My Battle with Alzheimers RAGES ON !!

[Norrms]

My
Battle With
Alzheimer`s

As my battle with Alzheimer`s rages on, the conversation with (My Angel) Elaine in the car turns to how things have been lately and how well the medication has been working as I have now been taking Ebixa for fourteen months now. I sit in STUNNED silence as she explains that she has seen a small downturn in my well being, so the car is pulled over to a local beauty spot as I listen intensely.

Elaine says that the last few weeks I have become very irritable and my favourite saying is “Why am I always wrong!!!?? Or “You didn’t tell me that you must have imagined it!!” As I listen, small instances come flooding back as I can hear myself saying these things. I listen in absolute horror at some of the things I have said to my darling wife, the one who has backed me all the way through life and now has the task of looking after me full time whilst having the added worry of seeing me disappear right in front of her eyes, slowly but surely disappearing in body and mind.

A lot of what I am being told I have no memory of and it’s like Elaine is telling me a story about somebody else she has been told about. I shake my head in utter disbelief that I have behaved this way as anybody who knows me knows I am so laid back I am practically horizontal!!LOL
Then the thought hit me like a shot! Is this how denial of the illness starts? Do I start to argue with the only person I have ever loved about the daftest things but yet causing so much heartache? Does this illness know no bounds of Horror and deprivation?

Then I started to think what I did yesterday and the day before, “NOTHING” “ABSOLUTLY NOTHING “ came to mind but as I asked Elaine what we did and as she told me a little bit of recognition came back and I remembered a few things.
Have I been too wrapped up in everything these last few weeks to notice my decline? Is it a blessing for me not to remember or just a constant curse for my family and friends? Is this the start of my decline? I can’t be the only one with a diagnosis who feels or has felt this way but how many have had the confidence to talk about it? How many people want to or wanted to talk about these worries, especially those that were on their own or had very little support?

This is why we MUST!!! Make Dementia a topic to be spoken about and debated about in the open! Not behind closed doors!! And certainly not without involving those of us who actually have this awful disease!! We have a voice as well!! Who better to tell it “AS IT IS” than us and not what some who “THINK” what it is. We have to involve all Carers” from all walks of life as their “up close and personal” experience is absolutely invaluable, including families’ and loved ones who have all had their own journeys and stories to tell.

Please join me on my journey to make the Stigma of Dementia a thing of the past. If I am in Decline I promise you all I will not go down without a fight!!

As always, my very best wishes, Norrms and family

xxxxxxxxxxxxxxxxx

 

[Grannie G]

We are all with you Norrms. xx

 

[Vonny]

Dear Norrms, don't forget that you have been under a lot of pressure recently with your fabulous radio and TV appearances, getting your poetry published and generally fighting against dementia.

As Sylvia says, we are all with you. I know you must battle on, but please try to make time for yourself as well as all this campaigning.

Look after yourself Norrms xx

 

[jcookson]

Thank you Norms for your insight into AD. My husband was diagnosed 3 years ago and I find the things you write about and the way you write them very comforting particularly todays comment about "I am always wrong". My husband says this constantly and I do worry that perhaps I am the one that is doing or saying something wrong.

Much love

 

[nellbelles]

Norrms

Take care my friend, you have been under a lot of stress (even if it is good stress) so don't be to hard on yourself.

 

[sad nell]

Norrms I was saddrend to read your post, It all sounded very familiar, and Trevs behaviour towards me was also totally out of character, Elaine will know this but it will not make it any easier for her. You have been doing so much and pushing yourself fighting our cause, you maybe just need to chill for a while, the ammount of energy you muist have used these last few weeks might just be taking its toll, hope this week you and Elaine share some nice days out love to you both Pam amd Trev

 

[hazytron]

Oh Dear Norrms.. So sorry to read your post and feel your frustration.

Mum has a saying "I can't do anything right". She tends to say this when she hasn't been able to follow instructions eg. I tell her I will be over in five to ten minutes to take her out, possibly to attend an appointment where time matters, more often than not when I arrive Mum has settled down to enjoy a cup of tea, have a biscuit, must go to the toilet, must brush her hair, must check all she needs is in her handbag.

In the meantime I receive her venom for rushing her and am told that she can't do anything right.Then she becomes more angry, sometimes driving with her constant shouting is so dangerous and I can feel really afraid and am not able to drive with due care and attention.

