Advice To Carers/Helpful Techniques

There are many articles on the internet and in newspapers that claim to help Alzheimer's Disease (AD) sufferers. While most of these may help due to the fact that they involve brain activity, I have found that the activities themselves can be confusing to people with AD. For example, I have read that playing the Nintendo Wii may help AD sufferers, but when trying this technique with my father, as I think may be the case with many older people (not solely AD sufferers), he could not grasp the technicalities of the Wii, which lead to him being frustrated and therefore even more confused. I am not saying that the Wii will not help others, but it certainly did not help my Dad. In addition, I have seen that many 'Brain training' games have been outlined as being beneficial to AD sufferers, however, due to the technical nature of these games, this is another technique I would not suggest. And if people were planning in using these techniques, I would say the earlier the better, before the disease progresses much further. In this post I plan to tell you about various things that have seemed to help my Dad, as well as a few pieces of advice to carers.

In the early stages of my father's AD, after he had lost his job, he was advised by the nurses at the local hospital to keep a diary in order to add some structure to his day and help his mind focus on something. I recently found this diary and read it (as you can imagine it was a very emotional moment for me). When reading this diary I realised that my dad's cognitive functioning was of a much higher level than I would've imagined at the time. Leading to my first point of advice: Do not 'write them off'. I sometimes feel that due to the diagnosis, my relationship with my father suddenly took a reversal and I was now the one acting as the care-giver. However, when I read this diary I was distraught to find that, at a time where I thought he was unable to do many things, he was infact more than capable. This has been furthered reinforced when I have seen him make cups of tea etc (something which he always has done for him now) thus bringing me to my second point: See what they can do for themselves before trying to help them with every single thing. Once you help an AD sufferer with every little task, I feel that they will settle into a routine where they 'get used' to people waiting on them, leading to dependence etc. In my opinion, keeping a diary was a very helpful technique for my Dad.

Furthermore, in the pages of the diary it seemed very obvious that my Dad loved spending time with the dog. He often wrote "me and Oscar" (Oscar being our dog's name) as opposed to writing just about himself, suggesting that he found comfort due to having a companion whilst I was at school/my Mum was at work, even if the companion was not human. As we now know how much my Dad values the dog, we often go for walks and this seems to be a very effective way of calming him down. There have been numerous times when he has been in a bad mood (as seen in many AD sufferers) so we have went out for a walk with the dog, for maybe even only 10 minutes and when we have returned home all has been fine! Which I think shows how easily an AD sufferer can switch between moods!

I think that an ability to induce calm and a very high level patience are two extremely important aspects of caring. A way of inducing calm that we have found very useful in my house is music. Loud noises are definitely something to avoid! However, we have found that playing music (particularly music that my dad listened to pre-diagnosis, on occasion my father has cried when listening to his old favourite songs!) has been very effective. We recently bought a CD walkman for him so that he could play his old CDs and now he can't get enough of it! He always asks for more! However, there have been some problems - difficulty with understanding what was happening when applying headphones, many instances of believing that everyone can hear the music even though it is played via headphones and the constant belief that he can walk around whilst attached to the walkman, leading to many instances of the walkman falling on the ground etc (Which has been solved by putting the walkman in a small satchel which my Dad wears whilst listening. Warning: The sufferer may sing along with the music! So you may want to buy earplugs! I think I may need to as my Dad is not the best singer!) As mentioned, patience is key - I lack patience and always have. This is an issue which has proved to be another problem within my house, yet not primarily caused by my Dad. At times, it all gets too much and I/My mum or Uncle lose patience and may end up snapping at my dad, leading to arguments and further confusion. I always feel really guilty after arguing with him! I am sure that you can all relate! I think that once I go to university, there will not be as much stress piled onto me and the ability to be more patient with Dad will arrive. However, I think the fact that I will be leaving home for months at a time will be terrible for my relationship with him, however I cannot delay going university etc because of his condition. I need to live my own life aswell.

As outlined in 'I Remember Better When I paint' - http://tinyurl.com/3rrjevy - Another technique that has proved successful is painting. It seems to be an effective method for inducing calm and focus within the minds of AD sufferers, and as my Uncle (The employed carer for my Dad) is a rather good artist, this is a technique that I plan to introduce into my home and hopefully it will have the desired effects.

