Kate Garraway…..Caring for Derek

[GorgonzolaSouffle]

She’s so brave making this documentary.

@angel1977

Very moving warts and all program illustrating the reality of looking after very sick frail family members at home with the crumbling social care available in this country.

I see this everyday working in the community - struggling families at breaking point, chaotic households, stuff everywhere, washing and rubbish, dishes stacked up, compulsive buying, hoarding and simply not enough hours in the day to look after yourself and house, family and the patient and earn enough money to keep it all going.
Its a steep learning curve Kates on and things can get better once they work out what works what doesn't. For example I'm not sure why there is so much washing for Derek. A correct fitted absorbant apron, correct absorbancy continence pad, bowel regime and washable bed pad for leaks should negate the need for umpteen bed changes daily.
She needs a community alarm which she or Derek presses if he's fallen, had an accident etc and the team will attend anytime 24/7 to help get him up safely.
There is also the possibility that some patients genuinely get on better in a longterm rehab facility rather than at home in the first 1 -2 years post brain injury. This is when the most recovery/repair of the brain occurs. And I got the feeling Kate may well start to consider this due to the impact on the rest of their family or if she feels its in Dereks best interest.

Derek also should be getting up for increasing periods of time daily into a large recliner chair and even an electric wheelchair he can control for a change of scene and so he can exert control of some aspect of his life. Not clear from the program if this is happening.

Keeping hair short number 2 cut, easier to keep clean, wash and dry quicker.

I felt it was unhelpful of the Mexican Dr to imply Derek was still present and simply could not communicate, his scans were depressing and injury appears extensive.
I wish her the best she has a hard road ahead and I hope she can get the help she so desperately needs.

I wondered about all the laundry too. My father had Parkinsons and at the end had a bed like Derek's, a team of hospice carers and a garage full of nappies. The bed was changed every few days but never because of nappy leakage as they were so efficient at catching everything. It also concerned me that Kate was doing lots of lifting. She will damage her back in the long term. My father fell many times before he became bedridden. They paid into a falls service. If the person fell then you called the number and they came with an inflatable pad which safely lifted the person. None of them lifted. They said the protocol is that no one lifts anyone. It is dangerous for both parties and causes damage to both. With the proper equipment it isn't ever necessary. Kate has always admitted that she is a very messy person. It must be incredibly difficult to function when your home is already messy and you are disappearing down a rabbit hole of hell. My mums view,a fter the first documentary, was that it would have been better if Derek had died. It would have been tragic at the time but what they have now is also tragic.A living hell. Her husband has no life. He was involved in the cut and thrust of politics. Now he sleeps for 20 hours a day and has his constipation discussed on national television . She is no longer a wife, a lover, an partner in a team. She is condemned to be his carer for the rest of his life. Once the children leave for University she will be alone. Once someone is stable it is very hard to die. They used to say pneumonia was the old person's friend. It took you off quickly. Not so much nowadays. There are so many drugs to keep you going in your bedridden state that it is very, very hard to die. My mum had me to help with everything and she and my father had had 50 years of an equal marriage. Kate has to grieve for the loss of a man who hasn't actually died. She is in absolutely dreadful situation.

[quote MRSAHILL]@GorgonzolaSouffle Yes, you could see the shock on Ben's face as he noticed the state of the house. I wonder just how well Kate is coping. The whole family looked like they needed someone to go in and take over, take care of the everyday things, look after them and let Kate get on with looking after Derek and working, as obviously all that responsibility must also be on her shoulders now too. They look such a loving family, I really hope Derek improves. [/quote]
I agree - I was shocked at the state of their home. I did really feel for her, because everything falls to her now. She was in a marriage with a successful and, I assume, high-earning DH and now she's the one who has to do everything. She's got to earn enough money to keep that big London house, pay the carers, pay for treatment, parent her DC and keep all the plates spinning.

