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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To be really scared of getting ill as a widow

52 replies

SnowyLamb · 07/07/2022 17:59

DH was diagnosed with terminal cancer at the start of covid and died towards the end of restrictions.

The whole experience was awful but it.woukd have been a whole lot worse, for him, if I hadn't been there to fight his corner advocate for him with regard to the care he got.

It felt like I had to fight for everything from proper pain relief, to help with caring for him. Even though I couldn't visit him just hospital I could call the ward when he was worried about things.

Then when I came home I cared for him until the end.

Now I'm on my own , I really worry about what would happen to me should I find myself in the same situation.

OP posts:
Allthegoodnamesarechosen · 07/07/2022 18:02

I don’t have any answers for you, but I share your concern.. no children, no relatives at all, friends also old. I wish there was just a pill we could take at the end ( not there yet! But it crosses my mind sometimes)

Onekidnoclue · 07/07/2022 18:03

Totally agree the ones who go first often have a better death.

bloodywhitecat · 07/07/2022 18:10

I know exactly what you mean. I am at the stage that I won't even go for my smear or mammogram because...well, what's the point.

bbqhulahoop · 07/07/2022 18:13

I'm sorry OP. What a shit time you've had 😩 Assuming your kids are still primary age what family/ friend who would act on your behalf or be POA if worst happened? You wouldn't need to sign over rights until you were at the point you felt you needed an advocate? I'm so sorry you've had an awful time xxx

2bazookas · 07/07/2022 18:21

Anyone can make an advance medical directive for their end of life care. Leave a copy with GP, friends, family. You can also give Power of Attorney to some trusted person, to make other financial/residential decisions for you and make sure your AMD is used by medical staff. We've done both.

Original poster
SnowyLamb · 07/07/2022 18:31

2bazookas · 07/07/2022 18:21

Anyone can make an advance medical directive for their end of life care. Leave a copy with GP, friends, family. You can also give Power of Attorney to some trusted person, to make other financial/residential decisions for you and make sure your AMD is used by medical staff. We've done both.

It's not that which worries me, it's not having anyone to advocate for me.

For example, to chase up prescriptions which were really hard work to get in a timely fashion, or to make sure the care put in place was adequate. He once called me crying in the night because he couldnt reach his buzzer and I was able to speak to the ward. Even just making sure he had a drink in hospital TBH.

OP posts:
Roselilly36 · 07/07/2022 18:44

So sorry for your loss, and understandable to feel anxious should you become ill.

Do you have grown up children/another family member or friend who could advocate for you, should you need it?

Perhaps some counselling could help you? Life is too short to live in a constant state of worry.

Personally, I refuse to think about the future, having lived with MS for the past 10 years, I cope by just focusing on the day ahead, I don’t think about the future as it would make me worry.

Good luck OP.

Palava57 · 07/07/2022 18:45

I think there various local patient advocacy organisations which could support you. Perhaps you can check what exists in your area 💐

Candleabra · 07/07/2022 18:49

Yes I know what you mean. Another thing that terrifies me is meeting someone else and them getting ill and having to be a carer again.

Original poster
SnowyLamb · 07/07/2022 18:56

Candleabra · 07/07/2022 18:49

Yes I know what you mean. Another thing that terrifies me is meeting someone else and them getting ill and having to be a carer again.

Yes, this too. I'd be very reluctant to form another "next of kin" kind of relationship, although I suppose that might mean there'd be someone for me!

I do have very young adult children, but tbh I can't see them fighting the way I did. I can't see any advocacy group doing it either. At times it was a full time job, just trying to make sure he got basic care.

OP posts:
gunnersgold · 07/07/2022 19:00

Do you not have any children? I would go and look at some retirement villages so you are somewhere where you can get support on hand !

