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Understanding Dementia - New Behaviour

Sorry for the delay,I am actually writing a new blog for you all at the moment but my Nan has recently gone in to a care home and it has all been very tough for the family (more of which I shall tell you about in my blog!). SO, I have been very quiet and as a result, this is a:

REPEATER! But I thought you might still find it useful…

Ok… So this weeks Dementia blogs are all about ‘new behaviours’ we may be experiencing in our loved ones.

I mentioned last time about Nannans hallucinations and the fact that i was relieved to hear they are hallucinations and not ghosts that have come to live with us. That said, last night I walked past her room and she was chatting away clearly to this young girl again. Really coherently too! The girl was obviously colouring in a picture because Nan was saying things like “Now what are they you are colouring in there…. Ooo oranges AND lemons arent you a clever girl… and where did you get those crayons?… Ahhh… and what are they there in that picture?… Gosh well there are lots of soldiers there!…*giggles*… Well maybe when you go to the church at the weekend you will…” and so on. It went on for a good ten minutes and it didn’t necessarily stop, I just got a bit freaked out and decided just to go to bed myself and not listen any longer!!

Im not saying that I do now think Nannan actually IS talking to ghosts, but the fact that her ‘sleep talking’ seems to last so long and is so coherent - and its always to this same girl that Nannan has sworn blind to Mum apparently that she IS THERE has made my equally over active brain get scared… but anyway, you can decide for yourselves on that one haha… Apparently there’s a man that sings to Nannan in the mornings too now according to mum.. well according to Nannan anyway but she told Mum that. At least they are nice ghosts…

Ok anyway. So.. this is obviously fairly new behaviour.. or at least certainly her ghostly sightings/hallucinations started a few months ago.

This is all well n good. Funny hallucinations etc but often the ‘new behaviour’ we experience with out loved one is not actually all that fun/nice/funny etc.

EXAMPLES OF ‘NEW BEHAVIOUR’

Suspicious

Argumentative

Irritable

Rudeness

Resisting help and advice

Passive and apathetic

Obsessional and routine bound

Blaming others

Aggressive

Possessive

Clingy

Too trusting

Blaming

These are just some of the new behaviour’s you may be experiencing. The 'Suspicious' characteristic seems to come up time and again for people. Nannan has been known to accuse people of stealing her things / money and usually it is because she doesn’t remember that she put them somewhere in the first place of course.

Last week, I was sitting in the care home (Nan stayed there for a week while Mum was away) and one of the old dears came in to the lounge in a right old state, loudly asking who had stolen her coat. She kept saying that she NEVER leaves it alone and that she had it in her room but now its vanished so it must have been stolen. She hunted round the lounge area; the carers hunted round the lounge, dining area etc. This lady came over to me and then told me how you have to be so careful these days because people will take things so quickly.

Two minutes later, a carer comes in with the lady’s coat. Where was it? it was in her cupboard hanging up… But the lady was so unconvinced. She said she definitely did not put it in the cupboard and someone obviously put it in there without her knowing etc. Nannan found this all very amusing, obviously not recognising that she does exactly this too sometimes!

Wouldn’t we do this too if we genuinely thought we had put our coat/purse/money/bag/book etc somewhere too only to find that a few minutes later it has mysteriously vanished and definitely is NOT where you put it?!

The ’Rudeness’ trait is very common too. Ill go into a bit more detail scientifically in a second but, you may well have noticed, that suddenly your pal doesn’t seem to realise they are actually being very rude - often very loudly too!

Going back to Nannan last week… this same lady who had lost her coat was sitting near us - well within earshot and Nannan proceeded to VERY loudly tell both Joan (her friend) and I that “that lady is in fact a MAN!” She could tell because “just look at the state of his wig, you can see all his brown hair underneath it and the wig is just sitting on top”… Nannan then kept on saying “and just imagine being that big! Urgh! Horrible”… I was like, Nannan you are going to get us kicked out!!! She didnt realise/care/understand that what she was saying was rude.

It wouldn’t have been quite so bad if two minutes later she hadn’t repeated it all again… then again a few minutes later… then again… you get the jist. Luckily, i think the poor lady was as bad as Nannan and probably heard and kept forgetting too or just couldn’t really hear us anyway ;-)

(Please don’t think I am belittling when I joke by the way. I am not. But we HAVE to have some light relief because it makes it easier to deal with and ITS OK to do that.)

Ok so I won’t go into detail and provide examples of each ‘new behaviour’. i am sure you all have your own stories to tell and - may I add - PLEASE do share them with us. Everyone benefits from hearing about others situation.

WHAT DOES IT FEEL LIKE TO CARE FOR SOMEONE WITH MEMORY DIFFICULTIES?

Just some of the ways I am sure you do/have/will felt/feel:

Frustrated

trapped

helpless

tired

worried

rewarded

responsible

resentful

angry

sadness

burdened

regretful

loss

stressed

guilty

The list is endless. The most important thing to remember is that it’s ok to feel these things. And also, it isn’t always negative. Obviously, the overriding feelings are generally negative and painful but, for example, over the last few weeks I have had some of the most amazing moments with Nannan. I have heard about her youth. I have heard about her times in the War. I have heard about how she fell in love with her husband. These are the important bits and I intend on hearing them again and again while she can still remember them.

But re the negative side of it all? Well, everyone has these bad feelings. What a relief to hear that other people also feel angry, frustrated, irritable… It helps take away that gnawing guilty feeling I think.. the knowledge that there are so many other people in the same boat. That is one of the main reasons I am writing this. I know how much it has helped mum to know there are others out there who feel like they cannot cope either.

So let’s talk about some coping strategies.

EMPATHY

This is a key word. Learning empathy is key and will really, really help.

Let’s do an exercise.

Can you remember an occasion when your memory let you down?

How were you feeling at the time

What were you thinking

What did you do? How did you react?

Ok. Well I remember when I was about 15 and I totally forgot my mums birthday. She took me to school and said nothing. i got to school and got to my first class and then we wrote the date in our exercise books and, well:

oh. my. god. the shame!! I was mortified. Shocked at my ability to forget such an important date. Panic stricken. Embarrassed. Nervous

I have really, really let Mum down. How can I fix this? What can I do? I feel so guilty. How must she be feeling?I spent the day in panic. Very sad. Very nervous

. I bought her some flowers on the way home. I apologised. I never did that again!