I was shocked at how exhausted she looks when she's not all made up and primped for TV. I read in an article this morning that she's surviving on 4 hours sleep a night and that she sits by Derek's bed so there is someone there if he wakes up. The lovely carer, Jake, could clearly see how she is neglecting herself and at the end she did say that the whole situation is unsustainable, which it clearly is. She needs a housekeeper and a PA, but presumably she can't afford it. What an awful situation for them all.

And yes, I agree with you @AthenaPopodopolous and felt by the end of the documentary that she's finally starting to accept that he's never going to get significantly better. You could see her denial being gradually chipped away at as the months wore on with no real improvement.

I think she’s in a very difficult situation, especially being such a public figure, in that if she does decide, at some point to leave him or to pass his care over to more people and lead a more separate life there are those who will (wrongly) judge her harshly for that, and that must be an awful weight to hold, especially when you have children who are very aware of what’s being said about your famous mum.

Saw a bit of it yesterday, and dh said to me, for goodness sake if that happens to me please don't do a programme about me. It is very personal.

I haven’t watched as it’s too close to home. Having had two family members suffer brain injuries, it is absolutely astounding that the NHS sends them home and their poor partners are run ragged looking after them. The expectation has simply been that their partners will put their lives on hold and do everything they can for them, with no thought given to their own personal health and well-being. They’ve both been absolutely broken by it and there is so little support for them. Kate will break eventually, it’s just impossible not to. And everyone calling her superwoman - she’s not, she’s had to step up as no one else would!

@Kanaloa

Didn’t Hitler say something like that about disabled people too?

Well, no, he didn’t really. Hitler was more along the lines of ‘we should kill off disabled people, they’re burdens and they don’t fit wi to the perfect race of people I want.’

Massive difference from someone saying it’s an existence with no quality of life but still understanding that person’s right to dignity, comfort, and care. Being aware that you would never want to live that way is nothing like wanting disabled people dead and it’s ridiculous to act like someone is akin to Hitler for saying ‘I’d hate to live that way, death would be kinder.’

Completely agree with this. And I am glad to see a few other posters this morning, who are thinking along the same lines. Although very few people are saying it on social media and message forums (and those who ARE, are being lambasted,) most people I have spoken to in real life have said 'death/euthanasia would be kinder.'

It's a massive taboo that NO-ONE wants to talk about, but in real life, many people think the same... That this is no life for Kate OR Derek OR their children.

We would never let an animal live this way. That is a fact. Vets advise euthanasia when an animal's quality of life has diminished to a point where they are no longer able to function normally. Why do we let humans suffer like this? Why?

Derek is never going to get better. This is as good as it gets for him now. I would not want this life for my husband - or myself. And I would not want my young children seeing their father like this.

I think people are so shielded from the realities of what life is like for those with severe illness / disabilities. They think it will never happen to them and whilst they’re in the peak of their lives they don’t want to be confronted by these sorts of things - which is why these programmes are important.

On a lesser scale I’ve seen so many threads on here where people bang on about the opioid crisis and saying people shouldn’t be prescribed codeine / Tramadol etc and telling people to go and do yoga as pain relief or whatever. All utterly ridiculous. Someone with severe and chronic pain, like me, needs painkillers to have any quality of life at all, and I can’t do yoga (!) and yes I will probably become addicted but that’s neither here nor there. It’s very easy for people to sit and make judgements.

People think a sea of carers will step in when someone becomes ill like this but in most situations that isn’t the case at all, unless you have the money to pay for it.

@Foolsrule

I haven’t watched as it’s too close to home. Having had two family members suffer brain injuries, it is absolutely astounding that the NHS sends them home and their poor partners are run ragged looking after them. The expectation has simply been that their partners will put their lives on hold and do everything they can for them, with no thought given to their own personal health and well-being. They’ve both been absolutely broken by it and there is so little support for them. Kate will break eventually, it’s just impossible not to. And everyone calling her superwoman - she’s not, she’s had to step up as no one else would!

