Kate Garraway…..Caring for Derek

[GorgonzolaSouffle]

She’s so brave making this documentary.

I’ve just watched it. I’m glad people felt uncomfortable watching it because for so many that’s the reality of life as a carer. I’m one of the 6.5 million carers caring for my two severely disabled children. It’s very hard.

I think for Kate as a carer it’s a journey for her as well. With my youngest we tried all sorts of therapy before I reached the point of acceptance. That she is what she is and she may make progress but she may not and that is very hard when you’re staring into years of caring. You want to believe it gets better. You need hope.

I thank Kate for sharing their lives with the public. Her children seemed wonderful and you could see how loved Derek is. His relationship with his son was very emotional to watch.

@BearOfEasttown I agree. My husband passed away, but I have a good friend who is still living this life with her husband after a car accident and stroke over a decade later and it is unbelievably stressful, he is slightly mobile but is brain damaged, so trying to keep him safe, and get any amount of sensible continuity of care is impossible, she has had literally 100's of carers over the years, whoever is available and her care package has been cut to the bone. Meanwhile, she has to work full-time to pay for the family and care for her older kids (luckily no longer at home). I want to cry for her every time I see her, as I've been there, I've lived this life, and now I don't and I'm not ashamed to thank god I don't either. The support, money, care packages are NOT there to make this a liveable way of life, which is why it's so important to see what caring for people looks like on TV. And Kate is relatively wealthy!

What concerns me is that he did express the desire not to go on in the first documentary. I wonder to what extent his views have been sought since. Ideally, he should have a say on DNR, on care setting, etc. It’s very, very difficult because she’s doing what most of us would instinctively want to do - and what women especially are socialised to do; To rescue and caretake and keep the plates spinning, plus pay for it all. I hope, for both their sakes, they keep the arrangements under constant review.

I though it was a good programme , it wasnt a celeb in a show home , it didn't show effortless care . It was showing the real struggle she has in caring for her family and keeping her head above the water, despite being better off than most . It's a struggle that is going on up and down the country be it covid , stroke , accident or disabilty from birth .

[quote FarFarFarAndAway]@BearOfEasttown I agree. My husband passed away, but I have a good friend who is still living this life with her husband after a car accident and stroke over a decade later and it is unbelievably stressful, he is slightly mobile but is brain damaged, so trying to keep him safe, and get any amount of sensible continuity of care is impossible, she has had literally 100's of carers over the years, whoever is available and her care package has been cut to the bone. Meanwhile, she has to work full-time to pay for the family and care for her older kids (luckily no longer at home). I want to cry for her every time I see her, as I've been there, I've lived this life, and now I don't and I'm not ashamed to thank god I don't either. The support, money, care packages are NOT there to make this a liveable way of life, which is why it's so important to see what caring for people looks like on TV. And Kate is relatively wealthy![/quote]
for you

and

for your friend.

This documentary was so heartbreaking. I just can’t understand how Kate has the energy to continue like this

My dad was broadly in a similar state as derek due to dementia and then a stroke. A few months in a care home has worked wonders - is walking again, and many other achievements that we could not have managed independently with carers.

However his top of the range care home costs 2k a week - this is simply not an option for most people and the care is hugely different from what most people would experience. For example my dad has daily physio Kate simply won’t have the cash for all that on top of raising children etc

As usual everything comes down to money, sadly.

Her children were a total credit to her.

I didn't watch it. As someone who worked in care, I've always found the whole consent issue very unsettling.

One of my former clients was a young man in his 40s who had been paralysed from the neck down in a devastating freak accident. He was dead by his early 50s and his wife horrifically not long after from ...... leaving their teenagers without parents. Making a TV show out of the sheer horror of living with someone so profoundly damaged isn't entertainment in my humble opinion.

Making a TV show out of the sheer horror of living with someone so profoundly damaged isn't entertainment in my humble opinion

I doubt it was supposed to be "entertainment".
Not all TV is "entertainment" - a lot of it is educational and informative.

Mixed feelings about this. I didn't see all of it but ...

I absolutely detest exploitative TV. On the other hand, Kate and Derek have found themselves in the most intolerable situation which is beyond unfair for them and their DC. And she needs to make money and she is raising a lot of valuable awareness about caring in the UK....or lack of caring is probably more accurate.

