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 capacity 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 effect 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 incontinence 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 the maximum claimed absorbency 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.

Thursday, 1 October 2015

Interesting research and a silly generalisation

http://www.expressandstar.com/news/uk-news/2015/09/30/brain-implant-aims-to-reverse-alzheimers-memory-loss/

This is a fascinating idea even if its transalation into something usable is probably decades away.

I spluttered, as I always do with such statements, at this:

That is why someone with Alzheimer's disease can recall events from long ago - before the disease took hold - but have difficulty forming new long-term memories.

I know someone with AD who finds it as difficult to recall any event from long ago as she does to form new long-term memories. I'm sure she's not the only one.

The same old tendency to generalise that we've noted before.

Saturday, 26 September 2015

Dementia death

A couple of times I've come across statements online to the effect that deaths from dementia are uniquely horrible. I know some people with dementia do, sadly, die in pain and torment. But many do not. I've written here about my mum's 'dementia death'. I have also read many accounts of the dying moments of people with dementia and some of them clearly just faded away. Indeed, some of them die in their sleep just as some people without dementia do,

People have also stated that what makes the death of a person who has dementia uniquely awful is the way in which loved ones lose the person 'bit by bit'. Of course, this is true in one sense but it's also true that some families find that they can still find and communicate with 'the essence of the person' right up until their death,

It is also true that there are many other truly horrible ways to die. I do not need to spell them out here.

So whilst I understand that the last days or hours of a loved one dying from dementia can sometimes be truly dreadful, I don't see that there is anything to be gained from expecting it to be or claiming that it always is.


Monday, 14 September 2015

The global impact of dementia (graphically described)

http://www.alz.co.uk/sites/default/files/pdfs/global-impact-dementia-infographic.pdf

When There's No Amyloid, It’s Not Alzheimer’s

This is the heading to a fascinating article in the latest Alzforum weekly newsletter. Here's a link to the article:

http://www.alzforum.org/news/research-news/when-theres-no-amyloid-its-not-alzheimers?utm_source=Alzforum+Weekly+Newsletter&utm_campaign=0372e368ea-September_14_2015_Newsletter&utm_medium=email&utm_term=0_944a562dd7-0372e368ea-91738709

And the first paragraph gives you the gist:

Reporting in the August 24 JAMA Neurology online, researchers led by Eric Reiman at Banner Health in Phoenix, confirm what others have suspected from PET imaging, namely, that as many as one-third of the people clinically diagnosed with mild to moderate Alzheimer's disease do not meet criteria for significant amyloid accumulation in the cerebral cortex. Reiman and colleagues came to this conclusion after examining brain tissue postmortem—the gold standard for assessing amyloid burden. The finding puts the kibosh on the idea that some PET scans are negative because amyloid ligands bind poorly to particular forms of amyloid in some AD patients. It also reinforces questions about the accuracy of clinical diagnoses of AD and leaves the field struggling to explain what causes dementia in these amyloid-negative individuals. This promises to be an intense area of investigation, said Reiman.

Articles like these are often difficult for a lay person to understand. But from what I can understand and already know I would say the title is begging the question a tad. It should be no surprise that many people diagnosed with AD are found post mortem not to have amyloid accumulation in their brains. But surely this could be because either, as the title says, people without the amyloid must have a different disease or different diseases OR because, as other research suggests, amyloid accumulation is not as significant in AD as is so often claimed.

Sunday, 13 September 2015

Still trying to get S walking

We have had a second visit from the private neuro physio. She noticed some improvements in S's movement and balance. The main problem is still that the bent knees aspect of the 'Parkinson's gait' stops S from standing up properly and this is not helped by her understandable lack of confidence after so long off her feet. This is something that might be helped by increasing the dosage of the Sinemet (Parkinson's med), When S first took it about a year ago, the improvement in the gait was noticeable. I have spent a lot of time chasing the Parkinson's clinic for a home visit to assess and prescribe. They do do home visits, it turns out, but it might be a long wait.

