Documentary: Barbara & Malcolm

[Brucie]

Moderator note: I've edited the title of this thread so that it is absolutely clear to anyone new coming to TP what it is about, and where the programme can be discussed.

I have also moved it to the Raising Awareness area as the issues concerned will not be confined to Young Onset Dementia.

Brucie

 

[Brucie]

Moderator note: I have merged a post from Petrus that was placed in a different area, but with the same subject, into this thread.

Because the merged threads are listed in order of time of posting, you may wish to look back up the thread to read it, as other posts have been made since.

 

[connie]

Just my thoughts.......

I watched the documentary last night, and was fine for the first hour and ten mins.
This was because it was the re-run of Malcom & Barbara's journey up to 1999.

I was shocked to see just how Malcolm had deteriated over the last years.
My dear Lionel is in the condition of being totally dependant and being lifted by hoist etc. bed to chair. I have commented in my thread on him how thin he is.....

I take it all back, he looks hale & hearty compared to Malcolm.. I don't really now how I feel now...............I am not sorry I watched.............I think more should be done to publicise just how this desease can go...............but I really thought I knew it all.

Not so sure now.....Still to paraphrase Joanne's tag line:
When you have seen one person with dementia, you have seen one person.

Hope that holds true. (Bless you Barbara)

 

[mel]

I watched it last night too ......wondered whether to or not.....but did anyway.

I also found it extremely moving and harrowing.........and yet, having lost my mum in february, strangely comforting and perhaps understand a little better now why I have found it so hard to move on........

Mum's behaviour was so similar to Malcoms.......the "planned escapes", the problems with washing, dressing,toileting etc........and due to that I felt as if I understood the illness better........it just wasn't my mum hitting out at me.....it's taken me a long time to accept that!!!

Karen.....I also found the anxiety of Malcolms mother very upsetting ......to watch your son go through it must be unbearable.

Like Connie....i urge all of you who are living through this nightmare to remember joannes mantra.....2when you have seen one person with dementia you have seen one person..........

Love xx

 

[Skye]

Like you, Connie, I was shocked when I saw Malcolm in the end stages. I know it would be awful, but had no idea how awful. I could not have commented last night.

I hope the publicity will make more people aware of what we cope with every day. From a personal point of view, I hope the people who think that because John looks so well, and smiles sweetly when they visit, will realise that my life is not a bowl of cherries. And I hope that anyone inclined to think less of me because of Tuesday's article will also have more understanding.

I hope that it will have frightened our politicians into realising that AD can strike anywhere, and no-one is immune. I hope they will realise that money for research is needed now.

Ken, respect! It was brave of you to watch the programme with Janice. But remember that Malcolm was just one case of AD. None of us can foretell our future. I don't think any of us will ever be able to get those scenes out of our heads, but we also have to remember that each endgame will be different.

Love and hugs to all who are upset,

 

[Grannie G]

. And I hope that anyone inclined to think less of me because of Tuesday's article will also have more understanding.
,

Hazel, I`m sure that is not going to happen.

Love xx

 

[chip]

I too watched it, and could relate to doing the same. I also noted the lack of carers and help she got - at least she had friends and family - It was very interesting on what was said about the cost of getting carers in and what happened when he went into hospital respite for a week and came out worse. The fact as well he retained his music until very late could be because he was encouraged. I was told it was important to keep stimulation up on their interests as they can retain it for longer and it helps. I have seen my husband go from a person interested in things even going on a plane for a day trip to london at the end of Feb this year, throwing and catching balls, going out for walks and involed in things and very happy to a person with no interest sitting around can only walk. He was put into hospital where non of these things were done he was left to sit around and wander around the ward. OT came in now and again but he used to sit looking out the window wanting to go out. He conplained as well about - these things- incontinance pads that they put on just incase when he wasn't incontinant. 4 months later he is. It does seem that encoraging them keeps skills up, but with the un caring treatment they seem to get in this system that doesn't understand they are making them deterioate faster

 

[Linda Mc]

I watched last night after my husband had gone to bed.

I had not seen the earlier programme and found it very sensitive and apart from the sadness of Malcolm's death was surprised I was not upset as I had expected to be overcome with emotion.

Have I hardened myself to the facts or have I just finally accepted the condition?

I think Barbara, Malcolm and their family took a very brave decision allowing the programme to be made and letting the rest of the public see the illness as it really is for sufferer, carer and family alike. I hope it raises awareness that it is not just older people that are at risk.

Linda

 

[Brucie]

For related information, please also see the thread http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?p=87879&posted=1#post87879

 

[Tender Face]

Well, there was me thinking I was done with crying for a few hours and I've just read the Telegraph link and now I'm starting all over again .....

After the usual knee-jerk reactions last night, confess I have been mulling much today on what had greatest impact on me. I arranged last night for me to watch the programme on my own - mostly to proetct my son from walking in on it - but how grateful I am now that my husband was charged with sonny's care and didn't watch with me.

Malcolm's end reminded me exactly of my father-in-law in his last days ..... especially of my mother-in-law in her last days - and my own grandmother many years ago in her last days ..... Each of them died from terminal cancers, their bodies wasted away to almost nothing, but their minds only 'gone' in the very final stages (hours/days) due to the effects of the morphine being administered .....

Sorry to be so graphic .... but I'm struggling with 'If (terminal) cancers and Alzheimers ultimately effect the same ending' why are they - and those who care for the sufferers - treated so differently?

Sorry to think out loud ...