Names, faces, birthdays.. all things that we forget. If it wasn’t for Facebook i’d forget everyone’s birthday I think… On Saturday afternoon I was about to go on stage and a couple came up to me and said ‘Alex, hey!’. I literally couldn’t put the face t a name and yet I KNEW I knew him. And properly knew him to! But I couldn’t place him for the life of me. I had to actually ask him how I knew him and he told me that he lived with my brother during the three years my bro was at Bournemouth Uni! They were best mates! I knew him well, but god I just could not remember his name!…. Sorry Martin!!

Anyway, you know the feeling… The point is, these are OUR thoughts and feelings and we can rationalise what just happened and try to fix it. If you are with someone with dementia, you don’t get to hear their thoughts and feelings, you only see their action. Their action may be showing panic, accusing, checking repeatedly, blaming, anger, stress, anxiety, crying… they are less able to verbalise what is happening. Less able to explain what has caused this reaction. We are able to retrace, question, verbalise… your loved one cannot necessarily do this bit.

Can you understand that by remembering how you felt when you KNEW you had done something / knew you SHOULD remember something or someone, but you just can’t will really help with empathising with your pal?

'Blame' i mentioned in the list of traits at the top. Often, it is much easier to blame someone else than admit defeat too. It absolves the person from responsibility then. ‘Blame’ is a really natural defence to stop yourself from feeling vulnerable. So if you can hook in to the memory of how you felt about yourself then maybe the empathy exercise can help.

WHAT WE ALL NEED TO BE HAPPY

Tom Kitwood, is a professor in person centred care. He spent a lot of time with people suffering with Dementia.

Before he came on the scene everything was blamed on dementia. But Tom did a study and he looked at how people were treated and how they ended up acting as a result from this treatment.

Dementia, and the way you act with your loved ones, affects their petals. We need ALL our petals to make our person-hood.

As dementia increases, the petals decrease. Sufferers lose a sense of who they are; their roles change - Mother becomes daughter, Father to son; ‘socialness’ is affected - they no longer want to go out / meet friends, so life is increasingly restricted; they are embarrassed, scared; they no longer work so do not have a ‘need’; the list goes on.

As the carer, if there is anything you can do to increase just ONE side of a petal, then that’s the best thing ever :-)

Al x

@legouix

- See more at: http://alexandralegouixpresenter.tumblr.com/#sthash.ISRirCxV.dpuf

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Type!

Just an aside... I do not choose to make the text in these posts so small and I am trying to fix these articles but for some reason it seems to be doing things automatically. Sorry peeps. Will get it sorted asap!

Hallucinations in people with dementia

Hey

Well, my poor Nannan is really starting to suffer now. Her Alzheimers is getting worse by the week and so are her hallucinations. It’s so sad.

For those of you who have not read my other blogs yet, Nannan lives with my mum.

Her room is down the hallway from Ma’s.

This week, on Wednesday night, mum heard Nannan talking from my bed and went in to find her sitting in her chair hugging her handbag, wearing her beads and saying she wanted to go home. She seemed to recognize mum (something that has started becoming a problem too recently some days) and believed she had come in to save her and take her home. Mum told her she was safe and put the light on. Nan realized she was in her room but could see lots of weird people climbing up the walls. Mum told her she would make them go away and that she was safe but Nannan was in such a state and really breathless.

She kept saying to mum ‘Please don’t leave me’. Mum hugged her and she was shaking so much. She kept saying she could see funny things and Mum told her that Indi (our dog) would see them off. Mum made her a sweet cup of tea and gave her a codipar tablet. She calmed a lot but she was still convinced there were people in the room and just couldn’t understand how Mum couldn’t see them too.

It’s such a worry. My folks are due to be going on holiday in a few weeks time and originally we were going to put Nannan into a care home for the week but now we think its just too stressful for her so I (and our family) will help out with caring for the week instead and keep Nannan at mums instead.

It is heartbreaking to see her like this and see her in so much anguish. It is very hard to see someone you love in such a state.

I think unless you have witnessed it it is hard to believe or understand. Today I have been looking into the Hallucinations a bit more and found this article on the Alzheimers site and thought you may find it useful too:

Hallucinations in people with dementia

What are hallucinations?

A hallucination is an experience of something that is not really there. Hallucinations can occur for all the senses, though visual hallucinations (seeing things that are not really there) are the most common type of hallucination experienced by people with dementia.

Visual hallucinations can be as simple as seeing flashing lights, or as complex as seeing animals, people or bizarre situations. Less often in people with dementia, hallucinations can involve hearing (voices, for example), smelling, tasting or feeling things that are not really there.

Hallucinations and dementia

People with dementia are often thought to be hallucinating when in fact they are making a mistake about what they have seen (see 'Visuoperceptual mistakes' above). There are some specific forms of dementia, however, where hallucinations are more common. These include dementia with Lewy bodies and Parkinson's disease dementia. Hallucinations can also occur in Alzheimer's disease.

Hallucinations in people with dementia with Lewy bodies usually take the form of brightly coloured people or animals. They often last for several minutes and can occur on a daily basis. Around one in 10 people with dementia with Lewy bodies also experience smells that are not really there (known as olfactory hallucinations). People with dementia may also experience auditory hallucinations (hearing sounds or voices) and tactile hallucinations (sensing things that aren't there).

Supporting the person

If you suspect that a person is hallucinating, try to explain calmly to them what is happening. If they cannot retain this information, repeat it when they are calmer. However, if this is still not possible, there is little point in arguing. Attempting to convince someone that they are mistaken can lead to more distress, for both parties.

Try to stay with the person and offer reassurance. Tell them that what they are sensing is not evident to you, but you want to know what they are experiencing. Listen carefully to what they describe. Could it be that language difficulties can explain what they are reporting? For example, someone might refer to green cushions as 'cabbages'.

Try distracting the person to see if this stops the hallucination. For visual hallucinations, the environmental adaptations listed above – including improving lighting levels and eliminating shadows – are also important to consider, as are the points listed under 'Careful attention to eye care and visual health'. For auditory hallucinations, check the person's hearing and make sure that their hearing aid is working, if they have one. People are less likely to hear voices that are not there when they are talking to someone real, so company can also help.