It's morally wrong isn't it? That as a society we leave people to struggle alone like this. Just think what good the £4.3 billion could do that the Government (allegedly) allowed to be frittered away on fraud. The intensity and relentlessness of the task makes this situation beyond most people's capabilities.

Having had some experience of a family member with vascular dementia, who very much wanted to live despite their poor quality of life, I didn't understand some of the programme: I am no expert but those brain scans to me looked pretty grim. Surely Derek must have already been scanned on the NHS? I know Covid is an unknown quantity but surely Kate must have been advised as to whether there was any likelihood of Derek coming back from this? Not just whether he will, but whether it's physically possible for the brain to recover. I am suspicious of the Mexican facility. I expected a bit more from a doctor who was meant to be one of a handful in the world who are experts in Covid brain damage.
I didn't understand the laundry situation either, as there are ways of making that a lot better. Our professional carers changed the bed twice a day with our family member in it. It was amazing to watch actually.

Overall though a very sobering programme. I thought it was almost designed to say "don't hate me if I decide that Derek has to go in to a facility". I genuinely think that's a hard realisation for her that "it's not sustainable in the long term" and she wanted to make it work at home so I hope no one would blame her, especially as she has two children to prioritize and her work and that is fairly demanding just on its own I imagine when your family has been through such a dreadful ordeal. Very, very tough situation that no one should judge unless they have been there and done it themselves.

[quote alltheapples]@TravellingFrom the point being made is most people do want to live. I have cared for someone terminally ill who said at every stage - when I can no longer do x I want to die. When I can no longer do y I want to die. At each stage they changed their mind.[/quote]
Yes this was our experience too. And this is why a living will isn't much help as circumstances change and wishes may change too.

Making a TV show out of the sheer horror of living with someone so profoundly damaged isn't entertainment in my humble opinion what? We just hide away the fact that there are people living like this?

Of course it’s not entertainment, and the reality is that people are more likely to watch it because Kate is known to the public. if you made the same kind of documentary about Fred’ and his wife down the road you wouldn’t get nearly the kind of audience, because people just aren’t interested in other people’s living arrangements.

But Kate and derek are representative of a reality for thousands of people.

I did wonder something though.

If per chance Derek were to make a full recovery, isn’t their relationship lost anyway? What they had has gone. Even if he were to recover, surely that dynamic has changed irreversibly anyway?

Would it be more likely that if he recovered they would end up splitting up anyway because things would just never be the same again?

AlternativePerspective or perhaps the opposite might happen - what they have been through could bring them closer than ever. She clearly loves him very much and they have a home and children together.

I often feel on Mumsnet that people are quick to suggest that people should just walk away from relationships whereas in real life I find that many people stick things out through the bad times and the good, for all sorts of reasons.

So many people seem quick to write off Derek's life as not worth living but I saw real joy in his face at being with his family even if his life is so changed. And they all clearly love him just as much as before.

I’ve just been watching this and it’s very clear Derek wants to do it, he’s very clearly consenting to being filmed and he can speak - albeit quietly- clearly. So everyone out there saying Kate is wrong to put him out there like this / it should be kept private etc clearly haven’t watched the programme. The consent is there and is valid.

@AlternativePerspective In 2019 my husband became unexpectedly ill and suffered brain damage. He has gone from being a vibrant family man and professional worker to being a shell of himself. I am now his full time carer and our relationship has totally changed. I've become a "mother figure" to him, instead of a wife. We had to sell our beautiful home due to the financial impact of his illness and the responsibility for running everything is now mine alone. I darent think about the future of our marriage, I just have to take it a day at a time. I'm certainly not speaking for Kate or anyone else in a similar position, but the personal care I've had to provide for him means, I, personally, find it difficult to see him in a sexual way now. I can't imagine ever having a sexual relationship with him again, even if he suddenly became well and was capable of it, which is extremely unlikely. Our relationship has totally changed. I can't help but look at him differently. I'm only in my early fifties and it's scary to think of the years ahead. Is this it for me now? I apologise as I probably sound really selfish and I'd never say these things to anyone IRL.

Horrendous situation. You don’t get a carers allowance if you have savings either.

I doubt Kate will be entitled to a carers alllowance.

