To be really scared of getting ill as a widow

[SnowyLamb]

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.

I completely understand OP. I wouldn't want my children doing what I had to do for my mother when she was dying. And yes - like so many others, I saw disgraceful, neglectful treatment from too many NHS staff towards her and several other elderly / dying patients.
I'm determined to keep myself away from hospitals for as long as possible, even if it means a shortened life. Can't see any other option.

I get it. I truly think we need to have a service like a doula, for the other end of life. Along with a much better funded NHS.

Our hospitals really are an abomination aren't they. 😞

I completely understand. My brother in law is blind.
I went to visit him in hospital. Twice his dinner was cold on a tray because he was asleep when it arrived and what with being blind he couldn't see it. Same with hot drinks. I had to go to the onsite Costa and buy them.
I crossed out the Mr Spider has impaired sight on his board and wrote Mr Spider is Blind.

I know exactly what you mean OP.

I had a DD with multiple disabilities and health conditions. She was learning disabled, non verbal and no capacity to make decisions for herself. She spent a fair amount of time in hospital in her 22 years. On children's wards it wasn't too bad. Parents were expected to be there and work as part of a team with the staff.

When she turned 18 and moved to adult wards it was a whole different ball game. I insisted on staying with DD at all times otherwise they could not meet her needs but it was almost as if they resented me being there as I could pick up on their mistakes, omissions and general poor standards. The things I saw going on with patients who had no one to advocate for them left me thinking exactly the same as you - that I would never want to be in hospital without someone to speak up for me if I was unable to. It really would not be safe in the hospital we used and I'm sure many others - and that was pre Covid.

I understand what you are saying I advocated for my mum when she was terminally ill I can't imagine what happens to people who don't have someone their to speak up for them. I'd ask one of your children I'm sure when the time comes they will be able to do what's needed.

Last year, I was in my local hospital on a ventilator with Covid. When I woke up 2 weeks later, I was in a hospital 60 miles away, unable to speak, swallow or move anything. I'd had a stroke - the 1st hospital had made an error with the drugs and as a result, my BP had gone up to 350 top figure for almost an hour (they say that hadn't caused the stroke!) It was the most frightening experience of my life - and the "care" was shocking - my teeth weren't cleaned for 4 weeks, my hair wasn't brushed all that time. Lots of things were so wrong. Luckily, my speech returned after 4 weeks, and so did my movement. I was kept in isolation (I'd tested positive for Covid again) and I didn't have any visitors in the total of 6 weeks that I was in. I'm absolutely terrified of ever being incapacitated again.

I worry about this as well, I have an adult niece and nephew but they would be next to useless, as much as I love them they are not particularly capable of running their own lives let alone advocating for me, and they live in a different county. Hopefully the hospice will let me admit myself if and when the time comes, I don’t see what other option I would have.

It's bloody scary isn't it? I wish I had someone to look after me as I did my husband. You've been through the absolute nightmare of having to support, care, advocate and fight to protect them. All while coping with the emotional trauma of loving the person you know you are losing.

And you just get on with it, trying through sheer willpower to give them strength, any chance, anything to make things better for them. But it doesn't get better for you, for me, for all of us here.

I went through very similar to you but thankfully before the crap show that is Covid and the total shit storm that is our present and probably future NHS.

I totally hear you. I am also a widow and fought and advocated for my husband through his quite long terminal decline and end. The hospice was the best bit but even there he had to die according to a timetable and if he got too well enough he was going to be removed to a home for a few weeks to start dying properly, luckily for him and us, he was in his final days and so that discussion came to an end. I say luckily as he needed a lot of pain relief and was dying slowly and had lost his mind so not nice for him.

The care beforehand was non-existent, patchy and shoddy and I've never felt so low in my life as fighting for basic things and being told we were costing too much money. That was the moment I despaired.

