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.