Documentary: Barbara & Malcolm

wendy2

Registered User
Apr 9, 2005
12
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I did watch the programme and I found it interesting and I admire and respect Barbara's wish to make the film. What a wonderful lady she must be to chose to share such personal moments for the benefit of everyone.
Yes, it did make me cry for both of them.
Does anyone have a copy of the film because my daughter intended to watch it but something happened?
best wishes
Wendy
 

icare2

Registered User
Jun 18, 2006
84
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scotland
Barbara & Malcolm

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Hello all,although it was very upsetting to watch,you must admire the courage it took for both Malcolm and Barbara to go through with this,but I would like to bring up this POINT,WHY WHY WHY!!!! did she not get more help in the earlier years coping with this at home.
As through my own experience (after a long struggle with SW department)we now get social work, and ILF funding, WE ARE NOW GETTING 8 HOURS PER DAY SEVEN DAYS A WEEK,like Barbara I have looked after my wife for the past 7 years with the help of my mostly from my daughter and 2 sons,and I can relate to most of what Barbara went through,and still am.

THE MAIN POINT I AM TRYING TO GET TO IS IF YOU WANT AND ARE ABLE TO KEEP CARING AT HOME,THERE IS HELP THERE BUT!!! YOU NEED TO PUSH VERY HARD FOR IT..
IF ANYONE NEEDS ANY HELP IN GETTING THIS HELP LET ME KNOW.. Tommy
 

Michael E

Registered User
Apr 14, 2005
619
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Ronda Spain
As I think I posted earlier I watched it and cried a river... Most importantly for me I am now better prepared for the future, as Monique's condition deteriorates.

I would very much like to show the programme to the French Sociologue in Monique's care home... There is nothing like Talking Point in France, the Alzheimer's main office and web site are not very helpful and the disease seems to carry more stigma here than in the UK... or maybe that's just my take on it..

If anybody recorded it would they be kind enough to private email me? I will be pleased to pay the postage to France and to return the copy once I have 'burned' it to DVD... It would only be for very private use and would not infringe the makers copyright..

Thanks in advance

Michael

I am being sent a copy of the programe--- many thanks - M
 
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mandyp

Registered User
Oct 20, 2004
150
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Glasgow
frederickgt:

<quote>if Anna and I ever reach such a stage,I hope that I will have the courage to give us both an overdose of paracetomol</quote>

Hi

While I fully understand where you're coming from, please consider your family before doing this, my Dad constantly says that he'll do him and Mum in if things get too bad as he'd rather do that than leave me with any more to deal with.

It scares me to death, how does Dad think I'd feel, I love them both and like everyone else here I'll take on board whatever life flings at me.

Mandy
 

mandyp

Registered User
Oct 20, 2004
150
0
Glasgow
mandyp said:
frederickgt:

if Anna and I ever reach such a stage,I hope that I will have the courage to give us both an overdose of paracetomol


Hi

While I fully understand where you're coming from, please consider your family before doing this, my Dad constantly says that he'll do him and Mum in if things get too bad as he'd rather do that than leave me with any more to deal with.

It scares me to death, how does Dad think I'd feel, I love them both and like everyone else here I'll take on board whatever life flings at me.

Mandy
 

Karola

Registered User
Jan 3, 2007
21
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Rugby
Hi Mandy

I completely understand what you mean about the family who are left behind. But, I do think it's a strange society we live in - we find it perfectly acceptable to put an ill animal or pet to sleep to prevent further suffering. However, if a person gets to the stage Malcolm was in during his last few months, we are powerless to help them, even if they expressed a wish to be released when they were mentally capable of making such a decision.
 

Lonestray

Registered User
Aug 3, 2006
236
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Hereford
Cris, I share your views. I've not watched the programme as I felt I'd been there, also it was too late for me. That may surprise some, but by the time I've got through my daily chores from 04.50am I'm too tired. I'm sure you'll understand.