Treatment

It is important to note that hallucinations can be caused by the side-effects of medication (including some antidepressants and drugs for Parkinson's disease) or certain illnesses (including fever, seizure, stroke, migraine and infection). If a person is experiencing hallucinations you should consult their GP. If the person's hallucinations involve multiple senses, seek medical help immediately, as this can indicate serious illness. It is also a good idea to seek medical attention if the hallucinations frighten the person, last a long time or occur often.

When visiting the GP, it will help if you bring notes about:

what the person saw or sensed

what time of day it occurred and after what event (eg nap, meal, exercise)

where it happened and how long it lasted

how the person responded (eg, if they were distressed) and the words they used to describe what they experienced

medication the person is taking and the dosage (including any supplements and over-the-counter medications)

the person's medical history, including any previous sight (or other sensory) conditions and mental health issues

the person's use of alcohol or other recreational drugs.

Some people with dementia experiencing hallucinations respond to anti-dementia drugs, particularly people with dementia with Lewy bodies. In some situations, people with dementia may be prescribed antipsychotic medication. Antipsychotic drugs do help some people with dementia, but they can also cause side-effects and should be used with caution and be reviewed regularly. However, there are certain circumstances where antipsychotic medication can be effectively used to treat hallucinations, despite their risks. In some cases they can eliminate or reduce the intensity of psychotic symptoms, such as delusions and hallucinations, and have a calming and sedative effect. For more information, see factsheet 408, Drugs used to relieve behavioural and psychological symptoms in dementia.

If a person with dementia with Lewy bodies must be prescribed an antipsychotic drug, it should be done so under constant supervision and reviewed regularly. This is because people with dementia with Lewy bodies are at particular risk of severe adverse reactions to antipsychotic medication. If you have questions about the use of antipsychotic drugs speak to the doctor.

For details of Alzheimer's Society services in your area, visit alzheimers.org.uk/localinfo

For information about a wide range of dementia-related topics, visitalzheimers.org.uk/factsheets

LINK: http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=1408

I hope this blog and link helps y'all who are floating along in this boat with me. Please do chat to me on twitter with your stories, it helps to share.

Al x

Tweet me @legouix

#legouix #hallucinations #alzheimers #dementia

One picture can be worth a thousand words

Excellent blog... Do follow http://practicalalzheimers.com/how-one-picture-can-be-worth-a-thousand-words/

Understanding Dementia - Memory and Communication

So I have been inspired to write a series of blogs by my Nannan who is suffering with dementia and alzheimers. I won’t go into detail again because you can read my earlier posts about it all :-) but having talked to you about what dementia is, and symptoms etc I now want to share with you what I learnt at the Memory Clinic on Monday and share my experiences after putting things into play a bit…

CONVERSATION

Understanding and Speaking - How can you make things easier for them AND yourself?

People with dementia tend to be slower to catch on. They gradually join in less and less, and they well be reluctant to go out at all. They struggle to 'find the word'; they repeat themselves over and over... How are you supposed to deal with this? How should you respond?

Try to avoid asking questions that rely on their recent memory. Obvious questions to us would be “what did you do today?”. This puts them under SO much pressure and puts them of the back foot straight away. You must try to remember that they will NOT KNOW! Some sufferers are aware and many are embarrassed that they can’t remember so don’t know the answer and often will have a one line answer that they have rehearsed. When asked “How are you today?” Nannan ALWAYS replies “ooo you know, can’t complain, can’t complain”. The reality is, she doesn’t really know. She can’t remember if anything has happened to change this feeling today.

Give more information, fill in the gaps. For example. if I were to say to you “isn’t it tragic.. I’m really not sure why she was out at 730pm but apparently it was a tiny little village” you would all know immediately what I am talking about. We all assume people know and remember what has happened recently. Alzheimer suffers will never remember this. So tell them the story first and then keep reminding them during your conversation.

We NEED our short term memory to put what is said into context and make sense of it. So in a conversation give them more information and try to fill in the gaps for them. Remind them of the background of the conversation or subject at the beginning of each sentence or ‘paragraph’ that you speak. (early days this is still effective and possible) Always use the names of people rather than he/she/they.

Slow down the pace of your conversation. It takes a lot longer to process information. Take time to practice slowing your speech and be comfortable with silence. They WILL appreciate it because they can hear and understand you more easily.

It is much easier for a sufferer to talk one to one rather than in a group. Just a fact :-)

They cant understand some of the words you are saying? Use easier words… I don’t mean treat them like they are simple. They are NOT suddenly stupid! But they cannot cope with LITERAL expressions any more.

We tend to say: “Im whacked”, “at the end of the day”, “gimma a break”, “Im over the moon” and so on. Sufferers will start to struggle with this language. So avoid modern day speak & jargon. They are just more concrete in their thinking.

Often we misuse grammatical structures - so try to use simpler, shorter sentences instead.

WORD DIFFICULTY

Taboo

I mentioned this is one of my last blogs. Its a game that will show you how they are feeling when they are struggling with word difficulty. Its great and really helps.

Memory Aids are a brilliant tool but don’t JUST use a photo. Make sure that under all the photos that they carry, you carry, that are on the wall, in frames in their room etc have the NAMES on them. Who is in the photo, what relation are they, where are they? Any useful facts will be appreciated.

You cant understand what THEY are saying/they cannot remember the words?EVERYONE can communicate. No matter what. So learn what her/his facial expressions are telling you. You can also say something like “Can you show me”, “I can tell you are worried about/feeling/thinking…” - They will feel happy they have communicated something to you… Prompt the word if you can guess it - but use this sparingly. Noone enjoys it when other people finish off your…

Ask specific questions… “Is it about such n such?”… “Can you tell me more about it?” “Is it about…?”

And if its really not happening then use “Don’t worry it’ll come back to you”

This is REALLY working with Nannan AND it make you - carer - feel less stressed that they cannot find the words either. We all feel like it is taboo for us to get irritated, frustrated, angry and so on. IT ISN’T. It is perfectly natural, normal, human. But these sorts of sentences REALLY help take the pressure off yourself too. Don’t expect so much from your pal.

HE/SHE KEEPS REPEATING…

Ok, we have all been there with someone who is suffering. Its the biggest frustration for carers. Its so tiring answering the same question over and over again. Don’t beat yourself up!

Why? So. The same thought is recurring and they cannot remember having said it before. Often, this is something they are anxious about.

