Friday, 28 February 2014

What were the early signs that Mum had Alzheimer's?

I think it's important to write about the history of Mum's disease because, had we known a bit more, we might have got her diagnosed earlier.  Whilst this wouldn't have changed the inevitable final outcome, it may have given her a slightly better quality of life for a bit longer.  It is clear that every Alzheimer's patient is different, but, perhaps, by describing our experience, it might trigger warning bells in someone reading today.

We first started noticing changes in Mum a few years ago.  She became more forgetful, but, more worryingly, her personality seemed to change.  She was angry a lot of the time and totally intolerant of the shortcomings she perceived in others.  She made her displeasure known and, as a result, alienated a lot of people with her apparent rudeness.  We had a few toe-curlingly embarrassing moments when we found ourselves apologising for Mum's behaviour.  I think we really began to realise there was something seriously wrong though when she was horrible to her grandchildren who we knew she loved dearly! 

This change in manner along with the forgetfulness and some confusion over times and dates finally persuaded my Dad to talk to their GP about our concerns.  Even at this stage, Mum was in total denial that there was any kind of problem - in her mind, other people were always to blame for every situation.  So, Dad spoke to the doctor.  This was in July 2011.  She suggested that Mum's symptoms were classic signs of stress, most probably brought on by worry about my Dad (he had been ill for many years by this stage) and about her sister (who is disabled and whose husband was terminally ill in hospital at the time).  The doctor advised us to keep an eye on Mum and go back to see her in three months if there was no improvement.  We weren't totally convinced by her opinion, but went along with it.

Then events overtook us because my Dad died very suddenly (from an aneurism) in October 2011 and, I have to say, that our worries about Mum were put to the back of our minds in the following weeks as we sorted things out.  During this time, Mum probably didn't react in the way you would expect from someone who has just lost their life partner, but, then again, there's no rule book governing grief, so we overlooked things which might have made us think twice at other times.

Over the next few months, Mum became increasingly forgetful and confused over times and dates.  When the Diamond Jubilee celebrations were happening in London in June 2012, Mum, an ardent royalist, wanted to be there.  I arranged for her to stay with a family member for a few days.  As the time drew nearer, it became clear that Mum would need a lot more help, both with getting to London by train and with getting around whilst she was there.  I spoke to our cousin about the situation and she agreed to meet Mum and keep a close eye on her for the duration of her visit.  After Mum had gone home, Janet contacted me to say she was very glad I'd warned her about Mum - otherwise she'd have been extremely concerned!  She went on to say that Mum's behaviour was very similar to that of her own Mum who had dementia.  This was probably the first time that I'd really faced the possibility that this was what was affecting Mum.

On my next visit to the UK the following month, I went to see the GP with Mum and told her of my concerns.  She diagnosed depression.  I questioned her because I didn't associate Mum's confusion and memory loss with depression, but she assured me that it was commonplace.  I went away and did some reading and convinced myself that the diagnosis was correct.  It was a relief to think that Mum didn't have dementia and I so wanted to believe it!!  I've recently discovered that many dementia patients are first diagnosed with depression or anxiety before the real diagnosis is reached!

So, Mum was prescribed anti-depressants and we warned that her behaviour would get worse before it got better.  That bit was certainly true!!  We took her on holiday with us and had a pretty awful time!  In the following weeks, however, Mum seemed to improve.  She wasn't as angry or as tearful as before and she seemed to be slightly less confused.  We clung to the hope that things were on the up!  This period lasted for only about three weeks, however, before I noticed her slipping back.  I was back in Vietnam at this stage and having very long and increasingly exhausting phone conversations with her every day.  I suspected that she wasn't taking her tablets and so it proved.  I got in touch with her GP who increased the dose of anti-depressants and declared her fit to travel to us.  She was sure an extended holiday in Vietnam would do her the world of good!

My husband flew to the UK in January 2013 to bring her back to Vietnam.  It was during her five weeks with us that I finally knew for certain that we were dealing with something other than depression.  Being with her every day, I couldn't deny it any longer.  There were many clues and incidents during her stay with us.  Some of them were quite amusing.  For example, no matter how many times I told her, she couldn't accept that I was in charge of my department at the university I was working at.  Much to the amusement of some of my teachers, during a visit to my work, she asked every man in a shirt and tie if he was my boss!! 

But I clearly remember the one sobering moment when it hit me just how bad Mum's condition was becoming.  We were in a bar in Saigon.  Mum had just bought a couple of postcards from the shop next door.  The lady had put them in a clear plastic bag.  It wasn't sealed.  Sitting at a table outside, Mum tried to get the postcards out of the bag.  She couldn't do it.  It wasn't a case of the bag being stuck together and her struggling to open it.  It was that she didn't know how to attempt it.  I could see it in her eyes.  She turned the bag over and over in her hands and then pushed it around the table, but it was clear that she had no idea how to get to the cards.  It was a very scary moment!

