

I think the early-onset versions of Alzheimer's tend to run a more virulent course. I'm surprised that Terry Pratchett was able to carry on writing for as long as he did.

[nottsballetlover]

Interested in this topic. I've just finished posting all over my Twitter and Facebook how sad I am that Terry Pratchet has died and responding to others who feel the same. He has been one of my favourite authors for many years. His Discworld series of books was one of the most genius fantasy series ever. With his his books he took me to a completely different world, much as ballets I go to do also. 

 

You know: I learnt from reading Terry Pratchett: you need to read beyond, underneath and over. Read beyond the lines, imagine the movement....Dance is like that too.

[Anon2]

2/3 of all dementia sufferers die from pneumonia.

 

It is a wicked disease and there is currently a very moving item on the BBC news site about a type of dementia that is genetic. It fearures a young father who carries the gene, he lost his father to the disease and his brother is in the later stages

[aileen]

Apparently, TP had a rare, early onset form of Alzheimer's.

[Anna C]

How dreadful. That must be rare. I think other forms of Dementia are more likely to hit early; Frontal Lobe for example, but early onset Alzheimers must be very unusual. :-(

[LinMM]

There seems to be a bit of a confusion between Alzheimer's and senile dementia.......although some symptoms are similar.

 

Most people from late seventies and in their eighties etc suffer from senile dementia which is largely caused by diminishing blood supply to the brain.....cause by arterial decay etc. Most people with this also eventually die from other health causes..... which may or may not have been caused by having senile dementia......though often the two can be closely linked.

 

Alzheimer's is altogether a different disease and the early onset kind is usually the most vicious. Often people with this form can get violent but not always.

This can eventually destroy ones ability to breathe or swallow etc (as happens in MS and similar but from different processes.....so affects the body's physical processes more (eventually) whereas senile dementia affects more just the mental processes......but which can often lead to neglect of oneself physically which can result in malnutrition and pneumonia etc.

[taxi4ballet]

A friend of my dh had early-onset Alzheimer's, and it was undiagnosed for several years because he had also unfortunately become an alcoholic. He was sent home from A & E on more than one occasion after having had a funny turn because they thought he was drunk.

[aileen]

I think that I read that the biggest cause of dementia is Alzheimer's Disease which has a very specific disease process. The second biggest cause is vascular dementia which is the result of small bleeds in the brain. It seems to me that people start to show symptoms of vascular dementia as early as their late sixties and are very badly affected by their mid-seventies whereas symptoms of Alzheimer's typically manifest themselves in a person's mid-seventies. One in five people have some degree of dementia by the time they are 80. It is the corollary of people living longer.

[meadowblythe]

Have just finished adding a TP quote to the shelving of 20 sections of my library - amazing how quickly I could find one for so many subjects.

 

My very favourite (and I am married to a physicist)

 

"Geography is just physics slowed down, with a couple of trees stuck in it."

[Lisa O`Brien]

Have just finished adding a TP quote to the shelving of 20 sections of my library - amazing how quickly I could find one for so many subjects.

 

My very favourite (and I am married to a physicist)

 

"Geography is just physics slowed down, with a couple of trees stuck in it."

You`re married to a Physicist,Meadowblythe? Wow. I love Professor Brian Cox. I know that some people in the physics community applaud what he does while others don`t. Brian`s American wife,Gia Milinovich on Twitter is convinced there is a lot of jealousy about her husband,but who knows? [i know that there are lots of different "strands" of Physics; Brian is a Particle Physicist.]

[LinMM]

My father had vascular dementia which he didn't show any really bad signs of until he was 79!! He died eventually at the age of 83 of a type of heart failure or could have been a small attack ......a blockage in one of the arteries .....which they couldn't do anything about because of his poor health at the time (he had smoking related emphysema at the time). He died one morning luckily while I was there.