In the meantime, the physio was all in favour of us getting S out and about once we are downstairs and have a wheelchair, and she is confident that S has the strength to allow her to be moved from the wheelchair to a car seat. She mentioned a transfer board. If this proves possible it will open up new horizons for us even without S being able to walk. She had some helpful suggestions about ways to make transfers more efficient and safer. When she had gone, K and I transferred S from chair to bed using the suggested technique and S actually took a couple of steps during the process. She was fully supported by us but still this is more than we've seen for quite a while.

We've agreed that she won't come again at least until we have the wheelchair, in 3-4 weeks. I do feel that she is reluctant to try too much for fear of injuring S and is also very reluctant to do things that cause S to be agitated. But the agitation she is seeing is very minor from our perspective. She repeated something that she has said before which is that we may find that with increasingly regular activity S may just start to to walk. I'm sceptical as S was needing a lot of support to get started even before the 'event'. But I do feel that if we are a little more active in supporting her she may eventually overcome her fear of being on her feet, which is currently a major factor.

So there is still some hope.

Wednesday, 2 September 2015

Trying to get S walking again

My biggest disappointment is that efforts by a physio to get S walking again (or I should say to keep walking as I was getting her to walk a few paces for some weeks after the 'fit'), which has been my number one priority, turned out to
be spasmodic and half-hearted. On three occasions I saw him and his assistant helping her to walk and once she walked round in a tight circle in our living room (a difficult manoeuvre) holding onto her walker/travel chair whilst they had their hands at the back for safety. But then we didn't see him for nearly a week and we were back to square one. It seems blindingly obvious to me that the only way to help her would be very regular visits  -  maybe every other day  -  and the resources just aren't there to do that. A handful of further visits followed though he ducked out after another week long absence and was replaced by a couple of less-qualified people. Then we were told that, as they were a short-term service, they could not continue. No NHS physio who saw her was a neurological physio (trained in helping people with neurological conditions) which could account for the main man's official report that he had stopped because S 'could not follow instructions'. There could of course be two reasons for that - Alzheimer's Disease and Parkinson's Disease.

Eventually I started investigating private neurological physiotherapy but it is difficult to find suitably qualified people who do home visits. However, we finally found one who came last week for a very expensive initial assessment. Although, understandably, she made no promises, she was impressed with S's strength and the fact that there has been very little muscle wastage in her little- used legs. It was reasonably successful I felt as did our wonderful new main carer K. The physio was pleasant and seemed to get a good grasp of the situation. The biggest problem seems to be that when S is up on her feet, with help, she is always leaning backwards. We have to work on this. One exercise is to have her sitting on the edge of a chair and encouraging her to keep leaning forward (which she can do) to hold onto something. We will also continue with the various passive exercises we have been doing, mainly with her legs. Her hips are very stiff and the physio said that we should get her out onto a chair for several hours a day and that the hospital bed isn't doing her any favours.

When we move back downstairs (which will be soon now), it will be easier to move about. She can have breakfast in the kitchen/diner, sitting up at the table as she did pre the 'event'. Then she can sit on a comfortable chair or sofa in the living room.

The physio is coming back in a week's time. Both K and I and I feel S is continuing to make progress and is taking the initiative and weight bearing to a greater extent when we move her from the bed to the commode etc..

Tuesday, 1 September 2015

Drugs to avoid

I came across a link to this site online. I think everyone who cares for someone living with dementia and every person living with dementia who is still able to take responsibility for their own medication should know about this. It's a list of drugs which which are best avoided by the elderly and, particularly, people living with dementia:

http://www.healthcare.uiowa.edu/minimedicalschool/documents/BeersCriteriaPublicHandout041012.pdf

Saturday, 29 August 2015

50,000 page views

Today the blog has achieved 50,000 page-views since it began. I wanted to express my heartfelt thanks to all readers, wherever you are in the world.

