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)
Thanks James. Interesting reading, though a little scary (after all, who doesn't occasionally get moody and/or have minor accidents?).
ReplyDeleteOne thing I'd be interested to know, though, is how your Dad responded to the first diagnosis. Was he angry and or outraged? Did he demand a second opinion? Or did he accept it?
By the way, good to hear that you have a supportive girlfriend - I'm sure it makes a world of a difference!
Thanks! I know, but if those accidents and mood swings start to happen more often, people can check. Hopefully they will be nothing! If there is a problem, I hope that people find it is something less serious!
ReplyDeleteWhen my dad was first diagnosed I think he was more upset than angry, he had been for so many tests that he knew it was something serious, he already had gathered many opinions. The disease meant that he could no longer work - a factor that deeply upset him. He did get angry at times, yet more upset/frustrated I think. Overall, he accepted it as well as I think anyone could. Thanks for your questions!
Also, yeah, she's amazing! A very lovely girl! She does make things a lot easier! :)
I hope your father responds well to his medication. My father inlaw had probably had his symptoms for at least a couple of years befor he was taken ill. Our family kind of explained them away as dads funny little ways.
ReplyDeleteComing home from the pub with the wrong leather Jacket, Trying to use the red ball as the cue ball in a game of snooker and swearing that the Bass broom I had bought for him in town wasnt actually a bass broom at all are the ones that spring to mind. Hope all goes well, I look forward to your progress reports.
Thank you for your kind words! I know exactly what you mean, going out with tops on inside out/back-to-front, having shoes that don't match or putting them on the wrong feet, forgetting to take tea-bags out of the tea etc! Little stuff which seems trivial but can mean something so serious! I am sorry to hear about your father-in-law. Thank you for your comments and thanks for reading!
ReplyDeleteHi James, I 'looked after' a father with Alzheimers for a year or so without knowing it. You really need someone older and wiser to help you through it and to point things out to you. I found it infuriating, not least because I wasn't having an easy time of it myself at the time.
ReplyDeletePerhaps diagnosis and medication has moved on since then.
Ultimately, I concluded that all was fine so long as my father was happy and safe in his own little world. It did hurt, though, not to be recognised after a while. I also felt guilty not to have spotted his condition sooner and been more supportive.
I wish you all the best anyhow, but don't feel guilty - it's an impossibly difficult situation. Recognising what's going on is undoubtedly the first hurdle.
Hi James
ReplyDeleteMy mum had 'an Alzheimers type' dementia and was on Aricept but as an older person so we were older than you and I'm sorry you are having to deal with itnow. However, although it is an illness I don't think it's the worst you can have especially if you have family around. Your adaptation to his 'losses'is key to helping him as is a sense of humour. Your blog is VERY important. Well done.This is a growing issue and we must highlight Alzheimers where we can to raise research funding and funding for education and support. Keep it up.
RE DaddyUncool: Thanks for the advice, we often have nurses coming to the house and my uncle has been employed as a carer. I know what you mean as I have found myself really stressed before and frustrated, it's so hard to stay patient!I have no idea whether diagnosis/treatment will have progressed since your experiences. Hopefully I will be able to come to a similar conclusion, it is hard though when 'his own little world' has such a massive effect on the rest of the family.I can't imagine yet how sad it will be to not be recognised, but don't feel guilty, you couldn't have known! Thank you for your wishes of good luck! I really appreciate it! Thank you for your advice and support!
ReplyDeleteRE Yvette: I'm sorry to hear about your mum and thank you for your thoughts! I do have family around, yet it obviously is still hard, as you well know. And thanks, we have all tried to maintain a good sense of humour and I think it really does help. Thank you for supporting and reading my blog, I am glad that you think it will help people and highlight the key problems AD brings!
ReplyDeleteHi James, It is both interesting and saddening to read your blog. I can draw parallels with my own father who was diagnosed with early onset Alzheimer's at 48. The early signs of his illness were similarly shown in driving errors and changes in his mood. Colleagues at work had also noticed changes which at the time were unusual. I was about 13 when he was eventually diagnosed after a long period of investigation which culminated in a brain biopsy. The early stages of his illness were perhaps easier for us to deal with than him. This seemed to reverse towards the latter stages when his disease progressed. I think the difficulty he had was stopping work and the insight he had into his future. He was a consultant orthopaedic surgeon and so the loss of such a skill was devastating for him. Being from a medical background, knowing what lay in store was equally challenging for him. I remember the feelings of guilt I had when I would snap at him when times were tough, and always having to remind myself that it was not dad but the disease. My father had a great sense of humour, and luckily he held on to that as things progressed.
ReplyDeleteWe managed as a family to keep him at home, with the help of a carer during the hours my mother worked. About 6-7 years into his illness, the demands of properly looking after him became too great and he went into a specialist care home. He died last year at 60.
The support of family and friends was vital throughout the course of his illness, particularly for my mother who managed to raise 3 kids, look after my father and be a GP! We took comfort in the fact that things would actually get easier for him as he became more unwell, even if it was the reverse for us.
I have followed my father into surgery (and am training in Newcastle Upon Tyne!) and working in hospital see many families struggling along with a loved one with dementia. More often than not, by the time help is sought and given, on assessment of these patients, help and support should have been there long before. My mother felt huge guilt about dad going into care, but in honesty he probably should have been in care before.
I don't have great pearls of wisdom, but looking after yourself and your family is so important; Alzheimer's is a really tough illness to have and to look after. It is stressfull and it is hard to stay patient, however from reading your blog you seem to have your head well screwed on, (more than I had at 18!) and will deal with whatever comes your way. All the best.
Hello James - my father lived with progressive Alzheimer's for at least 8 years. He passed away last August. He was on Aricept- and Namenda - and serequel - but then did well on the Exelon. Patch -
ReplyDeleteI hope this is some bit of help.
Rebecca
Hello James. I looked after my Mum full-time for six years till her death – the condition had probably been coming on for six years before that. Aricept was brilliant for her. It works for about half of all patients and I definitely saw it arrest and reverse some effects. Usually it ceases to be effective after two years but she was still taking it at her death, which was very peaceful and swift, while she was still enjoying life. You have a tough road ahead but do be aware that it has its joys as well as its sadnesses. Your uncle, as main carer, needs lots of love, support and understanding from the rest of the family. Stress has an adverse effect on the sufferer so everyone should focus on removing stress as much as possible. A sense of humour helps. The AZ society has a good free book that you should all read.
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ReplyDelete