SammySueTwo · 07/07/2022 19:04

I am very seriously looking into Dignitas should the need arise. I refuse to be treated like a sack of meat as so many people are in hospital these days - no dignity, in great pain and left to die alone. If I can afford it, I will manage it otherwise.

notanothertakeaway · 07/07/2022 19:08

OP, do you have siblings or cousins who could advocate for you?

Rickrollme · 07/07/2022 19:11

bloodywhitecat · 07/07/2022 18:10

I know exactly what you mean. I am at the stage that I won't even go for my smear or mammogram because...well, what's the point.

The point is a lot of things are treatable or even curable if you catch them early. If you wait too long it’s likely to be a lot more unpleasant and not necessarily a quick death either.

Original poster
SnowyLamb · 07/07/2022 19:15

gunnersgold · 07/07/2022 19:00

Do you not have any children? I would go and look at some retirement villages so you are somewhere where you can get support on hand !

It's not general living that bothers me, it's being too ill to make sure other people do what they should be doing.

For example when I was able to visit DH I hospital, there was a man opposite who didn't have the use of his hands and food was just been left for him when he had no way of eating it or of getting himself a drink.

While I was there I was helping him, but he had no one else and it was absolutely heartbreaking. He couldn't operate his buzzer either and when I tried to get help for him I was very rudely told to stop interfering. I would be him. 😥

At another hospital stay, DH was in far more pain than he'd been at home. He'd tried repeatedly to tell staff that something was wrong with his medication, but they wouldn't listen. I tried and they wouldn't listen to me either. In the end I called MacMillan and they sent one of their nurses who discovered that they were giving him 10ml as prescribed, but of something 1/10 the strength it should have been. That would never have been resolved if I hadn't been able to give literally hours to it.

OP posts:
Original poster
SnowyLamb · 07/07/2022 19:17

notanothertakeaway · 07/07/2022 19:08

OP, do you have siblings or cousins who could advocate for you?

Not in the way I had to for DH. They'd try, but honestly at times it was a full time job.

OP posts:
ResentfulLemon · 07/07/2022 19:31

YANBU our experience of watching my father die of MND has shown just how much you need an advocate. The GP was fucking useless, the ward staff when admitted to hospital were negligent, the A&E staff were uncaring and lied repeatedly to us.

Because all of this happened during the last two years we weren't even allowed in to make sure his basic needs were being met, let alone his medical ones. We had to fight for everything, every step of the way - including getting the GP to properly prescribe medication! I'm sure his deterioration wouldn't have been as rapid if it hadn't been for their actions.

Mercifully the district nursing team were incredible, I have zero doubt that they'd be proper advocates for their patients, as were the clinical staff who had ongoing care with my dad. They invariably helped when no one else would. They gave me a glimmer of hope that there are still people who take their role in healthcare seriously and don't let the bureaucracy be an excuse for being uncaring/negligent/dismissive.

If you have similarly affected friends/relatives I would definitely encourage you to make a pact on advocating for one another. You need someone to make a noise and get you the basic things sorted.

I've promised my mother and my perpetually single by choice sister that I'll always be that obdurate voice making sure they get what has been promised and is needed.

MissMarplesNiece · 07/07/2022 19:39

This is something I worry about too. Last time I was in hospital there was an elderly lady in the next bed who had no one to visit her or help her out. My DH started to bring in bits & pieces for her - a magazine, some squash etc. It made me think about being alone in hospital, and it made me worry about what would happen in the future if DH was a widower and was in hospital.

TheThreadisMildlyAmusing · 07/07/2022 19:55

This worries me too, the state of the NHS hospitals means I would think very seriously about ending my life myself, knowing of course that this would mean large parts of the NHS cheering that there was one less older person to take up a bed. I never thought when I was young that I would dread needing medical treatment and going into a U.K. hospital, but now I do. I have one person who might advocate for me, but he doesn't live close to me and might well die before me.