What can you do? Its all about DEFLECTION

Try to steer the conversation elsewhere. Change the subject. Introduce a prompt. this works well - start carrying something on you that you can use as a conversation starter/changer (books, photos, objects)

Sometimes they are anxious about appointments. In fact this seems to be a major thing that worries them from what some of the other carers were saying on Monday. So, try to only inform them of appointments at the last minute and use memory aids when telling them.

Generally you need to try to tune into the feelings (rather than the facts) being expressed and try to respond to these first.

QUESTIONS, QUESTIONS, QUESTIONS

Would you like a cup of tea?

What would you like to drink?

Would you like tea or coffee?

Im having a drink, would you like one?

Im having a cup of tea, would you like one?

I think its time for a cup of tea

Hopefully you can see the progression there and as the dementia increases, you need to move down the question channel!!

When we ask Nannan if she would like a cup of tea, without fail, she will say “oh are you making one”. That starts to drive you crazy after a while. And until now, we havent really considered asking it in a different way to avoid the response. Last night, i said to Nannan: “I am going to go and make us a cup of hot chocolate”.. she responded with “ooo lovely”. BINGO!

Ok i need to take a break now guys, but Ill write a bit more in a while about distracting and also what you can say when correcting them etc…

Al xx

@legouix

#dementia #alzheimers #legouix #ageing

engageandcreate-blog

Working with Dementia - Salmagundi Films

Amazing work with dementia patients making films of their life stories.

FRAMES OF MIND® at the Watermill, Wallsall (2011)

Frames Of Mind® is the concept of using Stop Frame Animation as a communication tool, to produce unique digital portraits. Participants animate personal objects/belongings which become catalysts for anecdotes, and a recorded voice over narrates their story.

The Power of Words…wow

‘The best thing I ever did was stand up and say I have Alzheimer’s’: Terry Pratchett speaks to Fiona Phillips

n case you missed this article…..(Taken from: http://www.mirror.co.uk/news/uk-news/terry-pratchett-speaks-to-fiona-phillips-1434665)

——

Since Terry first said he had the disease in 2007 I had always wanted to meet him and he, apparently, was keen to see me

On my way to interview Sir Terry Pratchett I tweeted about our meeting.

The responses ranged from: “How amazing! He’s a fabulous writer and totally awe-inspiring person”, to “I hope you find him as well as can be expected” and “You and he are both doing so much for dementia”.

And that’s why we were meeting. To discuss his life now that it includes being the highest profile campaigner for Alzheimer’s while actually living with the disease.

The Discworld author first said he had it in December 2007, just over a year after I’d lost my mum Amy to early-onset Alzheimer’s.

It was a particularly bleak period as we were told that my dad Neville also had it.

Until then, I’d felt a bit of a voice in the wilderness, going on about the lack of understanding and good care.

Terry’s honesty was a eureka moment for me. Since then I had always wanted to meet him and he, apparently, was keen to see me.

But it didn’t seem that way when I introduced myself and went to shake his hand.

Dressed from head-to-toe in his trademark black, a top hat and frock coat, he looked like an authoritarian Dickensian character from his Oliver Twist-inspired novel Dodger.

When he didn’t offer his hand back my heart sank a little.

“He can’t see your hand,” his book publicist Lynsey explained.

Terry, 64, has a form of early-onset Alzheimer’s called PCA (Partial Cortical Atrophy) which affects the part of the brain responsible for visual signals.

As we sit down he reaches to fiddle with my phone, trying to make out what it is.

When I explain it is recording our conversation, he cheekily says “amateur!”

Terry’s twinkly-eyed humour made me, by contrast, recall my mum’s constant tears and depression.

“It surprises me. It surprises my specialist,” he tells me.

He has written eight books since his diagnosis and his doctor has told him he has “Terry Pratchett’s PCA, which isn’t like anyone else’s PCA.”

He can no longer use a keyboard but, instead, has a program which enables him to talk to his computer.

So, how else has his illness affected him?

“Words escaping just about the time you’re going to say something. You’ve got it lined up and suddenly it just slips away,” he says.

His words are very considered, his answers long and drawn out.

If he forgets a word there’s a silence as he cogitates, before returning to the point where he left off and continuing the anecdote.

I try not to ask too many questions so as not to interrupt his thoughts. You can almost hear the determination to hang on to facts and to maintain his fluency.

I ask him if he has trouble getting dressed, which is one of the first signs that a person may have cognitive difficulties and we joke about the fact that being dressed all in black makes it pretty hard to screw up.

“You’ll notice,” he adds naughtily, “that my hat is not on upside down.”

I note that his pants aren’t on his head either, which was sometimes the case with my dad.

“Well, pants are pants on the whole,” he chuckles, “and it’s not particularly easy to get them on back to front.”

As with most of us, Terry finds that a routine helps maintain his daily existence.

“I get up, pop my pills,” he says, referring to Aricept and Ebixa which can, in some cases, temporarily arrest the progress of Alzheimer’s.

He’s been paying for the drugs since he was diagnosed in his late 50s because you have to be 65 to get them free.

“I’ve got money, so I don’t notice,” he remarks, “but it annoys me.”

Does he appreciate that his experience of Alzheimer’s is a more privileged one than most?

“Oh, absolutely,” he says before mulling over the fact he’s still “fit for purpose if that purpose is to spend most of the day writing books.”

His books have sold more than 70 million copies and Terry is now almost as well known for talking honestly about living with Alzheimer’s but says: “I don’t like to be an icon in this matter because there are people far, far worse off.”

Then he says something astonishing: “I think the best thing I ever did with my life was stand up and say I’ve got Alzheimer’s.”

Terry, who married Lynne 44 years ago and has a 36-year-old writer daughter Rhianna, tells me that as a young journalist he was told never to use the word cancer, “as people were sensitive”.

The first time he heard it used was when broadcaster Richard Dimbleby died in 1965.

“And at last it seemed as though someone had opened a window and people were talking about it and so…”

At this point he loses his train of thought, concentrates, says: “I’m tripping over myself.”

Gathering his thoughts Terry adds: “Let me go back to the beginning of the sentence. I get all my clauses in the wrong place.”

He goes on to explain that once he was diagnosed it was almost as if he’d been told: “OK, you’ve got it, now go home and get on with it.”

I tell him the same thing happened to my parents.

Terry says: “If it was cancer it would be sorted. But with this you and your spouse are left in the lurch”.

