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Telly addicts

Kate Garraway…..Caring for Derek

262 replies

GorgonzolaSouffle · 22/02/2022 21:56

She’s so brave making this documentary.

OP posts:
Choux · 23/02/2022 21:05

The financial burden must be huge on her. As they have assets the only help he will be getting is £89 a week attendance allowance. No pension of Derek's yet (hopefully one to come in the next few years but who knows). With the cost of carers being £16-£20 an hour it's no wonder she tries to do so much herself.

I also wonder if that is partly why she is now breaking away from breakfast tv. Daytime care is cheaper than early morning, late night and weekend care. I imagine Life Stories is filmed in regular day job hours despite everyone looking like they are on a night out. It has crossed my mind that Piers specifically handed it to her to help her out. It also means she can be around for her kids before school.

Re Derek's future I imagine another bout of Covid would hit him hard and his life expectancy must be diminished compare to his pre Covid expectancy. I wouldn't be surprised if he passes away within 10 years. The poor man is still so unwell.

The whole family is in a hellish situation yet there is so much love there. I would never judge Kate for whatever decisions she feels they need to make.

Avavlon · 23/02/2022 21:15

So much admiration, for kate, she looked emotionally and physically shattered,.
But the programme shown a light on the care system and showed what many family s go though.
I thought the children were a credit to their parents ,a lovely family ,such a tragedy ,I hope things improve for all off then.
But what ever the future holds I have totally respect for kate, and not a easy program to watch,, but a very brave descion off kates to agree to make it.

Zotter · 23/02/2022 21:15

The point Kate made about all Derek's needs being met, funded by taxpayer money, while he's in hospital, and then when he's discharged all that disappears - how can that be allowed to happen? Medical care and social care must be funded in the same way, by the same system, to provide continuity of care, whether that's in hospital, at home or in a care facility.

Successive governments until present day have not dealt with social care costs. Andy Burnham as Health Minister in 2010 wrote a white paper proposing a National Care Fund. It would be financed by a 10% levy on every person’s estate at death. All would pay a bit but it would mean no one would face catastrophic costs if they were deeply unfortunate to get a long term illness needing a lot of care.

Social care provision is poor and has got worse since 2010.

I have experience of care in someone’s home as I have been bedridden for 10 years with severe ME. I have daily care via social services direct payments scheme (brilliant scheme) where I employ 2 carers. I have no assets or savings above £6000. SS pay towards paying my carers, but I still have to make a weekly contribution from my benefits. Some people with long-term complex health needs qualify for free social care arranged and funded solely by the NHS. This is known as NHS continuing healthcare but v difficult to qualify, most is social services funded.

My weekly contribution has gone up hugely in recent years as councils so cash strapped due to govt cuts during austerity. I now have to pay £127 a week, a few years ago it was only £48 a week. Grateful for benefits but certainly less than used to be due to care costs provided at home rising so much.

Zotter · 23/02/2022 21:19

The whole family is in a hellish situation yet there is so much love there. I would never judge Kate for whatever decisions she feels they need to make.

I think exactly the same.

Radyward · 23/02/2022 21:27

Its just awful. I havent seen this -just clips.its a living hell for Derek and Kate. No end in sight. Me and my DH have enough money to live ok if this happened and could pay care. If money no object I would care for my husband til the nth degree but having to work / sort a house/ educate kids / put the game tv face on day in day out is enormous pressure. God help her and Derek

AngelinaFibres · 23/02/2022 21:47

[quote alltheapples]@Foolsrule Most people with a partner eventually become a carer or the cared for. It is almost inevitable.[/quote]
My mother said "First comes love, then comes obligation ".

BadHairDayExpert · 23/02/2022 21:59

Why has he deteriorated in the last year?
Presumably, he also had MRIs in hospital to see the bass line7starting point. Being at home meant having the kids around and contact with the familiar. If there has been tissue death (white spot matter/dementia) then presumably that was with the clotting/inflammation, rather than continuous?
So why has he appeared to disappear/be locked in/lapse more in the last 11 months if the damage has already been done rather than being continuous/worsening/degenerative? (iirc she said it was not predicted to get worse)

BadHairDayExpert · 23/02/2022 22:03

‘In terms of communication he’s gone way back from this time last year,’ a tearful Kate said. ‘He could express fears, worries, all sorts of things this time last year. Whereas now it’s “yes, no, I don’t know”.’