If you have read my recent posts you will be aware of the recent difficulties that have made it impossible for me to post as much as I would like to. Things are beginning to settle down a little and I hope to resume something like 'normal service' very shortly.

Sunday, 9 August 2015

Will the NHS fund care?

This is a post mainly about the UK but may have some interest for readers in other countries.

We know that in the UK care funding is means-tested and large numbers of people have to pay for their care, even though they need care because they have a disease.

However, if a person's needs and the consequential risks are sufficiently severe, the NHS may fund care costs  -  regardless of their income.

We are in the process of trying to get this funding for what is called Continuing Health Care (CHC) for S. We have been encouraged to believe that she will get it. This surprises some people because it is often thought that you have to have very challenging behaviour (e.g. aggression, paranoia) in order to get the funding. You don't, though many people are funded mainly or partly because of their challenging behaviour.

There's a very informative video here, for people who wish to explore this area further:

https://www.youtube.com/watch?v=HrpFLLwGqhs

It lasts about an hour so I intended watching it in 'bite-sized chunks' but found it so engrossing that I watched it right through and took notes!

Friday, 17 July 2015

Maybe it wasn't a fit after all

Some weeks ago I was trying to get information from the Parkinson's Disease consultant about the possibility of the fit being caused by the medication (fits are a possible side-effect of the Sinemet S takes). I was eventually put through to Parkinson's nurse who was thorough and very helpful. After I'd described the 'fit' and answered a lot of questions she said she would put money on it not being a fit but being the result of low blood pressure causing loss of consciousness. It's apparently something that's common in Parkinson's Disease and often happens 'on the loo'. S had actually finished on the loo but was sitting there and may have been straining very shortly before the incident. The rigidity that I witnessed (as opposed to any real shaking) was a big clue for her. The fact that S then slid down into a very uncomfortable position where her breathing was somewhat restricted wouldn't have helped. But her quick recovery, in terms of her vital signs, would also suggest that her explanation is at least a strong possibility.

Two additional factors that may support the theory: S has always had low blood pressure and another side-effect of the medication is  -  you've guessed it  -  low blood pressure. Whether this theory helps us at all in the long run remains to be seen, but it does seem that this loss of consciousness is less serious than any kind of fit.


Still here

I think I've just had the longest break from this blog since I started it. The reason is very simple. I've been too busy. During the weeks since the 'fit' we have had an astonishing number of different people coming into the house  -  sometimes I've been showing another one or two in (they often come in pairs) whilst showing others out. They are all trying to help us, which is appreciated, though some of them have let us down and I start to think it would have been better if they had never raised our hopes.

We have also had a stairlift installed. This has enabled us to get back to our bedroom upstairs whilst we are having a new bathroom installed. That project was started very quickly and will very soon be finished  -  at least that's what the builder tells me every day! The closer it gets to being finished, the slower the work-rate seems to become. When it is finished, we can plan our permanent move downstairs to a sitting room which has to accommodate S's 'hospital bed', a single bed for me and a hoist of some kind.

I hope to get back to posting more regularly but it's so hard to find the time.



Thursday, 25 June 2015

How to create an invalid

I am very disturbed by the way things are going following S's fit. Already, less than three weeks since it happened, she is being treated like an invalid. No serious attempt to discover why she has practically lost her mobility has been made. It took two weeks and a very determined District Nurse to get her x-rays which have finally ruled out any fractures to the hips or pelvis. The District Nurse's  intention then was that S should receive intensive help from physiotherapists to try and recover at least some of the mobility that she had before the fit when she was capable of walking 5 miles a week. But no-one is really interested in doing this. It seems to me that this is a result of the widespread if unspoken assumption that there is no point in wasting resources on someone with dementia.

