awareness

[rosaliesal]

Alzheimers takes time

Recognizing there is a problem is just the start of the process. Small things happen, not finding things and then finding them in really odd places. Not knowing where you have just been to i.e. which town. Simply not being aware of routes or that you have been told something. The problem is that as one gets older this is normal behavior... to lose bits of memory. So it is difficult for a doctor to know. In my mother's case I realised just how bad things had become when she would park the car and could not relate to me which route she had taken into town, nor could she remember which car park she had parked on. That was 14 years ago. Each year just a little bit more is noticed. Medicines to calm her aggression (she had always been meak, mild and shy) made her sleep. Some drugs can give hallucinations. Chemicals change the brains workings.The person with Alzheimer's can refuse to accept there is a problem...either because they do not see there is a problem or simply do not want to think of the problems ahead or simply that they do not wish people to be aware so stay silent. My mother hardly makes conversation with the family round the dinner table but talks non stop to our three year old grandaughter..perhaps no fear of making errors. As for driving....our doctor said this was old memory, so as such she could keep on driving. However, in time the looking for the car became a nuisance and I knew she could not know which lane to get into when she had no idea of the routes. When a fire occured at her home she was forced to come to live with us, so I used the excuse that there was no room in the drive and in any event she would always be with me when we go out in my car...so her car was sold...end of problem. The best advice I can give is that you will, like me (after 14 years of dealing with my mum's Alzheimers) face the facts now. Try not to answer all the problems at once, some may never happen. Take each day as you find it and learn and learn how to deal with each situation as it rises. It is not important to make your dad know he has Alzheimers, especially if he prefers not to know. It is more important that you think things out and make sure he is safe and happy. Give lots of hugs every time you see him. Someone living alone will not remember to take medication as they get worse. The best advice I ever received was on my first visit to the Alzheimers Society when they told me "never argue with someone who has Alzheimers, you will never win". You will find at some point anger building...try to keep calm. If you stay calm your dad will stay calm, leading to a happier life. The second best advice was to lie...i.e. if telling the truth would start world war 3 then lie. This I found hard but once I got accustomed to being economical with the truth or simply not mentioning something at all, life became easier. Plan days of pleasure wherever possible for yourself and dad. This leads to happy memories not just ones of bad or sad behavior. Take charge of the situation because ignoring will not help. Things will happen beyond your control and when they do you will find ways to sort the problem and cope. It is like having a first baby...all a big learning curve. The more you do it, the more you learn. However, you will one day reach a point where you need help and your dad will need help. Take care of his needs...it will not go away. Take care of your needs...you need to stay strong to be able to cope. Get sound advice from The Alzheimers Society Group. Speak to your father's doctor. Ours is absolutely brilliant. He put me in touch with The Community Mental Health Team for Older People. It is not your fault...repeat ...it is not your fault. You will look back on that sentence and know one day what I mean. The authorities deal with this illness every day and are experts ready to help. Do not try to go it alone for too long. Recognise the right time, then shout loudly for the help you need. Your father may be reluctant or unable to do this for himself. This is when taking over becomes essential. You have to make the decisions along with the authorities and your father. Do not wait for him to make decisions if you feel help is necessary.

 

[marisarose]

My experience with my dear Mum was that she was acting slightly 'strange' for a few months but we didn't realise what was wrong. One day she said 'I don't know what's wrong with me' and broke down, and of course we reassured her (we didn't know either!). The worse thing was after she broke her hip (and forgot she had done it so kept trying to take the dressings off) and had to go in a nursing home, she would be calling 'help' constantly. It is horrible to hear your Mum saying that over and over, the doctor said it didn't mean anything but it was just awful to see her so distressed, people say the 'medical cosh' is bad but I was begging them to give her something to calm her down as she was calling out constantly and was so distressed. I got used to repeating everything I said dozens of times, I knew it wasn't her fault though my sister kept trying to explain that she had already told her!! The only comfort to me was that she didn't remember the bad times, when she fell several times at least she didn't remember. My Mum's illness started with little strokes which caused vascular dementia which then apparently turned into alzheimers though she was never given any scans to find out.