Exactly this. ^ Kate looked so shattered and worn down in that documentary, and actually said 'this is not sustainable long term.' When Derek went away for a few days for treatment, and her friend Ben turned up, her whole demeanour changed. She was happier, brighter, bouncier, and radiating joy. When Derek was around, she looked like she had the weight of the world on her shoulders, and like a dark shroud of gloom was encasing her.

I know she has always loved him deeply, and cared for him greatly, but this is not what she signed up for. This is not the Derek she married, and who she met 17-18 years ago. This is a completely different man, and a man who needs 24/7 round-the-clock care.

My hat goes off to her. I couldn't do it. I really couldn't.

@Bagelsandbrie

I think people are so shielded from the realities of what life is like for those with severe illness / disabilities. They think it will never happen to them and whilst they’re in the peak of their lives they don’t want to be confronted by these sorts of things - which is why these programmes are important.

On a lesser scale I’ve seen so many threads on here where people bang on about the opioid crisis and saying people shouldn’t be prescribed codeine / Tramadol etc and telling people to go and do yoga as pain relief or whatever. All utterly ridiculous. Someone with severe and chronic pain, like me, needs painkillers to have any quality of life at all, and I can’t do yoga (!) and yes I will probably become addicted but that’s neither here nor there. It’s very easy for people to sit and make judgements.

People think a sea of carers will step in when someone becomes ill like this but in most situations that isn’t the case at all, unless you have the money to pay for it.

Excellent post!

People think a sea of carers will step in when someone becomes ill like this but in most situations that isn’t the case at all, unless you have the money to pay for it.

Absolutely. In the experiences of our family, there was zero. Sweet FA. Lives destroyed. Relationships broken. People living with the person but they’re there in body only. They’re not them. None of this is to take away from the absolutely dreadful situation the brain damaged person finds themself in, but is it fair for a young wife to become a carer, have none of the joys of a usual relationship, for the next 50 years? Society is so judgmental, in sickness and in health and all that, but hand on heart, can anyone truly say they would want to do what Kate is doing, and could do it willingly and gladly, for the next four or five decades, ruining their own health in the future?

She didn't sign up for it? In sickness and in health? I agree she looks exhausted but I think it sounds cold saying she didn't sign up for it. The poor man needs his wife now more than ever.

@Juno22

The only person who can say whether or not he wants to live is Derek, not anyone on here. In my experience the desire to live some sort of life, even if the quality is much reduced, can be very strong.

Which is why a loving will is something we should all have. Otherwise, when it comes to situations like this, medics will always go for the option of ‘saving the person’s life whatever the cost’.

@TheVolturi

She didn't sign up for it? In sickness and in health? I agree she looks exhausted but I think it sounds cold saying she didn't sign up for it. The poor man needs his wife now more than ever.

Well….

Read threads in here where one partner is chronically ill. There are plenty of talk of how exhausting it is (for things that aren’t what she is dealing with!), how it would be fair to say you can’t do it anymore, that it’s your life and it’s normal to want to have your life back etc….
There usually isn’t a lot if talk about in sickness and in health….

@Foolsrule

People think a sea of carers will step in when someone becomes ill like this but in most situations that isn’t the case at all, unless you have the money to pay for it.

Absolutely. In the experiences of our family, there was zero. Sweet FA. Lives destroyed. Relationships broken. People living with the person but they’re there in body only. They’re not them. None of this is to take away from the absolutely dreadful situation the brain damaged person finds themself in, but is it fair for a young wife to become a carer, have none of the joys of a usual relationship, for the next 50 years? Society is so judgmental, in sickness and in health and all that, but hand on heart, can anyone truly say they would want to do what Kate is doing, and could do it willingly and gladly, for the next four or five decades, ruining their own health in the future?

Yep I have seen the effect of that caring role on a friend of mine. She has lost most of her adult life like this. Her dcs life is centred around caring and the needs of another person.

I have to say, I am surprised that people are ‘amazed, surprised etc…’ at her life. That’s the life of carer. That’s what being a carer means. And yes most people don’t even have the money to make things a bit easier for them. Remember how much people get for being a full time carer?

@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.