Teenagetrouble · 23/02/2022 23:24

Yes I wondered why he has deteriorated as it was clear to see. When he first came home he was able to read a birthday card poem clearly and say what kind of crisps he wanted but towards the end of the programme he seemed much less communicative.

stairway · 23/02/2022 23:30

Teenagetrouble my guess is that when he was in hospital he was seeing more therapists who could stimulate his brain. At home it’s just the carers and his family and the brain is just being left to deteriorate which is more likely when it’s so damaged.

Hugasauras · 23/02/2022 23:34

I wonder if there's an element of him just giving up too. Well, not giving up as a conscious decision, but they drive to survive and improve must be really tested when progress is so slow or non existent. Perhaps the realisation that coming home wasn't the miracle they might have hoped has been a factor.

When he first came home and was reading the birthday card and clearly emotional, asking for crisps, etc. I thought 'Oh he's doing really well now!' But then by the end he just seemed to be barely communicating at all Sad

Bromse · 23/02/2022 23:40

I think with him it is sometimes one step forward and two steps back. However he is trying and will continue to do so until he can either do no more or gets better. It's amazing how people do recover from all sorts of things, at least to a level where life has more quality, but there will be terrible down times. It must be so unbelievably depressing.

AutomaticMoon · 24/02/2022 00:27

@Choux Where do carers get paid £16-20 per hour? I’m a carer and we all get minimum wage, so do all the carers I know working in the community.

AutomaticMoon · 24/02/2022 00:30

@stairway

Teenagetrouble my guess is that when he was in hospital he was seeing more therapists who could stimulate his brain. At home it’s just the carers and his family and the brain is just being left to deteriorate which is more likely when it’s so damaged.
Definitely this. He needs brain stimulation and maybe hyperbaric oxygen therapy. Kate should buy him a home inflatable chamber for him, it’s been shown to be helpful for brain injury.
Thoosa · 24/02/2022 00:56

Didn’t they refer to him being in the front room in an oxygen tent at one point? Is that the same as the inflatable? Surely you can’t get home-use pressurised chambers of any description?

Bromse · 24/02/2022 01:06

We must remember that most of the time he was in hospital, he was in a coma. It's natural that he wanted to come home once he was conscious and able to make his needs known but it will still be a long haul. He has good care at home, including physical therapy, and no doubt he has out patient assessments and any changes to treatment are authorised.

With somebody like Derek it is difficult to know what to do for the best; at the moment they are exploring all avenues and trying to give him hope.

Radyward · 24/02/2022 08:18

If i was Derek living is way better than death.like he is seeing his children every day and has home life. Kate must have cried rivers at this stage I would imagine a Nursing home being on the cards at some point as a home isint a half nursinghome in. The house. The poor kids . Home turned upside down
I think kate is amazing to do anything and everything to get him home plus do all she does with help.

AlternativePerspective · 24/02/2022 08:49

It’s a matter of personal choice though isn’t it?

Obviously no-one is suggesting that someone not be given the choice whether to live or die, but certainly I believe that people who have capacity should be free to express whether or not they wish to live in certain circumstances. That is one of the right to die arguments.

I think we need to stop taking someone saying “I wouldn’t want to live like that,” to mean that they don’t think anyone should live like that. Certainly I don’t think that anyone should have to live like that if that’s not what they want, but that doesn’t mean the choice should be removed from them.

I actually have been meaning to sort out my advance directive for some time, which specifically states that I do not want to be kept alive in certain circumstances. But Derek’s choice is his to make.

Bagelsandbrie · 24/02/2022 08:55

@AlternativePerspective

It’s a matter of personal choice though isn’t it?

Obviously no-one is suggesting that someone not be given the choice whether to live or die, but certainly I believe that people who have capacity should be free to express whether or not they wish to live in certain circumstances. That is one of the right to die arguments.

I think we need to stop taking someone saying “I wouldn’t want to live like that,” to mean that they don’t think anyone should live like that. Certainly I don’t think that anyone should have to live like that if that’s not what they want, but that doesn’t mean the choice should be removed from them.

I actually have been meaning to sort out my advance directive for some time, which specifically states that I do not want to be kept alive in certain circumstances. But Derek’s choice is his to make.

This is so true.

Quality of life is a very individual and subjective.

When I watched the documentary I thought “oh he can ask for a ham sandwich and some crisps and he’s got his children hugging him, that’s wonderful” - to many people that wouldn’t be enough.

It’s a bit cheesy but the film / book “Me before you” does this very well. The love interest / carer tries to show Will that life can be good despite his disability but eventually he decides it isn’t the life he wants and goes to dignitas to die.

We need to allow people to make their own choices about their own lives. And deaths.