 

[Old Soldier]

I can confirm that at times the person suffering becomes aware.
It happened twice to my certain knowledge when my wife was in stage2.
Both instances were similar in that she was lying on the sofa when she called me and asked me to hold her hand which, after kneeling beside her, I did.
She then said "Would you pray to God with me as I am afraid I am loosing my mind". It was hard not to cry in front of her.

 

[Christinec]

Thanks for the virtual flowers and as always now I am feeling a little better I realise how many carers on this site deal with so much more than I ever did.

It is good you have a means of relaxing because I know that running around like a headless chicken feeling well and as you say recognising this and trying to take some time out is very important for your on health.

Take care.

Christine

 

[Sue J]

I have developing dementia, I have not been diagnosed but I know that I have. I am a trained nurse and have worked and looked after people with it and I know things are very wrong and that all my normal cognitive function is diappearng fast. But I am caught with terrible frustration and fear because I do not want to burden those around me but I cannot continue to hide it from them - as I can't stop it. They just don't understand especially as I'm young not 50 yet. I am having great difficulty getting help and I'm reluctant to go 'for testing' because of my age - I can't cope with what is happening to me - what will they confirm? What I already know - instead I long to be believed and helped with some social support - I don't want drugs but understanding and care - I am very socially isolated because of it, by enforced choice. When you can't follow normal conversations it becomes difficult and I only want people near me that know me well and who I can tell how I feel, I know it's hard for them too but it's so valuable to be able to share what is happening to you when so many, because of there own fears don't want to know. No I don't want to be a nuisance to anyone but I'm still human and rest assured the thing that helps most is a telephone call, or visit - even if I forget next week that someone called it's in my memory bank somewhere and is still a comfort. If I get frustrated and angry at someone it's because of my extreme frustration not because of them. Who knows how things will develop - you can't fight for yourself with this disease you need others to do it for you- so thank you to the Alzheimer's Society for doing that - I've avoided this site for a while but I may need it a bit more soon.

 

[Izzy]

Sue I'm so sorry to read about what's happening to you. It must be so hard when you are so aware. I hope you can get some help and support here. x

 

[Sue J]

Thanks

Thank you Izzy. I first came to the site a couple of years ago but have avoided it since - not necessarily on puropse but just because coping has been pretty difficult. Have managed to keep my head above water but feel I'm sinking now, I've become worse due to another impending medical with ESA, my last was a nightmare with daily consequences for 9 months before anything got sorted. My CPN has sadly gone on long term sick since Dec and trying to get a replacement is not proving easy. Oh how I wish my mind would work properly again. Thanks again. Sue J

 

[earth angel]

From reading some post/threads ive been amazed (in my ignorance) that some dementia sufferers have awareness that they have this disease. Is this the same for all? My dad had dementia for a long time before it was diagnosed and as far as i know he never once asked or talked about it. The only time i had an incling that he may have known was a few weeks after he went into CH almost 2 years into his illness. He sat one night and clear as day said to me "i didnt know i was daft" have i always been? I must admit at the time i laughed. I wondered what he meant but didnt know how to answer. Ive always thought he didnt know, but now im wondering if he did. Im also surprised that some people can still drive, shop etc. With my dad it seemed like he just switched off one day, there was no meds,scans,cpn nothing. His behaviour,demeanor,aggression,confusion and more was evident to me, but im sure not to him. How long can a sufferer continue to go about his/her daily lives before the awareness goes? Is there a timescale? Does it happen to all or just some?

hi, i work with dementia and id just like to say that each one is differant but there are times when they recognise something isnt right, as they want to express themselves and the words dont come out as they would like, and also depending on the stage of dementia each person is in , as each person has a differant nature everyone is differant, like all of us we get annoyed and aggitated so really its normal that these behavoiurs happen as they do to all of us in our lives

