Hospital facilities in final days (possible TW)

[BibbityBobbityToo]

Hello,

I want to ask about the final days of sitting the hospital just waiting for some one to pass away so please don't read on if this will upset you.

MIL is in the very last stages of Vascular Dementia and Alzheimer's and is really going downhill, I think the end is nearing. (this will be a blessing to be honest as her soul left years ago.)

When the time comes for the family to be around her in the hospital do they provide e g tea/coffee/sandwiches/chairs/blankets for the family as well? I'm basically trying to come up with a grab bag of things as I'm sure the call to bring family in (me/DH) will be soon and I would hate to forget something important and one of us having to nip out to a shop for supplies assuming it's not the middle of the night (we are rural and no shops near the hospital either). I remember my parents sat around for 4 days for my Grandad and I have a fear of being desperate for a drink or food and not being able to get something and we're not exactly young ourselves.

This will be UK hospital and although they do have a palliative care unit I don't think that isn't used for elderly passing away due to old age, it's more for people with end if life cancer care. I think it would be a side room in the main ward.

Thanks

Depends very much on the hospital!

If she's in a home, they're unlikely to take her to hospital in that situation.

In the hospice they provided tea/coffee/water and biscuits, plus had a relative's room with a microwave in.

Hospital very varied and depends on the staff. Many have an M&S Simply Food near the entrance and/or a cafe. Usually there's a vending machine available 24/7 (although may be out of order!). So make sure you've got some small change as well as a bank card. Sometimes wards will offer tea/coffee in this situation if the tea round is going past. Sometimes a meal is assigned to the patient's bed and they'll let the visitor eat it instead.

It might be a good idea to pack some cereal bars, biscuits, bottled water and always have a bag of fruit around you can grab easily. Also a travel mug and hot chocolate, tea or coffee sachets?

In our experience they fed us , just sandwiches and cakes with hot drinks but we used to pop to the restaurant and get hot food to bring back to dad’s room. We didn’t stay overnight so no need for blankets but a cousin who was in the nursing staff stayed one night and had been given blankets. I understand the risk of feeling you need to be there 24/7 but honestly you’ll need a break some nights I was back in a 5am to sit with him but the last couple of days he didn’t know we were there really. I was there when he passed , thankfully I’d just got back after a few hours at home leaving my brother and mum with him - it was as if he had waited but if he had passed when I wasn’t there I wouldn’t have felt guilty , I know I’d done more than was expected especially as my mum had been on holiday and I’d had to manage the whole situation until I could get her flown home

My mother died in a care home, my father in a hospital. The window was opened by a member of staff after both their deaths.

2014 with my grandad he was moved to a side room, we had open visiting as end of life and was regularly brought tea and coffee, and extra chairs when needed.
2022 with my Nan there wasn't a side room available. We had open visiting but because she was on a ward it was only 2 at a time. No tea and coffees, we treated like normal visitors. My mum had a call at 6.30am one morning to say she needed to get to hospital. She got there within 20 minutes and was told she had passed away in those 20 minutes. Sorry if this is upsetting but she was stone cold, she had obviously passed away in the middle of the night and hadn't been checked until the morning.

It might be better if she stayed at the carehome in familiar surroundings with people she knows. The carehome should have an end of life plan for all their residents, ask the manager or nurse in charge what is in place now like ot for resuscitation forms, level of care, when to go to hospital, medication, family conracts, funeral directors. Sometimes having plans in place does ease the pressure and the GP should discuss whether hospital would be appropriate. You would also be more comfortable at the carehome with her own room, bathroom, their communal lounges are empty in the evenings.

We do still open a window, in every hospital I’ve ever been in it’s one of the first things done ❤️

If the patient is in a care home and death is near there is absolutely no need to move them to a hospital even if they have a stroke. Why would you move them to unfamiliar surroundings when family can’t be near.
We had responsibly for a relative and were asked by the home to fill in a DNR form and also end of life instructions. We said in these instructions that we did not want her taken to hospital.
If the patient is in hospital and they are not in a side ward surely the relatives have to consider other patients at night.

@MissMoneyFairy sorry you covered what I was going to say.

Rarely given anything to drink but on a few nights a recliner chair was brought in for whoever of us was doing the night vigil.

Pack snacks and lots of water, you get very thirsty.

What happens should be part of her care plans. We have agreed with my mums nursing home that she will only be taken to hospital if it is something like a broken arm, needs stitches etc. Otherwise she will be cared for where she is until the end. Even if there isn't a nurse permanently on site it should still be possible to manage with the district nursing team. Certainly you should talk to the manager.

After 8 hours in a&e with only a couple of NHS custard creams to sustain us (I didn't want to leave very elderly DF as he needed advocating for and it was chaotic) I now have an a&e grab bag as well as a hospital bag for DF. The a&e one would be a good fit for this as it has in everything we needed but didn't have with us, including:

• long-life snacks like sealed packs of nuts, dried fruit, ritz crackers & kitkats
• small bottles of water and kids juice cartons
• an inflatable camping cushion as NHS plastic chairs are incredibly uncomfortable after a few hours
• loads of change for the vending machine and car park
• baby wipes
• a thin extra blanket, as NHS ones seem to be rationed

(basic emergency toiletries and medication for me and a phone charger now live in my handbag)

That’s not necessarily the best advice. People are not always equipped to have a relative dying at home and some families find it more stressful in ways that they had not expected, eg dealing with any end of life medication, bodily fluids and breathing at the end of life etc

As my mum was in a single room (albeit in a covid ward) the hospital breached all protocols and let us sit with her 24 hours including a pull out chair. We were offered (again against all rules) the odd cup of tea - especially by the palliative team. We took it in turns to be with her for 3 days without leaving her and lo and behold she passed away when I had stepped out of the room to speak with the palliative nurse....