 

The reason I know he had vascular dementia and not Alzheimer's is because when he started these signs they were at first not too bad but getting worse than the usual forgetfulness .......eg a fridge full of bread because he kept forgetting he had bought it already......but a couple of years down the line when he was 81 and forgot to write cheques for bills .......something he was a real stickler for.....and couldn't remember we had just eaten breakfast etc I brought it up with some nurses who were coming in to dress an ulcer on his ankle.

 

Because he was friendly and pleasant to talk to and they only saw him for five mins a week they didn't really believe me at first. I wanted to get some care for my father in place .........which I'm sure if he had had cancer lots of things would have happened more quickly.

 

It was only when a neighbour backed me up saying he was letting some local kids in "who were desperate to go to the loo apparently" and then were stealing any money he had lying around that they agreed I should get him tested.........though I knew it was probably a bit too late for medication by then.....

 

He eventually had a brain scan which confirmed the vascular dementia. In the next two years he was going downhill fast and doing quite dangerous things like leaving the gas on or oven on etc and absolutely refused to have meals on wheels as he didn't have insight into his own condition in the end and this is a real problem.

 

I will forever be grateful to the Alzheimer's Association in Woking who were wonderful and helpful to me.........even though dad didn't have Alzheimer's.

 

I don't honestly think there's any hard and fast rule about exactly which age either vascular dementia or Alzheimer's strikes......early signs can be missed because we all get mildly forgetful well before old age!!

 

However it is extremely distressing for carers who see the people they love deteriorating in this way......and early onset Alzheimer's particularly distressing because it advances so quickly and best wishes to Terry Pratchetts family in their bereavement especially as I think he did a lot for the awareness of this awful disease.

[Fiz]

I'm so sorry, Lin. My father has Alzheimer's and it is like watching a little piece of him die whenever we visit. It is a terrible disease and I would rather die than suffer from it.

[aileen]

My mother was diagnosed with Alzheimer's when she was 80 but, looking back, she was showing symptoms of the disease for at least two years before that. She was prescribed Aricept and that, combined with carers coming in twice a day, preparing her meals and doing her shopping for her, seemed to stabilise her condition and reduce her anxiety (common in the earlier stages of the disease) for about 18 months after which she started to go downhill until eventually it was no longer safe or desirable for her to remain in her own home and she moved into residential care. I agree that people start to show symptoms at different ages but I think that vascular dementia does generally present symptoms slightly earlier than Alzheimer's does. If the person lives with someone else the symptoms are compensated for (and sometimes dismissed) by the other person but if s/he lives alone even mild symptoms can make it hard for him/her to cope with everyday life, in particular managing their money, going shopping, remembering appointments and finding their way around.

[LinMM]

With hindsight some events were comical though.

 

Once when I went to visit he had a dent in the back bumper on the car......Just before we had to tell a white lie to get him to stop driving........ I asked him how it had happened. He said well do you know that was funny I was in the Tescoes car park and this lady went into the back of me.....I couldn't understand why she was so cross and going on a bit after all it was her fault.

Well it didn't take me long to realise that it was he who had reversed into her ...... which was why she was so mad of course.

 

It's not easy to tell your own father who thinks he's okay to stop driving. The family GP just said "well just take the keys off him " Hmmm.

In the end I discovered some rust on the car......which I said would definitely fail the next MOT ....just coming up at the time...and I'd sort out someone to repare it. I put the car in the garage and he never drove it again. The last year of his life I did all his shopping etc as just as Aileen said the most simple tasks seem difficult to them.

I bought him a new electric toaster for example .......in the hope he would use the gas oven toaster less often......but no matter how many times I went through it with him he just couldn't remember how to use it!!!

 

There are many more amusing moments which at the time were very exasperating but you have to see the funny side too!!

[Fiz]

Everyone but my mother thinks that my father had Alzheimer's for two years, if not more, before it was diagnosed. There are carers going in four times a day to help Mum now. Daddy has more bad days than good ones now and even if my mother would consent to go out and leave him with carer for a couple of hours, she feels she cannot do so as if he falls asleep and she is not in the room when he wakes up, he is afraid that she has gone away permanently. The aunt of a good friend has had Alzheimer's for several years and she had a stroke earlier this week. It seems she may just not awaken and we are praying that this happens rather than she returns to fear and confusion.