Back in the UK, Mum struggled to cope.  As I said before, dates and times were a real problem.  We started to get her the help she so clearly needed.  By the time I travelled to the UK a few weeks later, Mum had had a CT scan and an MRI.  She'd also had some preliminary cognitive tests.  I went with her to get the results.  It was then that we had the diagnosis of dementia finally confirmed.  The GP (a new one by now) told me that she didn't understand how Mum was managing to function independently, having achieved such a low score in the cognitive tests.  This was August 1st, 2013.

Armed with the diagnosis, we set about getting some care in place.  We left her on September 20th, confident that we had the necessary measures in place to keep her safe and adequately looked after.  However, Mum's condition deteriorated very quickly, post-diagnosis, and, by the time we came for our Christmas visit, it was clear that she could no longer remain alone in her home, at least not without considerably more care, care that we couldn't afford to pay for. 

Hence, our decision to come back!

www.alzheimersblog.org
 

 

Thursday, 27 February 2014

Why did I choose this title for my new blog?

I am an EFL (English as a foreign language) teacher by profession.  My husband and I sold everything we owned and left the UK ten years ago.  Since then, we have travelled the world and enjoyed every minute of it!  I've taught in France, Turkey, Italy, Vietnam and, most recently, the Russian Federation.  We have met countless people and forged friendships which I hope will last a lifetime.  I have also built up a huge circle of 'virtual friends' in my PLN (personal learning network).  Perhaps some would say that we have led selfish lives.  As I explain in this post, we never wanted children, but now, through circumstance, I find myself in the role of parent - to my own Mum.  Hence, the first part of the blog title.

And the second?  Well, I toyed with lots of adjectives to describe what sort of carer I am .....

Reluctant - kind of, but not really.  Whilst I would never have chosen the role (who would??), once it became apparent that there was little choice, I accepted it without hesitation.

Na├»ve - definitely!!  I had no idea what I was letting myself in for!  Discussions with Mum's care manager had led me to believe I could pick and choose which aspects of Mum's care I took on, whilst all the time remaining, primarily, her daughter.  Not so!  Yes, Mum has professional carers who come in twice a day to help with washing, dressing and medications - all the personal aspects of care that I don't want to be involved in - but Mum's needs aren't limited to those two twenty-minute slots!  What happens for the other 23 hours 20 minutes?!  Also, I didn't know how demanding dementia makes a person.  It's a very selfish illness with the sufferer quickly losing any sense of empathy or sympathy for others.

Resentful - sometimes!  I really miss my job.  I don't particularly like living in the UK.  So, yes, I do feel resentful from time to time.  I try very hard to aim that resentment at the disease not the sufferer, though!

Impatient - often!  I'm trying not to be, but there's been such a seismic shift in what Mum is able to do that I do find myself expecting her to respond to seemingly simple requests and then getting worked up when she can't do them.

Novice - absolutely!!  There's so much to learn.  I'm hoping that living with dementia, as well as talking to others and reading about it, will help me get over the 'novice' stage quite quickly.  I hate the feeling of ignorance I have and the lamenting of my own stupidity at the mistakes I'm making.

Happy - contented, fulfilled, or any of those other positive adjectives - absolutely not!!  I've yet to find a way through this minefield of caring and get some joy back in my life.  I'm working on it, though!!  :-)

.... which led me to imperfect!  This seemed to sum up where I am, and where I'm likely to remain!  I'm getting things wrong (very wrong at times!) and am probably going to continue to do so, but I'm trying to find a way through.


Courtesy of Brainline.org
 


 

First post - why start a new blog?


I've been blogging for a number of years, mainly about teaching and travelling.  You can read my blog here.  Now, my circumstances have changed and I find myself living back in the UK for the first time in a decade.  I've taken on the role of main carer to my Mum who has Alzheimer's disease. 

It's not easy.  I have no previous experience of anyone living with this terrible disease.  It's a steep learning curve and I'm making lots of mistakes, but it struck me that I can't be the only one in this situation and, by writing about my experiences, I hope to connect with others and share information and advice.

It's been a difficult decision to 'go public'.  Mum has always been a very private person and, even now, as is often the way with dementia sufferers, does not accept that there is anything wrong.  She would be mortified if she thought I was discussing her or her disease with strangers.  However, I feel it's important to write about what's happening - I wish I had found more blogs written by people living with Alzheimer's when I was researching it.  Few people who read this blog will know me personally and even fewer will know my Mum.  I won't be publishing any photos of her.  Everything I write will be about the disease and will not be intended as a criticism of my Mum as a person.  It will be more about self-reflection - questioning how best to help Mum and how to avoid the pitfalls I keep falling into.

I hope, through this blog, to 'meet' fellow carers and to learn how to live with dementia.  Please feel free to comment on anything that I write.