Mum, Dad, Alzheimer's & Me Channel 4

[DianeB]

your not being creul at all. I am getting to the point where I can't cope seeing Mum suffering, let alone the internal emotional distress we are all going through as well. I really don't ever want my loved ones to ever have to see me like I am seeing Mum, in fact so much so if there was anything I could do now to prevent it I would.

 

[sue38]

Maggie,

You're not being cruel at all. You have done an incredible job caring for your mother, but there may come a time when you can't care for her at home. Her needs, and yours, may be better served in a care home setting.

Don't rush any decisions. You will know when the time is right.

Much love,

 

[sumosumo]

Fiona Philips

She raised a few points and I agree, she was brave admitting a few feelings that we have but perhaps bury as we rarely have anyone to offload to who truly can understand (eg friends). They can listen but they cannot relate.

I didn't agree from the imagery shown that her dad lived in 'squalor'; that was palacial compared to what my mother is in!

The fact is, the elderly suffering mental health illnesses / problems and children are at the bottom of the pile when it comes to attention and funding and I don't see that changing in the short term. The common factor is that the individuals are not in a position to talk for themselves. I have tried for THREE years to get a social worker to visit my mother in her own home. Because mum says "no" and has "human rights" they have not come in but neither have they tried. They know she has me and therefore she is not priority to them; the reality is they know she will not be left and therefore not high risk! They don't care if I have a nervous breakdown .. so what? I am convinced that is how it works! If they know there's family they leave you to it.

I am aware my thread has cynical tone but I am fed-up, disheartened and depressed about my own future. I have two children, an uncle and auntie (aunt blind with dementia) - both approaching 90, who I also have to see to (they have no children; aunt is mum's sister).

I would LOVE to know how much longer this is going to continue. At least then the knowledge may give strength to continue with the thought that one day life will return to me and my family.

 

[keane]

Programme repeat

Hi folks

Just in case you missed it and can't access it online, it is being repeated on Channel 4 at about 3am Monday morning - you may want to record it/ Sky plus it....

It's well worth watching - I especially thought that she showed the massive impact this disease has on families. It takes over your life. I don't think that other people understand that. Friends ask me about mum and I just say fine. They say things like, "At least she's not aware of what is going on. She always seems really happy." I know it's not their fault but I want to scream at them.
xxx

 

[Margarita]

At least then the knowledge may give strength to continue with the thought that one day life will return to me and my family.

I have wonder that also , 7 years on now
When I was out with one of my daughter on Monday , I ask her what wrong; she tells me I do not want to know. So I press her on it she tell me “she fed up of listening to my problems “ I did take offence in her saying that , while she tell me “ see I told you , you do not want to know “ . Life if not black white I tell her. My problem as she puts it , in what she keep listening to is about is my mother .

They are just as fed up as I am , wondering when, where its all going to end .

Thank you both Diane, Sue . Sue I shall try not to , rush any decisions . I just email the social worker, as I could not get hold of her today .

Because mum says "no" and has "human rights" they have not come in but neither have they tried.

I said to my mother " don't scream so much " my mother tell me " I am a human I have a right "

Its really all about " In they best interest "

My psychologist phone me today , tell me I miss the appointment, but its OK he feel that I am OK now so don't need another appointment ( it was my last appointment).

I had a good talk to him on the phone , he know and I know where my stresses are coming from, mum symptoms, thank - god I recognise that , because I can get a rage of anger don’t know how to channel it , have not felt that anger in a long time so just Cry a little. Not so much as before , feel a bit better .

He tell me about " best interest " Mental health act , its all in there " best interest " . So I email Social worker , that its in my mother " best interest not to live with me " So Social worker can intemperate that in any way she feel like .


I have tried day centre, respite all they do is unstable mum symptoms make them worse, and my mother is at a stage she needs stability of one environment all the time. So I email that also to social worker.

I personally believe my mother at a stage that she does not know what is her own best interest. Some day I just can't believe what happing to my mother brain, that such a thing disease existed , till I experience it, seem for me that the way life flow.

