Sunday, 24 January 2016

No wonder people are confused

I'm sceptical about this article and not just because it's in the Daily Mail:


I also read in latest issue of 'The Week' an article which quotes Professor John Hardy telling the Royal Society about 'drugs to halt AD within a decade'. The Week article and also contains this 'fact' (though it's not clear where it comes from):

Since 1980, there has been a 20% drop in dementia incidence (in Britain), possibly as a result of people taking actions to reduce their cholesterol levels.

I've never seen this before and most statistics suggest a growing problem. The Mail article talks of 'increasing rates of Alzheimer's'.

And even if it is true I think his possible reason is pretty implausible.

So much of the stuff you read about AD, even when you discount the massive amount of obvious twaddle, contradicts other stuff. And the media never delve into these matters in any detail at all but just wait for the next press release to come along.

Finally, so many of the articles and news items talk about dementia and Alzheimer's as if they are one condition with one cause (whatever that happens to be this week).

Pure ignorance across the board.

Tuesday, 19 January 2016

Early diagnosis

I have touched on this before, but I still feel strongly that the emphasis placed on early diagnosis of dementia is not necessarily helpful. I'm really talking about attempts to diagnose the exact type of dementia which is deemed necessary but is often much more problematic than people realise. I read regularly about people who have been 'diagnosed' after seemingly minimal investigation. Each time we attended the memory clinic a leading expert on dementia told us that there was a definite problem but that an exact diagnosis was not easy. Every avenue was explored until, 11 or 12 years after the initial referral, we did get a diagnosis, for what that was worth. After each appointment I spent time reminding my wife of all the positives that the expert professor had mentioned - he was a very positive guy, urging us to live as good a life as we could. We carried on doing everything we were still able to do, with increasingly frequent adaptations, finding ways to compensate somewhat for the abilities that were failing.

Do I look back at this with regret? Absolutely not! A diagnosis is just a word or two. It's not uncommon for diagnoses to be changed, sometimes more than once as the condition progresses. Drugs may work a bit for some people and help with some of the symptoms. None of them helped S and she had some unpleasant side-effects.

I would just advise other carers to concentrate on what the person they care for can still do and to find ways of compensating for the abilities that are less secure. We have had 16 years since the clinic referral and had some wonderful times. Of course, it's much more difficult now, but life goes on. I hope you will have many more years together.

Thursday, 7 January 2016

An Update on S

I realise that I'm probably posting less about S these days. I've mentioned her two fits this year and given readers some idea of how the loss of mobility has changed our lives. But I feel that I have not properly recorded how NHS Continuing Healthcare Funding is helping us to get back to a way of life more like the one we had before the first fit. We are able to employ carers who not only help me carry out basic tasks like getting S safely onto the commode or into a bath but also accompany me when I take S out in the wheelchair which we do as often as we can. It's clear that she really enjoys getting out of the house after months of 'imprisonment', just like me! We have also exchanged our car for a wheelchair accessible vehicle. After a little practice we can get S and the chair up a ramp, into the car and have both the chair and S safely strapped in very quickly. We have been able to return to the weekly 'Singing for the Brain' sessions that we so enjoy. S occasionally joins in with the singing and always enjoys the social side, meeting people we have have now known for several years. But such activities are also quite tiring for her now. She often dozes, after a late breakfast, and wakes up at lunchtime but if she has had a busy day the day before she sometimes sleeps for much of the afternoon.

It helps enormously that we have one extremely positive and helpful carer who we see nearly every day and have just appointed a second carer who will clearly be very helpful as well.

Despite this I am still solely responsible for S's health and welfare for many more hours in the week than I am jointly responsible with a carer. I do feel down at times when I'm coping on my own, particularly when things are not looking good. But I always appreciate the fact that being able to look after S personally, with very helpful support, is a great privilege. I don't know how I would cope if she were being looked after elsewhere.

In the Personal Budget, there is financial provision for 'respite'. This is normally taken to mean that the person living with dementia is looked after for a short period in a care home or by home carers whilst their partner has a break from caring. I have not yet reached a point where I would feel happy doing this. I currently use the money to pay for home care one evening a week to enable me to go back to a jazz improvisation group I was attending before S lost her mobility. I do find this therapeutic.