[LinMM]

So sorry you are going through this now Fiz

I was very stressed out throughout the last two years of my fathers life.......and am terrified of getting the same thing......no children to look after me!!

 

Looking at both sides of the family it's very much 50-50 with two grandparents getting something similar...my dads dad but not his mum)

And my mums mum but not her dad!

The two who didn't get it lived to 87 and 88 respectively with no signs of any major decline and in fact two weeks before one of my grandfathers died he cycled to the Library to get some books out......his only real old age sign was a bit of deafness! I'm very much hoping I take after him!! But you never know what's in store do you?

Meanwhile I do all the things that are supposed to keep these diseases at bay and keep on with the good multi and Omega 3 etc and hope for the best!

[Fiz]

Several of my fifty something friends are going through the same thing, Lin. I have told my eldest to put a plastic bag over my head if I get Alzheimer's. I wouldn't wish it on anyone.

[Anon2]

I still can't do links from the recent IOS update but have copied the below from the Alzheimer's society website.

 

 

Senile dementia

•  

 

'Senile dementia' is a outdated term that used to be used when it was thought that memory loss and confusion was a normal part of ageing, rather than being caused by specific diseases like Alzheimer's. These days, it is more common to refer to dementia, or early-onset dementia if the person is under 65. 

To learn more, read our factsheet What is dementia?

 

There is a lot of information on the Alzheimer's society website about the types of dementia, symptoms and the hereditary patterns. Dementia becomes more common with age, btw 65 - 75 around 5% are diagnosed with the condition but by 85 it is nearly 50% - the problem of the ageing population but is not inevitable. 

I would urge anyone with an interest to investigate 'Dementia Friends'. And Fiz you need to encourage you mother to look after herself - she needs to take breaks. Is there a local support group were she lives? In our small community we have a monthly meeting, with lunch for both sufferers and carers. The various agencies attend and therefore contact is made in an informal way before a crisis arises.

[Fiz]

Jane, we have both tried to encourage my mother to do this but she has the entrenched view that she must shoulder the burden and not talk to people about it as mental illness is disgraceful. She and my father never did mix much anyway.

[LinMM]

Yes often people (including my father) just don't want to take any advice or help no matter how carefully considered before giving!!

 

Years of smoking probably helped to contribute towards getting it and the grief from losing my mum probably left him mildly depressed but once things progressed a bit I thought malnutrition was not helping......I'm sure my father was living on bread and cheese for days at a time ..........even if meals were left cooked for him to heat up.

 

Because he wouldn't accept meals on wheels (considering this to be for disadvantaged old people!) I was hoping to set up someone coming in for just two half hours a day to organise him to eat as he was getting very anorexic looking.

I know old people don't always have the same appetite etc but I think sometimes he just forgot to eat......or had the same meal several times over eg : breakfast which didn't help!

It was weird though because when I phoned him in the evening and asked what he had eaten he would tell me about some meal he'd had that he may have been semi aware was in the fridge but at the weekends I'd find them all there..........but about 20 loaves of bread in the fridge(I can laugh about this now)

 

In the end some of the neighbours where he lived were terrific and knowing how difficult it was to get Social Services involved(they seem to run off at the slightest setback) helped a great deal in the last few months.

The problem is once Social Services know a close relative is involved in caring they don't really want to know quite frankly.

 

But to anyone who is dealing with this do contact the local society. They can be a lifeline for carers and remind you that you are only human and help you to deal with the guilt if you lose it occasionally. The one in Woking as I said was great.......?And sometimes a good laugh leads to a great cry and release and the reverse ....as it is a sort of bereavement before the person has died.

 

I believe there's a good one near Cambridge as well and they organise all sorts of activities for sufferers .......one of my friends helps to organise a choir there which is very popular. Lots of local organisations do similar things ........but people can't be forced to go along and especially if they didn't have this in their life previously.

 

Sorry I'm going on a bit but I'm sure I still have some unresolved issues from the whole of this experience.