 

[BeckyJan]

I have read your post, Margarita, and wanted to say 'thinking about you' as you seem so sad. It is hard and maybe you have some difficult decisions to make. Everyone on TP is behind you as you care so much for your Mum.

Love Jan

 

[Grannie G]

At last I`ve been able to watch the programme

I agree with everyone how well done it was.

But I was very upset to see Fiona`s father wandering round his home, lost and alone, and wonder why so much importance is put on keeping those with dementia in their own homes for as long as possible.

I can understand those living with partners or children being kept at home as long as possible. They have constant supervision, company and are kept safe.

But those living alone, at the stage Fiona`s father is at, seem so vulnerable, I don`t see the advantage, as long as a good care home can be found.

Even with a good care package in place, he scalded himself, cannot make himself a hot meal, cannot find anything, is at risk [the incident with the television looked dreadful] and seems very lonely.

I`m not judging Fiona, just passing anopinion.

 

[lesmisralbles]

But I was very upset to see Fiona`s father wandering round his home, lost and alone, and wonder why so much importance is put on keeping those with dementia in their own homes for as long as possible.

I agree.
Lost and alone.

It is bad enough being lost, but alone as well.

BarbX

 

[Brucie]

But those living alone, at the stage Fiona`s father is at, seem so vulnerable, I don`t see the advantage, as long as a good care home can be found.

I'd like Fiona to make a second programme that looks at what care homes have to offer, and not offer.

why so much importance is put on keeping those with dementia in their own homes for as long as possible

I think it is an emotional thing, heart over head, and quite right too.

There is also fear of a loved one being placed in the care of strangers, and guilt at not being able to provide for them, and fear of the costs.

However, there also has to be a realisation of the best interests of the person being cared for around the clock, coupled with an understanding of the stage they are at and their needs. Plus of course a realistic appraisal of what the alternative is, and how caring at home is impinging on the lives of family - or more likely, on the member of the family who is doing the brunt of the job.

If it was all easy, we wouldn't need to talk about it......

 

[Christinec]

I also watched and ended up in floods of tears. it is so good that the subject was raised and well done to Fiona.

Felt very guilty at all the pre publicity as it said she was stopping work to care for her Dad although when I listened to her being interviewed she made it very clear she was still working quite a bit but had given up one job. Media misreporting? Would some of the media really like to ensure all women gave up there outside lives and stayed at home?

Also and I actually felt it might offend others on TP and possibly Fiona to say this but my other reaction was that her Dad was on his own so much and affected so badly by the disease that at least in a good home he would have the 24/7 support that I felt he so clearly needed.

I think we all resist the home option because it is so hard to accept that someone is at a stage where it is almost impossible for the family (often one person) to cope and that psychologically accepting residential care is needed is accepting how much the disease has progressed. If all homes were good homes and there were better very sheltered options perhaps it would be easier to accept this and there would be less guilt.

Brave of Fiona to admit she had thought of the pillow over the head. She is not the only one. I could never do it but I will not let my children see me the way my Mum is now if I can possibly help it.

 

[ginger]

Whilst watching this programme, I relived every moment I spent with my late mother. The funny times - the frustration - the sadness. My mother had AD for fourteen years, at the beginning I said 'my mum will never go into a nursing home'. Did I make this statement because I felt guilty that I would no longer be the primary carer? It took 7 years before I realised that I could not provide the specialist care my mother needed. The decision to look into residential care was heartbreaking but on reflection the correct one for my dear mother. I found an excellent nursing home where she lived for the last 7 years of her life, and even though she never recognised me for those 7 years we spent many happy hours together and I cherish those times so much.

 

[Tender Face]

....and wonder why so much importance is put on keeping those with dementia in their own homes for as long as possible.

Because it is their wish - their right if that is what they wish - in spite of the nervous breakdowns carers might have about their safety .... it is not for us to choose ...?

Unless we negate their rights to Human Rights simply because they can no longer express them as eloquently as they might have done previously?