For when the time comes. I found this really helpful when my DM passed away. I took those minutes to just sit and be with her.

When someone dies, the first thing to do is nothing.
Don't run out and call the nurse. Don't pick up the phone. Take a deep breath and be present to the magnitude of the moment.
There's a grace to being at the bedside of someone you love as they make their transition out of this world. At the moment they take their last breath, there's an incredible sacredness in the space. The veil between the worlds opens.
We're so unprepared and untrained in how to deal with death that sometimes a kind of panic response kicks in. "They're dead!"
We knew they were going to die, so their being dead is not a surprise. It's not a problem to be solved. It's very sad, but it's not cause to panic.
If anything, their death is cause to take a deep breath, to stop, and be really present to what's happening. If you're at home, maybe put on the kettle and make a cup of tea.
Sit at the bedside and just be present to the experience in the room. What's happening for you? What might be happening for them? What other presences are here that might be supporting them on their way? Tune into all the beauty and magic.
Pausing gives your soul a chance to adjust, because no matter how prepared we are, a death is still a shock. If we kick right into "do" mode, and call 911, or call the hospice, we never get a chance to absorb the enormity of the event.
Give yourself five minutes or 10 minutes, or 15 minutes just to be. You'll never get that time back again if you don't take it now.
After that, do the smallest thing you can. Call the one person who needs to be called. Engage whatever systems need to be engaged, but engage them at the very most minimal level. Move really, really, really, slowly, because this is a period where it's easy for body and soul to get separated.
Our bodies can gallop forwards, but sometimes our souls haven't caught up. If you have an opportunity to be quiet and be present, take it. Accept and acclimatize and adjust to what's happening. Then, as the train starts rolling, and all the things that happen after a death kick in, you'll be better prepared.
You won't get a chance to catch your breath later on. You need to do it now.
Being present in the moments after death is an incredible gift to yourself, it's a gift to the people you're with, and it's a gift to the person who's just died. They're just a hair's breath away. They're just starting their new journey in the world without a body. If you keep a calm space around their body, and in the room, they're launched in a more beautiful way. It's a service to both sides of the veil.
Sarah Kerr, Death Doula

I agree with all of these, esp blankets as they are always in short supply.
I would add - tooth brush and tooth paste or at least some mouthwash to make you feel a bit more human
Jumper and warm slipper socks along with the blanket as the ward gets cold overnight
Flask or a mug to have a hot drink; you can usually refill on the ward. Tea bags or coffee in case there is none.

Been there (hospice). Have a 'go' bag ready and waiting including change of clothes, toothbrush, and snacks. Wish I'd thought of a cool bag.

My heart goes out to you

I would recommend taking a cushion, maybe a neck pillow, a blanket and a footstool. You can get inflatable footstools that are very portable. Also some pain medication for yourself if several days in a chair will cause you to ache. My Mum spent about 4 days at the "don't leave as she could go at any minute " stage. I spent the time in a chair. My legs swelled up so much that I could barely walk by the time she went. Having my feet up for some of the time could have prevented this.

@LLresident in the update, OP says her relative is in a care home.

It would be very poor practice for a care home resident to be moved into hospital for an expected death, away from the staff and environment they know and are safe in.

It would be very poor practice for a care home resident to be moved into hospital for an expected death, away from the staff and environment they know and are safe in

Exactly.

I'm not sure why you think your MIL will die in hospital @BibbityBobbityToo because as she's already in a care home, it would be very bad practice to move her when she's dying.

Dying people need kind, experienced carers.

Please discuss this with the Matron or Manager.

My mum passed away in June. She was in hospital after a fall, they put her on end of life care. The Dr asked did I want her to stay in hospital or go back to her care home.
I opted for the care home and so pleased I did she had amazing care. The district nurse came everyday, on the 6th day she put her on a syringe driver and she passed away peacefully two days later. One of the carers opened a window two hours before she passed.
We were treated very well could have any meals we wanted plus loads of coffee and biscuits. Don't forget to take your own medication with you plus paracetamol I had a constant headache.
Hope you have the same experience as us ❤️

It really doesn't sound like it would be in MIL's best interests to end up dying in hospital. Assuming she is currently in a care home, it ought to be possible for her to stay there for end of life care.

Does she have an 'advance care plan' in place? If not, you really need to liaise with her GP practice to ensure that she doesn't get admitted to hospital unless there are really clear reasons why it is necessary. District nurses can visit the care home to administer pain relief etc if needed.

It can be the case that someone who has a fall, stroke, heart attack etc do end up in hospital though and it's that possibly I am trying to prepare for even if it is the less likely scenario. She's been admitted to hospital several times for various things related to the above but none were 'end of life' on admission but obviously with someone so frail it wouldn't take much for it to progress to that level.

We have everything in place in terms of DNAR, care plans, LPOA and so on.

Although we wouldn't want her moved from the care home for end of life care I think we would listen to the advice of the Health Care professionals but hopefully it won't ever come to that.

Oh ok sorry, I didn’t realise.

Expect nothing. My elderly dad and I sat by my dying mother for six days. Not once were we offered a hot drink. Not one nurse spoke to us or asked how we were. I had to take a twenty minute round trip to the hospital restaurant to get my dad a hot drink. As a nurse myself I was appalled.

Nowadays hospitals will even write on discharge letters 'please do not admit to hospital again' or similar for patients with dementia that they do not feel are going to benefit from anything hospital has to offer.

Being blunt your relative is not going to have any treatment for a stroke or heart attack in hospital when they are end stage and nursed in bed.

You may need to be clearer with the care home and professionals that unless they have injuries that require treatment such as stitches they do not need to keep sending to hospital 'for a check up'.