The4teddybears · 24/02/2022 09:40

Choux. You can only claim attendance allowance if you are of state pension age. I don’t think he is that old. It would be PIP , personal independence payment (previously called DLA ) that he would be entitled to .

cantkeepgoinganymore · 24/02/2022 10:14

Sat and cried and cried watching this last night, been a carer to my mum and sister since age 5, she sums it all up in a way I never could.

Exhaustion, loneliness, anger, terror, isolation and crippling guilt; never resting, never feeling safe or relaxed, never daring to hope that things could get better because they invariably don’t . I lie awake at night terrified of the future, night after night . Angry and wanting to scream at family and say; don’t you want to get better for me, can’t you try harder? And then guilt because it’s not their fault . So desperately hugely missing my mum and wanting her to tell me it’ll be OK or advising me or something and remembering she can’t because she’s too ill .

Endless hours of meetings and appointments and always fighting and pleading for help that always comes too little and too late .

Your house being absolute chaos and hoarding and buying shit because something somewhere makes you think you’ll feel better with a parcel .

Or worse, alcohol, eating issues or heavy reliance on medications .

By the time social work listened to me I’d had two serious nervous breakdowns and a diagnosis of CPTSD .

I don’t have many friends, I don’t do anything for myself really because when I do I feel guilty for doing it . I’m meant to be studying full time but how do you balance it all? Social work said they’d get mum care but said that would be a nursing home and how can I chuck 57 year old mum in a home?

Family try to help - now - but all that’s gone before can’t be mended, you can’t undo 30 years of trauma .

alltheapples · 24/02/2022 10:49

But most people who say they want to die if they reach a certain stage, seem to change their mind when they get there. The will to live can be very strong.

adriftabroad · 24/02/2022 11:58

She was just on 'This morning' and said...

'we will all be carers or need care at some point in our lives. Not necessarily when we are older and people need to realise that'

Certainly when I was in a coma (45) and then rehab for months and was in much the same state as Derek (I had Guillaine Barre Syndrome) except I could only move a big toe and not speak at all, sit up or feed myself... I was absolutely fine inside.

I was terrified the whole time I would be sent to a home. (Nobody knew what was wrong at that stage) They cut my long hair when I was in a coma (laughing), I was totally aware. They spoke to me as if I was mentally ill and put me in a stroke hospital. Still spoke as if I was stupid as they changed my nappies.
I was totally me and so humiliated and frustrated with this. But could not communicate.

Only the thought of my DD
(7 at the time), kept me going. Certainly not my STBExH who made it clear 'he did not sign up for this' and made it clear to all.

I'm absolutely fine now BTW! Just can't run.

This was not in the UK.

AlternativePerspective · 24/02/2022 12:03

But most people who say they want to die if they reach a certain stage, seem to change their mind when they get there. The will to live can be very strong.
so because some people change their minds we shouldn’t make the choice available at all?

It’s very clear that many people don’t change their minds. In fact there is an article in the news only this week about a right to die campaigner who went to Switzerland to die and two people who accompanied her were arrested when they came back to the UK.

if the person is able to state that they have changed their mind then there’s no problem is there? Nobody is going to make them die if they state they’ve changed their mind. But people should have the choice.

If we’re talking about DNR then there’s some argument to be had over whether resuscitation is always appropriate simply because the family think it is, and in my personal opinion no, I don’t think it is. CPR is a brutal process, and for someone who lacks any capacity e.g. someone with severe dementia is only going to be traumatised by having been through CPR and waking up in severe pain, unsure as to where or who they are, and why it hurts.

It’s obviously off topic but there comes a point when we have to question who we are keeping someone alive for. Is it really for them? Or for the people who can’t bear to lose them.

I am 100% certain that if I ended up in a situation where I can do nothing for myself and require 24 hour care and am little more than a shell to my family I don’t want to live. And if I lose capacity I want a DNR in the event I suffer a cardiac arrest. But that doesn’t mean I think that someone else shouldn’t have the right to have an alternative view for themselves, any more than I should be criticised for having mine.

Choux · 25/02/2022 20:35

[quote AutomaticMoon]@Choux Where do carers get paid £16-20 per hour? I’m a carer and we all get minimum wage, so do all the carers I know working in the community.[/quote]
My mistake @AutomaticMoon. I meant to write care costs £16-20 per hour. At least my parents does and that's in the north. I imagine the care needer pays more in London.

I also stuffed up when I said Kate would be getting attendance allowance. My parents do but I didn't realise you had to be 65+ to get it.

The point I was trying to make is their income has dropped, the costs of Derek's care is immense and the earning, bringing up the kids, organising the house and Derek's care all falls to her. She's got broad shoulders! But must find it overwhelming at times...