Karen, x

 

[lesmisralbles]

I admit, I do not know why you are all going on so much

Let it be.
Life is short.
Let go now.
Barb X

 

[lesmisralbles]

And Bruce/ Not Brucie.

Lighten up a little.
I mean that with the greatest respect.
Barb XX
PS You are always so precise.
So, cold and to the point.
Let some emotion in.

JUST MY OPPINION

 

[Grannie G]

Because it is their wish - their right if that is what they wish - in spite of the nervous breakdowns carers might have about their safety .... it is not for us to choose ...?
x

It might have been their wish when they were able to make a logical and rational decision, but once an EPA is registered that in itself says that decision could be irrational, illogical , inappropriate and unsustainable.

The two women living with their husbands were not left floundering, wandering round an empty home not knowing what to do with themselves. They were supervised at all times, so were safe and had company.

I know how painful it is for children who have tried their best to care for parents, respecting their wish not to be `put` in a home and am not casting personal criticism against anyone. I have been in this position myself.

I just found scenes of Fiona`s father wandering aimlessly round his flat, nearly electrocuting himself on the television, unable to make himself a hot snack, very painful and upsetting.

 

[cooja]

Watch it online

I have just watched Fiona's programme and feel so saddened that so little is done by the government and services to help people with this condition.

If anyone has not seen it, you can watch it online using the link below (sorry if this has already been posted)

I just hope that this show shames those responsible to start doing more, not only for sufferers, but also for carers!

http://www.channel4.com/watch_online/

 

[singring57]

I started to watch the programme but got very upset, mum is in the early stages of Vascular dementia,and it upset me rather a lot. I will watch the rest of it,just need to pluck up courage.

I posted a thread a couple of weeks ago re looking into moving mum to another care home as the one's shes in is very good but not reg for dementia, but I couldn't find one I really liked and the one she is in is very good, so I had a talk with them and they are going to make some changes so mum can stay for as long as possible, I would like to thank all those who offered advise to me. Thank You. jx

 

[Willowgill]

My husband and I watched this and also found it upsetting. The similarities between Fiona's father and my own were too close for comfort - the only difference being that mine only lives round the corner and is condiderably older so unable now to go far on his own and also still has my mum with him, albeit she is probably worse than him now. I wonder if anyone has ever looked into the statistics of both parents developing dementia and whether this means their offspring are more at risk - it is definitely something which crosses my mind on a nearly daily basis. Also Fiona's father was aware that her mum had had AZ - did he realise he now had the same? Hopefully not. I don't know how difficult it must be to try and juggle looking after a family and an elderly relative with dementia - my family are long gone but I know how hard it is to try and juggle home life and a full time job with care - I feel so sorry for her and all those with young children.

 

[JPG1]

Hello Willowgill,

I also noticed that Fiona’s father was aware that his wife, Fiona’s Mum, had AZ and we wondered whether he realised that he too had dementia. But for some reason, it wasn’t distressing, and that is good.

I guess that the statistics of both parents developing dementia may be along the lines of the questions we ask if both parents developed cancer, or a history of strokes, or arthritis, or having both died as a result of a heart attack. We are just left wondering, asking the questions, pondering whether it may happen to us too. The secret of life remains a secret.

The difficulties of trying to juggle looking after an elderly relative with dementia and the rest of your life-demands are perhaps the same, no matter what the other demands of your own life may be. The younger you are the more likely you are to have young children; the older you are the more likely you are to have no young children, but then you may have less strength, less energy, less support.

I really don’t know. All I can say is that dementia - in whatever form - destroys life, and destroys more than one life. I only wish that our rich country could wake up to the fact that … your country needs you, because tomorrow it could be you.

 

[margaret101]

we wondered whether he realised that he too had dementia. But for some reason, it wasn’t distressing, and that is good.


My Husband Bill and our friend Lionel both with
Alzheimzers, they would sit and talk to each other
about how they felt and how they were copeing
Connie and I were the ones who got upset listening to them
Lv margaret