National Dementia Awareness Week

Today marks the start of National Dementia Awareness Week the aim of which is to get people talking about Dementia and Alzheimers which directly affects over 800,000 people in the country today, with many more people likely to develop it as the population ages.  As Beth Britton describes most eloquently on her blog, dementia casts a net throughout a network of everyone connected both currently and throughout their lives, of the person living with dementia.  

We all have our own fears about developing this condition and shy away from obtaining a diagnosis, especially early on when there may be help available.  You may be aware that my DH and I have direct experience of living with dementia as both our mothers' developed the condition.  In both cases I think it's safe to say that the condition was well advanced before we, as carers, joined all the dots and realised what was going on.  My mother's dementia seemed to hit us out of the blue when she suffered a stroke but when we had time to look back and think about things I realised that things had not been right for several years. Mum had been gamely coping with memory problems and difficulties in communicating and understanding and we had not recognised the signs.  Ironic since we had just gone through more than 5 years with my mother-in-law's experiences of Alzheimers.  You would think we would have noticed and helped mum ask the right questions at the doctor's but sadly distance prevented us making the connections that might have got her help sooner.  Our heads were in the sand.

Beth Britton's blog is excellent and she speaks with great candour and honesty about her experiences and also provides practical thoughts on living with dementia.  If you do nothing else check out my links and be aware.  Alzheimers is a frightening condition and we all shy away from facing it but there is hope for managing life with dementia and there is still room for smiles and laughter.

Alzheimer's Awareness Week

This week from 20-26 May is Alzheimer's Awareness Week in the UK.  Alzheimer's is the most common of a group of diseases that cause changes in the brain, followed closely by vascular dementia.  My mother-in-law had Alzheimer's for several years before she died and this awful disease laid waste to her brain with devastating consequences.  After a stroke in 2010 my own Mum, as I have spoken of here, now lives with vascular dementia and we have to watch and support her as she struggles to continue to make sense of the world around her. 

By 2021 there are predicted to be over one million people living with Dementia in the UK (currently there are 800,000).  The figures for the United States are even more frightening where currently 5.6 million people are living with the disease. 

The positive message is that life can still be meaningful living with this disease and my Mum still keeps her sense of humour and enjoys her time with her family, especially with the newer members :-)  

I have to admit that I sometimes think of the dementia before I think of the person and this is a good time to remember that my lovely Mum is still in there and is now sweeter than ever in her confusion.  Happily she still has her sense of humour but it would be lovely if she still had her independence.

Beth, whose father suffered from Alzheimers for 19 years from when she was 12 years old, has just started a blog to continue raising awareness of this terrible disease so please go and give her your support.  

PS The little boy in the photograph is my brother and the girl is, of course, me.  We'd have been aged about 5,(me), and 4 or thereabouts.

I thought

it was about time I got back on here and gave an update on what has been happening since my last blog.  We ended up rushing off down to Essex because my Mum was starting to not know people, including me over the phone, and I wanted to see her before she forgot us altogether.  Initially when we saw her in hospital our worst fears were well founded as she didn't know me but slowly realisation came to her.  As a result of our arriving in Essex the hospital decided Mum was fit for discharge home!!  I could not believe that a lady of 85 with almost total confusion, not recognising her sister-in-law or her daughter, who had already taken an overdose of Warfarin was going to be sent back to the same situation that was making her increasingly confused and which was putting her at risk!  Fortunately my fears were acknowledged and the doctors decided that, with a low MMSE she needed 24 hour care after all.  The upshot is that Mum is now in a care home in Essex but will shortly be coming up to a care home near us.  I dread to think what would have to happen to someone without a family to stand up for them before they receive the appropriate care.

We stayed in Essex for a few days organising things for Mum's move and then came home to find somewhere for her to be cared for here. I had no idea how complicated this whole process is.  First, you have to find somewhere suitable and as Mum has dementia our town has less options able to deal with her particular needs so homes that I would have liked to choose are not available to us.  Fortunately Lincolnshire does have a good support service to help you find a suitable care solution which comes under the umbrella of Care Choices.  The most valuable piece of advice I have been given was from the hospital social worker who told us to take things one step at a time.  Don't rush, take your time.  Also, be sure to check out the Care Quality Commission report on each home and look out for any safeguards, which, despite the name, mean there may have been a problem. 

It feels as though it has taken months but in fact Mum has been in care less than 2 weeks and we have been successful in finding somewhere for her here, I just hope she likes it.  It is a home that I have known about for years and the atmosphere when you walk in is cosy and friendly.  The residents looked happy and relaxed and the manageress had plenty of time to answer all our questions.  We just need Mum to feel at home now when she arrives.    She will be able to have some of her own furniture in her room, which is surprisingly large and which overlooks the Parish Church.  She is telling everyone that she is looking forward to living near us so I hope that holds true when she gets here.   Perhaps unsurprisingly now that she is in a safe and stable environment her confusion has lessened but she still doesn't know who her sister in law is, she just knows she's a lovely lady.  I have had a couple of telephone conversations with her and she is calling me darling so hopefully that means she will know me when my brother and I go to fetch her in a few days.  

Once Mum is safely settled here the real work starts sorting out all the finances and that is going to take time.  Again I have found several organisations that offer help and guidance, most notably Care Aware who have information bulletins to download and offer help from local advisors which I am almost certainly going to take up.  I feel I am entering a minefield and am constantly having to remind myself to take my time.  I am sure that AgeUk will also be an invaluable source of advice.

The worst of all this, apart from the loss of the beautiful personality that has always been my Mum, is that crucial decisions have to be made at a time when you feel at your absolute lowest, exhausted from caring for a parent who has suddenly changed and is struggling themselves to understand what has happened to them.  The responsibility is huge and very frightening and eventually every small effort drains what little energy you have. I am very lucky to have a very supportive husband through all this.

Tomorrow we are going back to the care home to finalise the paper work and find out the arrangements for taking over the room.  Then we start a busy weekend of getting the room ready, naming Mum's clothes so they don't get lost in the laundry, making up photo frames with photos of people special to Mum and finally fetching her up to her new home.  Fortunately, although she is very confused, she does understand what is about to happen and although she will miss her friends she does want to see more of us so please keep positive thoughts for us and her in your minds.  Spring and a new awakening is happening all around us and I hope that some small awakening will come to Mum when she sees more of me and makes some new friends here.