I will try to post more regular updates on S as we are learning new things about how to cope fair regularly

Relationships in care homes

I gather that some 'care homes', believe they have a right, a duty even, to separate two residents who have developed a close relationship  -  even to the point of asking for one of them to be moved elsewhere. I'm finding it hard to believe that an organisation thinks it has the right to interfere with such a relationship simply because the two people involved are living with dementia. Of course, if there appeared to have been any evidence of coercion of one person by another there would need to be some investigation and probably action, but whether two people are just good friends  -  holding hands say  -  or decide to take things further, they have, prima facie, the same rights as any other people. This is, after all the twenty-first century.

A useful way of looking at the whole issue, and it can be applied to many other areas, is whether the fact that the two people involved are living with dementia inevitably means that there are different rules that should be applied to them by people who aren't living with dementia and therefore know 'better'. Many people not living with dementia get themselves into relationships which their 'loved ones' and others deem ill-advised. People without dementia may misunderstand what the other person in a relationship really wants, may abuse the other person mentally and physically, sometimes to the point of murder, and generally make their close relatives very unhappy.

Such a relationship may upset other people, become embarrassing to other people, make life complicated - all things that can happen when any relationship between any two human beings develops.

Take a situation where two people in a care home living with dementia and having no living family develop a relationship which becomes physical. Is that 'acceptable'?

If someone is unequivocally incapable of making a decision as to whether they want a relationship, physical or otherwise, then clearly action is required. But just to mention 'capacity' is not a good enough reason to act. People can easily disagree about it and it is a slippery concept at the best of times.

I hope and suspect that most care homes would recognise the subtleties involved and not have a blanket ban on relationships between residents.

Friday, 1 January 2016

Horses for courses

Those looking after a person living with dementia often discuss the best way of dealing with the situation where the person you are caring for believes something that is not true  -  believing that their partner is their parent, for example. 

I think that you have to play it by ear depending on your own circumstances. You will find some people for whom honesty will always be the best policy and others who will always go along with what the person they care for says, even adding details they have invented themselves to the person's 'story' . I tend to try not to go down the path of invention which, it seems, can easily get out of hand and even catch you out. Often a bit of distraction works and you don't even need to start spinning an appropriate story. But the ultimate test is what is most likely to make the person feel happy or, at least, untroubled.

Monday, 7 December 2015

Would you please consider signing these petitions?

Here are two petitions that readers in the UK might wish to sign. They both deal with the thorny issue of Continuing Healthcare funding (CHC). CHC can be granted to people who have serious, complex health problems and it means that the National Health Service (NHS) pays for their care.

The decision in each individual case is taken locally and it is clear that a 'postcode lottery' exists. People in some areas are much more likely to be funded in this way than people in other areas.

These petitions address this issue:

https://you.38degrees.org.uk/petitions/investigation-into-the-malpractices-of-nhs-continuing-care

https://petition.parliament.uk/petitions/114241

Sunday, 6 December 2015

A beginner's guide to incontinence pad and pants

People with dementia eventually become incontinent. Many people who look after them may have had no previous experience of dealing with this issue. It took me a long time to get my head round all the differing products. I'm hoping this round-up may be of help to others.

There are many brands out there, some of them household names and some of them relatively obscure. Just because you know the brand name it doesn't necessarily follow that a particular type of product is going to be ideal for the person you are looking after. There's a certain amount of research and trial and error necessary and, over time, needs will change.

There are 4 main types of pants or pant/pad combinations.

1) There are washable pants with separate disposable pads.

2) There are washable pants with built-in washable pads. These are intended for less severe incontinence.

3) There are 'nappy-type' disposable pads which are adult versions of what most people use for babies these days.

4) There are disposable 'pull-ups' with a built in pad.

Whichever type you go for it's a good idea to look at the absorbency which the manufacturers claim for the product. Obviously in normal use you can't be sure that you'll get the 3 litres or more that the manufacturers may claim. All sorts of things like whether the person with the incontinence moves about a lot or how well the product has been fitted will have an affect here. My general rule would be that if you keep getting wet or soiled clothes or bedding it's time to see if you can find something that works better for you.

Of course the best products are not cheap. In the UK many Local Authorities have a continence service which may provide free pads/pants but, sadly, it's often the case that the meagre number of pads per 24 hours provided is not enough and the pads themselves are pretty useless if you are dealing with moderate to severe incontinence. You should remember also that the costs of washing those products that can be washed may be considerable over time.