It was then he decided to “tell everybody” about his Alzheimer’s.

He says he knows “a couple of well-known people” who have the disease “and aren’t saying” and he’s told them they could do so much good by opening up.

Mind you, his time hasn’t been his own since sharing his diagnosis.

“People come up to me in the street and tell me about their mum, their granny.

“One time, in Salisbury, a big lorry screeched to a halt and the man was in tears, talking about his mum.”

I wonder how Lynne, the spouse “left in the lurch”, is coping with the changes.

Terry says: “Hmmm, what’s the average day? Two cups of tea in bed, talking about stuff, me going down into my bathroom, do the pills… go and pick up pants.

“Lynne’s quite methodical about where stuff’s left. I know where to find the clean stuff and I put the dirty stuff in the other bag.

“Then I go down, open up the chicken coop and feed them, then I open up the chapel which is where I work… go for a walk… and that’s it.”

Does he ever get depressed? “No, my father was a stoic,” he replies before asking about my father.

I tell him he was killed by the overuse of drugs for his Alzheimer’s. “Ah, so that was murder,” he exclaims.

Then Terry expands, moving on to assisted dying. “My dad said to me when he knew he was dying… ‘if you ever see me just lying there with pipes and tubes, tell them to shut me down’.

“He was in a nice hospice but my mother had to watch him more or less start looking like an Egyptian mummy.

“The nurses were filling him with morphine, so that is an assisted death in the first place, so why go through all that s***e?”

He tells me he has Tony Nicklinson’s picture in his writing room and is furious that “he had to starve himself to death” instead of being allowed the right to die.

“If someone is compos mentis and his plea to die is witnessed by two doctors, how can an assisted death like that be murder?”

So, does Terry have an end-of-life plan? “Yes, I plan to die… it’s all the rage,” he cheekily retorts.

“I have a living will and I have friends, and I have money and I have hope.

“There are things around and I know where they can be got quite easily but I quite like waking up to the sunshine.

“I don’t think about the end game. I’ve got lots to occupy my mind. It’s the rage that keeps me going.”

And long may he rage against the dying of the light. I, for one, will always hold a candle to him.

Terry Pratchett’s latest book, A Blink of the Screen: Collected Shorter Fiction, is available now.

http://www.mirror.co.uk/news/uk-news/terry-pratchett-speaks-to-fiona-phillips-1434665

Are YOUR needs being met?

So. I will only touch on this briefly now really as they do a big bit on ‘Helping us as carers’ later on in the course so Ill get more proper information then. But in the meantime…

ARE YOUR NEEDS BEING MET?

Can you relate to these words when thinking about how YOU are feeling?

frustrated

trapped

helpless

tired

worried

responsible

resentful

angry

sad

burdened

regretful

stressed

There are a million more but that’s a good start…

I touched on this a bit in the last blog, but focussed the attention more on what you can do to help your sufferer rather than what you can do.

Everyone has a million and one things to be doing/thinking about/worrying about/caring about ON TOP of worrying/caring about/helping their dementia induced pal.

Are YOUR needs being met?

Again, lets look at the Tom Kitwood diagram:

Without a doubt you will be feeling trapped; like you don’t get to see your friends as much; like you can’t enjoy your own life/retirement/hobbies/children/grandchildren/marriage/partners and so on. It is SO important that you make time for these bits too.

There is a good analogy. Imagine a glass holding water. You are the glass. Your loved one is the water. if you don’t make sure that you are looking after yourself, cracks will appear in the glass and gradually, if the cracks aren’t fixed, the water will run all over the place.

Caring for a loved one with dementia and feel really overwhelming and stressful.

In my last blog I mentioned ‘New Behaviours’ and one of them was ‘A lack of empathy’ So here i am, telling you how important empathy is, when your loved one is gradually losing that ability altogether! So, if that’s the case then try and say something. IF you can do it in the right way, then certainly at fairly early stages, you can tell your pal how you are feeling. It may well help and make them less demanding. Maybe they need prompting to be empathetic.

STRESS REDUCING TECHNIQUES

Don’ interfere if you don’t need to

Adjust your expectations of what the person can do

Concentrate on essential care tasks, the rest can wait

stop what you are doing - try again later

Peaceful surroundings

Avoid doing something that you know will cause agitation when the person is tired

WHICH OF THESE DO YOU HAVE MOST CONTROL OVER?

Jury was out on this one in the meeting last night but the psychologist said - and I agree - the only bit that you can really and truthfully have control over are your actions.

Try, for the next 30 seconds, to NOT think about a PINK ELEPHANT…

Impossible huh?

But you can avoid talking about the pink elephant.

DONT JUDGE YOURSELF for what you are feeling or thinking. You cannot control them fully or make them disappear.

You have most control over your ACTIONS but again, you aren’t expected to be perfect. It is impossible to be so. But look at it all like this:

FACT: We know you cannot switch off your brain so just don’t stress yourself about what you are thinking or feeling. Forget about trying to change that. Take the pressure off yourself by thinking that the only bit you need to look at are your actions. Just work on that box and just accept you will feel the other bits no matter what!!

SOME IDEAS FOR COPING

Walk away

Walk the dog!

Take a break

Count to ten

Take ten breaths

Notice five things

Talk to someone else

Meditate

Talk to someone else who is dealing with it too

Ask people to help you

Al xx

Understanding Dementia - Coping with new behaviour continued…

Hey y’all

So yesterday I started writing about ‘New Behaviours’ and how to cope with them.

Empathy is the key word, but that really is easier said that done.

Yesterday I watched a dvd that featured fairly young people with dementia. Remember, it isn’t just ‘old’ folk who get it. These people were late 40’s upwards. Really sad. So, although you may be reading thinking this bit isn’t applicable to you - it may not be directly - but what was interesting was the things they were saying about how THEY felt about having dementia. These are some of the things they were saying:

“Some days things seem to be in a mist… other days I am fine”

“Some days I feel all alone”

“I just began to notice that I was making mistake and doing rather strange things”

“It was very awkward. I didnt realise it had anything to do with me”

“I thought I was going mad. the doctor said I just had depression and it was a long, long time when noone knew what was wrong”

“The doctor didn’t tell me. He asked me to leave the room. then he told my wife”

“I feel incapable. I am treated like a child”

“People assume everything is wrong with me and that it’s not just my memory. Suddenly people help me with putting on my coat or helping me cross the road! As if I am going to suddenly lose that ability!”

