Thursday, 13 March 2014

Birthday Blues II - the sequel!!

Picture from nothingbutuseless.BlogSpot.com
 
Yesterday was my birthday.  I was 49.  When I caught a glimpse of myself in the mirror yesterday morning, I looked every one of my 49 years and some!  Worse still, it was my Dad's face I saw looking back at me!!  Don't get me wrong, there was nothing wrong with my Dad's face - on him!  I just don't want to see it when I look in the mirror!!  I thought to myself, 'If this is what three months of full-time caring does to me, God help me after three years!!'

Mum's care manager had told Mum about my birthday the day before and had given her a note to remind her to buy me a card when we went shopping.  In the event, Mum bought me three cards and insisted on me opening them almost as soon as we got home.  Two of the cards were for 'daughter' and the other was for 'someone special'.  Two of them were blank.  On the third, Mum had attempted to write 'thank you for being with me' and I took some comfort from that, thinking that my friend, Ted, was right in his response to my last post when he assured me that my 'Mom' (he's American!) was still in there somewhere.

By the time we got up yesterday morning, Mum had completely forgotten it was my birthday.  Mark was working away, so it was just the two of us in the house.  Mum's carers came as usual, and then we spent the rest of the day running errands and keeping appointments, finishing up at the doctor's surgery at 5.20pm for Mum to have an ECG, ahead of her starting on a new drug for her Alzheimer's.  She was in a miserable mood all day and complained about everything.  (I'm hoping that some of this is due to a reduction in her dose of anti-depressant medication before she changes to a new one.  If so, then I can expect some improvement in her mood - fingers crossed!)  No mention was made of it being my birthday.

At home in the evening, after cooking dinner and clearing away, Mum was sleeping in the chair and I was waiting for Mark to come home.  To be honest, I was feeling somewhat sorry for myself.  I hate feeling that way - I'm not a self-pitying person!!  I decided I needed to give myself a kick up the behind and remind myself of how lucky I am.  I have the best husband in the world (sorry, ladies, but it's true!!), I have my health, and I received so many wonderful birthday messages from friends around the world and here in the UK.  Reading those greetings took me back to places we've lived - Turkey, France, Russia, Italy, Vietnam - so many happy memories!  And also, to places we've yet to visit - India, Australia, Brazil ....

I have a lot to be thankful for.  If any future posts on this blog get too maudlin, please feel free to remind me of that!!

Monday, 10 March 2014

Birthday blues!

It was Mum's birthday yesterday.  She was 71.  The previous two or three days had been particularly difficult, but I was determined to put on a brave face and try to make the day special for her.

The day started very early with me getting up at the crack of dawn to make some sausage rolls and a birthday cake.  By the time Mum got up, both were well on the way.  I gave her her presents and all the cards that had arrived during the week.  She had a good selection, many of them from old friends who live a good distance away.  As she was opening them, I noticed a lovely hand-written letter in one of the envelopes.  Later, as I was displaying the cards in the lounge, I asked Mum about the letter as I couldn't find it.  "Oh, I put it in the bin", was her response!  When I asked her why, she said it was too long and she couldn't be bothered to read it.  I went to try and retrieve it from the bin, but she'd done such a good job of tearing it into tiny pieces that it was impossible to put back together again.  My thoughts went out to the kind-hearted person who'd gone to the trouble of writing to Mum - if she ever reads this and recognises herself as the author, I only hope that she realises it's the Alzheimer's that makes Mum seem so ungrateful!

Amongst other things, Mark and I had bought Mum a bottle of Rive Gauche, her favourite perfume.  Her reaction?  "Well, at least you got that right, Andrea - I ran out a few weeks ago."  If I was hoping for a word of thanks, this is as close as I was going to get!

After Mum's carers had been, she and I went to church as is her wont (it's not mine, but perhaps that's a story for another day!).  She received more cards and, after the service, we shared the sausage rolls and cake with the congregation.  It was a beautiful, sunny day and everyone was in good spirits, happy to stay and chat for a while, rather than dash off, as is often the case when the weather is not so good and the church is cold.

Mum loves flowers, particularly orchids, as demonstrated by the large display of them in the conservatory.  I had read about an orchid show being held yesterday in a hotel not too far from home.  So, after church, we went to have a look around.  There were more varieties of orchid than I have ever seen in one place (in the UK, anyway - there were probably more in the botanic gardens in Singapore or Thailand!), and Mum seemed to enjoy looking around.  She chose an unusual mustardy-coloured specimen to add to her collection and I was happy to buy it for her.

We then went on to a restaurant in town where we met Mum's sister and had a pleasant lunch together.  The food was good, Mum and I shared a bottle of wine (Mark was driving!), and the afternoon was an apparent success.

We arrived home at about 5pm.  As we came in the house, the phone was ringing.  Mum answered it.  It was a very old family friend calling to wish Mum a happy birthday.  The conversation was short, but I heard Mum saying that she'd had a lovely day and briefly explaining what we'd done.  It made me feel good, thinking that, for once, I'd got something right and Mum was happy.

Imagine my surprise, then, only about half an hour later when I found Mum sitting in the lounge looking as miserable as sin.  When I asked her what was wrong, she said, "Well, there are good days and bad days, and today just happens to have been a horrible day!"