 

[dottyd]

I have developing dementia, I have not been diagnosed but I know that I have. I am a trained nurse and have worked and looked after people with it and I know things are very wrong and that all my normal cognitive function is diappearng fast. But I am caught with terrible frustration and fear because I do not want to burden those around me but I cannot continue to hide it from them - as I can't stop it. They just don't understand especially as I'm young not 50 yet. I am having great difficulty getting help and I'm reluctant to go 'for testing' because of my age - I can't cope with what is happening to me - what will they confirm? What I already know - instead I long to be believed and helped with some social support - I don't want drugs but understanding and care - I am very socially isolated because of it, by enforced choice. When you can't follow normal conversations it becomes difficult and I only want people near me that know me well and who I can tell how I feel, I know it's hard for them too but it's so valuable to be able to share what is happening to you when so many, because of there own fears don't want to know. No I don't want to be a nuisance to anyone but I'm still human and rest assured the thing that helps most is a telephone call, or visit - even if I forget next week that someone called it's in my memory bank somewhere and is still a comfort. If I get frustrated and angry at someone it's because of my extreme frustration not because of them. Who knows how things will develop - you can't fight for yourself with this disease you need others to do it for you- so thank you to the Alzheimer's Society for doing that - I've avoided this site for a while but I may need it a bit more soon.

I found your letter so sad Sue. I don't quite know what to say. I am nearly 60 and mum is in the early stages of it and my aunt an advanced stage.Also their mother my grandma had it badly from the age of late 60's. Another aunt has it too. I am doing what I can to avoid it-no sugar, turmeric (can't quite stomach cayenne yet) apples, co q10-haven't got round to lithium orotate yet which was recommended by my homeopathic GP.

Have you tried any (or all of these).

I am not saying they are a cure all-but they may help. I find it extremely worrying.

 

[Sue J]

Dear dottyd

Thanks for your response, I don't like to make people sad - that's not me and this 'illness' feels like I'm being robbed of me. The main thing I am trying which I do believe helps in some way is homeopathy - through LifeForce in India which is all done over the internet but is affordable. From the questions they ask in their history taking I know they have a deeper understanding of what effects people's emotional world much more than we understand over here, things that I have never been asked here. My journey has given me a lot of insight and I know what makes me worse. However homeopathy is not accepted very well over here and most Drs poo poo it, but I am too sensitive to western drugs and get many other side effects I can't cope with. My GP is aware of my use of homeopathy but he has no faith in it - but why would he if he has no understanding of it. However, at times I forget to take doses because of my loss of sense of time. I feel my condition is advancing quite rapidly and I think that is because I have no real support in helping me to do meaningful things on a daily basis, not because people wouldn't help but because they're really unaware of what abilities I've currently lost. I try as much as I can myself but social isolation is the worst. It is never a foregone conclusion that if close relatives suffer something that you will also, you're you not them. I'm still me, despite the illness - no I don't know what will unfold and at some stage that will be out of my hands in the meantime I would like to communicate some of which I believe helps sufferers. I read about a home in Wiltshire where they have introduced a memory room i.e a room set out with 50s style furniture artefacts etc, patients go and sit in the room and it really helps them - apparently they cut down their use of psychiatric drugs by 70% - my GP would like me to go on some! No thanks. My need is for more social care and support not medicalisation of my current human state of being. Sorry if I've waffled on.

 

[danny]

Sue, I have just been reading your posts and so feel for you.

Have you not thought about trying some of the cognitive enhancers,only because I know they have helped someone I know who is around the same age as you.

I also understand how difficult it must be knowing something is wrong.I know that you are anti GPs etc but some of the memory assessment team consultants are really very helpful and many provide other treatments besides tablets such as Cognitive Stimulation Therapy Groups,this would also help your social isolation a little.

Do you have a memory assessment clinic in your area.