Mum has no understanding of this dangerous situation and I often have to curtail our journey to prevent things reaching fever pitch.

Stay strong Norrms. Your input to TP is so valuable.

Love Hazel

 

[Skye]

Dear Norrms, I agree with Pam.

I haven't seen any sign of irritability here, but Elaine is the person who knows you best.

I do think you are perhaps doing too much. Don't forget you are ill, not just with AD, but with heart failure too, and that may be causing the irritability.

Please do as Pam says, and have a few days off with Elaine and your family. You're doing wonders in raising awareness, and I think you're wonderful, but you are so important to us, and you mustn't risk your own health.

I know you won't stop fighting, but time to withdraw and recoup your atrength?

Love,

 

[Jancis]

Dear Norrms,
Sorry to read how you are feeling today - you have taken on such a phenomenal challenge with your campaign. I think I would be exhausted taking on so much and working so hard. Just facing the illness is bad enough let alone your commitment to helping others, writing up your accounts, talking to the media etc. - and that's only the tip of the iceberg. I do hope you are taking good care and not putting yourself under too much pressure.
x Jancis

 

[Mo_N]

Please join me on my journey to make the Stigma of Dementia a thing of the past. If I am in Decline I promise you all I will not go down without a fight!!

With you all the way Norrms. (Can't stop the song "Will join join in our crusade" from my favorite musical Les Mis going round my brain now )

Just don't get so involved that you tire yourself out as that can make the healthiest of us tetchy with those we love.

Perhaps it's time to take a few days off so you & Elaine can just concentrate on the nice things you both enjoy together.

Love to you both
Mo
x

 

[Izzy]

I recognise Bill's reactions in what you say in your post. I think others are right. You need to think of yourself and your family as well as your cause. Take care. x

 

[Norrms]

Thank you

Thank you so much my friends and we totally agree, a couple of days off is just what the Dr ordered, thank you my dear friends, best wishes, Norrms and Family

 

[CraigC]

Hi Norrms,

Good to talk and hope you keep on talking and being open Norrms.

I hope I do not speak out of turn (and just dipping in as a bloke), but when relationships are under strain comments like “Why am I always wrong!!!?? " are not too strange, not for me anyway

It is great Elaine can say what is on her mind and you both have that openness. People who have challenging issues just don't talk enough and it sounds like Elaine and you have special relationship. Stress has a funny way of changing the way we react and deal with people, particularly those we love. Unfortunately your situation may well amplify this, but you know that better than me.

Kindest Regards
Craig

 

[miss cool]

HI NORRMS, before you jet off for a brake could i be so bold as to ask a question, just one it my not of happend to you yet or it may of but it seems to be getting harder to work out what is real and what is not??????

i hope this makes sence to you if you have no ideal thats ok.....


love miss cool.xxxxxxxx

 

[Barry]

Hi Norrms,

Sorry to hear you’re a bit down and I agree that maybe a few days rest would do you good as that’s exactly the way I feel myself at the moment… but what you’ve just written about I can totally concur with since I’ve been doing the same thing with Sumi just lately and continuously moaning… according to Sumi I’ve become extremely irritable and my previous wisdom of being a very placid person has gone flying out the window, what ever Sumi does to help me is wrong and I use much the same verbal expressions as you do, with Sumi, though I have to admit that mine can come a bit more (Verbal) in fact Sumi has been so worried that just last week she went to see my doctor alone so that she could discuss the problem and her concerns with her alone… apparently the doctor told her its all part of the degenerative process and just to be patient and understanding which is an easy thing to say when your not the person at the blunt end of the problem… so all we can do is to keep on fighting!
Barry

 

[larivy]

Hi norrms I agree with all that's been said and I'm behind you all the way give my love to elaine love larivy

 

[Norrms]

Thank you all

Thank you all so much, i am just playing around on my computer and having a great time going out and about for the next few days, i promise the soap box is under the stairs for a couple of days !!LOL LOL

 

[sad nell]

Thats good to hear Norrms, we need you to look after yourself or we shall all worry about you, what about treating your angel to a nice bunch of her favourite flowers, or just one of your radiant smiles love Pam

 

[Norrms]

Hiya Pam

thank you for your kind words, she is the light of my life and can have anything she wishes, lol best wishes, Norrms and family xxxxxxxxxxxxx

 

[hazytron]

Hi Norrms

It is good to know you are taking some time out.

Enjoy some peace with your darling Angel.

Love Hazel