Article in Daily Telegraph

[Lucille]

There was an amazing feature in yesterday's DT (8 August) written by someone whose mother suffered from AD. It was entitled 'I'd rather have cancer than Alzheimer's' ... or something like that. Sorry, haven't got copy of paper with me and have looked on DT site, but can't find it. Perhaps someone else will have better luck.

It really was moving, and about half way through I burst into tears! It really gave a good view of what it must be like as a sufferer and how a carer has to deal with it ... there were things I could empathise with, hence the waterworks.

I will endeavour to find a link (if someone doesn't beat me to it!) so that you can read it.

 

[Tash]

Hi Lucille,

I think this might be the piece you're talking about:

http://www.telegraph.co.uk/portal/main.jhtml?view=DETAILS&grid=&xml=/portal/2007/08/08/nosplit/ftalz108.xml

Best wishes,
Tash

 

[Brucie]

Hi Tash

thanks so much for finding this. I looked but clearly not well enough!

Truth be known, I found the article far more moving than the programme last night. Because each case is different, reading an article enables one to merge one's own reality with that of the writer. That doesn't seem to happen with TV because the situation shown is more of a specific encapsulation.

Such a good article, and for that, thanks Lucille as well!

 

[Skye]

Thank you Lucille and Tash.

I agree, a very moving article. The TV programme focussed Barbara's emotions as a carer. Although we saw the horrifying nature of Malcolm's decline, there was little insight into how he felt, apart from the expressions of his frustration.

The writer of the article, on the other hand, is suffering because she is intensely aware of her mother's pain and loneliness, and the impossibility of giving her comfort. And for me that's even more powerful.

 

[Linda Mc]

Yes, I too found this article more moving than the documentary for the very same reasons Bruce mentions.

Linda

 

[KenC]

Hi all,
Janice and I both watched this documentary last night and found it very harrowing, and disturbing.
Although we had expected it to be hard I think it hit me harder than I had thought.
We were doing a follow up on BBC Radio Newcastle this morning to talk about our experiences, this was then repeated three times during the day.
During these repeats, there were clips of last nights programme, and I must confess that I was very close to tears each time I heard it. I confess I did not want to hear it again but I was drawn to it each time.
Later this morning we were out shopping and some of the people we know, came up and said, that they had no idea what it was like to have the illness let alone what the carers went through. Some even asked why we were putting ourselves through all this, as you are telling everyone about an illness which no one really wants to know about.
My answer to that is, we have to tell everyone in the hope that people will know what it is like to have the illness, which was not self inflicted, and in the hope that some day like Barbara and Malcolm, we can educate the public and get rid of the stigma side of this illness once and forall.
Alot of people watched this documentary and were shocked to see what happens, so if nothing else this dear couple have shown the horrors of life with the illness. I have a deep respect for all carers and people like myself who have the illness, but like it or not these poor carers have a really rough life and after everything they have been through they deserve a medal as big as a frying pan.

Best Wishes and God Bless all you Carers

Ken

 

[Skye]

Best Wishes and God Bless all you Carers

Ken

Ken, God bless you too. You are doing an amazing job, and I have so much respect and admiration for you and Janice.

Love,

 

[connie]

Just read the article...........sitting here weeping.

Where will it end?

 

[Lucille]

Thanks, Tash for finding the article. The bit where he described his mother getting up to to go to the toilet in the night ... awful, awful, awful. That is loneliness.

And to Ken, thanks for posting your thoughts on the documentary. I haven't watched it yet. Didn't think I could get through it until 10.30pm and get up for work this morning with eyes like burnt holes in a blanket.

Love to you and Janice.

x

 

[nemesisis]

I agree with Mr Bell

Having both read the article and watched the documetary I have to agree

My very much loved and missed mother-in-law died from cancer 2 years ago after 2 operations and 2 courses of radiotherapy but during all that she was a pleasure to be with I would take her for her treatment every other day and she would talk to everyone else there willing them on. When she lost her hair we had such a laugh choosing her wig she said she always wanted to have long blonde hair and my father-in-law would go mad but what the hell!! when she suddenly declined she was nursed at home with all her family around and the fantastic support of the Mcmillon nurses she died in her own bed with scented candles and no pain.

In contrast my mum who has had Alzheimers for five years now and lives on her own is living in torment she does nothing but lie on her bed she doesn't like me visiting as she regards me as another care worker interfering and trying to steal from her. The carers that visit twice a day do their best to try to get to eat. change her clothes, take her medication, have a wash etc. But she is living in a state of neglect and she has no quality of life she doesn't know any family or friends hardly eats and is just wasting away.

Given the choice I would sooner die of anything but Alzheimers

 

[Mameeskye]

I have read the article and watched Malcolm and Barbara.

I have also watched my Mum decline through the last 8 years through vascular dementia and just prior to that watched my father die from cancer following diagnosis just under 5 years earlier.

I still do not know which is worse. My dad was my dad until the end, a blessing maybe..but then how to hide the tears when he confronted me with his thoughts and fears that he would not confide to my Mum, his obvious hating his life in his final year when he could no longer walk his beloved dogs and knew what it was costing Mum to keep him at home as he wished. He knew what was happening and was often scared.

My mother has fairly settled dementia now, although that has not always been so, as she slipped into it and wanted to go home. Some days she is grumpy and sad now, some days she is happy and relaxed. She may need to be fed but she has now forgotten it was any different. She has lost her embarassment and so long as her carers are gentle and kind she is unafraid. Last year she was really ill with a UTI, I was called for, we were asked who we wanted to be her undertaker, but when I asked her if she wanted to get well..she replied "yes" firmly and with conviction.

I cannot say which is worse. I have grieved/still grieve for both my parents when still alive. Maybe because Mum is the second one I am finding it easier this time, particularly as her dementia has progressed. I didn't know how I would get through it when Dad was ill and dying..yet this time I know that I can cope. I have done it before and I know that life will go on and although it will be sad I will find happiness again. Maybe it is because I have children now.

I look at my Aunt in her 80's who is crippled with arthritis, in constant pain and bored as she can no longer do thiings but still has all her faculties. IS she better off than Mum? What would I prefer?

Personally I want to go quickly..bus or massive MI..let everyone grieve once I am gone. It will be a shock and hard for some but I love them all and don't want them to live a life "on hold" for years, fearing and knowing.

 

[Canadian Joanne]

Same situation for me

My mother has AD and my aunt, her youngest sister, died of cancer 4 years ago. I spoke to my aunt less than 24 hours before she died and she was herself. We had a half hour chat. Little did I know that she would be rushed to hospital the next morning & die at 6:00 pm.

Given the choice, personally I would much prefer the cancer because my aunt was herself to the end.