Yep £67 a week carers allowance and - if they get it - £600 odd highest rate on PIP. To replace a full time salary lost in a family. And then people will say “oh you can use the PIP / dla to pay for care / treatments”.

(£600 a month; not weekly, that’s what I get in PIP highest rates both components).

@Bagelsandbrie

Yep £67 a week carers allowance and - if they get it - £600 odd highest rate on PIP. To replace a full time salary lost in a family. And then people will say “oh you can use the PIP / dla to pay for care / treatments”.

Well it’s two lost incomes really- dreadful

@Foolsrule Most people with a partner eventually become a carer or the cared for. It is almost inevitable.

@OnlyFoolsnMothers yes - good point, I was only thinking of the carers role but you’re very right.

To be coldly clinical-
I read an article in The Guardian this week written by a GP who, amongst other things, talked about the repercussions of modern medicine being able to keep people alive these days who, within her (and my - 60) my living memory would have died. People who have had eg a stroke and heart failure and altzheimers etc. It's cruel to the patient and, bluntly, costs the tax payer a fortune.
Derek, bless him, falls into this category.
Who knows what I'd want for myself in this situation? But I don't think I'd want a life like Derek's, or my MIL's, who stayed far too long on this earth for her own good, or for that of her family.

@TheVolturi

She didn't sign up for it? In sickness and in health? I agree she looks exhausted but I think it sounds cold saying she didn't sign up for it. The poor man needs his wife now more than ever.

Well most healthy able bodied people don’t choose to marry someone with a high dependence due to disabilities for a reason- no one expects it to happen to them. Honestly if I knew it was going to happen I wouldn’t get married. Would I want to die if I was Derek- maybe not, I would want to continue to see my children. Would I wish he had died if I was Kate- probably a little, it would be heartbreaking but it would be clean and far easier in many ways. Obviously both opinions without any true life experience

I cared for my husband who had a similar range of disabilities to Derek although in his case he was terminally ill. It sounds terrible but I think for us, both him and me, this was a blessing. He gave his all to life, but ultimately wasn't the man he would have wanted to be, and for me, it has given me a second chance to be very very sad, but also to live again.

I fear for Kate going forward that once the true reality, that he might live like this for decades, and that you cannot simply keep going indefinitely without cracking/becoming burned out and so forth, will really hit her and she will become depressed. I recognize her manic quality in myself, I was like a whirlwind, but after years and years, it starts to affect you. She also has essentially a carer relation with Derek now, he can't help take decisions about the kids or decide where to go on holiday- she has lost her life partner, and perhaps she isn't fully realising what that means going forward. I hope that in time she does think about getting him 1 to 1 care from others, and possibly thinking about her own life and her own relationships.

It sounds awful but comparing my situation to Kate, I think me and my husband were the lucky ones. She is an amazing woman but she is not super-human, no-one is.

@TheVolturi

She didn't sign up for it? In sickness and in health? I agree she looks exhausted but I think it sounds cold saying she didn't sign up for it. The poor man needs his wife now more than ever.

This is the kind of thing I and some other posters are on about. Utterly, UTTERLY clueless, insensitive, ignorant comment from someone who has clearly NEVER been in the same position as Kate Garraway, (and many people like her...) Having to care 24/7 for an ADULT who can't dress themselves, bathe themselves, go to the toilet themselves, wipe their own bum, feed themselves, get themselves a drink, get out of bed by themselves, write, read, communicate with their children and spouse, or even speak.

The 'carer' usually their partner NEVER gets a reprieve, and in many cases it destroys their OWN health - mental AND physical. As some posters have said, very few people get help from carers. If you are lucky you will get half an hour twice a week. Out of 168 hours!

I have seen a number of people broken by having to care for very VERY sick partners (and other family members.)

And as a few posters have said, Kate is still quite young, and her children are still school age. They should not be having to go through what they're having to endure. And no WAY can Kate keep doing this for the next 40 years.

Comments like yours are incredibly helpful. Just stop! You don't have a clue.