When S first used these products we settled for the separate pads and pants provided by the continence service and these were OK until the continence became severe when we had to look for more absorbent pads. The loss of mobility also made things more difficult and we finally found that the only things that worked pretty well for most of the time were pull-ups with a claimed absorbency of 3 litres plus but even these cannot be expected to last all night.

I haven't attempted to cover faecal incontinence but small amounts will usually be contained by many of the product discussed above. The best way to deal with faecal incontinence, by the way, may not be with medication which is often prescribed. I have blogged in more detail here:

http://adventureswithdementia.blogspot.co.uk/search?q=constipation


Sunday, 29 November 2015

Respite

It's very common for carers to be offered 'respite'. Typically, the person they care for will spend a night, or some night(s), in a care home so that the carer can have a day or few days respite from the demands of caring.

I haven't done this yet but since S has been given Continuing Healthcare funding I could easily do it in the future. There's a specific budget available. But, and this is something that you have perhaps to experience to appreciate fully, even now I find that my efforts to do more, get out and see friends etc are limited by my need to know that S is OK - even though I know that she is being well looked-after. There's almost a time-limit sometimes - I feel the pull and have to come home. Even though I talk about longer respite - even a single overnight away e.g. - I currently find it hard to imagine myself doing that. She still depends on me - I've kept her going. And as a result, I'm somehow dependent on her.

I think I might well eventually come to accept that extended respite, i.e. beyond a weekly 'evening off', will be necessary but I also feel that the difficulty that many carers have in accepting this is underestimated.

Friday, 20 November 2015

S has had another fit

Fortunately it's clear that it wasn't as bad as the last time. Although it was horrible to witness and hear (she was breathing in a strange gurgly way for 7 or 8 mins) she recovered quickly in terms of vital signs. The first responder got here before the fit was even properly over and her oxygen level was normal (it helped that as she was in the hospital bed I was able to get her into the recovery position very quickly, unlike last time when she was in a very awkward crumpled position and it was deemed potentially dangerous to move her).

It was scary - you know anything can happen but it's still a shock when it does - but I found I was able to cope. I was very reluctant to go to A & E after our last experience and I phoned our GP before I agreed and he said to go, if only for the bloods. Our carer came straight to the hospital, as did S's daughter who brought her very recently-born baby with her. So the waiting was actually quite bearable. 

All the tests were fine, including a chest x-ray (as the thing started when she was drinking and coughed so there was a risk of aspiration pneumonia developing) ECG and various blood tests. Her chest sounded fine as well.

Rather than wait 3 hours for an ambulance home, S's daughter drove me to collect the wheelchair and vehicle. I then drove back and our carer helped me lift S into the chair and we came home in tandem. We then got her back on the bed and settled ready for an evening snack. She had eaten most of a sandwich at the hospital so no problems with her appetite. Two days later everything suggest that she is pretty much back to where she was so just a 'normal' fit, if there is such a thing, but we shall see.

I've looked at the NHS Choices page on seizures (fits):

http://www.nhs.uk/Conditions/Epilepsy/Pages/Symptoms.aspx

It confirms that there is an enormous range of symptoms that can constitute a seizure, e.g. S regularly has what could well be Myoclonic seizures, particularly at breakfast time and these can occur in conjunction with other types of seizure.

Also, it confirms that not all seizures are due to epilepsy.

It looks as though this is yet another area that I need to get clued-up about.

Tuesday, 3 November 2015

A very powerful cry from the heart

She's FINE - so we the authorities don't need to do anything but YOU should...
Take the morning/day off to get her to all her medical appointments because otherwise she won't go. Ring them and apologise for her non-attendance and rearrange another appointment, booking yet another day off when she says she doesn't feel like it today.

BUT SHE'S FINE.

Attend said medical appointments and sit slightly behind her in order to nod or shake your head to indicate whether what she's saying has some basis in reality or is a complete and utter nonsense.

BECAUSE THAT'S COMPLETELY NORMAL AND ROUTINE THING TO DO FOR PEOPLE WHO ARE "FINE".

In fact, go everywhere with her now because she's visibly vulnerable when she's out, and a target for the unscrupulous. She's also not really safe on her own out and about any more due to all the falls and her inability to access public transport or cross roads by herself any more.

COS THAT'S NORMAL FOR PEOPLE WHO ARE "FINE".

