Tuesday, 3 May 2011

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)

6 comments:

  1. Hi James,
    I found your blog on a link on Dementia UK on twitter, I'm very interested in writing an article on young people who care for people suffering from dementia as we don't really hear much of this in the news. Currently I'm working for a magazine called catch22 based in North London and am a freelance journalist. Let me know if you're interested. Thanks!
    Gemma Suyat

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  2. I'm very interested! Contact me on Twitter? @JamesEllison92? Thanks!

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  3. Hi - found the blog via a link on Twitter and just wanted to say that I'm finding it really interesting and thanks for sharing your experiences. You've put together some really useful advice there. I look forward to following your writing more.

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  4. Hi James, I really enjoyed reading your blog. Thanks for sharing it! I especially enjoyed what you found to be most useful; keeping a diary and not assuming what the AD sufferer can and can't do. I love that you found taking the dog for a walk to be calming for your father and no doubt for you too!

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  5. Hi James, great post, I think it's so important that you are writing this and helping to raise awareness because sufferers and their families can feel so alone.

    Lots of helpful tips here! It was especially touching how your Dad gets on with Oscar. It was so nice of you to get your Dad a CD player, I think music is especially useful for people with memory problems. Haha my Mum would never have been able to "get" the Wii either :-)

    You're so young to have to deal with this - I can't imagine having to deal with Alz as well as being in education. Looking forward to reading more :-)

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  6. Hi – Will you please post a link to your important Blog at The Alzheimer’s Community at vorts.com? Our members will really appreciate it.
    Members include: Those living with Alzheimer’s, their families, friends, caregivers and support groups.
    It's easy to do, just cut and paste the link and it automatically links back to your website. You can also add Articles, Photos, and Videos if you like.
    Email me if you need any help or would like me to do it for you. I hope you consider sharing with us.
    The Alzheimer’s Community: http://www.vorts.com/alzheimers/
    Thanks,
    James Kaufman, Editor

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