I would like to explain

[Helen33]

It has been on my mind today about how many times I have talked about making sure that Alan had the best care possible. It crossed my mind whether I might have come across as someone who was saying that I was the best carer and blowing my own trumpet

So would you allow me to explain what I always meant then and why I used that term so often.

When the consultant confirmed that Alan had FTD he said that nothing to little was known about this form of dementia, that there was no cure and that nothing whatsoever could be done. I left the clinic with NOTHING. I had no information; I had been told that no one knew about it so there would be no point in trying to find information; I had been told that nothing could be done and that it wasn't Alzheimers disease.

I had a husband who was losing his abilities and I had no idea how to help him and so I started to try to help him myself with no knowledge whatsoever of what I was doing I found out what he responded well to and what he didn't and the process began. It was easier in the early days - easier but not easy!! A colleague saw my worn out and anxious state and asked whether I'd been in touch with the Alzheimers Society and I said no because Alan didn't have Alzheimers disease. She said she didn't think it would matter. To cut a long story short I eventually found Talking Point and it was from there that I began to learn more and more and was encouraged, supported and spurred on by you all. I realised I was learning how to give Alan the best life possible If it was left to what happened with the consultant Alan would have had a very poor quality life and probably a very distressed and unhappy one.

So I was never saying that I was the best carer but that through Talking Point Alan was enabled to have the best life possible because of what I gained from you all.

I am so glad that I have had a chance to explain this.

Love

 

[noelphobic]

Helen, you don't come across at all as someone who was blowing your own trumpet and I am sure that never occurred to anyone. I have no doubt though, that you were the best carer there could be for your husband and you have also been a great source of support and comfort to many people on here, myself included.

I also found AS and TP 'late' because I thought it was just for people with Alzheimers disease, not those with other forms of dementia. I think there was some talk a while ago of changing the name to reflect the fact that the society represents people with all varieties of dementia, and their carers of course. I don't know if any progress has been made with regards to that.

 

[hazytron]

Helen, Never in a million years do you ever come across as being a "know it all".

You sought out all the information and knowledge available throughout this wonderful forum and from all of your learnings and experience you gave Alan the best of care and have enabled others like myself, to benefit from your support towards us.

Please always be there for us!

Lots of love
Hazel

 

[lin1]

It has been on my mind today about how many times I have talked about making sure that Alan had the best care possible. It crossed my mind whether I might have come across as someone who was saying that I was the best carer and blowing my own trumpet

So would you allow me to explain what I always meant then and why I used that term so often.

When the consultant confirmed that Alan had FTD he said that nothing to little was known about this form of dementia, that there was no cure and that nothing whatsoever could be done. I left the clinic with NOTHING. I had no information; I had been told that no one knew about it so there would be no point in trying to find information; I had been told that nothing could be done and that it wasn't Alzheimers disease.

Helen you have no need to explain we all understand what you mean when you say "ensuring Alan has the best care" your not blowing your own trumpet and dont come over that way !

As for that consultant , words like ignorant uncaring pillock spring to mind and a lot more that are unprintable on here.
Mums been under a few consultants like that , n for some strange reason they didnt like me or dad , I wonder why LOL

Thank god you did research and tried your hardest

 

[Bristolbelle]

Helen.....

honestly how can you think such a thing!!! We all knew what you meant there was never anything other than the strongest possible deire to give Alan everything you could, as well as everything you couldn't. The pictures you shared also helped many of us an aspect of dementia not everyone shares, and were so uplifting. You often took us unwittingly under your umbrella and sheltered us from the storm too. Bless you......

 

[Izzy]

Just echoing what others have said - I do not doubt that you did indeed provide the best care possible - fact. xx

 

[sussexsue]

Helen, I dont know about you, but I find I gain a little something from each and everyone posting on here. Little insights that help me be a more informed carer.

From you I learned the tactile needs of the person with dementia. The pictures of Alan with his "animals" had a profound effect on me.

From those with the illness I have been priveledged to have a small insight to what they have to deal with and how they feel.

From some I have learned so much about the practicalities of dealing with dementia and all its hideous side-effects.

From others I have cowered at their rantings, knowing that is just how I feel from time to time.

So far I havent spotted a perfect carer destined for sainthood - so I can let you off that one

I can honestly say I have never thought of you as the best carer in the world, but you were the best carer Alan could have hoped for because you loved him and showed him respect. When I read other postings I often feel a bit inadequate, but then remember that I too am the best carer my mum could hope for, because I am there for her - along with all my many faults.