Nearly get hit by a car yourself when she runs out into the road like a naughty toddler, but unlike a toddler you can't put her on reins.

BUT SHE'S FINE. (YOU"RE A NERVOUS WRECK BUT WHATEVER.)

Do all her shopping because the only thing she can cope with buying anymore is bread and biscuits. Which is lucky because that's pretty much all she eats.

BUT SHE'S FINE.

Supervise her 24/7 because she wanders and has a tendency to turn up places in distress, very frightened and confused.

BUT SHE'S FINE.

Supervise what she's wearing because she tends to wear exactly the same clothes whether it's a heatwave or a snowstorm.

BUT SHE'S FINE.

Remind her to bathe and wash her hair because she doesn't know what day it is, so she doesn't know it's bath day or hairwash day.

BUT SHE'S FINE.

Remind her to use the loo and get out of her chair now and then because otherwise she can sit there in front of the tv for hours and hours and hours and then have an accident.

BUT SHE'S FINE.

Clean up the mess when she has an accident because she "couldn't be bothered to do that now/didn't feel like it/ didn't have time."

BECAUSE THAT"S STANDARD BEHAVIOUR FOR SOMEBODY WHO IS "FINE".

Turn her heating off when it's 26 degrees outside and she's whacked it all the way round to the max "because it didn't come on".

BUT SHE'S FINE.

Go down there to turn her heating on when you ring her to remind her to eat or take her pills and you can hear her shivering.
Also make her put the cardigan on that's sat over the arm of the chair next to her, and press "ON" on the electric fake gas fire that you had fitted because you hoped it would stop her fiddling with the central heating.

SHE'S FINE THOUGH.

Ring her and remind her to eat and take her pills a few times every day.

YOU KNOW, BECAUSE SHE'S FINE.

Go down there immediately every time "the tv won't work" because she can't work the tv all the time and she can't follow instructions over the phone, but it's Ok because it's a two mile walk and the exercise is good for me.

SHE'S PERFECTLY FINE THOUGH.

Realise that you've just got used to most of the downstairs curtains being closed all day every day "because people are looking at her".

SHE'S FINE THOUGH.

Get a Power of Attorney then register it with the bank so that you can pay all her bills for her because otherwise she wouldn't, and everything would get cut off.

BUT SHE'S FINE.

Remove all banking paperwork and her bank card from her home and give her pocket money - because she's been stuffing charity envelopes with hundreds of pounds every month and giving her bank details to people on the phone and strangers on the doorstep.

BUT SHE'S FINE. AND DEFINITELY NOT BEING FINANCIALLY ABUSED BY THESE CHARITIES, CHUGGING COMPANIES AND INTERNET SUPPLIERS/INTERNET SECURITY SALESMAN ETC BECAUSE THEN WE'D HAVE TO DO SOMETHING.

NO. NOT EVEN THE ONE WHO MORTALLY OFFENDED HER BY TELLING HER TO GET HER CARERS TO BUY HER A MAGNIFYING GLASS SO THAT SHE WOULD BE ABLE TO READ OUT HER CARD DETAILS OVER THE PHONE. (CARERS?! HOW VERY DARE YOU! SHE'S FINE.)

Redirect her post to your house so that she no longer receives the charity begging envelopes full of raffle tickets etc because she treats the "suggested donation" part as a bill she has to pay. If it says "Suggested Donation £30" then that's what she sends them.
Except that she doesn't really know which note is which any more so she puts three notes in, but not being sure which ones they are she puts another few in to be on the safe side. And in this way she could draw out £150 from the bank on Monday morning and have none of it left on Wednesday afternoon despite not having left the house except to post a couple of letters.

SHE'S FINE THOUGH. THIS IS JUST SOMETHING YOU HAVE TO DO FOR PEOPLE WHO ARE FINE.

Register the Power of Attorney with the phone company so that you can a) pay the bill and b) so that you can buy her a phone and stop her renting one from the phone company, because she could have bought many many many phones for the amount of money she's paid to rent the same one since 1985, and c) so that they will talk to you because you need to get Caller ID on the line so that you can buy a TruCall machine which will screen her calls - both to protect her from salesman/criminals and because she says "debt collectors" are ringing her to ask questions about her neighbours and she's giving them chapter and verse about who's got a new car, and who stays where overnight, and who she thinks isn't really disabled. You don't know if this is true or not, but you can forsee lots of trouble with the neighbours if she should mention it to them.