We now have two daily visits from pairs of 'carers' who are not seeing an individual person who still has some abilities but a body that is incapable of doing most things. The less S has to move or be moved the better, as far as they are concerned. There is talk of hoists, hospital beds and commodes which she can be wheeled around on. Because they are now involved, I can see that, even though we will soon regain access to two bathrooms (a new one we are having put in downstairs and the original one via a stair-lift) the regime of  minimal movement and bed baths will be hard to move on from. Ironically, I'm still the one who has to do any lifting and moving because we do not have the 'right equipment' yet.

An assessment by someone who gave no evidence of having any particular expertise resulted in a decision, it seems, that the mobility issue was probably a result of what was going on in the brain  -  now there's a surprise  -  rather than any physical problems with parts of the body. The conclusion was therefore that physiotherapy would not help. But, of course, as everybody should know, the brain and the body are intimately interconnected and it's quite possible that repeated physical activity of any kind could help to restore some of the previous connections that may have been damaged. One of the things that perplexes me and the district nurse is that after the fit S was able to use stairs and the loss of mobility occurred in the evening of the day after the fit. No-one can explain this, and, worse, no-one is remotely interested.

Once before, with my help, my brave and determined wife re-emerged from a total meltdown, which also involved mobility  -  in addition to extreme agitation and aggression, paranoia, and torment  -  to become again a person who in her own ways got something out of life and was as physically active as she was able to be. I want to try and help her to do something like that again. But 'they' seem bent on creating an invalid. That is their expertise. And what an appropriate word that is, by the way. It's no wonder that they stopped using it. It gives the game away.

Wednesday, 10 June 2015

S has had a fit

This was the first time I've seen anything quite like this. I had left her sitting on the the toilet waiting for the mobile hairdresser. When I went back in after a few minutes she was still sitting on the loo but twisted up. She looked as if she was wringing her hands and she looked very agitated. She was totally unresponsive. Also her breathing and a little bit of coughing suggested she might start to vomit.

Then she slipped down to the floor. I couldn't stop her but was able to stop her banging anything in the process. She was in an uncomfortable sitting position against the radiator but I was reluctant to move her in case we ended up in a worse position. Her breathing sounded quite laboured and gurgly so I decided to call 999. It wasn't considered 'life threatening' so it took a while before an ambulance became available during which time the operator stayed on the line though I can't say she said much. She asked but I was unable to say whether S was asleep or unconscious. Then a 'volunteer first responder' arrived. Finally, the ambulance. By this time things were looking a little better. S opened her eyes a bit (she normally has them closed for much of the time).

They decided on the Accident and Emergency department at our large local hospital. S's daughter had arrived by now which was great and she followed us to the hospital. In the ambulance S looked better still, holding her head up normally, not back on the pillow and with open eyes for much of the time.

I won't bore you with a full account but in the 5 or so hours we saw many different people in a variety of uniforms, most of whom did a little bit (mostly tests) then went away. Blood tests suggested she might have a slight infection. They gave her a chest x-ray which was fine and talked of testing her urine but dropped this idea, probably because they realised it would not be easy. Blood pressure, pulse etc were all in the normal range from almost the time we got there.

Eventually, they said she could go home but we could contact them if there were any further problems. I was fine with that.

She is not back to normal mobility wise yet but can stand and walk. She's eating normally. The stairs are more of a challenge than usual so we stayed upstairs on the first evening and had to stay downstairs yesterday as she just couldn't get up the stairs.

Such events are always shocking. I know things might get worse again but at the moment I'm fairly hopeful that this might just be a one-off. She has been prescribed antibiotics for the suspected UTI but unfortunately the first med prescribed made her vomit so I'm hoping to get a replacement by this evening.  

Friday, 29 May 2015

Do what works

Online, someone asked how best to help their partner who has dementia. All kinds of approaches are explained and championed. How do you decide what to do for the best?

I would say be pragmatic. Do what works for you and your partner. You have to give it a fair trial of course, no point in giving up the first time it goes wrong.