I did in the end get him very good end of life care and the hospice were fantastic and some of the individual carers were wonderful people that I still think about and came to his funeral. They were marvellous, the system was not and I agree with you worrying about who will care for you. Can you talk with your children? Can you talk with a friend and get them to help? I would step up and advocate for a very good friend in this situation for sure. It's harder the older you get, I guess that's the luck of living longer, but it doesn't make it easy in the current state of the NHS. I would very much like an insurance system for social care, but the government bodged the review and are now falling apart anyway so I'm not hopeful.

I really feel for you and am sending you my best wishes, it's so hard being a widow those early years and puzzing out how to live.

It was ever thus. 33 years ago I was in hospital to have my wisdom teeth out. On the same ward was a young woman with cerebral palsy, in for the same. They'd taken her out of her wheelchair and put her in her bed with the sides up so she didn't fall out and given her her pre-op meds. She was left there for ages - two or three hours at least, unable to pull her blanket up etc, and needed the loo. She called repeatedly and no-one came. Eventually she was in tears, so I got up and went over and she explained, so I went to find a nurse, who huffed at me, got her colleague and marched over to the poor woman, whipped the curtains round and brusquely told her she should have called!

Firstly not everyone has a drawn out illness like your dh had where someone might need to be an advocate.

also your kids might surprise you. I was in my 20s when my dad was taken seriously ill. My parents were divorced. He was in hospital for six months the first time, bed bound, barely able to talk and was expected to die any day for the first few months. I was at his bedside every day, even if only for a short time due to work. I argued with doctors, convinced them to do different tests as I was constantly researching about his symptoms (he never got a diagnosis), managed to convince his consultant to liaise with Addenbrooks, actually got him referred to Addenbrooks after discharge, argued (politely) with nurses about pain relief. When he died a couple of years later he died at home, having palliative care with a combination of night carers, me, hospice at home team, district nurses. I’d never done anything like this before.

when my mum died more recently I’d actually been NC with her for a few years. I did actually go and see her in hospital quite a bit and she’d made her neighbour next of kin. Her neighbour was wonderful and would visit every day, stayed through the night, advocated to get her in a hospice, etc.

Well this is awful and depressing, but very true. I’ve had to advocate for my father and my aunt. It’s crossed my mind that there may not be anyone to do it for me, I’m married with a child but you just never know what can happen.

I have often thought about this, now that I am separated. But honestly, I do not think he would have been very useful anyway.
I am not in UK but am FT carer for an elderly relative that has no spouse or children. She was in hospital , supposedly to monitor blood pressure . Whilst there she got hospital pneumonia. It became obvious that she was not being looked after in a ward . She too , was blind and tray of food left and no one to help . No drinks. Not getting washed. Lost her dentures. She was in danger of dying just from lack of basic attention. I took her out home to my house . That was 3 years ago .
I have carers coming in to help me but it is often hard to coordinate. Recently I had to contact 5 different agencies regarding one issue . I was thinking at the time that another elderly person , perhaps a spouse would not be able to get the outcome I did , purely because I have knowledge and technology to contact groups.

I feel the same op. I lost my dh to cancer 1 year tomorrow and although I have young adult children they wouldn’t know what to do or how to talk to people to advocate for me as both have asd. I fought so hard for dh from getting him seen and taken seriously to getting him a place in a hospice and I know I won’t have the same and I’ll have a very lonely death.

i am reluctant to see anyone new, (like they’re breaking my door down lol) what if I’m left behind again.

flowers 💐 for people on this thread

I've been thinking about this a lot too, recently.

No children.
My lovely husband died suddenly and unexpectedly several weeks ago.
I have siblings but they aren't nearby and are also getting on/have their own heath issues.
I have neices and nephews, but they are also a long way from here, work full time, have young families and their own parents and parents in law to support.

Taking @CrapBucket's suggestion, I googled and it looks as if there are end of life doulas in the UK, though I can't see anything about cost etc.

Stay as well as you can and die quick is all we can pray for!

NHS UK website also has information regarding advocates and gives links to some charities which help provide advocates - though, there are none near me, so it looks like provision is patchy and depends where you live.

I’m sorry for your loss, SnowyLamb, and I understand your concern.