You are right that you need to keep busy and stimulated,some of the specialist memory doctors are also more open to alternative medicines as well.

Keep posting Sue.

Best wishes, Angela.

 

[dottyd]

Dear dottyd

Thanks for your response, I don't like to make people sad - that's not me and this 'illness' feels like I'm being robbed of me. The main thing I am trying which I do believe helps in some way is homeopathy - through LifeForce in India which is all done over the internet but is affordable. From the questions they ask in their history taking I know they have a deeper understanding of what effects people's emotional world much more than we understand over here, things that I have never been asked here. My journey has given me a lot of insight and I know what makes me worse. However homeopathy is not accepted very well over here and most Drs poo poo it, but I am too sensitive to western drugs and get many other side effects I can't cope with. My GP is aware of my use of homeopathy but he has no faith in it - but why would he if he has no understanding of it. However, at times I forget to take doses because of my loss of sense of time. I feel my condition is advancing quite rapidly and I think that is because I have no real support in helping me to do meaningful things on a daily basis, not because people wouldn't help but because they're really unaware of what abilities I've currently lost. I try as much as I can myself but social isolation is the worst. It is never a foregone conclusion that if close relatives suffer something that you will also, you're you not them. I'm still me, despite the illness - no I don't know what will unfold and at some stage that will be out of my hands in the meantime I would like to communicate some of which I believe helps sufferers. I read about a home in Wiltshire where they have introduced a memory room i.e a room set out with 50s style furniture artefacts etc, patients go and sit in the room and it really helps them - apparently they cut down their use of psychiatric drugs by 70% - my GP would like me to go on some! No thanks. My need is for more social care and support not medicalisation of my current human state of being. Sorry if I've waffled on.

good luck with the complimentary therapies Sue.

I am passing on this article which makes interesting reading from Dr Mercola

http://articles.mercola.com/sites/a...19/vitamin-b12-helps-ward-off-alzheimers.aspx

Shocked to find he sees antihistamines as a no-no. I have been taking them regularly for the last 8 years as a sleep aid!

 

[Sue J]

Thanks Angela and dottyd,

Yes I think I do need a memory assessment. However, when I first went to my GP in a state of mental collapse 2 years ago he tried to refer me and I got very upset at being referred to a service for people over 65, I know these are artificial boundaries set by the NHS but they still reinforce the fact that younger people 'shouldn't' suffer these things. Plus at that stage I thought I would get better as I was then removed from a very stressful situation. However, on my most recent visit to GP he suggested again a memory assessment and I feel perhaps I should follow it up. I am not anti GPs, but I am anti psychiatrists for very good reason, but my own GP is very sympathetic to me even though he doesn't get where I'm coming from at times, I know it perhaps sounds like I am anti but that is my frustration. My GP is very patient and supportive but I cannot say the same for the mental health team, although my CPN who has been supportive is now unavailable and despite several requests I get no active support from them - it just seems such a hard slog. But I guess I do need to go back to GP and get a referral. Is anyone aware of assessment clinics for younger people? Thanks for communication.


I've just read your linked article dottyd and find it interesting. I somehow instinctively think I should eat Marmite, I do like it but I my body seems to tell me I need it - has B12 in it. Also of late I felt I fancy coconut milk which has never been a big part of my diet but again drawn to it. The bit about insulin resistance is interesting too, I suffer with extreme migraines when my brain feels 'irritable' all over like it's inflamed and my brain doesn't fit in my skull anymore - pain control at these times is pretty difficult as triptans give me such terrible side effects. It really feels like the body's system of hormone control is totally out of kilter. I find it interesting what is said about some of the memory enhancers like Aricept I have a strong instinct these are not for me and is partly why I'm reluctant to be assessed by memory psychiatrist. Thanks again for it I will continue to check out those articles when concentration allows, but funny isn't it that the latter is helped so much just by communicating with others that allow you to talk about it.
Sue