“Its really frightening, giving up work, giving up your car. Your brain goes in to a kind of cloud”

“People are diminishing you by taking away your ability”

And so on… Now these are statement from younger people. Naturally, in most cases the sufferer is ‘old’ and DOES need help with things on top of the dementia of course. The fact is, Nannan cannot dress herself very easily; she could’t just cross the road; she cannot drive etc. But it was interesting to hear how younger people felt because there are many older people who ARE still pretty able and they will be feeling very similar things. One of the points Nannan does make is that she will never understand why she had to stop driving and we took away her car.

So it takes you back to the Tom Kitwood diagram I uploaded yesterday describing‘What we all need to make us happy’ - just because someone has dementia and is losing their ability to remember, it doesn’t mean they are suddenly incapable of doing everything else. Try to make sure that if you are suddenly helping them with menial tasks that it is because they genuinely cannot do it for another reason, and not because you just think they are incapable because they will feel like they are losing their petals.

Infact, because one of the petals that is often taken away very early on is ‘Occupation’ then assigning your pal a ‘job’ to do is actually a rewarding thing for them.

PROBLEM SOLVERS FOR YOU!

OK I have some problem solvers for you.

Here is Harold, the ex bank manager

He always liked to look smart…

But, his wife came home to find:

He had cut a hole in his suit jacket

What happened?

clue: A discarded sandwich on the side

Answers on a postcard ;-)

…

This is Norman and Peggy:

Normans garden:

But as Norman has gotten worse, so has his lawns because he keeps mixing two bottles together in the shed before putting them on his grass:

and

Norman is angry that he has always had an amazing garden but now he hasn’t. His wife, Peggy, has always been rubbish when it comes to the garden, but she can obviously see what the problem is. But Norman cannot bare the fact that she is telling him what he should do when it’s a subject she knows nothing about…

What do you think she should do to help stop it?

Answers on a postcard ;-)

This is Joyce

Intruders broke into her bungalow

Joyce was so scared after that. She wasn’t sleeping. She would stay up all night fearful that it would happen again. Her family moved her into a care home.

She started dragging her furniture up against the door of her room every night before bedtime.

What could they do to stop this from happening each night?

These are all true stories that have happened to people on the course. This is not unusual behaviour for someone with dementia - or, at least, it’s not unusual for a sufferer to not be able to work out how best to cope with these types of situations.

IS ALL BEHAVIOUR TO DO WITH THE BRAIN DAMAGE?

How do you know if their behaviour is simply the dementia talking/acting or has it got something to do with how you are acting around them/talking to them?

If the new behaviour is pervasive (constant and continuous), it is more likely to be due to the brain damage itself

Repetitive; ritualistic; unawareness; rudeness; impoliteness; antisocial behaviour; insecurity; total lack of empathy; bigoted; dis-inhibition; impulse control is diminished - all behaviour like this is more likely to be due to brain damage.

This is because their is damage to the FRONTAL LOBE - damage to the sensors that regulate emotions and behaviour.

So there are lots of things we think about people, things, situations but we know not to say them - like in the case of Nannan loudly telling us that they lady next to her in the care home was actually a man. Someone with frontal lobe damage loses their impulse control. This diminishes insight and judgement.

If, on the other hand, it only occurs in certain situations it is more likely to be a reaction to a specific event or experience

Learn to look at behavior as a form of communication. What does a person’s behavior communicate to us? It may be our behavior that is a problem.

Your behaviour may be the “challenging” one

To work out which way round it is: Define the problem clearly. Ask yourself:

What happens?

When?

For how long?

Is there a pattern?

Consider the cause…Try to think broadly - use your knowledge of the person - their personality - likes and dislikes

Can you identify a specific trigger? Has the environment changed? Look out for physical needs or illness. Think about emotional factors. Consider your approach and consider what is being expected of them.

Are your expectations too high? It is really important to start narrowing down your expectations.

Im going to look into how it actually affects the carer in the next blog. But before i do that, please, when you read these do NOT feel guilty. I do not want people to be saying argh, i do that, and that, and oh no I do that too and I shouldn’t have done that or said that etc.

This blog is not a ‘bible’ of course!! What do I know, im just a performer type!! But I am simply passing on information that I have learnt, read about, researched, and discovered through getting it wrong right with Nannan. Whatever you are doing IS right. Human instinct kicks in and takes over so trust that and know that EVERYONE is feeling the same as you.

No two people with Dementia/Alzheimer’s are the same either.

Also, try to remember that there are parts of all this that are positive.

My positives: I have been hanging out with Nannan so much these last few weeks; I am cherishing every moment I get with her; Of course, she drives me crazy sometimes, but i have also had some amazing discussions with her and she was a cool cat in her young days; I am enjoying helping other people through the use of blogs and answering questions when I can about it all; I want to help my Mum deal with it all and make her life better; I want to feel that when the time comes, I have no regrets, no missed times, no questions I should have asked, and know that I did everything I could do make the process better, happier and more comfortable.

Laugh. Find the Joy! Use humor. It is the universal language. Everyone understands it. Laughter builds relationship, costs nothing and makes us feel good.

Al xx

Good resources:

Sometimes Ya Gotta Laugh by Karen Stobbe

Rethinking Alzheimer’s Care by Sam Fazio, Dorothy Semen, Jane Stansell

Alzheimer’s: From the Inside Out by Dr. Richard Taylor

The Forgetting: Alzheimer’s: Portrait of an Epidemic by David Shenk

Alzheimer’s Early Stages: First Steps for Family, Friends, and Caregivers

by Daniel Kuhn, David A Bennett

The Best Friend’s Approach & A Dignified Life: The Best Friends Approach to Alzheimer’s Care,

A Guide for Family Caregivers by Virginia Bell, David Troxel

Speaking Our Minds: Personal Reflections from Individuals With Alzheimer by Lisa Snyde

Learning to Speak Alzheimer’s: A Groundbreaking Approach for

Everyone Dealing with the Disease by Joanne Koenig Coste

Talking to Alzheimer’s: Simple Ways to Connect When You Visit with

a Family Member or Friend by Claudia J. Strauss

Alzheimer’s: Finding the Words by Harriet Hodgson

Forget Memory by Anne Davis Basting

My friend’s story…

While I was writing that last blog, my friend messaged me with his story. he is happy to share it and I think it is good to share people’s stories. That said, it isn’t a happy one so please don’t read it if you don’t think you can.