SHE'S FINE THOUGH.

Buy a TruCall box and set it up so that only friends and family can ring her.

BECAUSE SHE'S FINE.

Buy her a Buddi telecare system which she refuses to wear, even though she's had several falls. Because she's not going to fall again you see.

SHE'S FINE THOUGH YEAH? TOTALLY.

Be at her house when she gets up in the morning. (Anywhere between 5 am and 9 am.) And again when she decides to go to sleep. (Piece of string) And also if she gets up in the night. Because she can no longer manage cleaning her contact lens regularly and keeps injuring her eye by not putting the neutralising tablet in, taking the contact lens out out too soon, confusing saline solution with cleaning solution or by not cleaning it at all and putting a cracked dirty contact lens into her eye.

OR

Replace her £120 contact lens about every three to four weeks before it cracks, and take her to A&E regularly when she forgets to put the neutralising tablet in or takes the lens out too soon before it has worked.

SHE'S FINE THOUGH. SHE'S NOT ENDANGERING HERSELF AT ALL. NOTHING FOR THE AUTHORITIES TO HELP WITH HERE.

Fill in all forms and do all life admin - because she can't.

SHE'S FINE THOUGH. THIS IS ABSOLUTELY NOT A SIGN THAT SHE NEEDS ANY HELP FROM THE AUTHORITIES.

Guide her step by step through how to sign her name when she needs to - because she can't really write any more, and can't remember what to write either.

SHE'S FINE THOUGH.

Turn down invitations to people's weddings because you can't leave her unattended, don't have a holiday for the last six years or the next 15, realise that the idea of having a social life or even a gym membership is ridiculous and give up your whole life to supervising her.

BECAUSE SHE'S FINE.

Take whatever abuse she wants to throw at you very day cheerfully and compassionately, always validating her reality and negating your own.

YOU NEED TO DO THIS BECAUSE SHE"S FINE.

Fight back tears when an entire bus queue gives you sympathetic looks and pats your hand or shoulder as they get on because of the evil things she's been saying to you at the top of her voice for the last eight minutes while they all queued for the bus.

BECAUSE THAT'S FINE.

Buy her a cup of tea in town and then get back on the bus with her after she refuses to do the shoe shopping you came into town to do because you've upset her by not having the energy to cry and she likes it when she's able to make you cry.

STANDARD. NORMAL. "FINE".

Take anti depressants and sleeping pills just so that you can cope with the stress of dealing with her because her behaviour is so "challenging".

WE WOULDN'T NORMALLY INSIST THAT YOU STAY IN AN ABUSIVE RELATIONSHIP AND DRUG YOURSELF SO THAT YOU CAN COPE, BUT WE WILL ABSOLUTELY EMOTIONALLY BLACKMAIL YOU IF YOU SEEM TO BE SUGGESTING THAT YOUR MENTAL HEALTH MATTERS TOO.

BECAUSE SHE'S FINE.

I came across this online. The person who wrote it has given me permission to post it. They said they are going to edit parts of it as they did it at 5 a.m. and 'it is not very well written'. I beg to differ.

Sunday, 25 October 2015

Diagnosis again

Even now, 15 years after S's referral to the memory clinic. I have learnt something new about her diagnosis, a diagnosis that was only made in 2011. The doctor who finally did the home visit following my pestering after she was 'discharged' from the Movement Disorder Clinic (because a Movement Disorder - inability to walk - meant she couldn't attend the Clinic!) has written to the GP and helpfully copied to the letter to us.

Under 'Diagnosis', I read 'Probable AD (posterior cortical atrophy)'.

This is something of a surprise since this has never been mentioned by any of the medics who have dealt with her previously, which include a leading expert on dementia who saw her regularly between 2000 and 2011 when she was finally diagnosed, by a neurologist, as having AD.

Having had a quick look at PCA online, this doesn't seem any more appropriate than any of the other diagnoses that have been 'tried on for size' during the 15 years.

Just as well, as no-one suggests that it makes a scrap of difference to how S is treated or, rather, not treated.

The only suggestion he makes, apart from a tweak in the Sinemet (Parkinson's Disease) medication, is a 75mg aspirin daily dose due to his 'suspicion of cerebrovascular disease'. This suspicion has been entertained and rejected before. S seems to have none of the risk factors for cerebrovascular disease.

So we're none the wiser really.