Karen,

PS: Hazel, Tuesday's article?

 

[Skye]

PS: Hazel, Tuesday's article?

http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=7389

(post 15 onwards).

very painful, still.

 

[Karola]

I don't often post anything to these forums but I do find it such a comfort that others feel the same way. My Dad was quite upset by the seemingly large number of trailers for the documentary. His thoughts were that he lives the caring role 24/7 so watching it was not healthy.

I too was determined not to watch itbut I kept asking myself 'was is it better to have an idea of what might be ahead for Mum or will I regret it and wish I was still in a state of ignorance'. In the end I did turn on ITV and I found the final scenes very disturbing. I am not sure if I am sorry I saw it or not yet, everything is still processing at the moment. I think the biggest shock to me was that Mum has still got so much more to go through before she has any peace.

I think that Barbara and her family were incredibly brave for allowing the cameras to follow Malcolm and their story. I hope it means that some people have a better understanding of the impact this disease has on everyone around them.

I certainly identified with the section where Barbara talked about thier friends and how your find out who your true friends are in that situation. I am incredibly grateful for the friends we do have and treasure their support more than I did beforehand.

 

[Hutchinson]

I watched the documentary last night and i must admit that i found it very distressing, it is terrible watching a person waste away like that and turn into someone who is totally lifeless and cannot do anything, i felt so sorry for him and i have alot of sympathy for anyone who has to go through that, it's such a terrible disease and i really hope one day soon a cure will be found.

With me feeling as i am right now i thought even though i am only in my early 30's, i thought if my memory problems are a result of dementia then that could be happening to me very soon, it frightened the life out of me watching it as i thought i would never ever want to be like that.

 

[sue38]

I did watch the documentary, although my sister decided not to as she thought it would have been too distressing. I think it was a personal decision to watch or not to watch and I am glad that I did, however painful it was.

I have talked to a couple of colleagues today who did watch and who have no experience of dementia. Essentially they found the film harrowing and were disgusted at the lack of support available to carers.

One thing that came up was how thin Malcolm was at the end and one colleague had the impression that this was a result of Barbara's decision to care for him at home rather than admit him to hospital. I explained that this was not a lack of care but more likely due to the effect of the disease that Malcolm was unable to swallow combined with the body being unable to digest food. I don't think this was explained in the film.

On a lighter note we laughed about the part of the film when Barbara talked about having a gin and tonic.. or two...or three, when Malcolm was in bed. She said that she found the tonic refreshing and the interviewer asked her why she felt the need to add gin. We chorused 'WHAT A STUPID QUESTION!!!'

I have a huge respect for Barbara's bravery. honesty and strength and I hope that by showing this film on prime time TV more people will understand the effects of this dreadful disease.

 

[frederickgt]

Yes I watched itmust say it terrifies me to thinkthat my Anna could reach such a conditionMy equipment let me down,as I was going to record it,and watch ot again and again.
Towards the latter stages 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

 

[nemesisis]

I was in two minds to watch

Like all of you I was in two minds to watch or not but then I thought well if Margaret can look after Malcome for 15 years the least I can do is respect her wishes and watch. It was sad but the overall feeling 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
This is a horrible condition and as Margaret said carers save this goverment billions of pounds. Dignity for the Elderly they deserve it.

 

[icare2]

Malcolm and Barbara

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

 

[Grannie G]

Thank you Tommy.

I don`t need help yet, but I have made a note and will contact you in the future when I need to, if that`s all right.

Love xx

 

[fearful fiona]

Yes I was in two minds too but did watch it and harrowing it was. A film about very brave people and thank you to them for bringing to the public attention as much as they could about this terrible disease.

Yes I smiled about the "gin and tonic" story, but wondered if anyone had told Barbara about Talking Point. That's what keeps us all going and it's a dreadful shame if someone in need doesn't have access to it.

.... and of course one can always have that G and T while "Talking Pointing" (is that a verb, not sure?)

 

[cris]

I have read peoples posting and let me say here that I understand & respect everyone's choice whether to watch or not. I did watch it. Susan did not. I would not of let her had she even known about it.
My mum watched it even though she was reluctant and knew it would distress her. I have a daughter coming today for a few hours, not seen her for a few weeks, but I bet she did not watch it. If she did, she may understand what I do every day and may consider helping me out once in a while.
BUT we need more people to be better informed of this terrible disease. I bet more know about AIDS and I am not saying it is not terrible but in the majority it is preventable (I stand to be corrected on that). Dementia is not (currently) preventable.
I would like to think that a bright young person watches the programme and thinks "gosh if I were a chemist / research scientist I might help find a cure."
Maybe a social worker who has no experience of this watches and thinks "Christ is that what these carers have to do and put up with."
Maybe Mr Brown who promised millions of pounds months ago watches and thinks "oh dear, enough spin I should really allocate something. I found enough for Iraq and Afghanistan." My respite group have cut what they do for Susan, because charitable donations have dried up. Seems it is also harder to get lottery funding because of 2012 Olympics - that I cannot confirm.
But above all else I want to be aware and knowledgeable of what the future holds. (I do anyway my MIL had it) If I do not know how can I make an educated decision of the best course of treatment and care for Susan. Involved outsiders will base their decision on what the boss says, and they will say we have no money or beds or room.
cris
the views expressed are mine - I may regret them later.
ps I did like the G&T bit, but also where the shoes were laid out and the left foot crosses over to the right shoe. Brilliant. That's what Susan does.