GingerFigs · 07/07/2022 19:55

OP @SnowyLamb I agree, and I think there are some naive comments on this thread. No offence to to anyone but asking do you have children (some of us don't so are we well and truly fucked??) and saying move to a retirement village show that you don't really understand what the OP is talking about. Having nursed various family members and especially my Dad through their final weeks is fucking awful and tortuous to get the right treatment and care. Even basic basic things. It's truly unbelievable how poor care can be. Unless you have lived that experience you can't really imagine it. You figure that even without family that you will be looked after but it's sadly not the case. @ResentfulLemon makes very good points.

I really hope that something similar to Dignitas becomes legal here so that people have the option. The slow painful death that some people suffer is dreadful and we would prosecute if animals were treated in that way.

Sorry, OP, I know none of that is helpful and just me ranting but I completely agree with you and feel similarly worried but I don't know the answer.

juniperjewel · 07/07/2022 20:05

I completely understand OP. My DH has a life limiting illness and I think about this a lot. I'm sorry for your loss Flowers

Original poster
SnowyLamb · 07/07/2022 20:06

GingerFigs · 07/07/2022 19:55

OP @SnowyLamb I agree, and I think there are some naive comments on this thread. No offence to to anyone but asking do you have children (some of us don't so are we well and truly fucked??) and saying move to a retirement village show that you don't really understand what the OP is talking about. Having nursed various family members and especially my Dad through their final weeks is fucking awful and tortuous to get the right treatment and care. Even basic basic things. It's truly unbelievable how poor care can be. Unless you have lived that experience you can't really imagine it. You figure that even without family that you will be looked after but it's sadly not the case. @ResentfulLemon makes very good points.

I really hope that something similar to Dignitas becomes legal here so that people have the option. The slow painful death that some people suffer is dreadful and we would prosecute if animals were treated in that way.

Sorry, OP, I know none of that is helpful and just me ranting but I completely agree with you and feel similarly worried but I don't know the answer.

Dignitas isn't necessarily the answer though. DH's illness was terminal, but I don't think he would have chosen to end his life earlier.

He/we could have faced some of the same issues if he was seriously ill with something he would recover from.

OP posts:
shivawn · 07/07/2022 20:18

SnowyLamb · 07/07/2022 19:15

It's not general living that bothers me, it's being too ill to make sure other people do what they should be doing.

For example when I was able to visit DH I hospital, there was a man opposite who didn't have the use of his hands and food was just been left for him when he had no way of eating it or of getting himself a drink.

While I was there I was helping him, but he had no one else and it was absolutely heartbreaking. He couldn't operate his buzzer either and when I tried to get help for him I was very rudely told to stop interfering. I would be him. 😥

At another hospital stay, DH was in far more pain than he'd been at home. He'd tried repeatedly to tell staff that something was wrong with his medication, but they wouldn't listen. I tried and they wouldn't listen to me either. In the end I called MacMillan and they sent one of their nurses who discovered that they were giving him 10ml as prescribed, but of something 1/10 the strength it should have been. That would never have been resolved if I hadn't been able to give literally hours to it.

Show quote history

I feel incredibly sad reading this. Your husband was very fortunate to have you fighting his corner for him but so many have no one.

anderosonnmj · 07/07/2022 20:22

I know what you mean. When my granny was very sick and in hospital, she was given food that she couldn't eat due to oral cancer. Luckily, she has 6 kids, so there was always someone around for at least one meal. She did end up leaving hospital with malnutrition though. At the end she was in a wonderful hospice where they couldn't do enough for her.

Original poster
SnowyLamb · 07/07/2022 20:25

anderosonnmj · 07/07/2022 20:22

I know what you mean. When my granny was very sick and in hospital, she was given food that she couldn't eat due to oral cancer. Luckily, she has 6 kids, so there was always someone around for at least one meal. She did end up leaving hospital with malnutrition though. At the end she was in a wonderful hospice where they couldn't do enough for her.

Yes, the hospice was amazing. DH died at home but he did spend some time in the Hospice after leaving hospital while the adjusted his pain relief. That was a real respite for both of us.

OP posts: