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 Sue'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 monents

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:

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 Sue'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 Sue 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:

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:

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

Tuesday, 30 December 2014

A Christmas hitch

The family party we hosted on Christmas Eve (to celebrate our 10th wedding anniversary and the fact that S had reached 65 and I had my 70th during the year) went pretty well. Then we spent quality time with S's family (4 generations including her 3 mostly wonderful grandchildren) on Christmas day.

On Boxing Day, they were due to come and collect S to take her across to an old family friend who was having a party and I would have had time to myself to finish clearing up after the party, amongst other things. Then it turned out that S's 2 year-old granddaughter had chicken pox! After thinking it through and trying to check the facts, it seemed foolhardy to risk any further contact with the child whilst she was infectious. Dementia is hard enough without the added complication of shingles.  One consolation was that when I told Sue there was no indication that it bothered her.

She had of course been in contact during the previous two days so the decision to keep her at home and forego the time to myself was not entirely logical. Even worse, one of my online friends referred me to the NHS website where there is a categorical statement: 'It is not possible to catch shingles from someone else with the condition, or from someone with chickenpox.'  (Apparently the reason why the Herpes Zoster virus sometimes becomes re-activated and causes shingles is unknown.)

So the only risk would have been catching chicken pox again (S had had it as a child) and this is pretty unusual.

Anyway, we were able to enjoy the youngest granddaughter's birthday party on the 27th.  

It's certainly encouraging that several members of the family commented on S's increased awareness, from time to time, of what is going on around her and I believe this is probably due to the medication (Co-careldopa) that she has been prescribed for the Parkinson's symptoms.

Sunday, 14 December 2014

Donating your brain

Whether they believe in life after death or not, most people do not think of the body as having much use to anyone after death, which is why it is usually burnt or buried.

For many years now the principle of removing organs for donation where appropriate has been generally accepted and, in many cases, this can lead to other people's lives being saved.

You cannot, yet, donate your brain for potential transplant  -  and it is not hard to understand the problems, beyond the technical, that would be involved with that.

But you can still donate your brain, and your gift might help in the understanding of brain disease which could, eventually lead to potential treatments and cures. Neither you nor your relatives can use your brain after you and it are dead so that it could be put to use in this way is surely worth thinking about.

I hadn't thought about it at all until dementia came into my life.  I still don't think about it much but I'm starting to consider donating my own brain.  Even if it is not affected by dementia  -  and 20% of people in their late 80s will develop dementia  -  it could still be of use to researchers.

You can find out more here:

There's even a Brains for Dementia Research Centre.