When a close relative died last year, living alone, I shared her care with other family members so she always had someone with her. It was gruelling, exhausting, and I don’t know how we would have got through without helpers from the local hospice in the final weeks.

We really had to push for some treatments, as we did with my mother many years earlier. As younsay, sick people need someone to advocate for them — it’s not just the everyday care but someone to take charge of getting the right medicines or explaining things to a professional, when the sick person is too weak or rundown to do it.

DH and I have no children and, though I have a large and loving family, they all live far away and are either working, caring for small children or weakened by age. Our friends are around our own age, and we’re not part of a church community. I used to hope I would die before DH but now I think I couldn’t bear to leave him not only bereft but in need of help.

Do we need some kind of mutual organisation that people could join, to tackle this?

The elderly lady I referred to in my PP was given food & drink but was left lying in a position where she was unable to eat the food or have a drink without spilling it. I used to adjust her bed & pillows to a better position for her & cut up her food . She asked me if I used to be a nurse - no, just someone who used their eyes and thought about what small thing would make it easier for her. Food trays were removed & no one was ever asked why they hadn't eaten - although I caused massive consternation for a day or so by going on a hunger strike (but that's a separate matter)

One bank nurse was told off because one meal time she sat with a patient and assisted her with eating. I talked to the nurse later - she came from overseas & hadn't done her training in this country. I wonder if that's what made the difference; nursing in this country has become much more technical & professional, but is that at the cost of basic common sense care for patients?

"I wonder if that's what made the difference; nursing in this country has become much more technical & professional, but is that at the cost of basic common sense care for patients".

There does seem to be a remarkable lack of empathy or TLC as it used to be called in the NHS and nursing. I'm sure some of that is due to lack of personnel and in present circumstances, burn out after the last two years, but not all, since I've seen it in nurses and doctors pre pandemic. It's worrying when these people have your health and your life in their hands. I do remember nurses being much kinder and more patient years ago.

I can emphasise, I looked after my OH with terminal cancer, I am in the same position with a terminal diagnosis myself now and no family.At the moment I am able to fight for my own treatment etc, but at the end Im afraid of what will happen if I cant. Hopefully there are people in the hospital services or social services who will help me but until you need them you dont know

@thereisonlyoneofme I'm so sorry.

OP, I am so sorry, I understand your fears. Unfortunately from my own experiences and those I care about this has been the case for a very long time. Not always but often. The last person I remember getting consistently decent care during a long and serious illness was my father in about 1969! That was in the Brompton Hospital in London and of course things were very different then, with Nightingale wards and a much more regimented structure WRT nursing. The care he received was outstanding, brisk and highly efficient but the caring element was very much there too. Since then I do not know anybody who has received anything as good. Pockets of superlative care, yes but usually interspersed with the opposite, unfortunately.
In my own case a few years ago during a dire emergency I received wonderful care from a team of junior doctors on admission, they saved my life, no question. On the ward... oh dear. A couple of student nurses were amazing, so kind and hard working. Then there was the registrar and his team; put it this way I still tremble thinking of his cruelty and am now terrified of hospitals. The more senior nurses were at best indifferent. I might have thought it was a 'me' problem if I hadn't seen how they treated others in the ward.
I do not know what the answer is. I do not think it is money as such and there was certainly no lack of staff, just lots of them not doing much while the student nurses ran around trying to cope with everything. I fear there is no government, Tory, Labour or (where I am) SNP that has an answer. If it was remotely practical I'd say the whole thing needs to be blown up and start again with an entirely new system and entirely different attitudes.

I can also empathise. My DH died 14 months after his diagnosis with cancer and during much of that that period I was working full time advocating for him (strokes meant he couldn’t always speak), chasing prescriptions, driving to chemo or radiotherapy or blood transfusions, getting support, administering pain relief, feeding him through a nasal gastric tube, knowing when to call the dr or go to A & E.

I often have the thought since his death that when it’s my turn to go to the cancer ward that I will be alone, and who will do the job I did?

If you had to be cared for in a Nursing home and you have no-one you can have an independent advocate assigned to you I think.