Our daughter however did watch it, when asked: "What did you think?" Her reply: "You've been there Dad, it was like going back in time watching Mom slowly fade."
I'd met her at the supermarket as usual, when we got home she discussed it futher.
"There were differences, he didn't keep wanting to go home, and was violent, but like Mom he mumbled his speech. Like Mom they gave him medication without her permission. In the end he was the same as Mom in the hospital just a guant figure on a drip and oxygen mask. You remember they used swabs to moisten her mouth, you did the same when you took her home. The big difference was he could not take food or liquid it just came out of her mouth. Though you forced food into Mom's mouth against GP's advice, I also though you were wrong. I'd expected her to die in hospital and was surprised when you insisted on taking her home to die."
That day four years ago I'd taken her into the wet room on the commode ready to wash. As I wiped her bottom I received a handful of blood and she was in great pain. Rushed to A&E the doctor checked her out and X-rayed her, saying he could find nothing. He'd normally operate but she'd not survive the anaesthetic and there was nothing could be done for her. They'd hoped to place her in the Geriatric Ward. I was granted my wish to take her home to die, the rest is history.
She had to have morphine for a long period for the pain from infections from pressure sores and oral infections. It took me up to two and a half hours to get food into to her at a session. Now she can polish a much larger meal in half an hour, of course it's all mashed up.
Cris, I'm not expecting any of our grandchildren to offer help if they've seen the programme.
I've long known this is Monty Python country, hence I accept the silly things that happen.
Our grandson is home on ten days leave, seen a friend killed, just a day or so before leaving Afghanistan. He's due back this Tuesday, two of his days are spent travelling! his Mom, our daughter is married to an ex Regiment man, I'm ex RAF, two of our grand daughters' partners are Regiment men serving away 'some where' at present.
Our daughter was refused a passport, why? because I was Irish at the time of her birth at a British Military Hospital in Germany. Now she's both Irish and German with an Irish passport! Could this be because her Mom's a Geordie!
I'm still trying to solve this Alzheimer's puzzle, the road though long is less painful since I'm a sole carer, not for every one but maybe this programme will help to show SS, LAs etc the stress they cause carers by having to fight in addition to caring. Padraig
 

frederickgt

Registered User
Jun 4, 2005
124
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96
Hornchurch,Essex
Mandy,I know what you mean,but you must realise that I am myself an 80 year old pensioner,In spite of the help I receive from S/S some of which is more hindrance than help,how would like it if a strange woman came into your bedroom and tried to get you out of bed every morning/ If only the times and the personnel could be persistant it would help.One person anna could get to know would be OK but a different one every day? and any time between 6:45 and 9:45?
I get a lot of help from S/S when a bus comes 5 days a week and takes Anna to a Day Centre 5 days a week,then I can do the washing,ironing(Ihate ironing) and shopping (Now I know why women have such long arms)
Make no mistake I love Anna,it is just that I couldnt bear to see her in the same state as Malcom
Even Barbara said that at times she hated him!
In the month's readers digest there is a report on an experimental drug in the US called ALZHEMED manufactured by a company called NEUROCHEM that is on a phase 3 trial,good results are being noted Fingers crossed
Thank You talking Point
 

Michael E

Registered User
Apr 14, 2005
619
0
Ronda Spain
I got was anger that she more or less had to do this on her own and lets face it the majority of sufferers are the people who have worked all their lives paid their nhi and tax and what do they get when they need help - nothing

I think all of us identify with so much in that program...

As an ex TV hack I had to remind myself that an awful lot of editing goes on just to make the show fit into it's 50 minute slot...

I am not sure that it was ever intended to say that Barbara coped totally alone with Malcolm. Indeed there were shots of carers helping her.. I think she did get support not that it in any way diminishes the courage of her decision to keep him at home till the end.

I think at one point in a one liner she decided to take him out of a care home because she was unhappy with the treatment and she felt she did not want to bear the cost of the home - like most of us she made the decision for a multitude of reasons...