I felt like I'd be kicked in the stomach!  I went away and had a quiet cry, trying to remind myself that it's not her, it's the disease, but, boy is it tough sometimes!!

Friday, 7 March 2014

Joining a support group

Being a carer is a very isolating pastime!  This was a conclusion I came to within a very short time of taking on the role.  So, one of the first things I did was join a support group.  I found out about the existence of such groups during my Carer's Assessment.  After doing some research, I discovered that my local group is organised by The Alzheimer's Society.  It is intended for those with dementia and their carers and it meets in Gainsborough on the first Wednesday of every month. 
 

I've never had the need to join any such group before and was rather nervous when I first went along.  The thought of entering a room full of strangers and having that 'My name is Andrea and I'm a carer' moment was nerve-wracking.  In reality, it wasn't like that at all.  The group is a very friendly get-together of carers and people with dementia, led by two dedicated volunteers, both of whom are retired health professionals who, during their working lives, specialised in mental health.

My main motivation for attending the group was to get some answers.  As a new carer, I'm floundering and am always looking for definitive ways to do things.  The fact is that there are no real answers!  The best you can hope for is advice and sharing of experiences and that's the benefit of joining a group.

The first time I went, I went alone.  Everyone was very welcoming.  I was the youngest in the room by quite a long way, but, regardless of age, we were brought together by common experience.  Two representatives of Age UK were there to tell us about local services and I picked up loads of useful information.  I was also particularly struck by talking to one gentleman who cares for his wife.  She was there too.  He explained to me that she had been diagnosed with early onset Alzheimer's eight years previously at the age of just 55.  He was keen to tell me that his wife had been an English teacher and so it was especially upsetting that now she was unable to read and write and was barely able to string a few words together.  The devastating effect of the disease on both of their lives was clear to see, yet he was outwardly positive and cheerful and very encouraging towards me.  The mutual support he so clearly felt from attending the group was a feeling that I shared from the outset. 

As I left that first meeting, the organiser, Jean, encouraged me to come back and 'Bring your Mum with you next time'.  I was sure I'd be back, but I was very dubious that I'd be able to get Mum there, seeing as she is in absolute denial about having anything wrong with her at all!

In the event, we did both attend this month's meeting!  I told Mum where I was going, who was organising it, and what it was for, and asked her if she wanted to come with me.  She seemed baffled that there was any doubt that she would be joining me! 

So, we went and, despite my reservations, Mum enjoyed it and is keen to go back next time.  I don't really think she fully understood what it was all about and I certainly don't think she would put herself in the same category as others who were there, but she had a good time!  She must have done ,because she didn't start asking to leave until twenty minutes before the two-hour meeting was due to finish.  This is very unusual these days as Mum invariably wants to leave almost as soon as we have arrived somewhere!

On this occasion, the organisers had invited a manicurist along, so my Mum got her nails done.  She was very impressed by the pampering, especially as it was free!!  There was also a lady at the meeting who Mum knew very well, so she was happy to chat to her.  With all of that, endless cups of coffee and biscuits, and winning a prize in the raffle, it was definitely a positive experience for Mum.  As it was for me.  Whether Mum realises it or not, for both of us, the pressure is off at these meetings, because everyone understands.  For me, I'm not on edge, worrying about explaining Mum's apparent rudeness or strange behaviour, and for Mum, she's not being asked questions she can't answer or being expected to make decisions she struggles with.

I salute the volunteers who keep these groups running and I urge anyone in a similar position to me to join their local group!

 

Carer's assessment

Carer's assessment courtesy of carers-supportcdt.org.uk
When Mum first came to the attention of the Adult Social Care services in Lincolnshire following her diagnosis last August, I was contacted by the Carers' Team asking me if I would like a Carer's Assessment.  At the time, I was about to move to Russia to start a new job and didn't really see myself as a carer.  However, it was explained to me that, seeing as I had power of attorney for Mum and was looking after all of her financial affairs, I was indeed a carer, even if it was from a distance.  On that basis, I accepted the offer of an assessment and was told there was a waiting list and someone would be in touch with me in a few weeks.

By the time I was contacted again, my situation had changed and my husband and I had made the move back to the UK to be with Mum.  I was now really a carer, even though, at that early stage, the full ramifications of the role hadn't fully struck me.

My carer's assessment was done over the course of two phone calls and took about two hours in total.  During the process, I came to understand more completely just what I had taken on.  Through the questions I was asked, I was made to reflect on the effect caring for my Mum was having, or could potentially have, on me.  It was an eye-opening experience and I really appreciated the opportunity I was being given.  It made me consider things that hadn't crossed my mind before and gave me a sense of worth at the valuable role I was undertaking.  At the end of the assessment, I was more aware of what help could be available for me.  I was also given a financial award - a one-off payment of £203 to be used for leisure purposes - hobby courses, swimming sessions, etc.  I had no idea that such a fund was available.  It's not a huge amount of money, but, again, it helps to give the carer a sense that what they're doing is noted and valued.

I would urge any carer in the UK to ask if a carer's assessment is available in their area and, if it is, to have one and to accept any help they're offered!

You can find more information here.

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.