[quote MRSAHILL]@AlternativePerspective In 2019 my husband became unexpectedly ill and suffered brain damage. He has gone from being a vibrant family man and professional worker to being a shell of himself. I am now his full time carer and our relationship has totally changed. I've become a "mother figure" to him, instead of a wife. We had to sell our beautiful home due to the financial impact of his illness and the responsibility for running everything is now mine alone. I darent think about the future of our marriage, I just have to take it a day at a time. I'm certainly not speaking for Kate or anyone else in a similar position, but the personal care I've had to provide for him means, I, personally, find it difficult to see him in a sexual way now. I can't imagine ever having a sexual relationship with him again, even if he suddenly became well and was capable of it, which is extremely unlikely. Our relationship has totally changed. I can't help but look at him differently. I'm only in my early fifties and it's scary to think of the years ahead. Is this it for me now? I apologise as I probably sound really selfish and I'd never say these things to anyone IRL. [/quote]
You do not sound at all selfish. It is an extremely difficult situation.

It's morally wrong isn't it? That as a society we leave people to struggle alone like this. Just think what good the £4.3 billion could do that the Government (allegedly) allowed to be frittered away on fraud. The intensity and relentlessness of the task makes this situation beyond most people's capabilities.

Yeah - this is really heartbreaking. I think the whole pandemic showed that the govt can access huge amounts of money at the drop of a hat when it needs to, so why is care not funded properly?

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.

Did they explain what degree of brain damage he has? He clearly knew who they all were. He could clearly understand what was being said to him and could follow instructions. He read his birthday card message without hesitation. Does his lucidity come and go? He certainly looked spaced out a lot of the time but whenever Kate spoke to him, he acknowledged her. Is that what vascular dementia is? The faculties gradually disappearing but often fully aware and lucid?

How the hell did she get him on a plane to Mexico? How was he cared for during a long flight?

One final question. We saw him eating a sandwich and crisps at one point. Elsewhere Kate talks about preparing a “feed”. Is he tube fed with occasional snacks by mouth? Why would that be?

Sorry, a lot of my questions are just curiosity but I’m genuinely trying to understand their situation. God, when she said he fell and she couldn’t lift him back up and had to send her son into the street to get a friend’s dad to help, that really hit me. The awful vulnerability.

I often feel on Mumsnet that people are quick to suggest that people should just walk away from relationships whereas in real life I find that many people stick things out through the bad times and the good, for all sorts of reasons. or they stay because people are judged if they don’t.

Nobody is saying that Kate or anyone else in the same situation should walk away, but people should feel permitted to if they no longer feel they can live that life any more. Even if walking away means putting someone into a care facility so they can have specialist care and the family can have a semblance of normal life.

In 2019 my husband became unexpectedly ill and suffered brain damage. He has gone from being a vibrant family man and professional worker to being a shell of himself. I am now his full time carer and our relationship has totally changed. I've become a "mother figure" to him, instead of a wife. We had to sell our beautiful home due to the financial impact of his illness and the responsibility for running everything is now mine alone. I darent think about the future of our marriage, I just have to take it a day at a time. I'm certainly not speaking for Kate or anyone else in a similar position, but the personal care I've had to provide for him means, I, personally, find it difficult to see him in a sexual way now. I can't imagine ever having a sexual relationship with him again, even if he suddenly became well and was capable of it, which is extremely unlikely. Our relationship has totally changed. I can't help but look at him differently. I'm only in my early fifties and it's scary to think of the years ahead. Is this it for me now? I apologise as I probably sound really selfish and I'd never say these things to anyone IRL. no, you’re not selfish at all. You’re human, with thoughts and feelings and needs of your own.

And you’re probably one of the people PP is talking about when she says that people stick with it in the real world. On the face of it you and others do, because you feel judged otherwise. But on the inside you have also had to change, and that wasn’t a change you asked for, any more than your husband did.

AlternativePerspective I am not disagreeing with you. I have been in a similar situation. It's not just judgement from other people, it's the overwhelming guilt at feeling sad that life has changed so much, and the grief for the life and future which has changed. The person caring is in an impossible situation. It's not wrong to walk away but it's very very difficult to do.

What happens to adults without spouses?

I know she has always loved him deeply, and cared for him greatly, but this is not what she signed up for

She did actually, in sickness and in health,that's what marriage is, hard as it is. You 'sign up' for whatever life throws at you.

It's eye opening when you realise the lack of support and care once out of hospital