Having just committed Monique to a care home I felt all the pain of that decision coming back... one of the elements for me was I prefer to be poor (I have to find 90% of the cost) rather than give up the rest of my life to being a nurse... More to it than that of course - but certainly part of it and I was also afraid that I might end up hating Monique instead of loving the 'shell' which now represents her.

I think Barbara is a wonderful woman who is far braver than I but I also think the doco was about the illness and not necessarily about the bleak desert of non help from the social services - as others have posted there is help out there - but it still means enormous personal sacrifice to nurse somebody to the very end.

Of course AD is an under funded and not understood illness which needs more funding. The documentary was a wonderful step to help outsiders understand what it is to care full time for somebody with this horrible disease.

I am almost alone in this I know but I do think that if the sufferer has funds then I think it is acceptable to expect those funds to be used to pay for a care home rather than be left as an inheritance... Until the end comes it is a problem that can be coped with (just) at home if the relative is willing...


Michael
 

BeckyJan

Registered User
Nov 28, 2005
18,971
0
Derbyshire
if
the sufferer has funds then I think it is acceptable to expect those funds to be used to pay for a care home rather than be left as an inheritance

I agree with this but as I look around care homes etc. I do feel the terrible neglect and availability even for those of us with some money to pay. NICE have made a decision today but nowhere are there any inroads into helping carers manage their lives (paid or unpaid).

I opted out of the documentary because David would be watching with me. He feels bad enough about his so called 'burden' on me so why labour it more.

This evening I feel mixed up and sad about the whole situation - God knows how you who watched the programme feel!!!

Take care all Beckyjan
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
BeckyJan said:
This evening I feel mixed up and sad about the whole situation - God knows how you who watched the programme feel!!!

Mixed up and sad too, BeckyJan.

On the one hand, I fear that John will die soon, because of the article I read. On the other hand I fear that he won't die soon, and we will have to go through the same horrors as Malcolm and Barbara.

On the one hand, I would love to have a week's break. On the other hand I fear what that would do to John and to our relationship.

On the one hand I'm upset that John and I have not been able to have a conversation, or share a joke, for many years. On the other hand I thank God that I have never had to deal with aggression or violence.

On the one hand I thank God that John is still physically fit and well. On the other hand I fear this will only prolong our suffering.

Yes, mixed up and sad describes it pretty well. :(

Love and hugs,
 

christine_batch

Registered User
Jul 31, 2007
3,387
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Buckinghamshire
Family

As a Mother to 4 children and Grandmother to 6. We are a very close family and there is no way that I would take my life. As I am disabled over the years with daily pain temptation was there in the early stages but the though it would do to my children and granchildren stopped me. I do feel so sorry for people who are thinking along those lines.
Christine
 

Nutty Nan

Registered User
Nov 2, 2003
801
0
Buckinghamshire
One person with Alzheimer's

Skye, your lines hit the nail on the head - mixed up and very sad!

I can't get Malcolm and Barbara out of my mind.
I had watched their first programme and thought I would cope with this one. Over 7 years of caring for my husband have left me with few illusions. However ...... the shock and horror of seeing how tenaciously a ravaged body can hang on to life will be with me for a long time. Barbara's amazing love and dedication shone through the whole programme.

On a selfish level, I had hoped to get a little more insight into how they coped in practical terms with the stages between 1999 and Malcolm's eventual complete lack of mobility. We are approaching those problems with trepidation, and I have no idea how we will be able to continue coping at home once that happens.
On the other hand, the 'gap' in the report is allowing me to distance myself a little from Malcolm's end stage. I can tell myself it may be easier for us / may not happen to us (just like you can turn away from accidents/tragedies/illnesses when they don't directly touch your own life and family).
The "one Alzheimer sufferer" who is sleeping near me as I write this thankfully can still light up my day with his amazing smile. I refuse to ponder on the future, when I will have to make do without this smile .......
 

Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
Nutty Nan said:
. I refuse to ponder on the future, when I will have to make do without this smile .......

Nan, I hope your husband`s smile is the last thing he loses.

Love xx