The most important thing to remember when thinking about all the issues around caring for someone with dementia is 'everybody is different' . People often pay lip-service to the truth of this statement then these same people go on to make sweeping generalisations about people with dementia. We can certainly learn from people in similar situations, but we can't just treat the person we care for exactly as some guru, authority figure or other genuine carer tells us to. Well, we can, but if we do we are setting ourselves up for failure and frustration.

Sunday, 24 May 2015

Carer's dependency

There is a kind of dependency that carers can experience. Just as the people we care for depend on us, so we can come to need them, however much we would like to be able to get away and do just what we want. So even if/when we know they are being looked after, probably well, we are so used to having them in our lives with all the difficulties and, if we're lucky, still some kind of communication and satisfaction that we are, to an extent, coping that it's very difficult to 'forget' about our loved one and we may even start to feel anxious, even if we are doing something we really want to do. The longer I'm away from S the stronger this feeling becomes.

Saturday, 23 May 2015

And another article worth a look

This is an article about recent research into the supposed link between beta amyloid and Alzheimer's, still the predominant focus in the search for dementia drugs that might actually work.

It seems to me to contain some bizarre explanations as to why the researchers' investigations do not produce exactly the results which they have convinced themselves are inevitable.

This is perhaps the best example, but you will see several others if this interests you enough to try to follow the article:

'previous trials of anti-amyloid drugs on people with dementia failed because their brains were already too damaged or because some patients, not screened for amyloid, may not have had Alzheimer’s.'
So I wonder what disease it was that was wrecking the lives of those patients who had been diagnosed with AD but did not screen for amyloid?

Tuesday, 19 May 2015

Some exciting research

This is an interesting article which I found on AlzForum, an excellent if very challenging (to the non-professional), site.

These two paragraphs give the background:

Cognitive reserve was originally defined as the extra protection against cognitive decline afforded to people with greater intellectual enrichment (see Stern et al., 2012). Given the same amount of brain pathology, people with a higher cognitive reserve (often measured as a great number of years of formal education) were found to be less susceptible to cognitive decline than people with a lesser reserve. Viewed from a different angle, others reported that given the same level of cognitive performance, people with higher reserves tended to have more brain pathology, indicating that their mental acuity was somehow shielded from the encroaching pathology (see Nov 2008 news).

However, some recent studies have suggested that cognitive reserves may do something even better—prevent pathology from occurring in the first place. For example, William Jagust’s group at the University of California, Berkeley, reported that AD biomarker signatures in the cerebrospinal fluid developed more slowly in people with higher cognitive reserves, and that ApoE4 carriers with higher cognitive reserves had less Aβ accumulation in their brains (see Lo et al., 2013, and Wirth et al., 2014). However, others have failed to find such a relationship (see Vemuri et al., 2012).

And this is the thought-provoking conclusion of the article:

Yaakov Stern of Columbia University in New York, one of the early proponents of the theory of cognitive reserve, said that he had originally never considered the idea that such reserves could alter brain pathology; rather, they could boost resistance to it. Now, the idea that lifestyle factors such as cognitive stimulation or even exercise could also dynamically influence brain pathology is gaining traction, he said. He added that Okonkwo’s study sample was relatively small and did not parse out the contributions of other factors associated with education. However, he said the results raise the interesting possibility that the people with higher cognitive reserves in the study may be spared not only from elevated CSF biomarkers, but also from the onslaught of dementia.

My own initial thought is that this is a fascinating area of study. If cognitive reserve can either give some protection against cognitive decline or even prevent the brain changes that are associated with dementia that might be great news for those who are fortunate enough to have some cognitive reserve but not much consolation to your average person.

The most interesting finding for me is explained in the passage in red above. Here we have people performing better than their brain pathology would suggest. Forget for the moment the uncertainty about what exactly is responsible for this positive for these people. Once again it seems clear that people with the same degree of 'brain damage' (in the simplistic jargon) perform very differently, i.e. people with the same amount of 'brain damage' can have significantly different levels of cognitive decline. It reminds me very much of the nuns study* and it's something that deserves to be much more widely investigated. 

*I've blogged about this exciting research and you can read these posts by putting 'nuns study' into the search box (top left).

For people coming across my blog for the first time, I should stress that I am certainly not a professional! When I started the blog I did not expect to be delving into such research but it's just too interesting to ignore even if I can't be sure that I've understood it!


Tuesday, 12 May 2015

Visual problems

There was an online discussion I saw where the issue of people with dementia and their problems with vision was discussed. PWD often appear to struggle to see things clearly and, for example, may come to a halt if the colour of the floor changes. Although some people PWD are registered as blind, the problem is perhaps more often to do with the link between the eye and the brain. If this is not working too well the brain cannot properly interpret what the eye is seeing. 

Particularly when they are tired or stressed, even people without dementia can temporarily misinterpret what they are seeing, though usually only for a very short period. I've noticed this effect more as I've got older. This is one more example of the many similarities between PWD and people without.

We're all just people, when you get right down to it.

Tuesday, 28 April 2015

Disempowerment again.

Empowerment-and-disempowerment is the third most read AWD post.

Here's another take on the issue, in a very different situation two and a half years on.

I still believe that it's important to preserve abilities for as long as possible even when it might be easier for us to take over. A current example for me: I've been pre-loading S's spoon and getting her to hold it and feed herself longer than I care to remember. This is incredibly time-consuming and can be very frustrating when she drops the spoon or spins it round so that food drops off. Sometimes towards the end of a meal I feed her the last few spoonfuls and that is a lot easier. But there are now so few things she can do for herself that it seems perverse to stop her doing one of them. It's so easy to disempower someone.

Interestingly, the (very experienced) carer who comes in twice a week always feeds her. As she's generally very good, I put up with this but it makes me even more determined to continue to load the spoon myself when I'm in charge.

Wednesday, 22 April 2015

Message in a Bottle Project


This looks like a useful idea for people living with dementia and their carers. In fact many people might find it interesting as, 'whilst it is focused on the more vulnerable people in our community, anyone can have an accident at home, so this scheme can benefit anyone, including you.'

Thursday, 16 April 2015

New Hope for Alzheimer's Research?

'Between 2002 and 2012, 99.6% of drug studies aimed at preventing, curing or improving Alzheimer's symptoms were either halted or discontinued.'

A staggering quote from this Guardian article:


The author explains how researchers are finally realising that they have made an appalling mistake in concentrating, to the exclusion of almost everything else, on trying to find drugs that would remove beta-amyloid plaques from the brains of people with the disease. This turns out to have been possibly the biggest, most expensive and most pointless wild goose-chase in the history of medical research.

There is also a summary of the recently-reported research which suggests a different approach to treatment or cure which looks promising and even opens up the possibility that lost memories may one day be regained.

A breath of fresh air!

Saturday, 4 April 2015

A very sad lament from a carer

This is the text of a letter that appeared in the Guardian:

Is it true that if re-elected the Tories are considering cuts for carers? I ruined my physical and mental health by being a carer for elderly/infirm parents who were not coping in their council flat and dreaded the thought of a nursing home. I also ruined my financial health. They came to live in my terraced home. I was already a carer for my disabled son, so that made three. Eventually I had to give up my job and career because caring became a 24/7 job. They were with me for 17 years until their death in their 90s but I was never eligible for carer’s allowance. What a mug! Years ago when I was working I heard a businessman saying that he could not accept his elderly mum into his home as “my son, Nigel, needs the 2 spare rooms for his studies”. At the time I thought “how selfish” but years later I was not so sure.If carers get cuts in allowances, do not be a mug like me. Refuse to be a carer. You are important too, so don’t lose your identity. What am I saying? At the age of 88 (89 if I live until November) I’m still the sole carer for my son and, of course, will carry on as long as I can.
Barbara MacArthur

Saturday, 28 March 2015

Carer's Allowance under threat

In the UK, where we still have a vestigial welfare state, there is a paltry means-tested Carer's Allowance.

Now it is under threat.  But it has been shown that the contribution of all the carers saves the country a staggering £119bn.

There's a comment on this from the excellent charity Carers UK here.

Sunday, 8 March 2015

Parkinson's Update

I've posted previously about my wife's Parkinson's symptoms.  You can find these posts by putting 'Parkinson's' into the search box (top left).

We last saw the Parkinson's doctor when my wife was up to three-quarters of a normal daily dose of Sinemet (Co-caroldopa).  We had tried going a bit further but upping the first dose of the day caused horrible vomiting. He said it probably was the Sinemet and that anti-emetics might help. I explained that because of S's past history, I was a bit wary about this and he was quite happy for me to continue with three-quarters for a while though he said that, in time, the dose would have to be raised to get some benefit and we might need the anti-emetic then,

He also told us he was retiring and wouldn't be seeing us again. I was disappointed about this - he's good. He said he would refer us to the local 'Day Hospital' where a multi-disciplinary team assesses and assists people with PD/Parkinsonism.

We got an appointment there quite promptly.  There was a fairly thorough assessment, though some repetition, and we had a conversation with the doctor who suggested that another way to deal with the drug side-effect problem was to keep to the same individual dose but take it 4 times a day instead of 3, thereby avoiding larger individual doses. We have gradually raised the dose, without any ill-effects and some improvement in flexibility and alertness.

I was a bit disappointed by the physio aspect. They gave us a handout which has some useful-looking ideas but most of which would probably be beyond someone with dementia. I looked online for exercises and this looks good, though again some things would not be possible.

I'm still searching for appropriate exercises that can be done for/with someone.

Wednesday, 4 March 2015

What does it feel like to die?

Living in the dementia world you cannot escape thinking about death. Regularly, you read online about the end if life experience of people with dementia and their carers.  Similarly, people you meet at the various activities you attend disappear from time to time and months or sometimes weeks later we hear of their passing.

And everyone who cares for a person with dementia knows that they are likely to have to face the death of the person they are keeping alive, unless their own death comes first.

I came across this interesting article which seems to offer some comfort for those who believe in life after death but also to those who would find the inevitability of their own death easier to accept if there was a fair chance that it could be painless, peaceful and, even, uplifting.

Sunday, 22 February 2015

'I hate Alzheimer's...'


(The person who posted this powerful and moving statement online is happy for it to be copied.)

I hate Alzheimer's because, many years ago, it barged its way into my dear wife's life and began the ruthless, agonisingly slow process of squeezing the life force out of her.

I hate Alzheimer's because, not only did it take away the pen with which she could write new memories but, with cold-blooded efficiency, it also began the process of erasing the memories she had already written.

I hate Alzheimer's because, even as our two sons and I hugged each other, sobbing at Brenda's bedside after she had passed away, it brazenly stood there, hands held aloft saying "Don't blame me! It wasn't me that killed her - it was the pneumonia or heart problems or loss of swallow-reflex" and yet it was the Alzheimer's as surely as any drug-pusher or illegal gun-supplier is responsible. It may not have pulled the trigger but it certainly provided the weapon.

I hate Alzheimer's because, if I had bought a punchbag on which to take out my frustration over the many years of Brenda's decline and even if I had knocked seven bells out of it at regular intervals and even if I had kicked and clawed and battered it again and again and again, today it would still look as unscathed and unbothered as the day I bought it. Alzheimer's would have simply shrugged it off with a cocky "Is that all you've got?"

But, you know, Alzheimer's, we are going to get you. Every penny we raise, every test we do, every trial we endure, every hopeful lead we see falter and fail takes us one day nearer to making you a hideous nightmare of the past and you will no longer cast that awful shadow over mankind. I truly believe that with all my heart and we will get you.

I promise.