“It was a long and debilitating disease, and in the end it was a release for all of us. For Grandad and his daughters most of all!

Dementia is a term that people just don’t really understand. Mum would take Nanna to Tesco often to do her shopping. She told the cashier that her mum had dementia so that the woman could be a little more understanding of the fact that Nanna had no short term memory at all. The woman replied with…”well why have you brought her here?” Quite disgusted she was apparently!

Its a disease that is a thief. It steals the person you love from right in front of you. Slowly but surely, they lose all short term memory, then their long term memory, and eventually, their bodies basically ‘forget’ how to operate. I spent some time watching some of the clients of a home for dementia sufferers….it was AWFUL! To see these once proud people reduced to shuffling husks was heartbreaking!

There are some techniques that have been developed to work with dementia sufferers, its like traffic lights. They are the expert, dont argue with them. If you argue with them, it confuses them and they go from a green to an amber straight away… If you dont back down and distract them from that, it can lead to them becoming a red, and that means meltdown….

The early stages are really hard to spot, so we are not sure how long… we reckon we can date it back at least 10 years and she died at the beginning of this year. My wife’s grandad died of alzheimers, so she’s really familiar with this as well

The thing is that people dont really understand what dementia is. I would often refer to her condition as alzheimers, as people seem to have a better understanding of what that is!

Nanna never knew my children - they were just small children that belonged to’ that man over there’. Grandad became ‘Uncle charles’ for the last year or so. Uncle charles was her sisters husband who died about 20 years ago

Nanna and grandad were married for over 60 years, and dementia stole all of that from them!

We had all of the photo books and memory joggers and so forth but it actually means nothing when it gets to a certain point because the faces mean nothing

I heard an analogy that likened it to a computer (which I suppose the brain is after all). You go looking for the reference to a stimulus in the ‘my documents’ section of your hard drive but when you go to where you think it should be, its not there, so you panic and it’s just that, more and more of the ‘hard disc’ gets corrupted untill the computer just breaks down

Im in tears as I write this Al but the end has really been a release.”

Hugs to you and your family xx

Understanding Dementia - New Behaviour

Hey folks

Ok… So this weeks Dementia blogs are all about ‘new behaviours’ we may be experiencing in our loved ones.

Ok anyway. So.. this is obviously fairly new behaviour.. or at least certainly her ghostly sightings/hallucinations started a few months ago.

This is all well n good. Funny hallucinations etc but often the ‘new behaviour’ we experience with out loved one is not actually all that fun/nice/funny etc.

EXAMPLES OF ‘NEW BEHAVIOUR’

Suspicious

Argumentative

Irritable

Rudeness

Resisting help and advice

Passive and apathetic

Obsessional and routine bound

Blaming others

Aggressive

Possessive

Clingy

Too trusting

Blaming

These are just some of the new behaviour’s you may be experiencing. The‘Suspicious’ characteristic seems to come up time and again for people. Nannan has been known to accuse people of stealing her things / money and usually it is because she doesn’t remember that she put them somewhere in the first place of course.

(Please don’t think I am belittling when I joke by the way. I am not. But we HAVE to have some light relief because it makes it easier to deal with and ITS OK to do that.)

WHAT DOES IT FEEL LIKE TO CARE FOR SOMEONE WITH MEMORY DIFFICULTIES?

Just some of the ways I am sure you do/have/will felt/feel:

Frustrated

trapped

helpless

tired

worried

rewarded

responsible

resentful

angry

sadness

burdened

regretful

loss

stressed

guilty

So let’s talk about some coping strategies.

EMPATHY

This is a key word. Learning empathy is key and will really, really help.

Let’s do an exercise.

Can you remember an occasion when your memory let you down?

How were you feeling at the time

What were you thinking

What did you do? How did you react?

oh. my. god. the shame!! I was mortified. Shocked at my ability to forget such an important date. Panic stricken. Embarrassed. Nervous

I have really, really let Mum down. How can I fix this? What can I do? I feel so guilty. How must she be feeling?I spent the day in panic. Very sad. Very nervous

. I bought her some flowers on the way home. I apologised. I never did that again!

‘Blame’ i mentioned in the list of traits at the top. Often, it is much easier to blame someone else than admit defeat too. It absolves the person from responsibility then. ‘Blame’ is a really natural defence to stop yourself from feeling vulnerable. So if you can hook in to the memory of how you felt about yourself then maybe the empathy exercise can help.

WHAT WE ALL NEED TO BE HAPPY

Tom Kitwood, is a professor in person centred care. He spent a lot of time with people suffering with Dementia.

Before he came on the scene everything was blamed on dementia. But Tom did a study and he looked at how people were treated and how they ended up acting as a result from this treatment.

Dementia, and the way you act with your loved ones, affects their petals. We need ALL our petals to make our person-hood.

As the carer, if there is anything you can do to increase just ONE side of a petal, then that’s the best thing ever :-)

I need to go to bed but I’ll write some more tomorrow

Nitey all

Al xx

@legouix

Coping when a loved one has Dementia - more useful things

Hey

Ok well i think this will probably be the last chunk of information stuff till next weeks session. Over the week Ill update though im sure :-)

Anyway… So before I go… Here are some final quick ideas and tips I learnt to deal with….

EVERYDAY MEMORY DIFFICULTIES

forgetting names

forgetting what they have been told

forgetting what they have done

forgetting the date, day, time

forgetting where they put things

getting lost

General points about Memory

STRESS impacts on memory. Really try to avoid making changes to household appiances. try to avoid putting them on the spot. ROUTINE supports memory.

Last blog I talked about memory books, family trees, memory boards but there are many other things you can use and what i have learnt new is that:

If you get them to help you write things down; write in the books; create the family tree; name the photos it will HELP THEM REMEMBER it more clearly.

Relief :-) Nannan can help me make the book! Plus, lets face it, trying to come up with new things to do together is really hard so thats a good way of sharing and joining together etc.

NEW LEARNING - general principles

Even people with moderate dementia can learn new information

It takes a lot of repetition

It helps if the person is actively involed in new learning

keep it simple

Build on what is familiar

Use external memory aids

That last point is a good tip for us and Nannan.

External memory aids?