Edited March 13, 2015 by LinMM

[Fiz]

Lin, somebody else I know has said the same thing about mourning for a person before they have died. I agree. The person who my father has become is nothing like my father as I knew and loved him.

[aileen]

I'm not surprised that you have some unresolved issues surrounding your father's dementia, Lin. I have some myself in relation to my mother. Dementia is enormously challenging to family members (as well as to the sufferer). I feel that most of my mother has gone now. My sister has told me that my mother is dead to her but she lives abroad, has not seen my mother for over three years now and always had a difficult relationship with her. One of the most upsetting things for me has been the gradual withdrawal of friends from my mother's life. People just can't cope with the dementia and I don't think that any of my mother's friends visit her now.

[Fiz]

It doesn't just happen with dementia, Aileen. My mother in law had lots of good friends. They had a large house just outside their village. She and my father in law hosted drinks parties plus lunch and supper parties. She had a fall and broke her wrist. After that her general health began to decline. Not one of these "good friends" made the slightest effort to visit her over the next few years. It seems they were only interested in having a good time. It upset my poor mother in law a great deal and I am not surprised. Old age is a trial which is not helped by this sort of behaviour.

[sarahw]

Our neighbour has dementia. I visit her erratically in a care home (she was estranged from her family.) I feel guilty about this and I'm sure if it is actually one of your relatives it must be harder.

 

She's been in a home about 3 years and I'm beginning to find it easier - maybe the grieving has happened.

 

Being objective about my scenario - once at a certain stage the person hardly knows you, doesn't say anything to you and doesn't remember you've been. Logically your responsibility becomes one of ensuring they are well cared for. Subjectively the guilt is massive.

[hfbrew]

Just beginning the same sad journey with my mum. Early days yet but already breaking my heart with the constant repeated conversations.

 

Wish I lived closer.

 

My cousin and I are taking her to see ds is Aladdin soon. Possibly the last time she will see him dance.

[aileen]

It is very kind of you to visit your neighbour, sarahw. One of the managers at my mother's home told me that some relatives don't visit at all. I don't think that it's selfishness; they just can't handle seeing how degraded their relative has become. I think that a person with severe dementia does benefit from the sound of a friendly voice and the touch of a hand held, plus it's good to show the home that someone is taking an interest in how the person is being cared for. Visits to my mother are deeply depressing and I can only face visiting her once a fortnight (she lives a couple of hours away and so I can't just pop in for half an hour a few times a week, which would be easier and more satisfactory).

[aileen]

I'm sorry to hear that, hbrew. I took my mother to see Nutcracker when her Alzheimer's was quite advanced and she was able to sit still and enjoy it and even managed to say something to my husband about it afterwards. Three months later she went into a home. I would encourage you to arrange some outings and perhaps even a little holiday (in the UK) whilst your mother's dementia is still in the early stages. It may be a bit stressful for you but she will get a lot out of it and you will have those memories to look back on. Later on outings become very difficult if not impossible. PM me if you would like to discuss this further.

[Fiz]

Oh, Aileen, do I understand how you feel! I am dreading tomorrow. My father is such a sad shadow and the strain of it is eating at my mother. Like you, I live a couple of hours away. My brother lives there but he is always away on business trips. Hfbrew,I feel for you. Sarahw,you are a very kind person.

[LinMM]

Yes me too hfbrew. I'm sure she will love the Aladdin though ....it looks so colourful from the piccies on Facebook!

 

I think it is also very kind of you to visit your neighbour Sarahw. Sometimes even if someone doesn't quite recognise you they sense you are someone familiar and this must be reassuring for them to some degree.

 

My dad only got that bad (not always recognising me) in the last three months of his life.

One weekend we were having tea on the Sunday afternoon and my dad said" that's my daughters cup you're using"

I said "dad I am your daughter.....who did you think has been here all weekend then?"

You're Joan aren't you(his sister)

So he knew I was someone familiar.....just not quite sure who!

Half an hour later or the next time I'd go he'd know who I was.