Tuesday, 17 February 2015

Treasure your moments

I came across these words online:

Love will get you through

I say enjoy what time you have left together..... I was diagnosed 2 weeks before christmas gone with vascular im 53, met the love of my life at 51 we have had just 2 sweet years together but no in our hearts we have many more and without having to say a single word to each other we know our love will get us through. Its not all doom and gloom I realise now its not the years that count but the moments. 


We should all try to treasure our moments.

Monday, 2 February 2015

40,000 page views

This blog has just notched up page view number 40,000.

Many thanks, and greetings, to all readers (and to the 39 members).

Although over 50% of the pages were viewed in the UK or the USA, the blog has also been visited by people from many other nations around the world.

We're all in this together,

No more 'stages'?

I've posted before about the alleged 'stages of dementia' and how dubious they are:

http://adventureswithdementia.blogspot.co.uk/2013/06/the-stages-of-dementia.html

I've just read online a carer's report that when she asked a medic what stage her mum had reached he told her that they didn't do stages anymore 'because everyone's different'.

Perhaps the message is finally getting through.  Not before time.

Monday, 19 January 2015

Walking Indoors

For years after S's problems first started, and after I started working part-time, we tried to get out and walk as much as possible. At best we would walk 8-10 miles some weeks.

As things got more difficult, I aimed for at least 5 miles a week and sometimes managed 7. When S went through our most difficult months so far, which the early part of this blog describes, we started to walk again and still managed at least 5 miles a week. I'm convinced that this helped her recovery from the 'bad time' and that all the walking we have done must also have contributed to the relatively slow progression of the disease.

During 2014 we started to find it becoming more difficult to achieve the 5 miles, though we usually managed it. The various fixed things in our weekly schedule - singing, reflexology, care worker visits etc - all useful in themselves, didn't actually help with the walking. When we did have 'slots' when we could have walked the combination of earlier nightfall and autumn/winter weather made me look for alternatives.

We are lucky in that we live in a fairly spacious Victorian semi. I realised that, starting from the front doormat, we could walk 11 yards into the middle of the back room. 11 is useful in that it's easily multiplied to 220 or 440.

Since then, the target is three-quarters of a mile every day. Some days, it can all be outside. Other days when, for various reasons, we can't walk much outside, we make the distance up by walking indoors.

Amongst the various benefits of our walking indoors are nice level and easy floor surfaces (much safer than almost any pavement or path, in the UK at least), much less danger of potentially harmful falls, the ability to sit down and rest whenever that is needed and an added bonus is the regular turning at the end of each 'leg' - excellent exercise.

I feel much happier now that I know that, at least for the time being, we can be fairly sure of achieving the weekly target.

There are probably people reading this who wonder why it took me so long to realise that indoor walking had a contribution to make.

P.S. The cat doesn't like it at all. Can't understand what we're doing and tries to get in the way.

Friday, 16 January 2015

Young Onset Dementia UK

This looks like a useful website:

http://www.youngdementiauk.org/

I'm not saying this because they have mentioned this blog in a list of relevant blogs under 'Resources', you understand (but I am duly appreciative).

I've not yet had time to explore the site properly but there are a good many links and there seems to be a lot of information.


Sunday, 4 January 2015

Another study reports cognitive decline with tamoxifen

I've posted about the breast cancer drug Tamoxifen before.  More than one study has suggested that this drug may cause or contribute to cognitive decline.

These are links to earlier posts on this topic:

http://adventureswithdementia.blogspot.co.uk/2011/10/possible-causescontributory-factors-2_16.html

http://adventureswithdementia.blogspot.co.uk/2011/11/more-on-tamoxifen.html

http://adventureswithdementia.blogspot.co.uk/2012/06/tamoxifen-again.html

This link is to a recent report on research which again suggests that Tamoxifen may be responsible for cognitive decline in some women:

www.examiner.com/article/another-study-reports-cognitive-decline-with-tamoxifen