Carers and their health

[KenC]

Hi all,

As a person with Dementia I am always amazed at the way carers get on with life, and no matter what happens it does not seem to affect there careing role.
I only say this because my wife has her own health problems at present, and yet she still worries more about what I am up to than her self.
It seems that carers are individuals who have the ability to get on with life no matter what is thrown at them, and they seem to have some special qualities which are very rare,. Through all the stresses thrown at them with Dementia, nothing else seems to matter.
I confess that there are times when I wonder how she and other carers manage to carry on, looking after themselves, as well as watching over us. Or is it possible that at times carers neglect themselves, because they are hell bent on giving us at least 100%. This is something that I cannot and never will understand.

Bless you as you are all angels.

Best Wishes

Ken

 

[Margarita]

Thank you , that very kind of you to say that .

do love your saying ken

Today is the tomorrow you worried about yesterday-and all is well

 

[Taffy]

Or is it possible that at times carers neglect themselves, because they are hell bent on giving us at least 100%. This is something that I cannot and never will understand.

Bless you as you are all angels.

Dear Ken,
I think that you hit the nail on the head here. In my own case I have been asked many times 'How' and 'WHY' I put up with all that is thrown at me. I don't have any answers and truthfully, never seek them. Dementia is very challenging that's true, but, everyone was a somebody and no disease should make anyone a nobody. I use to always believe you get out of life what you put into it, but, seeing mum now and knowing mum's life was helping other people ( I'm not talking the dementia) life hasn't given back to her. Ken, I also like your signature and your thread was, so thoughtful. Take Care. Taffy.

 

[Amy]

Hiya Ken,
I think some carers do neglect their own needs - prepared to put their caring before their own health. Why? Love, duty, responsibility? We all have our own reasons.
Your wife sounds to be a very special lady.

Love Helen

 

[Nell]

Dear Ken,

I am always impressed by your posts and the fact that, despite your diagnosis, you can still think so clearly about other people. This must be a blessing for your wife.

She sounds like a very special lady and I'm sure she feels she has a very special man in you.

I do like this statement by Taffy, don't you?
everyone was a somebody and no disease should make anyone a nobody.

 

[Norman]

Hi Ken
the simple answer is "LOVE"
The good little moments when our loved ones give us a fleeting glance of what they were before AD,make it all worthwhile.
Norman

 

[connie]

Hi Ken, thoughtful post. Thank you for thinking of others.

Would go with Norman on this one:

Looking after the one you love
Outwardly staying calm
Vexed that you cannot put everthing right for them
Everlasting LOVE

 

[Grannie G]

Dear Ken,

Thank you for your public praise of Carers.

I put my husband first because his need is greater than mine. It`s as simple as that.

I hope your wife is sensible about her own health problems, you need each other.

Love xx

 

[KenC]

Hi all,

We have been invited to a meeting at our local NHS trust this week to discuss a Dementia Study day, which is being held in September after the AGM.
I have been asked to speak about life with Dementia, and what changes hospitals can make where Dementia patients are concerned.
Janice has also been asked to speak about life as a carer, and there roles in hospital situations.
The idea being that that they want to raise the profile of the illness, and the carers.
Up to this date we are not sure as to whether Janice will be there due to RadioTherapy, but if not, I said I would speak to them about the role of the carers and hospitals.
I have learnt quite a lot over the last year, through studies done with the Living with Dementia Working Group at the Alzheimers Society, and at our local branch where we are both committee members.

Although I am not a carer, I have taken it upon myself to push the role of carers in Hospital situations as well as outside. I think their work is understated and the profile of carers needs to be raised, so that everyone from the Doctors down over know what they do in this dreadful illness.
Because I am convinced that many hospital doctors look at carers with distain and I find that disgusting, because as I said before they look after us first and themselves second. I don't think this happens anywhere else apart from a Parent and child.

All being well I won't have to do this, as my boss will be there to keep me on the right track.

But I must say that we have both learnt quite a lot from our carers group and from Talking Point, where we get first hand knowledge from the experts (You yourselves).

Best Wishes to you all.

Ken

 

[Grannie G]

Ken, you never fail to amaze me.

Love xx

 

[KenC]

Believe I need to fight this as much as I can at present, as I don't know how long the medicaton will last. But I have enjoyed my time with you all, and one way or another we have to get better conditions for people with Dementia and their loving carers, so I am only trying to do my bit in the hope that we succeed.

Ken

 

[Margarita]

Janice has also been asked to speak about life as a carer, and there roles in hospital situations.
The idea being that that they want to raise the profile of the illness, and the carers.