(((hug)))

 

[scarletpauline]

I totally agree Helen, understand that you felt you wanted to talk about it though, we all know how good you were to your dear Alan.
My Alzheimer's Society worker has told me that they deal with all forms of dementia, so if anyone new isn't sure, it's true.
Love to you Helen xxxxxxxxxx

 

[CaPattinson]

explanation neither needed nor necessary.

 

[noelphobic]

My Alzheimer's Society worker has told me that they deal with all forms of dementia, so if anyone new isn't sure, it's true.
Love to you Helen xxxxxxxxxx

that is true, but it is natural for people dealing with different forms of dementia to believe that AS doesn't 'cater' for them unfortunately. That is a large part of the reason why a name change was being considered, although that isn't without its potential problems also of course.

 

[Jancis]

Helen you have no need to explain we all understand what you mean when you say "ensuring Alan has the best care" your not blowing your own trumpet and dont come over that way !

As for that consultant , words like ignorant uncaring pillock spring to mind and a lot more that are unprintable on here.
Mums been under a few consultants like that , n for some strange reason they didnt like me or dad , I wonder why LOL

Thank god you did research and tried your hardest

I echo Lin 100%. I think my uncle has shared the same consultants!!!!!!!!! Aliens in my book.
Helen, please don't feel misunderstood, impossible.
xxx

 

[elaine n]

Helen! how could you think such a thing! i firmly believe that family carers are the best carers there are because they know the real person behind the dementia and care for them in the real meaning of the word care. This in no way denigrates professional cares - I was one working in OT for 15 years once upon a time and while it's given me a good grounding, in no way has it prepared me for the reality of living with this 24 hours a day! I could go on for hours but won't - suffice to say, the care you gave was given out of love, nothing less xxxxxxxxxe

 

[Grannie G]

Dear Helen

When I read your post it made me wonder what caused you to write it. Now I have read poeple`s replies I hope you realize your fears were groundless.

One of the most important things I have taken from your posts Helen, is your emphasis on taking care of your own well being during the time you were a carer to Alan.

By writing about looking after yourself in order for you to stay as fit and well as possible to help you to be a competent carer, you sent a valuable and very strong message to all of us on TP.

We cannot strive to be good carers if we don`t care for ourselves. It is not selfish to value the importance of our own well being. It is in the best interests of the ones we care for.

 

[grove]

Hello Helen, Just read your "Post " & i do think & feel you come across in your replies to me & others as a lovely/ careing person and that showed in the way you cared for Alan.Good on you for all your hard work ( with Alan) & proving the Dr wrong ! ! !.

Like Izzy agree with every body else in what they said & many thanks for your very supportive replies to me as a "new" Carerer ( on the sidelines ) you have helped me a lot ! !

Take Care & Best Wishes Love Grove x x x

 

[Jo1958]

Helen, hi
What a lovely post, I just wish that others leaving consulting rooms all over the world were in a different situation today because of what you had to go through on your own, but I am sorry to say that that is not the case and the need for constant and continuing care from TP is still as true today, it is what makes experience and life stories so very important and treasured but all who find this site. Thank you for continuing to care and support, it is so much appreciated.
Wishing you a very happy new year and good fortune in 2011 from Jo

 

[larivy]

helen can only agree with everyone else
and besides i know you cant play a trumpet
love larivy

 

[Helen33]

Hi Larivy,

But I can play the didgeridoo

You are all wonderful. I felt I really needed to talk to you today about what had come into my mind and I am glad that I did. Thank you for listening and helping to put my mind at rest. It helps to know that you all know when I make that statement it is not because I need to be seen as anything special but because I realise just how bad Alan's life could have been without proper information and support.

Love

 

[milly123]

hi hellen i agree with all the other post i myself have done things my way why not i have been married to him for 54 years going by the book so to speak is not alway's best and im positive everything you did for alan was for the best milly

 

[Loopiloo]

Helen, I can only echo what everyone else has said. When I joined TP I read many of your posts and you are an inspiration, you helped me more than you will ever know.

By writing about looking after yourself in order for you to stay as fit and well as possible to help you to be a competent carer, you sent a valuable and very strong message to all of us on TP.

We cannot strive to be good carers if we don`t care for ourselves. It is not selfish to value the importance of our own well being. It is in the best interests of the ones we care for.

I read what Helen wrote and this is one thing I have yet to apply. I find it difficult. Thanks for the reminder, Sylvia.

Love
Loo xx

 

[Issy]

Thank you

Helen, I am realively new to Tp but often read the threads which are so supportive. We are at very early stage of the journey with my husband. I have looked up FTD on the Alzheimer's Society Factsheet and now suspect this will be the diagnosis - when and if we get one at some point this year. My husband shows so many of the features with massive loss of social inhibition and OCD traits. Thank you for your thread and all the responses
Issy