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

You might be lucky and get a cuppa but that's it I'm afraid.

You’ll have to take your own supplies for a hospital. In the hospice we got tea and coffee and biscuits. One relative passed in Hospice and 2 in Hospital.

Is she in hospital now? If not then the best plan would be to ensure she doesn't get admitted and stays at home/in a care home.

If she is in hospital - is there any chance of getting her out?

Staying in hospital, honestly it varies so much. You may be in a side room and the ward get you cups of tea and a bed to stay over. Or you may be in a normal ward with a curtain round and an uncomfortable chair to sit on, being told tea/biscuits is only for patients.

Sorry to hear of your troubles.

A coolbag is a godsend to bring with you. Fill it with perishable stuff that you like and will keep you going + drinks. A flask of hot water might be useful, I find the coffee sachets like cappucino/vanilla etc. are great as they don't need milk.
Bring chargers for devices, and a pack of wet wipes + small tube of moisturiser to freshen up now and then.

Been there, done that and those are the main things I learned to bring.

Good idea to pack a bag. It can be very difficult for healthcare staff to know when the end will be- they may call you in thinking hours but as you know it could be days.
Don’t feel you have to be there every minute, especially as MIL won’t know, so won’t be distressed when you’re not there. It’s more difficult if the person is scared or in pain and relying on you for support.
You may need snacks, drinks, cushion/pillow, book, hand cream, phone charger (it’s nice to play music if quietly if you can), essential oil for a nice atmosphere (not a big air freshener spray unless you’re in a side room- as it can cause asthmatic reactions in some people); wet wipes.
There will be times the staff will be providing personal care which is a good time to go for a wee, freshen up.
Do ask for tea when the trolley goes round but it’s not a given.

The ward staff may offer you a hot drink and biscuits, we used to do this. I don't think you'll get food, the staff may also put a few chairs in for you with a blanket, it depends on the staff, how busy they are, how many visitors, how long you all plan to stay. I'd take wetwipes, tissues, toothbrush and paste, comb, bottled drinks, energy bars.

I would also expect that even if you plan to be there every minute, staff can't accurately predict when someone is going to die so you may be called too late, too early or even multiple times.

And there is a natural limit even when you stayed glued to the bed side that you need to go to have a wash/to the toilet/get something from the shop and it is very common for the person to die just after you leave.

So please do not feel guilty if you aren't there.

We occasionally get asked to lend the parents camp beds to adult wards for relatives of end of life patients, but our resident parents will get priority and we often don't have spare. I'd imagine you'll have to provide your own food and drinks. I was shocked when I was an inpatient on an adult ward, that there were no facilities for patients to make themselves a drink. (We have a parents kitchen)

I'm sorry OP.

I wouldn't bank on having any of those things tbh, or a side room. It just may not be available.

I'd prepare for a less comfortable situation as she may be on a ward with just a curtain around with only 1 or 2 chairs. It's not likely that you'll be offended food or drink unless a tea trolley is coming round, so I'd prepare a bag of food and drink to take.

I work on a ward and we’ll offer tea and coffee and biscuits every round, which are six times a day. We also offer breakfast and any unclaimed items from the meal trolley but it’s not a given and we can’t order especially for relatives. I know other wards are stricter about giving out ‘patient’ food though. If there’s more than one of you take turns and stretch your legs, go to the shop etc, bring fresh fruit as that’s often in short supply in hospitals.

Be aware a side room isn’t a given depending on how many there are at the hospital, and if you don’t get one you’ll likely have to leave the ward to use the loo as you can’t use shared patient ones. I’m sorry this is coming up for you

We had a side room. I was there alone with my parent and I popped down to the hospital coffee shop and bought drinks as no one thought to tell me that there was a tea/coffee station on the main ward that I could use and I didn't think to ask tbh.

I had one parent die in a hospice and the other in hospital. Also MIL in hospital.

If she can stay in a care home or get a hospice bed that's the best option. A hospice cares for the family as well, though not to the extent of feeding them.
Hospitals not the same. If you are lucky she may get a bed in a private room with a chair for one or two visitors. You are unlikely to get even a drink, that's really not the NHSs role. Make sure to take cash for vending machines as cafes shut overnight. You don't have to stay, the hospiatal will phone if they believe the end is near.