Finally, a note to parents - If you are in a similar situation to my mother, where you have a husband/relative living with you with AD and you have children that are undergoing exams, you need to prioritise! Obviously you will need your child to help, but the thing which angers me most is when my Mum will interrupt my revision sessions to ask me to wash the dishes/make a cup of tea - a task which can easily be done by her or attended to later and when I have disobeyed, she has became annoyed, which makes me annoyed and leads to unsuccessful revision. I think that parents will agree that your children's exam results are a bit more important than a cup of tea!

I know that I am not really qualified to give advice as I am not a doctor etc, but I hope that some of you may have found this posting interesting/useful. Thank you all for reading! The next edition of 'Son of an Alzheimer's Sufferer' will be posted in approx 2 weeks and will be on the topic of - How you, as a carer, can deal with caring for/living with an Alzheimer's sufferer.

Thanks again, further apologies for the length of my posts!

James Ellison (@JamesEllison92)

Detection and early signs of AD.

Once Alzheimer's Disease (AD) is suspected, it is relatively easy for us to test to find out whether or not a person is a sufferer. However, who seriously suspects AD at first? Unless there is a family history (Familial AD is very rare) then I am sure no-one would primarily conclude their early symptoms to be AD.

In this post I plan to outline the early symptoms that my father had, hoping that someone may be able to spot them in a loved one/themselves and catch the disease early.

As I stated in my last post, my Dad was diagnosed in late 2008. However he had been showing symptoms of the disease since 2004/5. Like many, we did not expect him to have AD. The fact that his mother died in this time period is believed to have possibly 'sped-up' the onset of the disease. It is accepted in my family that he indeed was suffering for 3/4 years pre-diagnosis - these years could have been used to treat him and delay the progression of the disease! Hopefully this blog will have that affect on someone else, as it is too late for my father.

He went for many tests on his sight and hearing, as this is what he thought was the cause of his new-found problems. These problems, for example, were things such as a decrease in driving skills. He had been driving for about 30 years and was a capable driver yet frequently started to have minor accidents such as reversing into walls/clipping his wing-mirrow on cars when parking etc. I remember when I first started dating and my dad drove a girl I was with home, it was so strange because this was the first time I'd seen him make mistakes whilst driving: taking wrong turns when advised to go a certain way, mounting curbs by accident etc. When I asked him what he was doing, he snapped at me (Mood swings being another symptom - he was always really placid before the disease hit! I suppose the frustration the disease brings is bound to cause anger!). I was really embarrassed and due to his angry outburst the girl was under the impression he did not like her and didn't want to return to my house. (Don't feel too sorry for me! I have a lovely, very understanding girlfriend now! :P)

Yet obviously, sight and hearing were not the problem. As these problems got worse, he decided to take the testing further, going for many scans at the local hospital and concluding, 3 years after the first symptoms, that he did infact have AD.

He is now on medication designed to delay and supress the symptoms (Aricept being the main one - What are people's opinions on Aricept? I suppose it is an unfalsifiable technique. How can we know if he would be any worse not on the drugs? I am not willing to find out!)

So I urge you to test yourself/loved ones if you see any of the mentioned early symptoms! Hopefully you may be able to catch and delay the disease in the earliest stages, not leaving it until it is too late like my family unfortunately did!

Thanks for reading, I am sorry that this blog has been so long! I bet I have bored some of you! I'm new to Blogging though, so I'll try to keep the next posts more concise!

Next time: Advice to Carers from a young person's viewpoint!

Thanks again, James (@JamesEllison92)

Introduction

I am an 18 year old male, living in Newcastle Upon Tyne. You can find me on Twitter at @JamesEllison92, this is where I shall be sharing my blogs.

In the Winter of 2008, my Dad (Then aged 59) was diagnosed with Early Onset Alzheimer's disease. This is a topic which I have kept highly quiet amongst my peers, however I have come to the point where I am under the impression that my experiences and opinions may be able to help others/give them a view of Alzheimer's from a younger person's perspective.

I am planning to try and post a blog every fortnight. However due to exams etc, this goal may be unreachable. If you are willing to 'put up with' my often juvenile 'Tweets', then maybe every fortnight I will provide you with a helpful, sometimes touching, blog.

Within my blog I plan to post stories about my experiences with my Father, the impact that Alzheimer's has had on me and my family and advice for carers - I know that my opinion may not be widely respected, but hopefully I will help someone.

I am not sure whether or not this blog is a good idea, so any feedback with opinions of whether you think the blog has a point or people will be interested in what I have to say will be much appreciated.

This introduction has been written in a rather formal style, I can not promise that this style will be within all of my posts!

Thanks, James.