My mother never had an over night stay in a hospital , and from what I have read on TP , I would have to stay all the time in hospital , just so that she not left soaking wet in her urine , because nurses are so over work to take people with dementia to the toilet , or generalize that , because they have dementia that they must be incontinent , I did find that about generalizing when mum went to A and E


Must say that mum has only been to A AND E and the staff have never look at me

look at carers with distain

but admiration , encouraging me to stay , yes because they so over work under staff to take my mother to the toilet and not trained in caring for people with dementia

seeing now I am my mother voice , I do find the the district nurses and incontinent nurse attitude very abrupt, they could do with more training to understand people with dementia so toping them generalizing all people with dementia the same .

I do hope they invest some of the money that I read that they are putting into dementia care , in to training all NHS staff about dementia caring , how you talk to someone with dementia can make so much of a different, that what NHS staff should learn , when trained

 

[Lonestray]

Lucky

Ken,
When ever I read the posts on TP I'm reminded of all the hurt, stress and pain your all going through, not a happy memory.

Now I'm pleased to say that's long behind us, life's been so much better over the past four years, except for three seizures she's had this year we're doing fine. The last one was early Feb.
She's done well over these years without any medication.

I must be the luckest carer in the country, still having my wife to love and cherish.

No more seeing people who're not there, wanting to go gome to Durham, not eating, visiting NH etc etc. Best of all we have our lives back, no GPs or other such 'visitors'. OK she's not able to talk or move but that only makes me love her all the more the way she is.

How I wish and hope others can, and will discover the End Stage which we found, where she's healthy and thriving and me seeing the results of my effords in her smiles of contentment. Does she know me? Who cares, so long as she keeps kissing this strange man! Padraig

 

[DickG]

Sorry Padriag

You cannot claim to be the luckiest carer in the country but I will willingly share the podium with you. Despite all her problems Mary laughs her way through this dreadful journey and our time together is precious.

Ken, you are an amazing person and your wife is so lucky to have you in her life.

Dick

 

[BeckyJan]

a very special man in you

everyone was a somebody and no disease should make anyone a nobody

I think these two quotes make sense for me - and then Norman has said what I think - it is LOVE - thats what makes us carry one.

I love my David now more than ever - he was the 'successful'one and now it is over to me. There are still wonderful moments. Dementia is one hell of a learning process but here we are - all in it together.

Beckyjan

 

[mojofilter]

I always give the same answer when I'm asked why I cared for my mum for so long ...

I just say "she's my mum" ...

It's that simple really ....

Paul

 

[Lonestray]

I'm sorry Dick I don't wish to be put on a podium, maybe I didn't word my post right. What I should have said was if there is a loved one who's survived the 'End Stage' when the hospital, her GP and and attending nurses, predicted my wife's death four years ago, then we should consider ourselves very lucky.

Maybe there are many other sufferers who were at death's door and are now in the same condition as my wife. If so, their carer will know how fortunate and lucky they are having them the extra time plus caring is much easier.
Over twelve years on living with this curse we're doing fine now! Padraig

 

[cynron]

kissing

Padraig.

I used to kiss my husband a lot and i also do not know if he knew me ,but there was a response maybe he thought i was a extra caring carer. He always liked to flirt.

cynthia x x

 

[Margarita]

Does she know me? Who cares, so long as she keeps kissing this strange man! Padraig

That said it all really, sounds really lovely

Maybe there are many other sufferers who were at death's door and are now in the same condition as my wife

yes my mother was , felt like a twist in fate that she ended up being diagnosed in Gibraltar in 03 , given Exbiza 03 If she stayed in England me not knowing what AZ was really about until 06 till I really got my head around AZ and found TP .

The stage she was when she arrived in GIB , year more and she would of been in your wife shoes padraig .

I could of never been doing what your doing for your wife , because I would feel my mother not having any quality of life to prolong it . but I do repect life is better then no life

They no right or wrong in given medication or not or how your caring for your wife not saying that , so hope what I am saying is not taken as offensive .

Ebixa was a new medication only just coming out in UK in 02 , that why I know with my lack of understand about dementia in 03 , I would of put my mother in care home if she had stayed in uk , it gave me time to learn and gave my mother back her noing how to go to the toilet , talking , mobility it brought her back to us knowing who her family our .

and also I know Exbixa does not work for every one

OK so its not a cure but its guiding her slowly into the late last stages with awareness , but how I look at it , if one had cancer one would also be aware

 

[CraigC]

Hi Ken,

I'm just going to throw my 2 pence worth and agree with norman and connie. A lot of it comes down to love.

That said, now mum and dad are in residential care, I've met many carers who deal with mum and dad and they just seem to have something 'special' about them. Hard to put my finger on it. Some would say it is a calling, but it is more than than that, they just seem 'special'.

There are a lot of angels out there and it gives me a lot of hope.

kindest regards
Craig