For my Mum they put in a bed, gave us blankets, tooth brushes/tooth paste and loads of biscuits.

I would say wear comfy clothes, soft waist band. I had a book which was nice to read to my Mum when I was by myself in the middle of the night.

You may also want to read up on the last stage of dying. It was helpful for me to know what was going to happen.

I think it varies depending on where the hospital is.

No side room, chairs or food for visitors when my 98 year old grandmother died on a Care of the Elderly ward in the Midlands, it was very bad, both the nursing care and the whole environment.
There were 6 beds crammed close together in what should have been a 4 bedded bay. No space for visitors to sit down, all taken up with trolleys, lockers and equipment.
No privacy, everyone could hear what everyone else was saying. My grandmother was fully with it and knew she was dying but very deaf so we had to shout. The staff didn't even try to communicate with her and said she was confused!

Try to find out where your MIL is likely to go and have a look round the ward if you can so you'll be prepared and maybe able to arrange somewhere else.

Is she already in hospital @BibbityBobbityToo?

If she's at home, or in a care home, that's the best place to die.

Hospitals are busy, noisy places. They don't offer snacks, but you'll get cups of tea now and again.

is a hospice an option? They care for the whole family.

DM was on an elderly ward over the summer, in a side room as on palliative care. DF was given meal vouchers for the hospital cafe (and parking vouchers), we were offered hot drinks. There was an M&S, coffee shop and cafe in the hospital as well. The hospice she was moved to had no shops but did have a kitchen with fridge and microwave and hot drink machine.

I suspect the reality will be she'll have a massive stroke and be in a main hospital ward. (I'm not deliberately trying to sound uncaring, she is towards the end of Vascular and Alzheimer's and the most likely thing is she will have a stroke).

We only have one hospital in our whole area, very rural part of Scotland, and the small hospice they have is limited to palliative care for cancer due to the way it was originally funded by a bequest.

It may be that the inevitable happens in her care home and I know the lovely staff there will look after us but I'm more concerned about getting the call at say 1am when we have no shops open and the hospital 'shop' (hence 1 tiny shop run by volunteers) is closed so no options for food and water etc.

I'm probably overthinking but not sure if we asked staff for a sandwich or drink etc are they even allowed to do that as we aren't the patient.

It sounds difficult, can she stay at the carehome instead of going to hospital. The staff and gp can make arrangements

If she is already in a care home there should be no reason to take her to hospital for end of life.

Make sure as a family you have agreed with the care home and her GP that she has a DNACPR in place, documentation to say not to go to hospital and injectable medication prescribed should she need it when she is at the very end of her life.

This should be something the care home are used to dealing with regularly.

Thank you, would never have thought of a cool bag but that's brilliant idea.

I'm away to put the blocks in the freezer!

I've started a grab back with hand gel, baby wipes, money/change, old style toothbrush, deodorant etc. Oh, and a t-shirt for DH as he never wears one under his hoodie and is a like a boil in the bag kipper when we're in the hospital!

I've heard some people hang on and finally go once everyone has left the room so I think we'll be ok if that is what happens. She was always very particular so I'm sure she'll decide which she prefers.

Sounds daft but I do hope we are there as I want to make sure someone opens the window afterwards. MIL was a Nurse, probably started over 70 years ago now, and the ritual of opening the window was really important to her and I want to make sure we do that for her. Not sure if it something really done now by Nurses?

Hopefully she'll die in the care home.
There is no need to move a dying patient to hospital at all. It's disruptive and she'll get far better care in the home.

The GP can sort out end of life medications. Have you talked to the Matron about this yet?

We're not actually at that stage, in theory she could go on for years yet but I just have a feeling something is imminent. Generally Vascular Dementia is 5 years to death and Alzheimer's is 7 years but we're already at year 8 and she's just an empty shell now. And, she's had untreatable cancer lingering somewhere in her pelvis for over 5 years. In some ways she's a medical miracle but the reality is her condition is just horrendous to see when we know what a kind and amazing lady she was.

You will be lucky to get a cup of tea, me and my mum spent 72hrs on a ward with my nan when she was dying. We slept in shifts on the plastic chairs, took it in turns going to the toilet or hospital shop ect. But I didn't have much of an appetite watching her die tbf so didn't really eat much.

But if she's in a care home they probably won't take her to hospital, they might have external hospice nurses come in.