Diaries / calendars

Notebooks

Post its

Whiteboards

Timers

Alarmed Reminders

Medication Reminders

Extending Key Fobs

Clocks showing date and time

Personal message recorders

motion detecting message reminders

Photo button phones

Sensor lights

Fall detectors

Location Trackers

Door Alarms

Home CCTV systems

I like the idea of having something that Nannan presses that can tell her and answer things like:

What did I do yesterday? What am I meant to be doing today and when?

Where did I put it?

http://www.thedisabledshop.com/category/Alzheimer-Dementia-products/Talking-Cube-Clock

There are lots of Memory Aids on here:

http://www.atdementia.org.uk/

The Remote Control Idea

We have real problems with Nannan not being able to work the remote control. Jeez they are hard enough without dementia these days. But I have decided that what I will try is coloured stickers. There is NO WAY Nannan will ever remember how to use the remote but if i get little coloured stickers and stick them on the bits she needs to press, then on her white board I can write:

RED = POWER ON

BLUE = SELECT

YELLOW = VOLUME UP

and so on… ill let you know next week how it goes…

Also remember to get an ALL IN ONE remote. I must tell Mum to do that :-)

Apparently, the course next week covers:

Understanding and coping with new behaviour

Stress on the carer

…amongst other bits Im sure so Ill tell you more then

@legouix

Coping when a loved one has Dementia - what do I say back?

What do you say when a loved one is:

seeing things that aren’t there

wanting to do something they USED to do (collect kids from school, drive, go to work)

asking to ‘go home’ when they are at home

accusing people of things like stealing or hiding things

not recognising close family members

lying

Ok. Well. The hallucinations I have touched on in an earlier blog. Nannan sees a child. One man on Monday said that his partner sees beetles in the bed. there are a few ways of responding to all the above but…

Options for responding?

Correcting (You’ve got it wrong)

Distracting (Lets move on to something else)

Focus on feelings rather than facts (Im interested, tell me more)

The ‘little White Lie’

Correcting (You’ve got it wrong)

This is the normal response when someone gets their ‘facts’ wrong.

it can actually work well when someone has very mild dementia but generally it will cause distress, anger or disbelief so you generally need to look for other ways to respond.

Distracting (Lets move on to something else)

Change the subject. Introduce another activity. Go and make you both a cuppa (without asking if they want one haha)

If they are asking for someone who is no longer alive - talk about that person rather than answering the question directly e.g “Where’s my Mum?” you could say: “I remember when your Mum did such and such…”. Reminisce about that person. they will eventually remember they died without you having to tell them.

Focus on feelings rather than facts (Im interested, tell me more)

This involves talking to the person without challenging their reality. So check out how you think they are feeling first. “I can see that you are excited/angry/stressed/upset” they will put you right if you are wrong.

Get them talking by asking them leading questions. Once in conversation it is often possible to slip into past tense and reminisce. “Do you remember when you met…were at… lived at…”. And if they are like Nannan, they LOVE doing this as they can remember it pretty well.

The ‘little White Lie’

Some people are against this. But i think you have to judge for yourselves. no two dementia sufferers are the same remember so it really is dependent on many factors.

I think it really depends too on who the lie is actually for/helping. I don’t think its a good habit to get into either because people can tell when you are lying and so they will just feel distrustful of you.

I tend to use “silly me” or “im like that, i never remember what day it is either” BECAUSE its true! And it also makes Nannan feel like she’s not really that different to anyone else.

There is a book I recommend called CONTENDED DEMENTIA. I have only just started reading it… It does push a bit too much of the ‘dont ask questions… Neer contradict’ idea but in the main it is great. You can get it from herewww.contendeddementiatrust.org

Other Ideas

I said in my earlier blog that having - on you all the time - prompts and distractors and a really good idea. But also, think of topics that you know your pal can talk about still or loves…

Nannan loves:

Birds

Family

Gardening

Flowers

Animals

Scrabble

She USED to love knitting but in her lethargy she no longer seems to like it at all. And there are some other things that she doesnt like/want to do any more…

Games

I thought that a game I will try tomorrow when I go to see Nannan that could work with the words I have written above… So a category game…

I saw a woodpecker on the way here… Im rubbish with birds names, what other birds are there?

Can you help me, I want to learn how to plant a Sunflower :-) How do I do that?

I havent got much further to be honest but if you have any other ideas, please tell me haha!

Listed in the N.I.C.E Guidelines under ‘treatment for people with dementia’ it says that good topics can be

What’s in the News?

trouble is, the news is so often bloody depressing!

Also, i think with the games and stuff you can use your little white lie a bit… so, “I saw a bird on the way, the one that knocks on trees with its beak… i can never remember its name…” “What bird is it that is on the front of Christmas Cards” etc

COPING WITH EVERYDAY MEMORY DIFFICULTIES

What do I do when they are not recognising close family members?

This is when it gets quite painful for people i think.

My name is Alex. My nickname is Boozey. Nannan, over the VERY recent weeks, seems to have forgotten WHO ‘Alex’ is - yet she knows who ‘Boozey’ is. And she is definitely really struggling with the other family members who don’t see her very often.

Firstly, DO NOT TAKE THIS PERSONALLY!!

How can we help when this happens?

A good thing to start doing is to make a:

Life Story Book

A snapshot book with words and pictures of key episodes in their life from he beginning through to now and as new events happen, more can be added to the book.

Ill make one and Ill take some photos of it for you!

Suggestions according to the Memory Clinic:

Write it in the first person

Divide it into categories: “This is my family”, “I have lived”

Family tree

You could also make a biiiig family tree for the wall with photos by the names.

Memory Book

A few years ago my friend Ema lost someone very dear to her. She said to me, “Al… I WISH I had been able to find out so many things while she was alive and I regret never asking her.. I have found a book that I think you should buy”

I went straight out that day and bought one for Mum, one for Geoffie and one for Nannan!!

The book is called: DEAR GRANDMA (Or Mums is called DEAR MUM :-) and so on)

To my knowledge, Nannan and Mum have written some bits in theirs… i think Geoffie’s is sitting in the bedside drawer empty.. but hey.. he’s a bloke ;-)

But get them :-) Ill find the link now…

OK and it looks like you can get it from most usual places… heres a link to

some lovely looking books http://www.shopcurious.com/products/give-curious/books-and-stationery/default.aspx?Sort=Brand

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